Nutrition support in oncology care in Aotearoa New Zealand: current practice, and where to from here?
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Cancer is an important health problem in New Zealand. It has been the leading cause of deaths in New Zealand since the mid 1990s (currently accounting for around a third of yearly deaths), and yearly numbers of new registrations are increasing.[[1,2]] Good nutrition is important for cancer patients. The potential benefits include better health outcomes during treatment, improving cancer survival, and preventing recurrence.[[3–6]] Both local and international research indicate that diet and nutrition is an important factor in the preferences and needs of our communities, something the New Zealand Cancer Action Plan 2019–2029 recognises as an important factor in cancer care.[[7–11]] In fact, many cancer survivors make dietary changes at various stages of their cancer experience, including dietary supplementation and adherence to particular diets.[[12–14]]
Recent qualitative research with New Zealand cancer survivors showed that many had a strong interest in pursuing diet as a way to support cancer recovery and prevent recurrence, but they found that access to appropriate evidence-based dietary information and support was lacking.[[8]] Cancer survivors who sought out cancer-related nutrition information via the internet were exposed to misinformation. Others who were unaware of the role of nutrition in cancer recovery and prevention did not ask their healthcare providers for nutrition-related information or support nor did they seek out information about nutrition from other sources.[[8]] A lack of access to appropriate nutrition information and support potentially contributes to the persistent inequities in cancer outcomes experienced by subgroups of the New Zealand population. Including nutrition advice and support as part of the standard cancer care offered to all patients through oncology practices, as recommended by the World Cancer Research Fund (WCRF), would help people with cancer to navigate the benefits of good nutrition as part of their recovery while limiting their exposure and susceptibility to dietary information that is not evidence based.[[3]] Provision of nutrition advice/support could form part of a holistic approach to cancer care by encouraging and supporting healthy living to achieve the New Zealand Cancer Action Plan 2019–2029 goals of equitable cancer outcomes and improved cancer survival (better treatment outcomes and living well with and beyond cancer).[[7]]
However, to ensure that recommendations for the incorporation of nutrition advice/information and support into cancer care and support services are useful and achievable, it is important to first understand what is currently available to patients and to identify barriers/enablers to the provision of nutrition advice/support. This research therefore involved a survey of healthcare practitioners (HCPs) involved in cancer care and cancer support workers to identify and understand:
- What diet and nutrition-related information and support is currently available to cancer patients in New Zealand?
- What are healthcare practitioners’ perspectives of nutrition for cancer patients?
- What are the barriers to, and enablers of, the provision of nutrition information and support in cancer care?
The results of this research can be used to inform recommendations for cancer care and cancer support services, and to inform the development of nutrition-related interventions to improve health outcomes for cancer patients.
Methods
This study was approved by the University of Otago Human Ethics Committee (Health), approval number H20/036. Two online surveys were developed: one survey for medical and nursing oncology HCPs and oncology support workers (eg, Cancer Society staff, hereafter referred to as HCP/SWs), and one slightly amended survey for dietitians involved in oncology practice. The surveys included multiple choice, multiple answer, and open-ended questions related to the provision of nutrition information and support in cancer care. Demographic questions were also included to collect descriptive information about the survey participants.
Participant recruitment involved two phases. In Phase 1, an extensive internet and directory search identified publicly available oncology practitioners’ email addresses. We sent these practitioners an invitation to participate with a personal link to the survey via the RedCap survey software. Reminder emails were sent automatically via RedCap to participants who had not responded to the survey five days after the initial invitation and one week after the first reminder. This resulted in 24 completed HCP/SW surveys and four completed dietitian surveys. Phase 2 involved sending emails with information about the study and public links to the surveys to various groups, district health boards (DHBs), and administration/reception email adressess for oncology clinics, asking them to share the public link to the survey with their membership/oncology healthcare practitioner staff members. A further 44 HCP/SW surveys and 40 dietitian surveys were completed as a result of Phase 2.
The survey link took participants to an online copy of the participant information sheet and an initial question about consent to participate. Those who indicated their consent to participate were then taken to the first survey question about their profession/role with cancer patients. An introductory question was used as a screening tool to ensure only HCPs involved in cancer care would complete the survey. Participants who indicated they did not work with cancer patients received the response, “Thank you for your time. We only need practitioners who provide care for cancer patients to complete this survey,” and were not provided access to further survey questions. Participants who did work with cancer patients were linked through to the main survey questions.
Data collection was completed between September 2020 and January 2021. The survey data were analysed descriptively using Microsoft Excel Version 16.51 (2021). The analysis focused on frequencies and percentages for the different response options. Open-ended questions let participants provide further detail and/or clarify/explain their reasoning. These questions were analysed for explanatory content to help us interpret the survey results.
Results
Participant characteristics
Participant characteristics are summarised in Table 1. The survey participants (n=112) included a range of HCPs involved in cancer care, including 44 dietitians, 16 nurses, 47 specialist medical practitioners and five cancer support workers. Most (81%) were of NZ European ethnicity and 77% were female. Participants included HCPs from all New Zealand DHBs, except three smaller DHBs (Tairāwhiti, Hawke’s Bay, Whanganui). Of the HCP/SW participants, 16% (n=11) indicated they had some nutrition training.
Table 1: Description of participants.
Perspectives on nutrition for cancer patients
Participants were asked, “How important is the role of nutrition [a] in cancer recovery? [b] in preventing cancer recurrence?[and c] in overall patient wellbeing?” Ratings were recorded on a five-point Likert scale (not at all important, slightly important, moderately important, very important, extremely important). All participants rated nutrition as moderately important or higher for both cancer recovery and for overall patient wellbeing. In addition, most rated nutrition as very or extremely important for cancer recovery (74% HCP/SWs, 98% dietitians) and for overall patient wellbeing (85% HCP/SWs, 98% dietitians). Nutrition’s importance in preventing recurrence of cancer was rated as moderately important or higher by most participants (71% HCP/SWs, 91% dietitians). In response to the question, “Do you think dietary information and support should be offered to cancer patients?” all participants said nutrition information and support should be provided either always (81% HCP/SWs, 86% dietitians) or in some circumstances (19% HCP/SWs, 14% dietitians).
Participants were also asked who they thought should provide nutrition information and support to cancer patients. Dietitians’ and HCP/SWs’ answers were very similar for this question and have therefore been combined. Many of the participants (66%) selected more than one option, indicating that nutrition information and support should be available from more than one type of practitioner. Most (95%) of the participants indicated that nutrition information and support should be provided by an oncology dietitian (29% oncology dietitian only, 66% oncology dietitian and other HCP). Other options selected were oncology nurse (54%), specialist doctor (45%), cancer support services (36%), and other (21%).
Provision of nutrition advice/information and support
Nutrition advice/information and support from HCP/SWs
Table 2 outlines details about which patients HCP/SWs give nutrition advice/information to. Most (94%) of the HCP/SWs indicated they provide nutrition advice/information to at least some of the patients in their care (37% to all patients and 57% to specific patients only). Most commonly they provided nutrition advice/information to patients who ask about nutrition (46%) and patients with poor nutritional status (38%). All the HCP/SWs who had some nutrition training (n=11) gave nutrition advice/information to their patients (55% to all patients and 45% to specific patients). Fewer participants provided ongoing nutrition support. Only 12% of HCP/SWs indicated that they provide access to ongoing nutrition support to all patients, and 66% indicated they provide ongoing nutrition support to specific patients (most commonly patients with or at risk of poor nutritional status (60%) and patients who ask (43%)). A considerable number (21%) of HCP/SWs indicated they did not provide access to ongoing nutritional support to their patients at all.
Table 2: Access to nutrition advice/information and support from HCP/SWs (n=68).
Although poor nutritional status was the main reason for providing nutrition support, only 38% of HCP/SWs used detailed nutrition assessments. Most (76%) used body weight to assess nutritional status, and 18% did not assess nutritional status. Other forms of assessment reported (19% of HCP/SWs) included screening for malnutrition, assessment of wellbeing/functioning, blood tests/biochemistry and clinical examination.
All 53 HCP/SWs who provided access to ongoing nutrition support were able to refer patients to a dietitian (75% of these were able to refer to a dietitian specialising in oncology practice). In addition, some provided ongoing support themselves (21%) or via another practitioner in the same clinic (13%), and 30% indicated they had information/booklets available to patients in the waiting area. Support groups for nutrition support were not widely available (4%).
Nutrition advice/information and support from dietitians
The most common way of entering dietitian care was via referral from a nurse (98%) or a secondary/tertiary care specialist doctor (91%). Other referrals were from a general practitioner (48%), other health professional (18%) or other dietitian (11%), or via self-referral (36%). Table 3 outlines information from the dietitians’ survey about the cancer patients who enter their care. Most dietitians indicated they saw patients with specific nutritional needs due to cancer or treatment effects (98%) and patients with poor nutritional status (95%). In addition, 50% of dietitians indicated they saw patients who asked about nutrition for cancer recovery and/or prevention of recurrence. Similarly, dietitians were most commonly asked for advice/information about managing symptoms/treatment effects (95%) and weight maintenance (91%), whereas just over half (55%) were asked about nutrition for cancer recovery/prevention of recurrence.
Table 3: Nutrition advice/information and support from dietitians. View Table 3.
Only 16% of dietitians provided ongoing support to all patients, and 14% did not provide ongoing support to any patients. The majority (68%) indicated that ongoing support was only available to specific patients, mostly those with poor nutritional status (64%) and those who ask for nutrition/diet support (34%). In contrast to HCP/SWs, all dietitian participants assessed each patient’s nutritional status using a detailed nutrition assessment, and most (80%) combined this with regular monitoring of body weight. Comments made in the open-ended sections of the survey explained the reason(s) for the limited availability of ongoing support. For example, one dietitian stated: “We are very busy and under-resourced so patients may be seen just once or twice. Those with clear malnutrition have more follow up.” Another dietitian shared: “Being unable to provide care to all those who are referred to me due to lack of capacity and long wait-times to be seen is a weighty ethical and moral burden.” When ongoing support was provided, it was mostly provided by the dietitian themselves (81%) or by referral to a community dietitian (54%).
Funding for nutrition support
Most (79%) of the participants who provided access to nutrition-related support indicated that this support was part of public healthcare with no cost to patients, and 2% said it was funded by the Cancer Society. A small number were privately funded (12%) or partially funded (4%).
Regional differences in provision of support
HCP/SWs who worked in DHBs based in larger centres (eg, Auckland, Waikato, MidCentral, Capital & Coast, Canterbury, Southern) were more likely to be able to refer patients to a dietitian (including access to a specialised oncology dietitian). In contrast, HCPs based in smaller/rural DHBs could not refer patients to an oncology dietitian, and some had no/limited ability to refer to a dietitian.
Differences between public and private sectors
We asked participants who worked in both public and private sectors to comment on the differences in nutrition services (advice/information/support) offered to patients in each sector. Analysis of the comments revealed that most (but not all) had better access to a dietitian when working in their private practice, indicating they were able to refer all or most private patients to a dietitian. Some private oncology clinics had an in-house dietitian who would see every patient. Access to dietitians in public practice was not readily available unless patients met strict criteria for referral, described by one participant as “near impossible” to fulfil.
A comparison of public-only and private-only HCPs’ survey answers confirm comments about access to oncology dietitians in private practice (all could refer to an oncology dietitian and most of these were in-house) compared to public practice (60% could refer to an oncology dietitian, 23% could refer to a general dietitian, 17% no support provided). In addition, a higher proportion (33%) of private-only HCPs indicated that nutrition support was available to all patients compared to public-only HCPs (10%). Although the majority of dietitians (in both public and private sectors) saw patients with specific nutritional needs due to cancer or treatment effects and patients with poor nutritional status, dietitians working in private healthcare were more likely to also see other types of patients (eg, patients who ask about nutrition for cancer recovery/prevention of recurrence, patients who are overweight/obese, patients with specific nutrition needs due to other coexisting health conditions). Dietitians working in private healthcare were also more likely to advise patients to follow the WCRF dietary recommendations and inform them of what to eat for ongoing health and cancer risk prevention.
Type and sources of nutrition advice/information
Table 4 outlines details about the types and sources of nutrition advice/information that HCPs and support workers provided. HCP/SWs mainly gave patients general advice/information about healthy eating (83%) or eating during treatment (77%), whereas most dietitians gave specific nutrition information related to cancer treatment (91%), general advice about eating during treatment (80%), and specific information to aid cancer recovery (66%). Fewer participants provided specific information about nutrition for ongoing health/reduction of risk for cancer recurrence (30% for both HCP/SWs and dietitians), and only dietitians (32%) advised patients to follow the WCRF recommendations. HCP/SWs were most likely to give verbal advice/information (98%) and 50% provided pamphlets or information sheets. All dietitians gave patients both verbal advice/information and pamphlets/information sheets. Reference to online resources was less common (HCP/SWs 8%, dietitians 25%). Most dietitians (93%) used practice evidence-based nutrition as a source for advice/information given to patients, with other common sources including peer-reviewed publications (52%), the New Zealand Cancer Society (48%), best practice guidelines (43%) and the WCRF (41%). The main sources of information used by HCP/SWs included peer-reviewed publications (39%) and the New Zealand Cancer Society (38%).
Table 4: Type and sources of nutrition advice/information provided. View Table 4.
Barriers to providing nutrition information and support to cancer patients
Figure 1 gives an overview of the barriers to providing cancer patients with nutrition information and support according to HCP/SWs and dietitians. The main barriers to providing nutrition information and support can be grouped into two main categories: those relating to the current funding model (lack of time, funding, or staff capacity) and those related to expertise/access to information (not my area of expertise, no-one with expertise available, lack of evidence-based resources).
Barriers related to the current funding model were a problem for HCP/SWs and dietitians alike (82% of all participants), whereas barriers related to expertise/access to information were more common for HCP/SWs (76%) compared to dietitians (14%). Comments made in open-ended sections of the survey confirm that limited funding (and the resulting lack of capacity) is a major barrier to providing patient access to advice and support from a dietitian. As one dietitian commented: “Ideally all cancer patients should have the ability to receive dietary advice—ideally from a dietitian. However, in a public hospital setting this would require far more dietitians than we currently have available so therefore only those already struggling get seen.” Similar comments were made by non-dietitian HCPs. For example: “Ideally we would refer all oncology patients to a dietitian and almost all patients ask for that, but we don't have the ability to do that in public practice.” And: “Insufficient publicly funded specialist nutritional advice available. If all patients who could benefit were referred service would be overloaded.” Concern about overloading patients with information was an additional barrier for some participants (38%).
Figure 1: Barriers to providing nutrition information and support.
Enabling nutrition information and support for cancer patients
Access to reliable, evidence-based resources (eg, booklets, information sheets, online resources) was the most-selected enabler for HCP/SWs (78%) and was also selected as helpful by many dietitians (61%). Most dietitians (89%) and HCP/SWs (74%) indicated that funding support for all patients to see an oncology dietitian would be helpful. Support services that provide cancer-specific dietary information and support (eg, seminars, support groups led by dietitian) was also relatively popular with HCP/SWs (63%).
Some participants (15% of HCP/SWs, 20% of dietitians) made other suggestions/comments about what would be helpful. The more common suggestions related to increased funding support for dietitians (but not necessarily to see all patients). Other suggestions related to training/development in oncology nutrition (eg, specialised oncology training for dietitians, training for HCPs from an oncology dietitian, nutrition training for radiation therapists, courses/conferences on nutrition for cancer). Dietitians also suggested ways to ensure equal information/access across New Zealand (eg, all oncology services have an in-house dietitian, better screening and referral pathways, evidence-based position statements on specific foods/diets to help streamline advice given and combat misinformation) and to improve continuity of care (eg, better communication between primary and secondary/tertiary care, funding for oncology dietitian to be available across inpatient/outpatient and community follow-up care).
Discussion
Access to nutrition advice/information and support is limited in New Zealand cancer care and support services. Our results indicate that, although most HCPs working with cancer patients agree that nutrition is very important for patient wellbeing and recovery from cancer and at least moderately important for preventing recurrence, specialist nutrition advice and support from a qualified dietitian is mainly limited to patients at the highest risk of malnutrition and those who can afford private healthcare. In addition, these results indicate that many cancer patients will not receive nutrition advice/information from doctors, nurses, or support workers either. This lack of access to cancer-related nutrition information and support for people with cancer is likely to have a negative impact on cancer outcomes and contribute to inequities in outcomes experienced by some groups compared to others.
The differences in the provision of advice/information and access to nutrition-related support identified in this study (eg, differences by individual practitioner, region/DHB, public/private practice, relying on patients to ask for information) will also contribute to inequities in cancer outcomes by favouring those with more advanced health-literacy skills and better socioeconomic circumstances. Health literacy (defined by the World Health Organization as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”[[15]]) is an important factor in determining health outcomes. People with limited health literacy are more likely to have poor health outcomes.[[16–18]] Health literacy empowers patients to effectively access and use health information.[[15]] Health literacy and ability to gain benefit from health literacy skills are impacted by factors such as socioeconomic status, access to social support, language/literacy skills, assertiveness, education and culture, as well as healthcare system/HCP factors.[[16]] Healthcare practitioners can contribute to patients’ health literacy by ensuring information (and support) is offered, readily accessible, easy to understand, and culturally appropriate. It is important not to wait for patients to ask for nutrition information/support because, for a variety of reasons (eg, social/cultural norms, language barriers, not aware that nutrition is important for cancer outcomes, not aware of support available), many patients will not ask for nutrition information or support if it is not offered.[[8,19–23]]
Prior research has indicated that many people with cancer are particularly open to and interested in receiving advice about how they can support their recovery with healthy eating.[[8–10]] This creates opportunities to impart healthy eating advice not only to support better cancer outcomes, but also to improve overall health beyond cancer. Ideally, advice and information should be tailored to cancer type, treatment, and individual patient needs to gain maximal benefits. A dietitian knowledgeable in the specific nutrition needs of cancer patients would be best placed to help patients navigate this area. Dietitians are also able to adapt dietary requirements to a patient’s family and cultural contexts, and personal food preferences. However, recent research with New Zealand cancer survivors revealed that patients who are not told about nutrition by the specialist doctor treating their cancer may interpret that to mean that nutrition is not important for cancer (or for their particular type of cancer), illustrating that HCP/SWs also have an important role in sharing the message about nutrition.[[8]] The World Cancer Research Fund/American Institute for Cancer Research cancer prevention recommendations outlined in Table 5 include advice about nutrition. Generic information suitable for patients is available from the Cancer Society of New Zealand (https://www.cancer.org.nz/assets/Downloads/Eating-well-with-cancer/Info-Sheet-healthy-eating-and-cancer-treatment.pdf and https://www.cancer.org.nz/cancer/living-with-cancer/eating-well-with-cancer/).
Table 5: WCRF/AICR cancer prevention recommendations.[[a]] View Table 5.
In addition to lack of funding, other barriers impacted by the current funding model for cancer care (eg, lack of time/capacity) were commonly reported by participants. These results are indicative of an overburdened, underfunded healthcare system where not all patients have access to the same services and many patients who would benefit from nutrition information and support miss out. The number of people diagnosed with cancer in New Zealand is growing,[[1]] which will only put further strain on already stretched services. Improving access to nutrition advice and support has the potential to not only improve patients’ treatment outcomes but also reduce the number of patients returning into the system with cancer (cancer recurrence) or other non-communicable diseases.[[3,4,6,24]] The recently announced New Zealand health system reforms[[25]] will include changing to a single nationwide system. This is an opportunity to standardise and strengthen cancer care services and make provisions to include better access to nutrition information and support as part of an equity- and needs-focused holistic approach.
Strengths and limitations
This study has several strengths. Although we were unable to ascertain a response rate due to the nature of our sampling, we had responses from a wide range of participants and a good total number of responses. This included representative responses from medical, nursing, support, and dietetic practitioners from 17 of the 20 DHBs (and all tertiary cancer care services) and from public and private practice. In addition, the survey data are supported by open-ended responses that enable a more comprehensive understanding of the topic. A limitation of this study is that HCPs who responded to the survey are likely to have an interest in food and nutrition. The results may over-estimate the nutrition information/support provided and HCP views on the importance of nutrition in cancer care. We also did not survey primary care practitioners. This limited the information we found about nutrition support occurring in primary care.
Conclusions and recommendations
Based on these findings, we recommend a standardised system across all New Zealand’s oncology services that incorporates general introductory advice/information about nutrition (eg, the WCRF dietary recommendations) from all HCPs and more detailed tailored advice (and ongoing support where needed) from dietitians to support the recovery and ongoing health of people diagnosed with cancer. Ideally all patients should have the opportunity to access at least some tailored nutrition advice/information (specific to cancer and treatment type and tailored to individual health and cultural needs) from a dietitian. Such advice/information might be enough to meet the needs of some patients, while others will need more ongoing support from a dietitian and/or other forms of support (eg, financial or practical support) to enable them to successfully incorporate recommendations into their daily lives. Cancer support services could play an important role in providing additional financial (eg, vouchers, foodbanks, supply of fruit/vegetables) and practical (eg, dietitian-led support groups, healthy cooking workshops, access to healthy pre-prepared meals) support for those who need it. Qualitative research to better understand HCP perspectives and barriers/enablers to provision of nutrition information and support in cancer care will help to inform the development of interventions and determine how to best to integrate nutrition into cancer care. Work is also needed to develop and test the impact of potential interventions on cancer outcomes and to understand the long-term health and economic benefits of proposed changes.
Summary
Abstract
Aim
This research sought to identify and understand what nutrition-related information and support is available to people undergoing cancer treatment. We also sought the views on nutrition for cancer among providers of cancer care/support, and barriers/enablers to the provision of nutrition information/support.
Method
Data were collected using online surveys with New Zealand-based healthcare practitioners and support workers. Descriptive analysis was undertaken. Open-ended questions were analysed for explanatory content to help us interpret and understand the results.
Results
Most healthcare practitioners and support workers viewed nutrition as at least moderately important (for cancer recovery, patient wellbeing and preventing cancer recurrence) and believed nutrition information/support should be provided to cancer patients. However, nutrition information and support were not widely available through oncology practices and cancer support services. The main barriers to the provision of nutrition information and support (including access to dietitian appointments) were insufficient funding and lack of time/staff capacity. Additional barriers included a lack of access to evidence-based information and dietary expertise.
Conclusion
Nutrition information and support needs to be more widely available and standardised across New Zealand’s oncology services. Ideally this would include general introductory information about nutrition (eg, World Cancer Research Fund recommendations) from all healthcare practitioners and more detailed tailored advice (and ongoing support where needed) from dietitians.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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Nutrition support in oncology care in Aotearoa New Zealand: current practice, and where to from here?
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Cancer is an important health problem in New Zealand. It has been the leading cause of deaths in New Zealand since the mid 1990s (currently accounting for around a third of yearly deaths), and yearly numbers of new registrations are increasing.[[1,2]] Good nutrition is important for cancer patients. The potential benefits include better health outcomes during treatment, improving cancer survival, and preventing recurrence.[[3–6]] Both local and international research indicate that diet and nutrition is an important factor in the preferences and needs of our communities, something the New Zealand Cancer Action Plan 2019–2029 recognises as an important factor in cancer care.[[7–11]] In fact, many cancer survivors make dietary changes at various stages of their cancer experience, including dietary supplementation and adherence to particular diets.[[12–14]]
Recent qualitative research with New Zealand cancer survivors showed that many had a strong interest in pursuing diet as a way to support cancer recovery and prevent recurrence, but they found that access to appropriate evidence-based dietary information and support was lacking.[[8]] Cancer survivors who sought out cancer-related nutrition information via the internet were exposed to misinformation. Others who were unaware of the role of nutrition in cancer recovery and prevention did not ask their healthcare providers for nutrition-related information or support nor did they seek out information about nutrition from other sources.[[8]] A lack of access to appropriate nutrition information and support potentially contributes to the persistent inequities in cancer outcomes experienced by subgroups of the New Zealand population. Including nutrition advice and support as part of the standard cancer care offered to all patients through oncology practices, as recommended by the World Cancer Research Fund (WCRF), would help people with cancer to navigate the benefits of good nutrition as part of their recovery while limiting their exposure and susceptibility to dietary information that is not evidence based.[[3]] Provision of nutrition advice/support could form part of a holistic approach to cancer care by encouraging and supporting healthy living to achieve the New Zealand Cancer Action Plan 2019–2029 goals of equitable cancer outcomes and improved cancer survival (better treatment outcomes and living well with and beyond cancer).[[7]]
However, to ensure that recommendations for the incorporation of nutrition advice/information and support into cancer care and support services are useful and achievable, it is important to first understand what is currently available to patients and to identify barriers/enablers to the provision of nutrition advice/support. This research therefore involved a survey of healthcare practitioners (HCPs) involved in cancer care and cancer support workers to identify and understand:
- What diet and nutrition-related information and support is currently available to cancer patients in New Zealand?
- What are healthcare practitioners’ perspectives of nutrition for cancer patients?
- What are the barriers to, and enablers of, the provision of nutrition information and support in cancer care?
The results of this research can be used to inform recommendations for cancer care and cancer support services, and to inform the development of nutrition-related interventions to improve health outcomes for cancer patients.
Methods
This study was approved by the University of Otago Human Ethics Committee (Health), approval number H20/036. Two online surveys were developed: one survey for medical and nursing oncology HCPs and oncology support workers (eg, Cancer Society staff, hereafter referred to as HCP/SWs), and one slightly amended survey for dietitians involved in oncology practice. The surveys included multiple choice, multiple answer, and open-ended questions related to the provision of nutrition information and support in cancer care. Demographic questions were also included to collect descriptive information about the survey participants.
Participant recruitment involved two phases. In Phase 1, an extensive internet and directory search identified publicly available oncology practitioners’ email addresses. We sent these practitioners an invitation to participate with a personal link to the survey via the RedCap survey software. Reminder emails were sent automatically via RedCap to participants who had not responded to the survey five days after the initial invitation and one week after the first reminder. This resulted in 24 completed HCP/SW surveys and four completed dietitian surveys. Phase 2 involved sending emails with information about the study and public links to the surveys to various groups, district health boards (DHBs), and administration/reception email adressess for oncology clinics, asking them to share the public link to the survey with their membership/oncology healthcare practitioner staff members. A further 44 HCP/SW surveys and 40 dietitian surveys were completed as a result of Phase 2.
The survey link took participants to an online copy of the participant information sheet and an initial question about consent to participate. Those who indicated their consent to participate were then taken to the first survey question about their profession/role with cancer patients. An introductory question was used as a screening tool to ensure only HCPs involved in cancer care would complete the survey. Participants who indicated they did not work with cancer patients received the response, “Thank you for your time. We only need practitioners who provide care for cancer patients to complete this survey,” and were not provided access to further survey questions. Participants who did work with cancer patients were linked through to the main survey questions.
Data collection was completed between September 2020 and January 2021. The survey data were analysed descriptively using Microsoft Excel Version 16.51 (2021). The analysis focused on frequencies and percentages for the different response options. Open-ended questions let participants provide further detail and/or clarify/explain their reasoning. These questions were analysed for explanatory content to help us interpret the survey results.
Results
Participant characteristics
Participant characteristics are summarised in Table 1. The survey participants (n=112) included a range of HCPs involved in cancer care, including 44 dietitians, 16 nurses, 47 specialist medical practitioners and five cancer support workers. Most (81%) were of NZ European ethnicity and 77% were female. Participants included HCPs from all New Zealand DHBs, except three smaller DHBs (Tairāwhiti, Hawke’s Bay, Whanganui). Of the HCP/SW participants, 16% (n=11) indicated they had some nutrition training.
Table 1: Description of participants.
Perspectives on nutrition for cancer patients
Participants were asked, “How important is the role of nutrition [a] in cancer recovery? [b] in preventing cancer recurrence?[and c] in overall patient wellbeing?” Ratings were recorded on a five-point Likert scale (not at all important, slightly important, moderately important, very important, extremely important). All participants rated nutrition as moderately important or higher for both cancer recovery and for overall patient wellbeing. In addition, most rated nutrition as very or extremely important for cancer recovery (74% HCP/SWs, 98% dietitians) and for overall patient wellbeing (85% HCP/SWs, 98% dietitians). Nutrition’s importance in preventing recurrence of cancer was rated as moderately important or higher by most participants (71% HCP/SWs, 91% dietitians). In response to the question, “Do you think dietary information and support should be offered to cancer patients?” all participants said nutrition information and support should be provided either always (81% HCP/SWs, 86% dietitians) or in some circumstances (19% HCP/SWs, 14% dietitians).
Participants were also asked who they thought should provide nutrition information and support to cancer patients. Dietitians’ and HCP/SWs’ answers were very similar for this question and have therefore been combined. Many of the participants (66%) selected more than one option, indicating that nutrition information and support should be available from more than one type of practitioner. Most (95%) of the participants indicated that nutrition information and support should be provided by an oncology dietitian (29% oncology dietitian only, 66% oncology dietitian and other HCP). Other options selected were oncology nurse (54%), specialist doctor (45%), cancer support services (36%), and other (21%).
Provision of nutrition advice/information and support
Nutrition advice/information and support from HCP/SWs
Table 2 outlines details about which patients HCP/SWs give nutrition advice/information to. Most (94%) of the HCP/SWs indicated they provide nutrition advice/information to at least some of the patients in their care (37% to all patients and 57% to specific patients only). Most commonly they provided nutrition advice/information to patients who ask about nutrition (46%) and patients with poor nutritional status (38%). All the HCP/SWs who had some nutrition training (n=11) gave nutrition advice/information to their patients (55% to all patients and 45% to specific patients). Fewer participants provided ongoing nutrition support. Only 12% of HCP/SWs indicated that they provide access to ongoing nutrition support to all patients, and 66% indicated they provide ongoing nutrition support to specific patients (most commonly patients with or at risk of poor nutritional status (60%) and patients who ask (43%)). A considerable number (21%) of HCP/SWs indicated they did not provide access to ongoing nutritional support to their patients at all.
Table 2: Access to nutrition advice/information and support from HCP/SWs (n=68).
Although poor nutritional status was the main reason for providing nutrition support, only 38% of HCP/SWs used detailed nutrition assessments. Most (76%) used body weight to assess nutritional status, and 18% did not assess nutritional status. Other forms of assessment reported (19% of HCP/SWs) included screening for malnutrition, assessment of wellbeing/functioning, blood tests/biochemistry and clinical examination.
All 53 HCP/SWs who provided access to ongoing nutrition support were able to refer patients to a dietitian (75% of these were able to refer to a dietitian specialising in oncology practice). In addition, some provided ongoing support themselves (21%) or via another practitioner in the same clinic (13%), and 30% indicated they had information/booklets available to patients in the waiting area. Support groups for nutrition support were not widely available (4%).
Nutrition advice/information and support from dietitians
The most common way of entering dietitian care was via referral from a nurse (98%) or a secondary/tertiary care specialist doctor (91%). Other referrals were from a general practitioner (48%), other health professional (18%) or other dietitian (11%), or via self-referral (36%). Table 3 outlines information from the dietitians’ survey about the cancer patients who enter their care. Most dietitians indicated they saw patients with specific nutritional needs due to cancer or treatment effects (98%) and patients with poor nutritional status (95%). In addition, 50% of dietitians indicated they saw patients who asked about nutrition for cancer recovery and/or prevention of recurrence. Similarly, dietitians were most commonly asked for advice/information about managing symptoms/treatment effects (95%) and weight maintenance (91%), whereas just over half (55%) were asked about nutrition for cancer recovery/prevention of recurrence.
Table 3: Nutrition advice/information and support from dietitians. View Table 3.
Only 16% of dietitians provided ongoing support to all patients, and 14% did not provide ongoing support to any patients. The majority (68%) indicated that ongoing support was only available to specific patients, mostly those with poor nutritional status (64%) and those who ask for nutrition/diet support (34%). In contrast to HCP/SWs, all dietitian participants assessed each patient’s nutritional status using a detailed nutrition assessment, and most (80%) combined this with regular monitoring of body weight. Comments made in the open-ended sections of the survey explained the reason(s) for the limited availability of ongoing support. For example, one dietitian stated: “We are very busy and under-resourced so patients may be seen just once or twice. Those with clear malnutrition have more follow up.” Another dietitian shared: “Being unable to provide care to all those who are referred to me due to lack of capacity and long wait-times to be seen is a weighty ethical and moral burden.” When ongoing support was provided, it was mostly provided by the dietitian themselves (81%) or by referral to a community dietitian (54%).
Funding for nutrition support
Most (79%) of the participants who provided access to nutrition-related support indicated that this support was part of public healthcare with no cost to patients, and 2% said it was funded by the Cancer Society. A small number were privately funded (12%) or partially funded (4%).
Regional differences in provision of support
HCP/SWs who worked in DHBs based in larger centres (eg, Auckland, Waikato, MidCentral, Capital & Coast, Canterbury, Southern) were more likely to be able to refer patients to a dietitian (including access to a specialised oncology dietitian). In contrast, HCPs based in smaller/rural DHBs could not refer patients to an oncology dietitian, and some had no/limited ability to refer to a dietitian.
Differences between public and private sectors
We asked participants who worked in both public and private sectors to comment on the differences in nutrition services (advice/information/support) offered to patients in each sector. Analysis of the comments revealed that most (but not all) had better access to a dietitian when working in their private practice, indicating they were able to refer all or most private patients to a dietitian. Some private oncology clinics had an in-house dietitian who would see every patient. Access to dietitians in public practice was not readily available unless patients met strict criteria for referral, described by one participant as “near impossible” to fulfil.
A comparison of public-only and private-only HCPs’ survey answers confirm comments about access to oncology dietitians in private practice (all could refer to an oncology dietitian and most of these were in-house) compared to public practice (60% could refer to an oncology dietitian, 23% could refer to a general dietitian, 17% no support provided). In addition, a higher proportion (33%) of private-only HCPs indicated that nutrition support was available to all patients compared to public-only HCPs (10%). Although the majority of dietitians (in both public and private sectors) saw patients with specific nutritional needs due to cancer or treatment effects and patients with poor nutritional status, dietitians working in private healthcare were more likely to also see other types of patients (eg, patients who ask about nutrition for cancer recovery/prevention of recurrence, patients who are overweight/obese, patients with specific nutrition needs due to other coexisting health conditions). Dietitians working in private healthcare were also more likely to advise patients to follow the WCRF dietary recommendations and inform them of what to eat for ongoing health and cancer risk prevention.
Type and sources of nutrition advice/information
Table 4 outlines details about the types and sources of nutrition advice/information that HCPs and support workers provided. HCP/SWs mainly gave patients general advice/information about healthy eating (83%) or eating during treatment (77%), whereas most dietitians gave specific nutrition information related to cancer treatment (91%), general advice about eating during treatment (80%), and specific information to aid cancer recovery (66%). Fewer participants provided specific information about nutrition for ongoing health/reduction of risk for cancer recurrence (30% for both HCP/SWs and dietitians), and only dietitians (32%) advised patients to follow the WCRF recommendations. HCP/SWs were most likely to give verbal advice/information (98%) and 50% provided pamphlets or information sheets. All dietitians gave patients both verbal advice/information and pamphlets/information sheets. Reference to online resources was less common (HCP/SWs 8%, dietitians 25%). Most dietitians (93%) used practice evidence-based nutrition as a source for advice/information given to patients, with other common sources including peer-reviewed publications (52%), the New Zealand Cancer Society (48%), best practice guidelines (43%) and the WCRF (41%). The main sources of information used by HCP/SWs included peer-reviewed publications (39%) and the New Zealand Cancer Society (38%).
Table 4: Type and sources of nutrition advice/information provided. View Table 4.
Barriers to providing nutrition information and support to cancer patients
Figure 1 gives an overview of the barriers to providing cancer patients with nutrition information and support according to HCP/SWs and dietitians. The main barriers to providing nutrition information and support can be grouped into two main categories: those relating to the current funding model (lack of time, funding, or staff capacity) and those related to expertise/access to information (not my area of expertise, no-one with expertise available, lack of evidence-based resources).
Barriers related to the current funding model were a problem for HCP/SWs and dietitians alike (82% of all participants), whereas barriers related to expertise/access to information were more common for HCP/SWs (76%) compared to dietitians (14%). Comments made in open-ended sections of the survey confirm that limited funding (and the resulting lack of capacity) is a major barrier to providing patient access to advice and support from a dietitian. As one dietitian commented: “Ideally all cancer patients should have the ability to receive dietary advice—ideally from a dietitian. However, in a public hospital setting this would require far more dietitians than we currently have available so therefore only those already struggling get seen.” Similar comments were made by non-dietitian HCPs. For example: “Ideally we would refer all oncology patients to a dietitian and almost all patients ask for that, but we don't have the ability to do that in public practice.” And: “Insufficient publicly funded specialist nutritional advice available. If all patients who could benefit were referred service would be overloaded.” Concern about overloading patients with information was an additional barrier for some participants (38%).
Figure 1: Barriers to providing nutrition information and support.
Enabling nutrition information and support for cancer patients
Access to reliable, evidence-based resources (eg, booklets, information sheets, online resources) was the most-selected enabler for HCP/SWs (78%) and was also selected as helpful by many dietitians (61%). Most dietitians (89%) and HCP/SWs (74%) indicated that funding support for all patients to see an oncology dietitian would be helpful. Support services that provide cancer-specific dietary information and support (eg, seminars, support groups led by dietitian) was also relatively popular with HCP/SWs (63%).
Some participants (15% of HCP/SWs, 20% of dietitians) made other suggestions/comments about what would be helpful. The more common suggestions related to increased funding support for dietitians (but not necessarily to see all patients). Other suggestions related to training/development in oncology nutrition (eg, specialised oncology training for dietitians, training for HCPs from an oncology dietitian, nutrition training for radiation therapists, courses/conferences on nutrition for cancer). Dietitians also suggested ways to ensure equal information/access across New Zealand (eg, all oncology services have an in-house dietitian, better screening and referral pathways, evidence-based position statements on specific foods/diets to help streamline advice given and combat misinformation) and to improve continuity of care (eg, better communication between primary and secondary/tertiary care, funding for oncology dietitian to be available across inpatient/outpatient and community follow-up care).
Discussion
Access to nutrition advice/information and support is limited in New Zealand cancer care and support services. Our results indicate that, although most HCPs working with cancer patients agree that nutrition is very important for patient wellbeing and recovery from cancer and at least moderately important for preventing recurrence, specialist nutrition advice and support from a qualified dietitian is mainly limited to patients at the highest risk of malnutrition and those who can afford private healthcare. In addition, these results indicate that many cancer patients will not receive nutrition advice/information from doctors, nurses, or support workers either. This lack of access to cancer-related nutrition information and support for people with cancer is likely to have a negative impact on cancer outcomes and contribute to inequities in outcomes experienced by some groups compared to others.
The differences in the provision of advice/information and access to nutrition-related support identified in this study (eg, differences by individual practitioner, region/DHB, public/private practice, relying on patients to ask for information) will also contribute to inequities in cancer outcomes by favouring those with more advanced health-literacy skills and better socioeconomic circumstances. Health literacy (defined by the World Health Organization as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”[[15]]) is an important factor in determining health outcomes. People with limited health literacy are more likely to have poor health outcomes.[[16–18]] Health literacy empowers patients to effectively access and use health information.[[15]] Health literacy and ability to gain benefit from health literacy skills are impacted by factors such as socioeconomic status, access to social support, language/literacy skills, assertiveness, education and culture, as well as healthcare system/HCP factors.[[16]] Healthcare practitioners can contribute to patients’ health literacy by ensuring information (and support) is offered, readily accessible, easy to understand, and culturally appropriate. It is important not to wait for patients to ask for nutrition information/support because, for a variety of reasons (eg, social/cultural norms, language barriers, not aware that nutrition is important for cancer outcomes, not aware of support available), many patients will not ask for nutrition information or support if it is not offered.[[8,19–23]]
Prior research has indicated that many people with cancer are particularly open to and interested in receiving advice about how they can support their recovery with healthy eating.[[8–10]] This creates opportunities to impart healthy eating advice not only to support better cancer outcomes, but also to improve overall health beyond cancer. Ideally, advice and information should be tailored to cancer type, treatment, and individual patient needs to gain maximal benefits. A dietitian knowledgeable in the specific nutrition needs of cancer patients would be best placed to help patients navigate this area. Dietitians are also able to adapt dietary requirements to a patient’s family and cultural contexts, and personal food preferences. However, recent research with New Zealand cancer survivors revealed that patients who are not told about nutrition by the specialist doctor treating their cancer may interpret that to mean that nutrition is not important for cancer (or for their particular type of cancer), illustrating that HCP/SWs also have an important role in sharing the message about nutrition.[[8]] The World Cancer Research Fund/American Institute for Cancer Research cancer prevention recommendations outlined in Table 5 include advice about nutrition. Generic information suitable for patients is available from the Cancer Society of New Zealand (https://www.cancer.org.nz/assets/Downloads/Eating-well-with-cancer/Info-Sheet-healthy-eating-and-cancer-treatment.pdf and https://www.cancer.org.nz/cancer/living-with-cancer/eating-well-with-cancer/).
Table 5: WCRF/AICR cancer prevention recommendations.[[a]] View Table 5.
In addition to lack of funding, other barriers impacted by the current funding model for cancer care (eg, lack of time/capacity) were commonly reported by participants. These results are indicative of an overburdened, underfunded healthcare system where not all patients have access to the same services and many patients who would benefit from nutrition information and support miss out. The number of people diagnosed with cancer in New Zealand is growing,[[1]] which will only put further strain on already stretched services. Improving access to nutrition advice and support has the potential to not only improve patients’ treatment outcomes but also reduce the number of patients returning into the system with cancer (cancer recurrence) or other non-communicable diseases.[[3,4,6,24]] The recently announced New Zealand health system reforms[[25]] will include changing to a single nationwide system. This is an opportunity to standardise and strengthen cancer care services and make provisions to include better access to nutrition information and support as part of an equity- and needs-focused holistic approach.
Strengths and limitations
This study has several strengths. Although we were unable to ascertain a response rate due to the nature of our sampling, we had responses from a wide range of participants and a good total number of responses. This included representative responses from medical, nursing, support, and dietetic practitioners from 17 of the 20 DHBs (and all tertiary cancer care services) and from public and private practice. In addition, the survey data are supported by open-ended responses that enable a more comprehensive understanding of the topic. A limitation of this study is that HCPs who responded to the survey are likely to have an interest in food and nutrition. The results may over-estimate the nutrition information/support provided and HCP views on the importance of nutrition in cancer care. We also did not survey primary care practitioners. This limited the information we found about nutrition support occurring in primary care.
Conclusions and recommendations
Based on these findings, we recommend a standardised system across all New Zealand’s oncology services that incorporates general introductory advice/information about nutrition (eg, the WCRF dietary recommendations) from all HCPs and more detailed tailored advice (and ongoing support where needed) from dietitians to support the recovery and ongoing health of people diagnosed with cancer. Ideally all patients should have the opportunity to access at least some tailored nutrition advice/information (specific to cancer and treatment type and tailored to individual health and cultural needs) from a dietitian. Such advice/information might be enough to meet the needs of some patients, while others will need more ongoing support from a dietitian and/or other forms of support (eg, financial or practical support) to enable them to successfully incorporate recommendations into their daily lives. Cancer support services could play an important role in providing additional financial (eg, vouchers, foodbanks, supply of fruit/vegetables) and practical (eg, dietitian-led support groups, healthy cooking workshops, access to healthy pre-prepared meals) support for those who need it. Qualitative research to better understand HCP perspectives and barriers/enablers to provision of nutrition information and support in cancer care will help to inform the development of interventions and determine how to best to integrate nutrition into cancer care. Work is also needed to develop and test the impact of potential interventions on cancer outcomes and to understand the long-term health and economic benefits of proposed changes.
Summary
Abstract
Aim
This research sought to identify and understand what nutrition-related information and support is available to people undergoing cancer treatment. We also sought the views on nutrition for cancer among providers of cancer care/support, and barriers/enablers to the provision of nutrition information/support.
Method
Data were collected using online surveys with New Zealand-based healthcare practitioners and support workers. Descriptive analysis was undertaken. Open-ended questions were analysed for explanatory content to help us interpret and understand the results.
Results
Most healthcare practitioners and support workers viewed nutrition as at least moderately important (for cancer recovery, patient wellbeing and preventing cancer recurrence) and believed nutrition information/support should be provided to cancer patients. However, nutrition information and support were not widely available through oncology practices and cancer support services. The main barriers to the provision of nutrition information and support (including access to dietitian appointments) were insufficient funding and lack of time/staff capacity. Additional barriers included a lack of access to evidence-based information and dietary expertise.
Conclusion
Nutrition information and support needs to be more widely available and standardised across New Zealand’s oncology services. Ideally this would include general introductory information about nutrition (eg, World Cancer Research Fund recommendations) from all healthcare practitioners and more detailed tailored advice (and ongoing support where needed) from dietitians.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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Nutrition support in oncology care in Aotearoa New Zealand: current practice, and where to from here?
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Cancer is an important health problem in New Zealand. It has been the leading cause of deaths in New Zealand since the mid 1990s (currently accounting for around a third of yearly deaths), and yearly numbers of new registrations are increasing.[[1,2]] Good nutrition is important for cancer patients. The potential benefits include better health outcomes during treatment, improving cancer survival, and preventing recurrence.[[3–6]] Both local and international research indicate that diet and nutrition is an important factor in the preferences and needs of our communities, something the New Zealand Cancer Action Plan 2019–2029 recognises as an important factor in cancer care.[[7–11]] In fact, many cancer survivors make dietary changes at various stages of their cancer experience, including dietary supplementation and adherence to particular diets.[[12–14]]
Recent qualitative research with New Zealand cancer survivors showed that many had a strong interest in pursuing diet as a way to support cancer recovery and prevent recurrence, but they found that access to appropriate evidence-based dietary information and support was lacking.[[8]] Cancer survivors who sought out cancer-related nutrition information via the internet were exposed to misinformation. Others who were unaware of the role of nutrition in cancer recovery and prevention did not ask their healthcare providers for nutrition-related information or support nor did they seek out information about nutrition from other sources.[[8]] A lack of access to appropriate nutrition information and support potentially contributes to the persistent inequities in cancer outcomes experienced by subgroups of the New Zealand population. Including nutrition advice and support as part of the standard cancer care offered to all patients through oncology practices, as recommended by the World Cancer Research Fund (WCRF), would help people with cancer to navigate the benefits of good nutrition as part of their recovery while limiting their exposure and susceptibility to dietary information that is not evidence based.[[3]] Provision of nutrition advice/support could form part of a holistic approach to cancer care by encouraging and supporting healthy living to achieve the New Zealand Cancer Action Plan 2019–2029 goals of equitable cancer outcomes and improved cancer survival (better treatment outcomes and living well with and beyond cancer).[[7]]
However, to ensure that recommendations for the incorporation of nutrition advice/information and support into cancer care and support services are useful and achievable, it is important to first understand what is currently available to patients and to identify barriers/enablers to the provision of nutrition advice/support. This research therefore involved a survey of healthcare practitioners (HCPs) involved in cancer care and cancer support workers to identify and understand:
- What diet and nutrition-related information and support is currently available to cancer patients in New Zealand?
- What are healthcare practitioners’ perspectives of nutrition for cancer patients?
- What are the barriers to, and enablers of, the provision of nutrition information and support in cancer care?
The results of this research can be used to inform recommendations for cancer care and cancer support services, and to inform the development of nutrition-related interventions to improve health outcomes for cancer patients.
Methods
This study was approved by the University of Otago Human Ethics Committee (Health), approval number H20/036. Two online surveys were developed: one survey for medical and nursing oncology HCPs and oncology support workers (eg, Cancer Society staff, hereafter referred to as HCP/SWs), and one slightly amended survey for dietitians involved in oncology practice. The surveys included multiple choice, multiple answer, and open-ended questions related to the provision of nutrition information and support in cancer care. Demographic questions were also included to collect descriptive information about the survey participants.
Participant recruitment involved two phases. In Phase 1, an extensive internet and directory search identified publicly available oncology practitioners’ email addresses. We sent these practitioners an invitation to participate with a personal link to the survey via the RedCap survey software. Reminder emails were sent automatically via RedCap to participants who had not responded to the survey five days after the initial invitation and one week after the first reminder. This resulted in 24 completed HCP/SW surveys and four completed dietitian surveys. Phase 2 involved sending emails with information about the study and public links to the surveys to various groups, district health boards (DHBs), and administration/reception email adressess for oncology clinics, asking them to share the public link to the survey with their membership/oncology healthcare practitioner staff members. A further 44 HCP/SW surveys and 40 dietitian surveys were completed as a result of Phase 2.
The survey link took participants to an online copy of the participant information sheet and an initial question about consent to participate. Those who indicated their consent to participate were then taken to the first survey question about their profession/role with cancer patients. An introductory question was used as a screening tool to ensure only HCPs involved in cancer care would complete the survey. Participants who indicated they did not work with cancer patients received the response, “Thank you for your time. We only need practitioners who provide care for cancer patients to complete this survey,” and were not provided access to further survey questions. Participants who did work with cancer patients were linked through to the main survey questions.
Data collection was completed between September 2020 and January 2021. The survey data were analysed descriptively using Microsoft Excel Version 16.51 (2021). The analysis focused on frequencies and percentages for the different response options. Open-ended questions let participants provide further detail and/or clarify/explain their reasoning. These questions were analysed for explanatory content to help us interpret the survey results.
Results
Participant characteristics
Participant characteristics are summarised in Table 1. The survey participants (n=112) included a range of HCPs involved in cancer care, including 44 dietitians, 16 nurses, 47 specialist medical practitioners and five cancer support workers. Most (81%) were of NZ European ethnicity and 77% were female. Participants included HCPs from all New Zealand DHBs, except three smaller DHBs (Tairāwhiti, Hawke’s Bay, Whanganui). Of the HCP/SW participants, 16% (n=11) indicated they had some nutrition training.
Table 1: Description of participants.
Perspectives on nutrition for cancer patients
Participants were asked, “How important is the role of nutrition [a] in cancer recovery? [b] in preventing cancer recurrence?[and c] in overall patient wellbeing?” Ratings were recorded on a five-point Likert scale (not at all important, slightly important, moderately important, very important, extremely important). All participants rated nutrition as moderately important or higher for both cancer recovery and for overall patient wellbeing. In addition, most rated nutrition as very or extremely important for cancer recovery (74% HCP/SWs, 98% dietitians) and for overall patient wellbeing (85% HCP/SWs, 98% dietitians). Nutrition’s importance in preventing recurrence of cancer was rated as moderately important or higher by most participants (71% HCP/SWs, 91% dietitians). In response to the question, “Do you think dietary information and support should be offered to cancer patients?” all participants said nutrition information and support should be provided either always (81% HCP/SWs, 86% dietitians) or in some circumstances (19% HCP/SWs, 14% dietitians).
Participants were also asked who they thought should provide nutrition information and support to cancer patients. Dietitians’ and HCP/SWs’ answers were very similar for this question and have therefore been combined. Many of the participants (66%) selected more than one option, indicating that nutrition information and support should be available from more than one type of practitioner. Most (95%) of the participants indicated that nutrition information and support should be provided by an oncology dietitian (29% oncology dietitian only, 66% oncology dietitian and other HCP). Other options selected were oncology nurse (54%), specialist doctor (45%), cancer support services (36%), and other (21%).
Provision of nutrition advice/information and support
Nutrition advice/information and support from HCP/SWs
Table 2 outlines details about which patients HCP/SWs give nutrition advice/information to. Most (94%) of the HCP/SWs indicated they provide nutrition advice/information to at least some of the patients in their care (37% to all patients and 57% to specific patients only). Most commonly they provided nutrition advice/information to patients who ask about nutrition (46%) and patients with poor nutritional status (38%). All the HCP/SWs who had some nutrition training (n=11) gave nutrition advice/information to their patients (55% to all patients and 45% to specific patients). Fewer participants provided ongoing nutrition support. Only 12% of HCP/SWs indicated that they provide access to ongoing nutrition support to all patients, and 66% indicated they provide ongoing nutrition support to specific patients (most commonly patients with or at risk of poor nutritional status (60%) and patients who ask (43%)). A considerable number (21%) of HCP/SWs indicated they did not provide access to ongoing nutritional support to their patients at all.
Table 2: Access to nutrition advice/information and support from HCP/SWs (n=68).
Although poor nutritional status was the main reason for providing nutrition support, only 38% of HCP/SWs used detailed nutrition assessments. Most (76%) used body weight to assess nutritional status, and 18% did not assess nutritional status. Other forms of assessment reported (19% of HCP/SWs) included screening for malnutrition, assessment of wellbeing/functioning, blood tests/biochemistry and clinical examination.
All 53 HCP/SWs who provided access to ongoing nutrition support were able to refer patients to a dietitian (75% of these were able to refer to a dietitian specialising in oncology practice). In addition, some provided ongoing support themselves (21%) or via another practitioner in the same clinic (13%), and 30% indicated they had information/booklets available to patients in the waiting area. Support groups for nutrition support were not widely available (4%).
Nutrition advice/information and support from dietitians
The most common way of entering dietitian care was via referral from a nurse (98%) or a secondary/tertiary care specialist doctor (91%). Other referrals were from a general practitioner (48%), other health professional (18%) or other dietitian (11%), or via self-referral (36%). Table 3 outlines information from the dietitians’ survey about the cancer patients who enter their care. Most dietitians indicated they saw patients with specific nutritional needs due to cancer or treatment effects (98%) and patients with poor nutritional status (95%). In addition, 50% of dietitians indicated they saw patients who asked about nutrition for cancer recovery and/or prevention of recurrence. Similarly, dietitians were most commonly asked for advice/information about managing symptoms/treatment effects (95%) and weight maintenance (91%), whereas just over half (55%) were asked about nutrition for cancer recovery/prevention of recurrence.
Table 3: Nutrition advice/information and support from dietitians. View Table 3.
Only 16% of dietitians provided ongoing support to all patients, and 14% did not provide ongoing support to any patients. The majority (68%) indicated that ongoing support was only available to specific patients, mostly those with poor nutritional status (64%) and those who ask for nutrition/diet support (34%). In contrast to HCP/SWs, all dietitian participants assessed each patient’s nutritional status using a detailed nutrition assessment, and most (80%) combined this with regular monitoring of body weight. Comments made in the open-ended sections of the survey explained the reason(s) for the limited availability of ongoing support. For example, one dietitian stated: “We are very busy and under-resourced so patients may be seen just once or twice. Those with clear malnutrition have more follow up.” Another dietitian shared: “Being unable to provide care to all those who are referred to me due to lack of capacity and long wait-times to be seen is a weighty ethical and moral burden.” When ongoing support was provided, it was mostly provided by the dietitian themselves (81%) or by referral to a community dietitian (54%).
Funding for nutrition support
Most (79%) of the participants who provided access to nutrition-related support indicated that this support was part of public healthcare with no cost to patients, and 2% said it was funded by the Cancer Society. A small number were privately funded (12%) or partially funded (4%).
Regional differences in provision of support
HCP/SWs who worked in DHBs based in larger centres (eg, Auckland, Waikato, MidCentral, Capital & Coast, Canterbury, Southern) were more likely to be able to refer patients to a dietitian (including access to a specialised oncology dietitian). In contrast, HCPs based in smaller/rural DHBs could not refer patients to an oncology dietitian, and some had no/limited ability to refer to a dietitian.
Differences between public and private sectors
We asked participants who worked in both public and private sectors to comment on the differences in nutrition services (advice/information/support) offered to patients in each sector. Analysis of the comments revealed that most (but not all) had better access to a dietitian when working in their private practice, indicating they were able to refer all or most private patients to a dietitian. Some private oncology clinics had an in-house dietitian who would see every patient. Access to dietitians in public practice was not readily available unless patients met strict criteria for referral, described by one participant as “near impossible” to fulfil.
A comparison of public-only and private-only HCPs’ survey answers confirm comments about access to oncology dietitians in private practice (all could refer to an oncology dietitian and most of these were in-house) compared to public practice (60% could refer to an oncology dietitian, 23% could refer to a general dietitian, 17% no support provided). In addition, a higher proportion (33%) of private-only HCPs indicated that nutrition support was available to all patients compared to public-only HCPs (10%). Although the majority of dietitians (in both public and private sectors) saw patients with specific nutritional needs due to cancer or treatment effects and patients with poor nutritional status, dietitians working in private healthcare were more likely to also see other types of patients (eg, patients who ask about nutrition for cancer recovery/prevention of recurrence, patients who are overweight/obese, patients with specific nutrition needs due to other coexisting health conditions). Dietitians working in private healthcare were also more likely to advise patients to follow the WCRF dietary recommendations and inform them of what to eat for ongoing health and cancer risk prevention.
Type and sources of nutrition advice/information
Table 4 outlines details about the types and sources of nutrition advice/information that HCPs and support workers provided. HCP/SWs mainly gave patients general advice/information about healthy eating (83%) or eating during treatment (77%), whereas most dietitians gave specific nutrition information related to cancer treatment (91%), general advice about eating during treatment (80%), and specific information to aid cancer recovery (66%). Fewer participants provided specific information about nutrition for ongoing health/reduction of risk for cancer recurrence (30% for both HCP/SWs and dietitians), and only dietitians (32%) advised patients to follow the WCRF recommendations. HCP/SWs were most likely to give verbal advice/information (98%) and 50% provided pamphlets or information sheets. All dietitians gave patients both verbal advice/information and pamphlets/information sheets. Reference to online resources was less common (HCP/SWs 8%, dietitians 25%). Most dietitians (93%) used practice evidence-based nutrition as a source for advice/information given to patients, with other common sources including peer-reviewed publications (52%), the New Zealand Cancer Society (48%), best practice guidelines (43%) and the WCRF (41%). The main sources of information used by HCP/SWs included peer-reviewed publications (39%) and the New Zealand Cancer Society (38%).
Table 4: Type and sources of nutrition advice/information provided. View Table 4.
Barriers to providing nutrition information and support to cancer patients
Figure 1 gives an overview of the barriers to providing cancer patients with nutrition information and support according to HCP/SWs and dietitians. The main barriers to providing nutrition information and support can be grouped into two main categories: those relating to the current funding model (lack of time, funding, or staff capacity) and those related to expertise/access to information (not my area of expertise, no-one with expertise available, lack of evidence-based resources).
Barriers related to the current funding model were a problem for HCP/SWs and dietitians alike (82% of all participants), whereas barriers related to expertise/access to information were more common for HCP/SWs (76%) compared to dietitians (14%). Comments made in open-ended sections of the survey confirm that limited funding (and the resulting lack of capacity) is a major barrier to providing patient access to advice and support from a dietitian. As one dietitian commented: “Ideally all cancer patients should have the ability to receive dietary advice—ideally from a dietitian. However, in a public hospital setting this would require far more dietitians than we currently have available so therefore only those already struggling get seen.” Similar comments were made by non-dietitian HCPs. For example: “Ideally we would refer all oncology patients to a dietitian and almost all patients ask for that, but we don't have the ability to do that in public practice.” And: “Insufficient publicly funded specialist nutritional advice available. If all patients who could benefit were referred service would be overloaded.” Concern about overloading patients with information was an additional barrier for some participants (38%).
Figure 1: Barriers to providing nutrition information and support.
Enabling nutrition information and support for cancer patients
Access to reliable, evidence-based resources (eg, booklets, information sheets, online resources) was the most-selected enabler for HCP/SWs (78%) and was also selected as helpful by many dietitians (61%). Most dietitians (89%) and HCP/SWs (74%) indicated that funding support for all patients to see an oncology dietitian would be helpful. Support services that provide cancer-specific dietary information and support (eg, seminars, support groups led by dietitian) was also relatively popular with HCP/SWs (63%).
Some participants (15% of HCP/SWs, 20% of dietitians) made other suggestions/comments about what would be helpful. The more common suggestions related to increased funding support for dietitians (but not necessarily to see all patients). Other suggestions related to training/development in oncology nutrition (eg, specialised oncology training for dietitians, training for HCPs from an oncology dietitian, nutrition training for radiation therapists, courses/conferences on nutrition for cancer). Dietitians also suggested ways to ensure equal information/access across New Zealand (eg, all oncology services have an in-house dietitian, better screening and referral pathways, evidence-based position statements on specific foods/diets to help streamline advice given and combat misinformation) and to improve continuity of care (eg, better communication between primary and secondary/tertiary care, funding for oncology dietitian to be available across inpatient/outpatient and community follow-up care).
Discussion
Access to nutrition advice/information and support is limited in New Zealand cancer care and support services. Our results indicate that, although most HCPs working with cancer patients agree that nutrition is very important for patient wellbeing and recovery from cancer and at least moderately important for preventing recurrence, specialist nutrition advice and support from a qualified dietitian is mainly limited to patients at the highest risk of malnutrition and those who can afford private healthcare. In addition, these results indicate that many cancer patients will not receive nutrition advice/information from doctors, nurses, or support workers either. This lack of access to cancer-related nutrition information and support for people with cancer is likely to have a negative impact on cancer outcomes and contribute to inequities in outcomes experienced by some groups compared to others.
The differences in the provision of advice/information and access to nutrition-related support identified in this study (eg, differences by individual practitioner, region/DHB, public/private practice, relying on patients to ask for information) will also contribute to inequities in cancer outcomes by favouring those with more advanced health-literacy skills and better socioeconomic circumstances. Health literacy (defined by the World Health Organization as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”[[15]]) is an important factor in determining health outcomes. People with limited health literacy are more likely to have poor health outcomes.[[16–18]] Health literacy empowers patients to effectively access and use health information.[[15]] Health literacy and ability to gain benefit from health literacy skills are impacted by factors such as socioeconomic status, access to social support, language/literacy skills, assertiveness, education and culture, as well as healthcare system/HCP factors.[[16]] Healthcare practitioners can contribute to patients’ health literacy by ensuring information (and support) is offered, readily accessible, easy to understand, and culturally appropriate. It is important not to wait for patients to ask for nutrition information/support because, for a variety of reasons (eg, social/cultural norms, language barriers, not aware that nutrition is important for cancer outcomes, not aware of support available), many patients will not ask for nutrition information or support if it is not offered.[[8,19–23]]
Prior research has indicated that many people with cancer are particularly open to and interested in receiving advice about how they can support their recovery with healthy eating.[[8–10]] This creates opportunities to impart healthy eating advice not only to support better cancer outcomes, but also to improve overall health beyond cancer. Ideally, advice and information should be tailored to cancer type, treatment, and individual patient needs to gain maximal benefits. A dietitian knowledgeable in the specific nutrition needs of cancer patients would be best placed to help patients navigate this area. Dietitians are also able to adapt dietary requirements to a patient’s family and cultural contexts, and personal food preferences. However, recent research with New Zealand cancer survivors revealed that patients who are not told about nutrition by the specialist doctor treating their cancer may interpret that to mean that nutrition is not important for cancer (or for their particular type of cancer), illustrating that HCP/SWs also have an important role in sharing the message about nutrition.[[8]] The World Cancer Research Fund/American Institute for Cancer Research cancer prevention recommendations outlined in Table 5 include advice about nutrition. Generic information suitable for patients is available from the Cancer Society of New Zealand (https://www.cancer.org.nz/assets/Downloads/Eating-well-with-cancer/Info-Sheet-healthy-eating-and-cancer-treatment.pdf and https://www.cancer.org.nz/cancer/living-with-cancer/eating-well-with-cancer/).
Table 5: WCRF/AICR cancer prevention recommendations.[[a]] View Table 5.
In addition to lack of funding, other barriers impacted by the current funding model for cancer care (eg, lack of time/capacity) were commonly reported by participants. These results are indicative of an overburdened, underfunded healthcare system where not all patients have access to the same services and many patients who would benefit from nutrition information and support miss out. The number of people diagnosed with cancer in New Zealand is growing,[[1]] which will only put further strain on already stretched services. Improving access to nutrition advice and support has the potential to not only improve patients’ treatment outcomes but also reduce the number of patients returning into the system with cancer (cancer recurrence) or other non-communicable diseases.[[3,4,6,24]] The recently announced New Zealand health system reforms[[25]] will include changing to a single nationwide system. This is an opportunity to standardise and strengthen cancer care services and make provisions to include better access to nutrition information and support as part of an equity- and needs-focused holistic approach.
Strengths and limitations
This study has several strengths. Although we were unable to ascertain a response rate due to the nature of our sampling, we had responses from a wide range of participants and a good total number of responses. This included representative responses from medical, nursing, support, and dietetic practitioners from 17 of the 20 DHBs (and all tertiary cancer care services) and from public and private practice. In addition, the survey data are supported by open-ended responses that enable a more comprehensive understanding of the topic. A limitation of this study is that HCPs who responded to the survey are likely to have an interest in food and nutrition. The results may over-estimate the nutrition information/support provided and HCP views on the importance of nutrition in cancer care. We also did not survey primary care practitioners. This limited the information we found about nutrition support occurring in primary care.
Conclusions and recommendations
Based on these findings, we recommend a standardised system across all New Zealand’s oncology services that incorporates general introductory advice/information about nutrition (eg, the WCRF dietary recommendations) from all HCPs and more detailed tailored advice (and ongoing support where needed) from dietitians to support the recovery and ongoing health of people diagnosed with cancer. Ideally all patients should have the opportunity to access at least some tailored nutrition advice/information (specific to cancer and treatment type and tailored to individual health and cultural needs) from a dietitian. Such advice/information might be enough to meet the needs of some patients, while others will need more ongoing support from a dietitian and/or other forms of support (eg, financial or practical support) to enable them to successfully incorporate recommendations into their daily lives. Cancer support services could play an important role in providing additional financial (eg, vouchers, foodbanks, supply of fruit/vegetables) and practical (eg, dietitian-led support groups, healthy cooking workshops, access to healthy pre-prepared meals) support for those who need it. Qualitative research to better understand HCP perspectives and barriers/enablers to provision of nutrition information and support in cancer care will help to inform the development of interventions and determine how to best to integrate nutrition into cancer care. Work is also needed to develop and test the impact of potential interventions on cancer outcomes and to understand the long-term health and economic benefits of proposed changes.
Summary
Abstract
Aim
This research sought to identify and understand what nutrition-related information and support is available to people undergoing cancer treatment. We also sought the views on nutrition for cancer among providers of cancer care/support, and barriers/enablers to the provision of nutrition information/support.
Method
Data were collected using online surveys with New Zealand-based healthcare practitioners and support workers. Descriptive analysis was undertaken. Open-ended questions were analysed for explanatory content to help us interpret and understand the results.
Results
Most healthcare practitioners and support workers viewed nutrition as at least moderately important (for cancer recovery, patient wellbeing and preventing cancer recurrence) and believed nutrition information/support should be provided to cancer patients. However, nutrition information and support were not widely available through oncology practices and cancer support services. The main barriers to the provision of nutrition information and support (including access to dietitian appointments) were insufficient funding and lack of time/staff capacity. Additional barriers included a lack of access to evidence-based information and dietary expertise.
Conclusion
Nutrition information and support needs to be more widely available and standardised across New Zealand’s oncology services. Ideally this would include general introductory information about nutrition (eg, World Cancer Research Fund recommendations) from all healthcare practitioners and more detailed tailored advice (and ongoing support where needed) from dietitians.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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Nutrition support in oncology care in Aotearoa New Zealand: current practice, and where to from here?
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Cancer is an important health problem in New Zealand. It has been the leading cause of deaths in New Zealand since the mid 1990s (currently accounting for around a third of yearly deaths), and yearly numbers of new registrations are increasing.[[1,2]] Good nutrition is important for cancer patients. The potential benefits include better health outcomes during treatment, improving cancer survival, and preventing recurrence.[[3–6]] Both local and international research indicate that diet and nutrition is an important factor in the preferences and needs of our communities, something the New Zealand Cancer Action Plan 2019–2029 recognises as an important factor in cancer care.[[7–11]] In fact, many cancer survivors make dietary changes at various stages of their cancer experience, including dietary supplementation and adherence to particular diets.[[12–14]]
Recent qualitative research with New Zealand cancer survivors showed that many had a strong interest in pursuing diet as a way to support cancer recovery and prevent recurrence, but they found that access to appropriate evidence-based dietary information and support was lacking.[[8]] Cancer survivors who sought out cancer-related nutrition information via the internet were exposed to misinformation. Others who were unaware of the role of nutrition in cancer recovery and prevention did not ask their healthcare providers for nutrition-related information or support nor did they seek out information about nutrition from other sources.[[8]] A lack of access to appropriate nutrition information and support potentially contributes to the persistent inequities in cancer outcomes experienced by subgroups of the New Zealand population. Including nutrition advice and support as part of the standard cancer care offered to all patients through oncology practices, as recommended by the World Cancer Research Fund (WCRF), would help people with cancer to navigate the benefits of good nutrition as part of their recovery while limiting their exposure and susceptibility to dietary information that is not evidence based.[[3]] Provision of nutrition advice/support could form part of a holistic approach to cancer care by encouraging and supporting healthy living to achieve the New Zealand Cancer Action Plan 2019–2029 goals of equitable cancer outcomes and improved cancer survival (better treatment outcomes and living well with and beyond cancer).[[7]]
However, to ensure that recommendations for the incorporation of nutrition advice/information and support into cancer care and support services are useful and achievable, it is important to first understand what is currently available to patients and to identify barriers/enablers to the provision of nutrition advice/support. This research therefore involved a survey of healthcare practitioners (HCPs) involved in cancer care and cancer support workers to identify and understand:
- What diet and nutrition-related information and support is currently available to cancer patients in New Zealand?
- What are healthcare practitioners’ perspectives of nutrition for cancer patients?
- What are the barriers to, and enablers of, the provision of nutrition information and support in cancer care?
The results of this research can be used to inform recommendations for cancer care and cancer support services, and to inform the development of nutrition-related interventions to improve health outcomes for cancer patients.
Methods
This study was approved by the University of Otago Human Ethics Committee (Health), approval number H20/036. Two online surveys were developed: one survey for medical and nursing oncology HCPs and oncology support workers (eg, Cancer Society staff, hereafter referred to as HCP/SWs), and one slightly amended survey for dietitians involved in oncology practice. The surveys included multiple choice, multiple answer, and open-ended questions related to the provision of nutrition information and support in cancer care. Demographic questions were also included to collect descriptive information about the survey participants.
Participant recruitment involved two phases. In Phase 1, an extensive internet and directory search identified publicly available oncology practitioners’ email addresses. We sent these practitioners an invitation to participate with a personal link to the survey via the RedCap survey software. Reminder emails were sent automatically via RedCap to participants who had not responded to the survey five days after the initial invitation and one week after the first reminder. This resulted in 24 completed HCP/SW surveys and four completed dietitian surveys. Phase 2 involved sending emails with information about the study and public links to the surveys to various groups, district health boards (DHBs), and administration/reception email adressess for oncology clinics, asking them to share the public link to the survey with their membership/oncology healthcare practitioner staff members. A further 44 HCP/SW surveys and 40 dietitian surveys were completed as a result of Phase 2.
The survey link took participants to an online copy of the participant information sheet and an initial question about consent to participate. Those who indicated their consent to participate were then taken to the first survey question about their profession/role with cancer patients. An introductory question was used as a screening tool to ensure only HCPs involved in cancer care would complete the survey. Participants who indicated they did not work with cancer patients received the response, “Thank you for your time. We only need practitioners who provide care for cancer patients to complete this survey,” and were not provided access to further survey questions. Participants who did work with cancer patients were linked through to the main survey questions.
Data collection was completed between September 2020 and January 2021. The survey data were analysed descriptively using Microsoft Excel Version 16.51 (2021). The analysis focused on frequencies and percentages for the different response options. Open-ended questions let participants provide further detail and/or clarify/explain their reasoning. These questions were analysed for explanatory content to help us interpret the survey results.
Results
Participant characteristics
Participant characteristics are summarised in Table 1. The survey participants (n=112) included a range of HCPs involved in cancer care, including 44 dietitians, 16 nurses, 47 specialist medical practitioners and five cancer support workers. Most (81%) were of NZ European ethnicity and 77% were female. Participants included HCPs from all New Zealand DHBs, except three smaller DHBs (Tairāwhiti, Hawke’s Bay, Whanganui). Of the HCP/SW participants, 16% (n=11) indicated they had some nutrition training.
Table 1: Description of participants.
Perspectives on nutrition for cancer patients
Participants were asked, “How important is the role of nutrition [a] in cancer recovery? [b] in preventing cancer recurrence?[and c] in overall patient wellbeing?” Ratings were recorded on a five-point Likert scale (not at all important, slightly important, moderately important, very important, extremely important). All participants rated nutrition as moderately important or higher for both cancer recovery and for overall patient wellbeing. In addition, most rated nutrition as very or extremely important for cancer recovery (74% HCP/SWs, 98% dietitians) and for overall patient wellbeing (85% HCP/SWs, 98% dietitians). Nutrition’s importance in preventing recurrence of cancer was rated as moderately important or higher by most participants (71% HCP/SWs, 91% dietitians). In response to the question, “Do you think dietary information and support should be offered to cancer patients?” all participants said nutrition information and support should be provided either always (81% HCP/SWs, 86% dietitians) or in some circumstances (19% HCP/SWs, 14% dietitians).
Participants were also asked who they thought should provide nutrition information and support to cancer patients. Dietitians’ and HCP/SWs’ answers were very similar for this question and have therefore been combined. Many of the participants (66%) selected more than one option, indicating that nutrition information and support should be available from more than one type of practitioner. Most (95%) of the participants indicated that nutrition information and support should be provided by an oncology dietitian (29% oncology dietitian only, 66% oncology dietitian and other HCP). Other options selected were oncology nurse (54%), specialist doctor (45%), cancer support services (36%), and other (21%).
Provision of nutrition advice/information and support
Nutrition advice/information and support from HCP/SWs
Table 2 outlines details about which patients HCP/SWs give nutrition advice/information to. Most (94%) of the HCP/SWs indicated they provide nutrition advice/information to at least some of the patients in their care (37% to all patients and 57% to specific patients only). Most commonly they provided nutrition advice/information to patients who ask about nutrition (46%) and patients with poor nutritional status (38%). All the HCP/SWs who had some nutrition training (n=11) gave nutrition advice/information to their patients (55% to all patients and 45% to specific patients). Fewer participants provided ongoing nutrition support. Only 12% of HCP/SWs indicated that they provide access to ongoing nutrition support to all patients, and 66% indicated they provide ongoing nutrition support to specific patients (most commonly patients with or at risk of poor nutritional status (60%) and patients who ask (43%)). A considerable number (21%) of HCP/SWs indicated they did not provide access to ongoing nutritional support to their patients at all.
Table 2: Access to nutrition advice/information and support from HCP/SWs (n=68).
Although poor nutritional status was the main reason for providing nutrition support, only 38% of HCP/SWs used detailed nutrition assessments. Most (76%) used body weight to assess nutritional status, and 18% did not assess nutritional status. Other forms of assessment reported (19% of HCP/SWs) included screening for malnutrition, assessment of wellbeing/functioning, blood tests/biochemistry and clinical examination.
All 53 HCP/SWs who provided access to ongoing nutrition support were able to refer patients to a dietitian (75% of these were able to refer to a dietitian specialising in oncology practice). In addition, some provided ongoing support themselves (21%) or via another practitioner in the same clinic (13%), and 30% indicated they had information/booklets available to patients in the waiting area. Support groups for nutrition support were not widely available (4%).
Nutrition advice/information and support from dietitians
The most common way of entering dietitian care was via referral from a nurse (98%) or a secondary/tertiary care specialist doctor (91%). Other referrals were from a general practitioner (48%), other health professional (18%) or other dietitian (11%), or via self-referral (36%). Table 3 outlines information from the dietitians’ survey about the cancer patients who enter their care. Most dietitians indicated they saw patients with specific nutritional needs due to cancer or treatment effects (98%) and patients with poor nutritional status (95%). In addition, 50% of dietitians indicated they saw patients who asked about nutrition for cancer recovery and/or prevention of recurrence. Similarly, dietitians were most commonly asked for advice/information about managing symptoms/treatment effects (95%) and weight maintenance (91%), whereas just over half (55%) were asked about nutrition for cancer recovery/prevention of recurrence.
Table 3: Nutrition advice/information and support from dietitians. View Table 3.
Only 16% of dietitians provided ongoing support to all patients, and 14% did not provide ongoing support to any patients. The majority (68%) indicated that ongoing support was only available to specific patients, mostly those with poor nutritional status (64%) and those who ask for nutrition/diet support (34%). In contrast to HCP/SWs, all dietitian participants assessed each patient’s nutritional status using a detailed nutrition assessment, and most (80%) combined this with regular monitoring of body weight. Comments made in the open-ended sections of the survey explained the reason(s) for the limited availability of ongoing support. For example, one dietitian stated: “We are very busy and under-resourced so patients may be seen just once or twice. Those with clear malnutrition have more follow up.” Another dietitian shared: “Being unable to provide care to all those who are referred to me due to lack of capacity and long wait-times to be seen is a weighty ethical and moral burden.” When ongoing support was provided, it was mostly provided by the dietitian themselves (81%) or by referral to a community dietitian (54%).
Funding for nutrition support
Most (79%) of the participants who provided access to nutrition-related support indicated that this support was part of public healthcare with no cost to patients, and 2% said it was funded by the Cancer Society. A small number were privately funded (12%) or partially funded (4%).
Regional differences in provision of support
HCP/SWs who worked in DHBs based in larger centres (eg, Auckland, Waikato, MidCentral, Capital & Coast, Canterbury, Southern) were more likely to be able to refer patients to a dietitian (including access to a specialised oncology dietitian). In contrast, HCPs based in smaller/rural DHBs could not refer patients to an oncology dietitian, and some had no/limited ability to refer to a dietitian.
Differences between public and private sectors
We asked participants who worked in both public and private sectors to comment on the differences in nutrition services (advice/information/support) offered to patients in each sector. Analysis of the comments revealed that most (but not all) had better access to a dietitian when working in their private practice, indicating they were able to refer all or most private patients to a dietitian. Some private oncology clinics had an in-house dietitian who would see every patient. Access to dietitians in public practice was not readily available unless patients met strict criteria for referral, described by one participant as “near impossible” to fulfil.
A comparison of public-only and private-only HCPs’ survey answers confirm comments about access to oncology dietitians in private practice (all could refer to an oncology dietitian and most of these were in-house) compared to public practice (60% could refer to an oncology dietitian, 23% could refer to a general dietitian, 17% no support provided). In addition, a higher proportion (33%) of private-only HCPs indicated that nutrition support was available to all patients compared to public-only HCPs (10%). Although the majority of dietitians (in both public and private sectors) saw patients with specific nutritional needs due to cancer or treatment effects and patients with poor nutritional status, dietitians working in private healthcare were more likely to also see other types of patients (eg, patients who ask about nutrition for cancer recovery/prevention of recurrence, patients who are overweight/obese, patients with specific nutrition needs due to other coexisting health conditions). Dietitians working in private healthcare were also more likely to advise patients to follow the WCRF dietary recommendations and inform them of what to eat for ongoing health and cancer risk prevention.
Type and sources of nutrition advice/information
Table 4 outlines details about the types and sources of nutrition advice/information that HCPs and support workers provided. HCP/SWs mainly gave patients general advice/information about healthy eating (83%) or eating during treatment (77%), whereas most dietitians gave specific nutrition information related to cancer treatment (91%), general advice about eating during treatment (80%), and specific information to aid cancer recovery (66%). Fewer participants provided specific information about nutrition for ongoing health/reduction of risk for cancer recurrence (30% for both HCP/SWs and dietitians), and only dietitians (32%) advised patients to follow the WCRF recommendations. HCP/SWs were most likely to give verbal advice/information (98%) and 50% provided pamphlets or information sheets. All dietitians gave patients both verbal advice/information and pamphlets/information sheets. Reference to online resources was less common (HCP/SWs 8%, dietitians 25%). Most dietitians (93%) used practice evidence-based nutrition as a source for advice/information given to patients, with other common sources including peer-reviewed publications (52%), the New Zealand Cancer Society (48%), best practice guidelines (43%) and the WCRF (41%). The main sources of information used by HCP/SWs included peer-reviewed publications (39%) and the New Zealand Cancer Society (38%).
Table 4: Type and sources of nutrition advice/information provided. View Table 4.
Barriers to providing nutrition information and support to cancer patients
Figure 1 gives an overview of the barriers to providing cancer patients with nutrition information and support according to HCP/SWs and dietitians. The main barriers to providing nutrition information and support can be grouped into two main categories: those relating to the current funding model (lack of time, funding, or staff capacity) and those related to expertise/access to information (not my area of expertise, no-one with expertise available, lack of evidence-based resources).
Barriers related to the current funding model were a problem for HCP/SWs and dietitians alike (82% of all participants), whereas barriers related to expertise/access to information were more common for HCP/SWs (76%) compared to dietitians (14%). Comments made in open-ended sections of the survey confirm that limited funding (and the resulting lack of capacity) is a major barrier to providing patient access to advice and support from a dietitian. As one dietitian commented: “Ideally all cancer patients should have the ability to receive dietary advice—ideally from a dietitian. However, in a public hospital setting this would require far more dietitians than we currently have available so therefore only those already struggling get seen.” Similar comments were made by non-dietitian HCPs. For example: “Ideally we would refer all oncology patients to a dietitian and almost all patients ask for that, but we don't have the ability to do that in public practice.” And: “Insufficient publicly funded specialist nutritional advice available. If all patients who could benefit were referred service would be overloaded.” Concern about overloading patients with information was an additional barrier for some participants (38%).
Figure 1: Barriers to providing nutrition information and support.
Enabling nutrition information and support for cancer patients
Access to reliable, evidence-based resources (eg, booklets, information sheets, online resources) was the most-selected enabler for HCP/SWs (78%) and was also selected as helpful by many dietitians (61%). Most dietitians (89%) and HCP/SWs (74%) indicated that funding support for all patients to see an oncology dietitian would be helpful. Support services that provide cancer-specific dietary information and support (eg, seminars, support groups led by dietitian) was also relatively popular with HCP/SWs (63%).
Some participants (15% of HCP/SWs, 20% of dietitians) made other suggestions/comments about what would be helpful. The more common suggestions related to increased funding support for dietitians (but not necessarily to see all patients). Other suggestions related to training/development in oncology nutrition (eg, specialised oncology training for dietitians, training for HCPs from an oncology dietitian, nutrition training for radiation therapists, courses/conferences on nutrition for cancer). Dietitians also suggested ways to ensure equal information/access across New Zealand (eg, all oncology services have an in-house dietitian, better screening and referral pathways, evidence-based position statements on specific foods/diets to help streamline advice given and combat misinformation) and to improve continuity of care (eg, better communication between primary and secondary/tertiary care, funding for oncology dietitian to be available across inpatient/outpatient and community follow-up care).
Discussion
Access to nutrition advice/information and support is limited in New Zealand cancer care and support services. Our results indicate that, although most HCPs working with cancer patients agree that nutrition is very important for patient wellbeing and recovery from cancer and at least moderately important for preventing recurrence, specialist nutrition advice and support from a qualified dietitian is mainly limited to patients at the highest risk of malnutrition and those who can afford private healthcare. In addition, these results indicate that many cancer patients will not receive nutrition advice/information from doctors, nurses, or support workers either. This lack of access to cancer-related nutrition information and support for people with cancer is likely to have a negative impact on cancer outcomes and contribute to inequities in outcomes experienced by some groups compared to others.
The differences in the provision of advice/information and access to nutrition-related support identified in this study (eg, differences by individual practitioner, region/DHB, public/private practice, relying on patients to ask for information) will also contribute to inequities in cancer outcomes by favouring those with more advanced health-literacy skills and better socioeconomic circumstances. Health literacy (defined by the World Health Organization as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”[[15]]) is an important factor in determining health outcomes. People with limited health literacy are more likely to have poor health outcomes.[[16–18]] Health literacy empowers patients to effectively access and use health information.[[15]] Health literacy and ability to gain benefit from health literacy skills are impacted by factors such as socioeconomic status, access to social support, language/literacy skills, assertiveness, education and culture, as well as healthcare system/HCP factors.[[16]] Healthcare practitioners can contribute to patients’ health literacy by ensuring information (and support) is offered, readily accessible, easy to understand, and culturally appropriate. It is important not to wait for patients to ask for nutrition information/support because, for a variety of reasons (eg, social/cultural norms, language barriers, not aware that nutrition is important for cancer outcomes, not aware of support available), many patients will not ask for nutrition information or support if it is not offered.[[8,19–23]]
Prior research has indicated that many people with cancer are particularly open to and interested in receiving advice about how they can support their recovery with healthy eating.[[8–10]] This creates opportunities to impart healthy eating advice not only to support better cancer outcomes, but also to improve overall health beyond cancer. Ideally, advice and information should be tailored to cancer type, treatment, and individual patient needs to gain maximal benefits. A dietitian knowledgeable in the specific nutrition needs of cancer patients would be best placed to help patients navigate this area. Dietitians are also able to adapt dietary requirements to a patient’s family and cultural contexts, and personal food preferences. However, recent research with New Zealand cancer survivors revealed that patients who are not told about nutrition by the specialist doctor treating their cancer may interpret that to mean that nutrition is not important for cancer (or for their particular type of cancer), illustrating that HCP/SWs also have an important role in sharing the message about nutrition.[[8]] The World Cancer Research Fund/American Institute for Cancer Research cancer prevention recommendations outlined in Table 5 include advice about nutrition. Generic information suitable for patients is available from the Cancer Society of New Zealand (https://www.cancer.org.nz/assets/Downloads/Eating-well-with-cancer/Info-Sheet-healthy-eating-and-cancer-treatment.pdf and https://www.cancer.org.nz/cancer/living-with-cancer/eating-well-with-cancer/).
Table 5: WCRF/AICR cancer prevention recommendations.[[a]] View Table 5.
In addition to lack of funding, other barriers impacted by the current funding model for cancer care (eg, lack of time/capacity) were commonly reported by participants. These results are indicative of an overburdened, underfunded healthcare system where not all patients have access to the same services and many patients who would benefit from nutrition information and support miss out. The number of people diagnosed with cancer in New Zealand is growing,[[1]] which will only put further strain on already stretched services. Improving access to nutrition advice and support has the potential to not only improve patients’ treatment outcomes but also reduce the number of patients returning into the system with cancer (cancer recurrence) or other non-communicable diseases.[[3,4,6,24]] The recently announced New Zealand health system reforms[[25]] will include changing to a single nationwide system. This is an opportunity to standardise and strengthen cancer care services and make provisions to include better access to nutrition information and support as part of an equity- and needs-focused holistic approach.
Strengths and limitations
This study has several strengths. Although we were unable to ascertain a response rate due to the nature of our sampling, we had responses from a wide range of participants and a good total number of responses. This included representative responses from medical, nursing, support, and dietetic practitioners from 17 of the 20 DHBs (and all tertiary cancer care services) and from public and private practice. In addition, the survey data are supported by open-ended responses that enable a more comprehensive understanding of the topic. A limitation of this study is that HCPs who responded to the survey are likely to have an interest in food and nutrition. The results may over-estimate the nutrition information/support provided and HCP views on the importance of nutrition in cancer care. We also did not survey primary care practitioners. This limited the information we found about nutrition support occurring in primary care.
Conclusions and recommendations
Based on these findings, we recommend a standardised system across all New Zealand’s oncology services that incorporates general introductory advice/information about nutrition (eg, the WCRF dietary recommendations) from all HCPs and more detailed tailored advice (and ongoing support where needed) from dietitians to support the recovery and ongoing health of people diagnosed with cancer. Ideally all patients should have the opportunity to access at least some tailored nutrition advice/information (specific to cancer and treatment type and tailored to individual health and cultural needs) from a dietitian. Such advice/information might be enough to meet the needs of some patients, while others will need more ongoing support from a dietitian and/or other forms of support (eg, financial or practical support) to enable them to successfully incorporate recommendations into their daily lives. Cancer support services could play an important role in providing additional financial (eg, vouchers, foodbanks, supply of fruit/vegetables) and practical (eg, dietitian-led support groups, healthy cooking workshops, access to healthy pre-prepared meals) support for those who need it. Qualitative research to better understand HCP perspectives and barriers/enablers to provision of nutrition information and support in cancer care will help to inform the development of interventions and determine how to best to integrate nutrition into cancer care. Work is also needed to develop and test the impact of potential interventions on cancer outcomes and to understand the long-term health and economic benefits of proposed changes.
Summary
Abstract
Aim
This research sought to identify and understand what nutrition-related information and support is available to people undergoing cancer treatment. We also sought the views on nutrition for cancer among providers of cancer care/support, and barriers/enablers to the provision of nutrition information/support.
Method
Data were collected using online surveys with New Zealand-based healthcare practitioners and support workers. Descriptive analysis was undertaken. Open-ended questions were analysed for explanatory content to help us interpret and understand the results.
Results
Most healthcare practitioners and support workers viewed nutrition as at least moderately important (for cancer recovery, patient wellbeing and preventing cancer recurrence) and believed nutrition information/support should be provided to cancer patients. However, nutrition information and support were not widely available through oncology practices and cancer support services. The main barriers to the provision of nutrition information and support (including access to dietitian appointments) were insufficient funding and lack of time/staff capacity. Additional barriers included a lack of access to evidence-based information and dietary expertise.
Conclusion
Nutrition information and support needs to be more widely available and standardised across New Zealand’s oncology services. Ideally this would include general introductory information about nutrition (eg, World Cancer Research Fund recommendations) from all healthcare practitioners and more detailed tailored advice (and ongoing support where needed) from dietitians.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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Nutrition support in oncology care in Aotearoa New Zealand: current practice, and where to from here?
Recent qualitative research with New Zealand cancer survivors showed that many had a strong interest in pursuing diet as a way to support cancer recovery and prevent recurrence, but they found that access to appropriate evidence-based dietary information and support was lacking.
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