Health professionals’ self-identified knowledge, barriers and educational needs regarding identification and management of adolescent and young adult cancer in New Zealand
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New Zealand’s adolescent and young adult (AYA) cancer population represents those diagnosed between 12 and 24 years of age. Due to their different age-related medical and psychosocial healthcare needs, AYAs are a specialised cohort compared with paediatric or adult cancer patients. Although an AYA cancer diagnosis is rare, with an average of 190 new cases each year representing less than 1% of all new cancer diagnoses in New Zealand, it is the leading cause of disease-related death for this population. Internationally AYAs have not seen the same improvement in survival trends as paediatric and adult cancer patients.[[1]] There is also differential survival by ethnicity within the New Zealand cohort, with Māori and Pacific AYAs experiencing lower survival rates than other ethnic groups.[[2]] Additionally, survival rates for New Zealand AYAs lag by 5% behind their international age-matched cohorts.[[3]]
It is theorised that survival disparities may be impacted by delays in diagnosis in the AYA cancer group. A connection between AYA diagnostic delay and survival is ‘intuitively credible’[[4]] but has proved difficult to quantify.[[5–7]] Qualitatively there is a clear indication that reducing diagnostic delay is an important aspiration for AYA patients and their partners and families.[[6–9]] Reducing delays may allow for timely treatment, prevent unnecessary complications[[10]] and reduce treatment morbidity and psychological distress.[[7]]
A prolonged diagnostic pathway is the result of a complex mix of disease-,[[7,11]] patient-[[12,13]] and healthcare-related factors.[[5,14]] These include, but are not limited to, low levels of health literacy and cancer awareness, vague symptoms that AYAs and primary healthcare professionals (PHPs) can attribute to AYA age and stage and the rarity of AYA cancer.[[12,14–18]] A survey of over 200 young people with cancer conducted in 2018 by the AYA Cancer Network Aotearoa (the ‘Network’) found these issues reflected in the New Zealand cohort. For example, over 50% experienced fatigue as a symptom of their disease, and 35% visited a general practitioner (GP) at least three times before referral to a specialist.[[19]] Reduced access to care has also been associated with a prolonged diagnostic pathway. New Zealand youth are also particularly at risk of not seeking healthcare when needed; one of the reasons is cost, with 43% of 15–24 year olds citing cost as a barrier to visiting a GP in a recent New Zealand survey.[[20,21]] The Ministry of Health only subsidises primary care visits for enrolled youth aged 13 years or younger, which may account for the increase in reported access barriers for young people aged 15 and over.
The Network has a mandate to improve AYA cancer services in New Zealand, which includes working to understand and address survival disparities.[[22]] The survey that is the focus of this article is part of a broader project operationalised by the Network’s Early Identification Working Group (EIWG). Following an extensive literature review on AYA cancer early identification and awareness,[[23]] the EIWG decided to focus on interventions to address PHP awareness. Intervention efficacy for patient-related factors has not been proven long term, and disease-related factors are hard to address through interventions. Therefore, the EIWG felt that directing attention to PHPs would provide the greatest impact with the available resources. In order to create fit-for-purpose interventions, the EIWG agreed that the next step was to understand the current state of PHP knowledge and awareness of AYA cancer pathways and explore their perceptions of educational needs, such as barriers, supports and reception to professional development on AYA cancer. This led to three research questions:
- How do PHPs rate their own knowledge regarding AYA cancer diagnosis and pathways?
- What do PHPs identify that either help or hinder in their diagnosis of AYA cancer?
- What are the barriers and supports to facilitate PHP engagement in professional development regarding AYA cancer?
Method
A survey was considered the best method to capture a snapshot of New Zealand’s PHPs, answer the research questions and begin the initial exploration into improving the identification and management of AYA cancer. A ten-question online survey was created using the Qualtrics survey tool (see Appendix Figure 1). An introduction to the research and a link to the survey were sent to health professional organisations for distribution to their membership through their established communications (eg, social media, email lists, publications). A link was also put onto the Network’s website (https://ayacancernetwork.org.nz/). Before receiving the link (both through professional organisation channels and via the Network’s website), participants were provided with an introduction to the survey, which gave some background to the research and explained that the survey was anonymous and voluntary and that participation indicated consent. The survey was open from March to August 2019.
The survey questions were developed using previous surveys that assessed PHP cancer awareness.[[24,25]] Questions were tailored for the New Zealand audience and additional questions were created to ensure the research questions could be answered. This process was guided by the expertise of the EIWG membership.
The survey started with demographic questions (occupation, year of qualification, work setting and location of work—city, town or rural area). The next section covered PHPs’ knowledge about AYA cancer and providing care for AYAs. Participants used a five-scale system (from ‘extremely knowledgeable’ to ‘not knowledgeable at all’) to rate themselves across four areas related to AYA cancer diagnosis: (1) identifying possible symptoms, (2) diagnostic pathways, (3) consultation with the relevant specialists and (4) referral pathways for an AYA patient with suspected cancer. Following this, respondents were asked whether consultation time impacted their ability to explore symptoms and take a detailed medical history. They were asked to rate this on a scale of five: ‘always’, ‘most of the time’, ‘about half the time’, ‘sometimes’ or ‘never’. The survey again asked respondents to rate themselves on a scale of five, from ‘extremely knowledgeable’ to ‘not knowledgeable at all’, across seven areas associated with AYA cancer. Finally, respondents were asked about professional development: where they source AYA cancer information, barriers to participating in AYA cancer education and their preferred format for professional education.
Based on the Health and Disability Ethics Committee (HDEC) review flowchart and discussions with the research office of the Auckland District Health Board (ADHB), it was determined that ethics approval was not required for the survey. This was because the survey was a general evaluation for the purposes of examining and reviewing practices and processes and no identifying material was asked for or collected from respondents. The survey still adhered to ethical standards, including not collecting or storing identifiable material and asking for informed consent. All statistical analysis for this study was completed using IBM SPSS Statistics.
Results
Eighty-three respondents completed the questionnaire, which represents a completion rate of 93%: five respondents were excluded from the original 88 due to partially completed questionnaires. As the survey was disseminated through various open channels (social media, the Network’s website, various organisations) and not to specific individuals, a response rate could not be calculated.
Most respondents were doctors (55%), of whom 34 were GPs. Nurses made up the next largest proportion (39%), and there was one each for pharmacist, social worker, physiotherapist, medical student and AYA keyworker. Because of the small sample size (and after checking statistical significance for variables such as place of work, location and year of qualification), we decided to undertake the sub-analysis of the findings using two groups: GPs (n=34) and non-GPs (n=49). It was felt that this division was an important one because GPs are commonly the first point of contact between AYAs with cancer and the healthcare system; GPs are well-placed to identify and refer possible cancer diagnoses and are a defined professional group that can be targeted for additional training and support.[[26]]
Figure 1: Respondent-indicated knowledge confidence in the four areas related to AYA cancer.
Figure 1 summarises the respondent-indicated knowledge confidence for the four areas related to AYA cancer. Few respondents from either the GP or non-GP cohorts felt ‘extremely knowledgeable’ or ‘very knowledgeable’ about identifying the possible symptoms of AYA cancer (9% and 10% respectively) or about diagnostic pathways for suspected AYA cancer (9% and 12% respectively). Differences between the two cohorts were most clear in terms of seeking consultation and referral pathways, with non-GPs indicating significantly less knowledge confidence in both areas compared to GPs. Regarding seeking consultation with the relevant specialist experts, only 16% of non-GPs felt ‘extremely knowledgeable’ or ‘very knowledgeable’ compared to 26% of GPs. On the topic of referral pathways, the difference between the two cohorts was smaller, though a higher percentage (18%) of non-GPs compared to the GP cohort (2%) felt ‘extremely knowledgeable’ or ‘very knowledgeable’ about referral pathways for suspected cancer.
In response to whether consultation time ever impacted on the respondent’s ability to explore vague symptoms and take a detailed medical history, 54% answered either ‘always’ or ‘most of the time’. Only 4% of respondents indicated time was ‘never’ a factor in consultation. There was no statistically significant difference in responses between GPs and non-GPs.
The most used sources of AYA cancer information for GPs were peers and colleagues (68%), guidelines (68%), and New Zealand educational resources (Goodfellow, PHARMAC and BPAC) (68%). For non-GPs it was peers and colleagues (55%), cancer health professionals (51%) and guidelines (43%). The Network’s website was the least utilised resource for both GPs (3%) and non-GPs (14%).
The results related to PHPs’ potential barriers to professional education in AYA cancer, and their preferred format for such development showed that PHPs are receptive to the idea of professional development, with only 26% indicating this would not be a priority for them. The majority of respondents (55%) indicated preference for an online delivery for AYA cancer education. Time was cited as the biggest barrier to participation in AYA cancer education for both GPs and non-GPs (76% and 61% respectively). GPs also cited being relieved from duties (65%) and financial reasons (62%) as significant barriers to participation. These two reasons were less of a factor for non-GPs.
Discussion
Providing high-quality healthcare to AYAs with cancer starts with good PHP awareness and understanding of AYA cancer—its symptoms, the diagnostic pathways, who to consult with and how to refer a young person with suspicion of cancer.
Primary healthcare providers (GPs, nurse practitioners, pharmacists, school nurses and those working in student health centres, physiotherapists and people working in urgent care) are among AYAs’ first points of contact for healthcare. PHPs, like parents and peers, can contribute to normalising cancer symptoms in AYAs. So it is important that PHPs are aware of the classic signs of AYA cancer, that they listen to the symptoms AYAs describe and that they follow-up any symptoms that do not recede.[[6]] GPs in particular play a central role across the cancer pathway, providing health information and diagnosis and following up after treatment.[[25–27]]
A focus on providing PHPs with education and support around symptom awareness and diagnostic pathways aligns with the literature and is deliverable in terms of the Network’s expertise and resources. It has been indicated that targeting PHPs’ cancer awareness will have the most immediate impact for AYA cancers and therefore should be a priority audience for AYA health interventions and education.[[17]] A Canadian study found that the longest diagnostic interval was consistently after patient contact with a PHP,[[5]] indicating that improvements in PHP symptom awareness and knowledge of diagnostic and referral pathways could reduce time to diagnosis. A UK study found 46% of GPs felt ‘lack of training’ was a barrier to them identifying cancer in children and young people, and one third felt ‘lack of awareness of symptoms’ was a barrier.[[25]]
The present survey found significant low cancer symptom awareness in PHP respondents—only 23% of respondents felt ‘moderately knowledgeable’, 45% felt ‘slightly knowledgeable’ and 20% ‘not knowledgeable at all’ in identifying the possible symptoms of AYA cancer. Confidence in knowledge about diagnostic pathways was also low for our respondents, with only 9% of GPs and 12% of non-GPs feeling ‘extremely’ or ‘very’ confident in their knowledge in this area. Referral pathway knowledge was slightly higher, though still with room for improvement—44% of GPs and 63% of non-GPs felt ‘slightly knowledgeable’ or ‘not knowledgeable’ about referral pathways for suspected cancer.
Similarly to international findings,[[18]] lack of time in consultations was indicated as a barrier to exploring vague or unfamiliar symptoms, with 54% of respondents reporting that consultation time ‘always’ or ‘most of the time’ impacted their ability to take a history. While extending consultation times is outside the Network’s scope, providing education about clinical aids for AYA cancer recognition, such as the CAUTION mnemonic and the seven sites of signs starting with the letter B, could help ensure symptoms are explored in a short consultation.[[28]]
This survey found that time is also a potential barrier in relation to professional development in AYA cancer for 67% of the total respondents. This is valuable information to know when designing any educational intervention. Time was particularly significant for GPs, with 76% indicating it would be a barrier to them, alongside financial and work cover constraints. Online was the preferred delivery format (55%) for an educational intervention. As a more flexible format, online delivery could help alleviate some of the concerns around time and work cover. Videoconferencing was the next most popular format, particularly for those in towns and rural areas (52%) compared to those in cities (17%). Videoconferencing allows for real-time feedback and interaction and may be a cheaper option, but it does not have the same time flexibility. Given the recent experiences with online and videoconferencing under COVID-19 restrictions, PHPs may have become even more familiar and comfortable with online formats.
Finally, the survey indicated a lack of awareness or use of the Network’s website, with only 3% of GPs and 14% of non-GPs using it as a source of information. Although this may not be unusual given the recency of the Network’s establishment, it highlights the importance of its role in providing a centralised source of information to ensure good and equitable provision of healthcare for AYAs with cancer. At the time of the survey, the Network was updating its website and also creating a range of New Zealand-specific resources for the AYA cancer population. Information for providers and for young people and their whānau is now available on the website (https://ayacancernetwork.org.nz/). For PHPs this includes information across a number of the knowledge areas covered by the survey, including resources and professional development opportunities. The survey also highlighted gaps within the knowledge areas of clinical and diagnostic guidance and referral pathways, so the EIWG will be reviewing and making recommendations to the inclusion of such information on the Network’s website. The New Zealand Adolescent and Young Adult Cancer Action Plan 2020 to 2025 also includes measures to increase its profile with PHPs and other health professionals, including improving the visibility and use of its website as a repository of resources and information on AYA cancer for PHPs.
Strengths and limitations
As health professionals are a heterogeneous group with different training and work experiences, it is a strength of this study that a variety of PHP roles were represented. However, due to the sampling method, a response rate could not be calculated and the survey was open to volunteer bias. However, rather than being representative, this was an exploratory survey designed to gather opinions from a range of PHPs. The small number of respondents also meant further subgroup analysis and comparison was not possible. Future studies could focus on the sub-group of school nurses who provide a first point of contact for many school-aged AYAs. Research into strategies to reduce barriers to healthcare for young people who are not in education, employment or training (NEETs) would also benefit the AYA cancer cohort.
Conclusion
In order for any educational intervention to be useable and well received, it is important to tailor it to the needs of the audience. This survey set out to first answer whether there was an educational need by assessing PHP knowledge confidence across a range of systems associated with early identification of AYA cancer and related to AYA cancer management. The findings show there are knowledge gaps, particularly around AYA cancer symptoms and knowledge of diagnostic pathways. The answer to the second question (What do PHPs identify that either help or hinder in their diagnosis of AYA cancer?) is that having additional knowledge and awareness on the pathways and issues associated with AYA cancer will help support PHPs to have greater confidence. The study also found that much greater promotion of the AYA Cancer Network Aotearoa website (http://ayacancernetwork.org.nz) is needed. Finally, the survey findings provide direction for potential barriers and supports to enable the delivery of such education interventions. These findings can inform educational interventions that target PHPs most exposed to AYAs and improve PHP-related delays in diagnosis for cancer in AYA patients.
Appendix
Summary
Abstract
Aim
To explore primary healthcare professionals’ (PHPs’) knowledge and educational needs regarding identification and referral of adolescents and young adults (AYA) with suspected cancer in New Zealand.
Method
An anonymous online survey targeting PHPs was distributed through health networks during March–August 2019. The survey covered demographics, knowledge of AYA cancer and related topics and preferred sources of AYA cancer information, which includes professional development.
Results
Eighty-three respondents completed the survey. The most prominent education needs were identifying the possible symptoms of AYA cancer, the diagnostic pathways for AYA cancer and the services and supports available for AYAs. Respondents indicated that time was a significant barrier to both diagnosis and professional development regarding AYA cancer. Forty-five respondents (54%) reported that consultation time ‘always’ or ‘most of the time’ impacted their ability to explore vague symptoms, and 67% cited time as the biggest barrier to participating in AYA cancer education.
Conclusion
PHPs are receptive to professional AYA cancer education, and their preference is for online learning. There is a significant self-identified knowledge gap for PHPs related to pre-diagnosis (symptoms and pathways), which could help structure effective and targeted professional education.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
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2) Watson H, Moss R. Adolescents and young adults with cancer in New Zealand-understudied and underserved. The New Zealand Medical Journal. 2018 Jan 19;131(1468):8-11.
3) Ballantine KR, Moss R, Watson H. Adolescent & young adult cancer incidence and survival in Aotearoa 2008-2017. Auckland, New Zealand. 2020.
4) Rubin G, Vedsted P, Emery J. Improving cancer outcomes: better access to diagnostics in primary care could be critical. British Journal of General Practice. 2011: 61, 586; 317–8.
5) Xu Y, Stavrides-Eid M, Baig A et al. Quantifying treatment delays in adolescents and young adults with cancer at McGill University. Current Oncology. 2015 Dec;22(6):e470.
6) Gibson F, Pearce S, Eden T et al. Young people describe their prediagnosis cancer experience. Psycho-Oncology. 2013: 22; 2585–2592.
7) Fern LA, Birch R, Whelan J et al. Why can't we improve the timeliness of cancer diagnosis in children, teenagers, and young adults? British Medical Journal. 2013: 347.
8) AYA Cancer Network Aotearoa. Service provision for adolescent and young adult cancer patients in New Zealand including standards of care. 2016.
9) Dixon-Woods M, Findlay M, Young B et al. Parents’ accounts of obtaining a diagnosis of childhood cancer. The Lancet. 2001: 357; 670–674.
10) Dang-Tan T, Trottier H, Mery LS et al. Delays in Diagnosis and Treatment Among Children and Adolescents with Cancer in Canada. Pediatric Blood Cancer. 2008: 51; 468–74.
11) Ahrensberg JM, Fenger-Grøn M, Vedsted P. Primary Care Use before Cancer Diagnosis in Adolescents and Young Adults – A Nationwide Register Study. PLoS ONE. 2016:11, 5.
12) Kyle R, Forbat L, Rauchhaus P et al. Increased cancer awareness among British adolescents after a school-based educational intervention: a controlled before-and-after study with 6-month follow-up. BMC Public Health. 2013: 13;190.
13) Bleyer A. Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and the importance of clinical trials. Medical and Pediatric Oncology. 2002; 38(1); 1–10.
14) Clark TC, Fleming T, Bullen P et al. Youth’12 Overview: The health and wellbeing of New Zealand secondary school students in 2012. Auckland: The University of Auckland, 2013.
15) Hubbard G, Macmillan I, Canny , et al. Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: a cross-sectional study. BMC Public Health. 2014: 14, 1117.
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17) McGoldrick D, Gordon P, Whiteson M et al. Awareness and Advocacy for Adolescents and Young Adults with Cancer. Cancer. 2011: 117, S10: 2311–5.
18) Gibson F, Pearce S, Fern L et al. Improving the identification of cancer in young people: a scoping review. Expert Review of Quality of Life in Cancer Care. 2017 Mar 4;2(2):87-101.
19) Moss RM, Gooder CL, Watson HJ. Whakarongo mai/Listen to me: Adolescents and young adult experiences of cancer care and support in Aotearoa New Zealand. Results and analysis of the 2018 patient experience survey. Full Report. Auckland, New Zealand. AYA Cancer Network Aotearoa. 2019.
20) Peiris-John R, Farrant B, Fleming T, Bavin L, Archer D, Crengle S et al. Youth19 Rangatahi Smart Survey, Initial Findings: Access to Health Services. 2020.
21) Health Quality and Safety Commission New Zealand [Internet]. The Atlas of Healthcare Variation: Health Service Access. 2020; Available at: https://www.hqsc.govt.nz/our-programmes/health-quality-evaluation/projects/atlas-of-healthcare-variation/health-service-access/.
22) Ministry of Health. New Zealand Cancer Plan: Better, Faster Cancer Care 2015–2018, Wellington: Ministry of Health, 2014.
23) Gooder C. “A constellation of challenges”: Adolescent and Young Adult (AYA) Cancer Early Identification and Awareness Literature Review. AYA Cancer Network Aotearoa, 2018.
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Health professionals’ self-identified knowledge, barriers and educational needs regarding identification and management of adolescent and young adult cancer in New Zealand
View Article PDF
New Zealand’s adolescent and young adult (AYA) cancer population represents those diagnosed between 12 and 24 years of age. Due to their different age-related medical and psychosocial healthcare needs, AYAs are a specialised cohort compared with paediatric or adult cancer patients. Although an AYA cancer diagnosis is rare, with an average of 190 new cases each year representing less than 1% of all new cancer diagnoses in New Zealand, it is the leading cause of disease-related death for this population. Internationally AYAs have not seen the same improvement in survival trends as paediatric and adult cancer patients.[[1]] There is also differential survival by ethnicity within the New Zealand cohort, with Māori and Pacific AYAs experiencing lower survival rates than other ethnic groups.[[2]] Additionally, survival rates for New Zealand AYAs lag by 5% behind their international age-matched cohorts.[[3]]
It is theorised that survival disparities may be impacted by delays in diagnosis in the AYA cancer group. A connection between AYA diagnostic delay and survival is ‘intuitively credible’[[4]] but has proved difficult to quantify.[[5–7]] Qualitatively there is a clear indication that reducing diagnostic delay is an important aspiration for AYA patients and their partners and families.[[6–9]] Reducing delays may allow for timely treatment, prevent unnecessary complications[[10]] and reduce treatment morbidity and psychological distress.[[7]]
A prolonged diagnostic pathway is the result of a complex mix of disease-,[[7,11]] patient-[[12,13]] and healthcare-related factors.[[5,14]] These include, but are not limited to, low levels of health literacy and cancer awareness, vague symptoms that AYAs and primary healthcare professionals (PHPs) can attribute to AYA age and stage and the rarity of AYA cancer.[[12,14–18]] A survey of over 200 young people with cancer conducted in 2018 by the AYA Cancer Network Aotearoa (the ‘Network’) found these issues reflected in the New Zealand cohort. For example, over 50% experienced fatigue as a symptom of their disease, and 35% visited a general practitioner (GP) at least three times before referral to a specialist.[[19]] Reduced access to care has also been associated with a prolonged diagnostic pathway. New Zealand youth are also particularly at risk of not seeking healthcare when needed; one of the reasons is cost, with 43% of 15–24 year olds citing cost as a barrier to visiting a GP in a recent New Zealand survey.[[20,21]] The Ministry of Health only subsidises primary care visits for enrolled youth aged 13 years or younger, which may account for the increase in reported access barriers for young people aged 15 and over.
The Network has a mandate to improve AYA cancer services in New Zealand, which includes working to understand and address survival disparities.[[22]] The survey that is the focus of this article is part of a broader project operationalised by the Network’s Early Identification Working Group (EIWG). Following an extensive literature review on AYA cancer early identification and awareness,[[23]] the EIWG decided to focus on interventions to address PHP awareness. Intervention efficacy for patient-related factors has not been proven long term, and disease-related factors are hard to address through interventions. Therefore, the EIWG felt that directing attention to PHPs would provide the greatest impact with the available resources. In order to create fit-for-purpose interventions, the EIWG agreed that the next step was to understand the current state of PHP knowledge and awareness of AYA cancer pathways and explore their perceptions of educational needs, such as barriers, supports and reception to professional development on AYA cancer. This led to three research questions:
- How do PHPs rate their own knowledge regarding AYA cancer diagnosis and pathways?
- What do PHPs identify that either help or hinder in their diagnosis of AYA cancer?
- What are the barriers and supports to facilitate PHP engagement in professional development regarding AYA cancer?
Method
A survey was considered the best method to capture a snapshot of New Zealand’s PHPs, answer the research questions and begin the initial exploration into improving the identification and management of AYA cancer. A ten-question online survey was created using the Qualtrics survey tool (see Appendix Figure 1). An introduction to the research and a link to the survey were sent to health professional organisations for distribution to their membership through their established communications (eg, social media, email lists, publications). A link was also put onto the Network’s website (https://ayacancernetwork.org.nz/). Before receiving the link (both through professional organisation channels and via the Network’s website), participants were provided with an introduction to the survey, which gave some background to the research and explained that the survey was anonymous and voluntary and that participation indicated consent. The survey was open from March to August 2019.
The survey questions were developed using previous surveys that assessed PHP cancer awareness.[[24,25]] Questions were tailored for the New Zealand audience and additional questions were created to ensure the research questions could be answered. This process was guided by the expertise of the EIWG membership.
The survey started with demographic questions (occupation, year of qualification, work setting and location of work—city, town or rural area). The next section covered PHPs’ knowledge about AYA cancer and providing care for AYAs. Participants used a five-scale system (from ‘extremely knowledgeable’ to ‘not knowledgeable at all’) to rate themselves across four areas related to AYA cancer diagnosis: (1) identifying possible symptoms, (2) diagnostic pathways, (3) consultation with the relevant specialists and (4) referral pathways for an AYA patient with suspected cancer. Following this, respondents were asked whether consultation time impacted their ability to explore symptoms and take a detailed medical history. They were asked to rate this on a scale of five: ‘always’, ‘most of the time’, ‘about half the time’, ‘sometimes’ or ‘never’. The survey again asked respondents to rate themselves on a scale of five, from ‘extremely knowledgeable’ to ‘not knowledgeable at all’, across seven areas associated with AYA cancer. Finally, respondents were asked about professional development: where they source AYA cancer information, barriers to participating in AYA cancer education and their preferred format for professional education.
Based on the Health and Disability Ethics Committee (HDEC) review flowchart and discussions with the research office of the Auckland District Health Board (ADHB), it was determined that ethics approval was not required for the survey. This was because the survey was a general evaluation for the purposes of examining and reviewing practices and processes and no identifying material was asked for or collected from respondents. The survey still adhered to ethical standards, including not collecting or storing identifiable material and asking for informed consent. All statistical analysis for this study was completed using IBM SPSS Statistics.
Results
Eighty-three respondents completed the questionnaire, which represents a completion rate of 93%: five respondents were excluded from the original 88 due to partially completed questionnaires. As the survey was disseminated through various open channels (social media, the Network’s website, various organisations) and not to specific individuals, a response rate could not be calculated.
Most respondents were doctors (55%), of whom 34 were GPs. Nurses made up the next largest proportion (39%), and there was one each for pharmacist, social worker, physiotherapist, medical student and AYA keyworker. Because of the small sample size (and after checking statistical significance for variables such as place of work, location and year of qualification), we decided to undertake the sub-analysis of the findings using two groups: GPs (n=34) and non-GPs (n=49). It was felt that this division was an important one because GPs are commonly the first point of contact between AYAs with cancer and the healthcare system; GPs are well-placed to identify and refer possible cancer diagnoses and are a defined professional group that can be targeted for additional training and support.[[26]]
Figure 1: Respondent-indicated knowledge confidence in the four areas related to AYA cancer.
Figure 1 summarises the respondent-indicated knowledge confidence for the four areas related to AYA cancer. Few respondents from either the GP or non-GP cohorts felt ‘extremely knowledgeable’ or ‘very knowledgeable’ about identifying the possible symptoms of AYA cancer (9% and 10% respectively) or about diagnostic pathways for suspected AYA cancer (9% and 12% respectively). Differences between the two cohorts were most clear in terms of seeking consultation and referral pathways, with non-GPs indicating significantly less knowledge confidence in both areas compared to GPs. Regarding seeking consultation with the relevant specialist experts, only 16% of non-GPs felt ‘extremely knowledgeable’ or ‘very knowledgeable’ compared to 26% of GPs. On the topic of referral pathways, the difference between the two cohorts was smaller, though a higher percentage (18%) of non-GPs compared to the GP cohort (2%) felt ‘extremely knowledgeable’ or ‘very knowledgeable’ about referral pathways for suspected cancer.
In response to whether consultation time ever impacted on the respondent’s ability to explore vague symptoms and take a detailed medical history, 54% answered either ‘always’ or ‘most of the time’. Only 4% of respondents indicated time was ‘never’ a factor in consultation. There was no statistically significant difference in responses between GPs and non-GPs.
The most used sources of AYA cancer information for GPs were peers and colleagues (68%), guidelines (68%), and New Zealand educational resources (Goodfellow, PHARMAC and BPAC) (68%). For non-GPs it was peers and colleagues (55%), cancer health professionals (51%) and guidelines (43%). The Network’s website was the least utilised resource for both GPs (3%) and non-GPs (14%).
The results related to PHPs’ potential barriers to professional education in AYA cancer, and their preferred format for such development showed that PHPs are receptive to the idea of professional development, with only 26% indicating this would not be a priority for them. The majority of respondents (55%) indicated preference for an online delivery for AYA cancer education. Time was cited as the biggest barrier to participation in AYA cancer education for both GPs and non-GPs (76% and 61% respectively). GPs also cited being relieved from duties (65%) and financial reasons (62%) as significant barriers to participation. These two reasons were less of a factor for non-GPs.
Discussion
Providing high-quality healthcare to AYAs with cancer starts with good PHP awareness and understanding of AYA cancer—its symptoms, the diagnostic pathways, who to consult with and how to refer a young person with suspicion of cancer.
Primary healthcare providers (GPs, nurse practitioners, pharmacists, school nurses and those working in student health centres, physiotherapists and people working in urgent care) are among AYAs’ first points of contact for healthcare. PHPs, like parents and peers, can contribute to normalising cancer symptoms in AYAs. So it is important that PHPs are aware of the classic signs of AYA cancer, that they listen to the symptoms AYAs describe and that they follow-up any symptoms that do not recede.[[6]] GPs in particular play a central role across the cancer pathway, providing health information and diagnosis and following up after treatment.[[25–27]]
A focus on providing PHPs with education and support around symptom awareness and diagnostic pathways aligns with the literature and is deliverable in terms of the Network’s expertise and resources. It has been indicated that targeting PHPs’ cancer awareness will have the most immediate impact for AYA cancers and therefore should be a priority audience for AYA health interventions and education.[[17]] A Canadian study found that the longest diagnostic interval was consistently after patient contact with a PHP,[[5]] indicating that improvements in PHP symptom awareness and knowledge of diagnostic and referral pathways could reduce time to diagnosis. A UK study found 46% of GPs felt ‘lack of training’ was a barrier to them identifying cancer in children and young people, and one third felt ‘lack of awareness of symptoms’ was a barrier.[[25]]
The present survey found significant low cancer symptom awareness in PHP respondents—only 23% of respondents felt ‘moderately knowledgeable’, 45% felt ‘slightly knowledgeable’ and 20% ‘not knowledgeable at all’ in identifying the possible symptoms of AYA cancer. Confidence in knowledge about diagnostic pathways was also low for our respondents, with only 9% of GPs and 12% of non-GPs feeling ‘extremely’ or ‘very’ confident in their knowledge in this area. Referral pathway knowledge was slightly higher, though still with room for improvement—44% of GPs and 63% of non-GPs felt ‘slightly knowledgeable’ or ‘not knowledgeable’ about referral pathways for suspected cancer.
Similarly to international findings,[[18]] lack of time in consultations was indicated as a barrier to exploring vague or unfamiliar symptoms, with 54% of respondents reporting that consultation time ‘always’ or ‘most of the time’ impacted their ability to take a history. While extending consultation times is outside the Network’s scope, providing education about clinical aids for AYA cancer recognition, such as the CAUTION mnemonic and the seven sites of signs starting with the letter B, could help ensure symptoms are explored in a short consultation.[[28]]
This survey found that time is also a potential barrier in relation to professional development in AYA cancer for 67% of the total respondents. This is valuable information to know when designing any educational intervention. Time was particularly significant for GPs, with 76% indicating it would be a barrier to them, alongside financial and work cover constraints. Online was the preferred delivery format (55%) for an educational intervention. As a more flexible format, online delivery could help alleviate some of the concerns around time and work cover. Videoconferencing was the next most popular format, particularly for those in towns and rural areas (52%) compared to those in cities (17%). Videoconferencing allows for real-time feedback and interaction and may be a cheaper option, but it does not have the same time flexibility. Given the recent experiences with online and videoconferencing under COVID-19 restrictions, PHPs may have become even more familiar and comfortable with online formats.
Finally, the survey indicated a lack of awareness or use of the Network’s website, with only 3% of GPs and 14% of non-GPs using it as a source of information. Although this may not be unusual given the recency of the Network’s establishment, it highlights the importance of its role in providing a centralised source of information to ensure good and equitable provision of healthcare for AYAs with cancer. At the time of the survey, the Network was updating its website and also creating a range of New Zealand-specific resources for the AYA cancer population. Information for providers and for young people and their whānau is now available on the website (https://ayacancernetwork.org.nz/). For PHPs this includes information across a number of the knowledge areas covered by the survey, including resources and professional development opportunities. The survey also highlighted gaps within the knowledge areas of clinical and diagnostic guidance and referral pathways, so the EIWG will be reviewing and making recommendations to the inclusion of such information on the Network’s website. The New Zealand Adolescent and Young Adult Cancer Action Plan 2020 to 2025 also includes measures to increase its profile with PHPs and other health professionals, including improving the visibility and use of its website as a repository of resources and information on AYA cancer for PHPs.
Strengths and limitations
As health professionals are a heterogeneous group with different training and work experiences, it is a strength of this study that a variety of PHP roles were represented. However, due to the sampling method, a response rate could not be calculated and the survey was open to volunteer bias. However, rather than being representative, this was an exploratory survey designed to gather opinions from a range of PHPs. The small number of respondents also meant further subgroup analysis and comparison was not possible. Future studies could focus on the sub-group of school nurses who provide a first point of contact for many school-aged AYAs. Research into strategies to reduce barriers to healthcare for young people who are not in education, employment or training (NEETs) would also benefit the AYA cancer cohort.
Conclusion
In order for any educational intervention to be useable and well received, it is important to tailor it to the needs of the audience. This survey set out to first answer whether there was an educational need by assessing PHP knowledge confidence across a range of systems associated with early identification of AYA cancer and related to AYA cancer management. The findings show there are knowledge gaps, particularly around AYA cancer symptoms and knowledge of diagnostic pathways. The answer to the second question (What do PHPs identify that either help or hinder in their diagnosis of AYA cancer?) is that having additional knowledge and awareness on the pathways and issues associated with AYA cancer will help support PHPs to have greater confidence. The study also found that much greater promotion of the AYA Cancer Network Aotearoa website (http://ayacancernetwork.org.nz) is needed. Finally, the survey findings provide direction for potential barriers and supports to enable the delivery of such education interventions. These findings can inform educational interventions that target PHPs most exposed to AYAs and improve PHP-related delays in diagnosis for cancer in AYA patients.
Appendix
Summary
Abstract
Aim
To explore primary healthcare professionals’ (PHPs’) knowledge and educational needs regarding identification and referral of adolescents and young adults (AYA) with suspected cancer in New Zealand.
Method
An anonymous online survey targeting PHPs was distributed through health networks during March–August 2019. The survey covered demographics, knowledge of AYA cancer and related topics and preferred sources of AYA cancer information, which includes professional development.
Results
Eighty-three respondents completed the survey. The most prominent education needs were identifying the possible symptoms of AYA cancer, the diagnostic pathways for AYA cancer and the services and supports available for AYAs. Respondents indicated that time was a significant barrier to both diagnosis and professional development regarding AYA cancer. Forty-five respondents (54%) reported that consultation time ‘always’ or ‘most of the time’ impacted their ability to explore vague symptoms, and 67% cited time as the biggest barrier to participating in AYA cancer education.
Conclusion
PHPs are receptive to professional AYA cancer education, and their preference is for online learning. There is a significant self-identified knowledge gap for PHPs related to pre-diagnosis (symptoms and pathways), which could help structure effective and targeted professional education.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
1) Burkart M, Sanford S, Dinner S, Sharp L, Kinahan K. Future health of AYA survivors. Pediatr Blood Cancer. 2019; 66:e27516.
2) Watson H, Moss R. Adolescents and young adults with cancer in New Zealand-understudied and underserved. The New Zealand Medical Journal. 2018 Jan 19;131(1468):8-11.
3) Ballantine KR, Moss R, Watson H. Adolescent & young adult cancer incidence and survival in Aotearoa 2008-2017. Auckland, New Zealand. 2020.
4) Rubin G, Vedsted P, Emery J. Improving cancer outcomes: better access to diagnostics in primary care could be critical. British Journal of General Practice. 2011: 61, 586; 317–8.
5) Xu Y, Stavrides-Eid M, Baig A et al. Quantifying treatment delays in adolescents and young adults with cancer at McGill University. Current Oncology. 2015 Dec;22(6):e470.
6) Gibson F, Pearce S, Eden T et al. Young people describe their prediagnosis cancer experience. Psycho-Oncology. 2013: 22; 2585–2592.
7) Fern LA, Birch R, Whelan J et al. Why can't we improve the timeliness of cancer diagnosis in children, teenagers, and young adults? British Medical Journal. 2013: 347.
8) AYA Cancer Network Aotearoa. Service provision for adolescent and young adult cancer patients in New Zealand including standards of care. 2016.
9) Dixon-Woods M, Findlay M, Young B et al. Parents’ accounts of obtaining a diagnosis of childhood cancer. The Lancet. 2001: 357; 670–674.
10) Dang-Tan T, Trottier H, Mery LS et al. Delays in Diagnosis and Treatment Among Children and Adolescents with Cancer in Canada. Pediatric Blood Cancer. 2008: 51; 468–74.
11) Ahrensberg JM, Fenger-Grøn M, Vedsted P. Primary Care Use before Cancer Diagnosis in Adolescents and Young Adults – A Nationwide Register Study. PLoS ONE. 2016:11, 5.
12) Kyle R, Forbat L, Rauchhaus P et al. Increased cancer awareness among British adolescents after a school-based educational intervention: a controlled before-and-after study with 6-month follow-up. BMC Public Health. 2013: 13;190.
13) Bleyer A. Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and the importance of clinical trials. Medical and Pediatric Oncology. 2002; 38(1); 1–10.
14) Clark TC, Fleming T, Bullen P et al. Youth’12 Overview: The health and wellbeing of New Zealand secondary school students in 2012. Auckland: The University of Auckland, 2013.
15) Hubbard G, Macmillan I, Canny , et al. Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: a cross-sectional study. BMC Public Health. 2014: 14, 1117.
16) Austoker J, Bankhead C, Forbes LJL et al. Interventions to promote cancer awareness and early presentation: systematic review. British Journal of Cancer. 2009; 101;S31–S39.
17) McGoldrick D, Gordon P, Whiteson M et al. Awareness and Advocacy for Adolescents and Young Adults with Cancer. Cancer. 2011: 117, S10: 2311–5.
18) Gibson F, Pearce S, Fern L et al. Improving the identification of cancer in young people: a scoping review. Expert Review of Quality of Life in Cancer Care. 2017 Mar 4;2(2):87-101.
19) Moss RM, Gooder CL, Watson HJ. Whakarongo mai/Listen to me: Adolescents and young adult experiences of cancer care and support in Aotearoa New Zealand. Results and analysis of the 2018 patient experience survey. Full Report. Auckland, New Zealand. AYA Cancer Network Aotearoa. 2019.
20) Peiris-John R, Farrant B, Fleming T, Bavin L, Archer D, Crengle S et al. Youth19 Rangatahi Smart Survey, Initial Findings: Access to Health Services. 2020.
21) Health Quality and Safety Commission New Zealand [Internet]. The Atlas of Healthcare Variation: Health Service Access. 2020; Available at: https://www.hqsc.govt.nz/our-programmes/health-quality-evaluation/projects/atlas-of-healthcare-variation/health-service-access/.
22) Ministry of Health. New Zealand Cancer Plan: Better, Faster Cancer Care 2015–2018, Wellington: Ministry of Health, 2014.
23) Gooder C. “A constellation of challenges”: Adolescent and Young Adult (AYA) Cancer Early Identification and Awareness Literature Review. AYA Cancer Network Aotearoa, 2018.
24) Bradford NK, Greenslade R, Edwards RM et al. Educational needs of health professionals caring for adolescents and young adults with cancer. Journal of adolescent and young adult oncology. 2018;7(3):298-305.
25) CLIC Sargent. The Best Chance from the Start: Improving Support to Identify Cancer in Children and Young People UK. 2016.
26) Patterson P, Allison KR, Milley KM et al. General practitioners’ management of cancers in Australian adolescents and young adults. European Journal of Cancer Care. 2018: 27, 6.
27) Ng M, Forsyth T, Trahair N et al. Adolescents, young adults and cancer: what GPs need to know. Medicine Today. 2017 Aug;18(8):14-22.
28) Bleyer A. CAUTION! Consider cancer: common symptoms and signs for early detection of cancer in young adults. Seminars in oncology. 2009; 36(3); 207-212.
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Health professionals’ self-identified knowledge, barriers and educational needs regarding identification and management of adolescent and young adult cancer in New Zealand
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New Zealand’s adolescent and young adult (AYA) cancer population represents those diagnosed between 12 and 24 years of age. Due to their different age-related medical and psychosocial healthcare needs, AYAs are a specialised cohort compared with paediatric or adult cancer patients. Although an AYA cancer diagnosis is rare, with an average of 190 new cases each year representing less than 1% of all new cancer diagnoses in New Zealand, it is the leading cause of disease-related death for this population. Internationally AYAs have not seen the same improvement in survival trends as paediatric and adult cancer patients.[[1]] There is also differential survival by ethnicity within the New Zealand cohort, with Māori and Pacific AYAs experiencing lower survival rates than other ethnic groups.[[2]] Additionally, survival rates for New Zealand AYAs lag by 5% behind their international age-matched cohorts.[[3]]
It is theorised that survival disparities may be impacted by delays in diagnosis in the AYA cancer group. A connection between AYA diagnostic delay and survival is ‘intuitively credible’[[4]] but has proved difficult to quantify.[[5–7]] Qualitatively there is a clear indication that reducing diagnostic delay is an important aspiration for AYA patients and their partners and families.[[6–9]] Reducing delays may allow for timely treatment, prevent unnecessary complications[[10]] and reduce treatment morbidity and psychological distress.[[7]]
A prolonged diagnostic pathway is the result of a complex mix of disease-,[[7,11]] patient-[[12,13]] and healthcare-related factors.[[5,14]] These include, but are not limited to, low levels of health literacy and cancer awareness, vague symptoms that AYAs and primary healthcare professionals (PHPs) can attribute to AYA age and stage and the rarity of AYA cancer.[[12,14–18]] A survey of over 200 young people with cancer conducted in 2018 by the AYA Cancer Network Aotearoa (the ‘Network’) found these issues reflected in the New Zealand cohort. For example, over 50% experienced fatigue as a symptom of their disease, and 35% visited a general practitioner (GP) at least three times before referral to a specialist.[[19]] Reduced access to care has also been associated with a prolonged diagnostic pathway. New Zealand youth are also particularly at risk of not seeking healthcare when needed; one of the reasons is cost, with 43% of 15–24 year olds citing cost as a barrier to visiting a GP in a recent New Zealand survey.[[20,21]] The Ministry of Health only subsidises primary care visits for enrolled youth aged 13 years or younger, which may account for the increase in reported access barriers for young people aged 15 and over.
The Network has a mandate to improve AYA cancer services in New Zealand, which includes working to understand and address survival disparities.[[22]] The survey that is the focus of this article is part of a broader project operationalised by the Network’s Early Identification Working Group (EIWG). Following an extensive literature review on AYA cancer early identification and awareness,[[23]] the EIWG decided to focus on interventions to address PHP awareness. Intervention efficacy for patient-related factors has not been proven long term, and disease-related factors are hard to address through interventions. Therefore, the EIWG felt that directing attention to PHPs would provide the greatest impact with the available resources. In order to create fit-for-purpose interventions, the EIWG agreed that the next step was to understand the current state of PHP knowledge and awareness of AYA cancer pathways and explore their perceptions of educational needs, such as barriers, supports and reception to professional development on AYA cancer. This led to three research questions:
- How do PHPs rate their own knowledge regarding AYA cancer diagnosis and pathways?
- What do PHPs identify that either help or hinder in their diagnosis of AYA cancer?
- What are the barriers and supports to facilitate PHP engagement in professional development regarding AYA cancer?
Method
A survey was considered the best method to capture a snapshot of New Zealand’s PHPs, answer the research questions and begin the initial exploration into improving the identification and management of AYA cancer. A ten-question online survey was created using the Qualtrics survey tool (see Appendix Figure 1). An introduction to the research and a link to the survey were sent to health professional organisations for distribution to their membership through their established communications (eg, social media, email lists, publications). A link was also put onto the Network’s website (https://ayacancernetwork.org.nz/). Before receiving the link (both through professional organisation channels and via the Network’s website), participants were provided with an introduction to the survey, which gave some background to the research and explained that the survey was anonymous and voluntary and that participation indicated consent. The survey was open from March to August 2019.
The survey questions were developed using previous surveys that assessed PHP cancer awareness.[[24,25]] Questions were tailored for the New Zealand audience and additional questions were created to ensure the research questions could be answered. This process was guided by the expertise of the EIWG membership.
The survey started with demographic questions (occupation, year of qualification, work setting and location of work—city, town or rural area). The next section covered PHPs’ knowledge about AYA cancer and providing care for AYAs. Participants used a five-scale system (from ‘extremely knowledgeable’ to ‘not knowledgeable at all’) to rate themselves across four areas related to AYA cancer diagnosis: (1) identifying possible symptoms, (2) diagnostic pathways, (3) consultation with the relevant specialists and (4) referral pathways for an AYA patient with suspected cancer. Following this, respondents were asked whether consultation time impacted their ability to explore symptoms and take a detailed medical history. They were asked to rate this on a scale of five: ‘always’, ‘most of the time’, ‘about half the time’, ‘sometimes’ or ‘never’. The survey again asked respondents to rate themselves on a scale of five, from ‘extremely knowledgeable’ to ‘not knowledgeable at all’, across seven areas associated with AYA cancer. Finally, respondents were asked about professional development: where they source AYA cancer information, barriers to participating in AYA cancer education and their preferred format for professional education.
Based on the Health and Disability Ethics Committee (HDEC) review flowchart and discussions with the research office of the Auckland District Health Board (ADHB), it was determined that ethics approval was not required for the survey. This was because the survey was a general evaluation for the purposes of examining and reviewing practices and processes and no identifying material was asked for or collected from respondents. The survey still adhered to ethical standards, including not collecting or storing identifiable material and asking for informed consent. All statistical analysis for this study was completed using IBM SPSS Statistics.
Results
Eighty-three respondents completed the questionnaire, which represents a completion rate of 93%: five respondents were excluded from the original 88 due to partially completed questionnaires. As the survey was disseminated through various open channels (social media, the Network’s website, various organisations) and not to specific individuals, a response rate could not be calculated.
Most respondents were doctors (55%), of whom 34 were GPs. Nurses made up the next largest proportion (39%), and there was one each for pharmacist, social worker, physiotherapist, medical student and AYA keyworker. Because of the small sample size (and after checking statistical significance for variables such as place of work, location and year of qualification), we decided to undertake the sub-analysis of the findings using two groups: GPs (n=34) and non-GPs (n=49). It was felt that this division was an important one because GPs are commonly the first point of contact between AYAs with cancer and the healthcare system; GPs are well-placed to identify and refer possible cancer diagnoses and are a defined professional group that can be targeted for additional training and support.[[26]]
Figure 1: Respondent-indicated knowledge confidence in the four areas related to AYA cancer.
Figure 1 summarises the respondent-indicated knowledge confidence for the four areas related to AYA cancer. Few respondents from either the GP or non-GP cohorts felt ‘extremely knowledgeable’ or ‘very knowledgeable’ about identifying the possible symptoms of AYA cancer (9% and 10% respectively) or about diagnostic pathways for suspected AYA cancer (9% and 12% respectively). Differences between the two cohorts were most clear in terms of seeking consultation and referral pathways, with non-GPs indicating significantly less knowledge confidence in both areas compared to GPs. Regarding seeking consultation with the relevant specialist experts, only 16% of non-GPs felt ‘extremely knowledgeable’ or ‘very knowledgeable’ compared to 26% of GPs. On the topic of referral pathways, the difference between the two cohorts was smaller, though a higher percentage (18%) of non-GPs compared to the GP cohort (2%) felt ‘extremely knowledgeable’ or ‘very knowledgeable’ about referral pathways for suspected cancer.
In response to whether consultation time ever impacted on the respondent’s ability to explore vague symptoms and take a detailed medical history, 54% answered either ‘always’ or ‘most of the time’. Only 4% of respondents indicated time was ‘never’ a factor in consultation. There was no statistically significant difference in responses between GPs and non-GPs.
The most used sources of AYA cancer information for GPs were peers and colleagues (68%), guidelines (68%), and New Zealand educational resources (Goodfellow, PHARMAC and BPAC) (68%). For non-GPs it was peers and colleagues (55%), cancer health professionals (51%) and guidelines (43%). The Network’s website was the least utilised resource for both GPs (3%) and non-GPs (14%).
The results related to PHPs’ potential barriers to professional education in AYA cancer, and their preferred format for such development showed that PHPs are receptive to the idea of professional development, with only 26% indicating this would not be a priority for them. The majority of respondents (55%) indicated preference for an online delivery for AYA cancer education. Time was cited as the biggest barrier to participation in AYA cancer education for both GPs and non-GPs (76% and 61% respectively). GPs also cited being relieved from duties (65%) and financial reasons (62%) as significant barriers to participation. These two reasons were less of a factor for non-GPs.
Discussion
Providing high-quality healthcare to AYAs with cancer starts with good PHP awareness and understanding of AYA cancer—its symptoms, the diagnostic pathways, who to consult with and how to refer a young person with suspicion of cancer.
Primary healthcare providers (GPs, nurse practitioners, pharmacists, school nurses and those working in student health centres, physiotherapists and people working in urgent care) are among AYAs’ first points of contact for healthcare. PHPs, like parents and peers, can contribute to normalising cancer symptoms in AYAs. So it is important that PHPs are aware of the classic signs of AYA cancer, that they listen to the symptoms AYAs describe and that they follow-up any symptoms that do not recede.[[6]] GPs in particular play a central role across the cancer pathway, providing health information and diagnosis and following up after treatment.[[25–27]]
A focus on providing PHPs with education and support around symptom awareness and diagnostic pathways aligns with the literature and is deliverable in terms of the Network’s expertise and resources. It has been indicated that targeting PHPs’ cancer awareness will have the most immediate impact for AYA cancers and therefore should be a priority audience for AYA health interventions and education.[[17]] A Canadian study found that the longest diagnostic interval was consistently after patient contact with a PHP,[[5]] indicating that improvements in PHP symptom awareness and knowledge of diagnostic and referral pathways could reduce time to diagnosis. A UK study found 46% of GPs felt ‘lack of training’ was a barrier to them identifying cancer in children and young people, and one third felt ‘lack of awareness of symptoms’ was a barrier.[[25]]
The present survey found significant low cancer symptom awareness in PHP respondents—only 23% of respondents felt ‘moderately knowledgeable’, 45% felt ‘slightly knowledgeable’ and 20% ‘not knowledgeable at all’ in identifying the possible symptoms of AYA cancer. Confidence in knowledge about diagnostic pathways was also low for our respondents, with only 9% of GPs and 12% of non-GPs feeling ‘extremely’ or ‘very’ confident in their knowledge in this area. Referral pathway knowledge was slightly higher, though still with room for improvement—44% of GPs and 63% of non-GPs felt ‘slightly knowledgeable’ or ‘not knowledgeable’ about referral pathways for suspected cancer.
Similarly to international findings,[[18]] lack of time in consultations was indicated as a barrier to exploring vague or unfamiliar symptoms, with 54% of respondents reporting that consultation time ‘always’ or ‘most of the time’ impacted their ability to take a history. While extending consultation times is outside the Network’s scope, providing education about clinical aids for AYA cancer recognition, such as the CAUTION mnemonic and the seven sites of signs starting with the letter B, could help ensure symptoms are explored in a short consultation.[[28]]
This survey found that time is also a potential barrier in relation to professional development in AYA cancer for 67% of the total respondents. This is valuable information to know when designing any educational intervention. Time was particularly significant for GPs, with 76% indicating it would be a barrier to them, alongside financial and work cover constraints. Online was the preferred delivery format (55%) for an educational intervention. As a more flexible format, online delivery could help alleviate some of the concerns around time and work cover. Videoconferencing was the next most popular format, particularly for those in towns and rural areas (52%) compared to those in cities (17%). Videoconferencing allows for real-time feedback and interaction and may be a cheaper option, but it does not have the same time flexibility. Given the recent experiences with online and videoconferencing under COVID-19 restrictions, PHPs may have become even more familiar and comfortable with online formats.
Finally, the survey indicated a lack of awareness or use of the Network’s website, with only 3% of GPs and 14% of non-GPs using it as a source of information. Although this may not be unusual given the recency of the Network’s establishment, it highlights the importance of its role in providing a centralised source of information to ensure good and equitable provision of healthcare for AYAs with cancer. At the time of the survey, the Network was updating its website and also creating a range of New Zealand-specific resources for the AYA cancer population. Information for providers and for young people and their whānau is now available on the website (https://ayacancernetwork.org.nz/). For PHPs this includes information across a number of the knowledge areas covered by the survey, including resources and professional development opportunities. The survey also highlighted gaps within the knowledge areas of clinical and diagnostic guidance and referral pathways, so the EIWG will be reviewing and making recommendations to the inclusion of such information on the Network’s website. The New Zealand Adolescent and Young Adult Cancer Action Plan 2020 to 2025 also includes measures to increase its profile with PHPs and other health professionals, including improving the visibility and use of its website as a repository of resources and information on AYA cancer for PHPs.
Strengths and limitations
As health professionals are a heterogeneous group with different training and work experiences, it is a strength of this study that a variety of PHP roles were represented. However, due to the sampling method, a response rate could not be calculated and the survey was open to volunteer bias. However, rather than being representative, this was an exploratory survey designed to gather opinions from a range of PHPs. The small number of respondents also meant further subgroup analysis and comparison was not possible. Future studies could focus on the sub-group of school nurses who provide a first point of contact for many school-aged AYAs. Research into strategies to reduce barriers to healthcare for young people who are not in education, employment or training (NEETs) would also benefit the AYA cancer cohort.
Conclusion
In order for any educational intervention to be useable and well received, it is important to tailor it to the needs of the audience. This survey set out to first answer whether there was an educational need by assessing PHP knowledge confidence across a range of systems associated with early identification of AYA cancer and related to AYA cancer management. The findings show there are knowledge gaps, particularly around AYA cancer symptoms and knowledge of diagnostic pathways. The answer to the second question (What do PHPs identify that either help or hinder in their diagnosis of AYA cancer?) is that having additional knowledge and awareness on the pathways and issues associated with AYA cancer will help support PHPs to have greater confidence. The study also found that much greater promotion of the AYA Cancer Network Aotearoa website (http://ayacancernetwork.org.nz) is needed. Finally, the survey findings provide direction for potential barriers and supports to enable the delivery of such education interventions. These findings can inform educational interventions that target PHPs most exposed to AYAs and improve PHP-related delays in diagnosis for cancer in AYA patients.
Appendix
Summary
Abstract
Aim
To explore primary healthcare professionals’ (PHPs’) knowledge and educational needs regarding identification and referral of adolescents and young adults (AYA) with suspected cancer in New Zealand.
Method
An anonymous online survey targeting PHPs was distributed through health networks during March–August 2019. The survey covered demographics, knowledge of AYA cancer and related topics and preferred sources of AYA cancer information, which includes professional development.
Results
Eighty-three respondents completed the survey. The most prominent education needs were identifying the possible symptoms of AYA cancer, the diagnostic pathways for AYA cancer and the services and supports available for AYAs. Respondents indicated that time was a significant barrier to both diagnosis and professional development regarding AYA cancer. Forty-five respondents (54%) reported that consultation time ‘always’ or ‘most of the time’ impacted their ability to explore vague symptoms, and 67% cited time as the biggest barrier to participating in AYA cancer education.
Conclusion
PHPs are receptive to professional AYA cancer education, and their preference is for online learning. There is a significant self-identified knowledge gap for PHPs related to pre-diagnosis (symptoms and pathways), which could help structure effective and targeted professional education.
Author Information
Acknowledgements
Correspondence
Correspondence Email
Competing Interests
1) Burkart M, Sanford S, Dinner S, Sharp L, Kinahan K. Future health of AYA survivors. Pediatr Blood Cancer. 2019; 66:e27516.
2) Watson H, Moss R. Adolescents and young adults with cancer in New Zealand-understudied and underserved. The New Zealand Medical Journal. 2018 Jan 19;131(1468):8-11.
3) Ballantine KR, Moss R, Watson H. Adolescent & young adult cancer incidence and survival in Aotearoa 2008-2017. Auckland, New Zealand. 2020.
4) Rubin G, Vedsted P, Emery J. Improving cancer outcomes: better access to diagnostics in primary care could be critical. British Journal of General Practice. 2011: 61, 586; 317–8.
5) Xu Y, Stavrides-Eid M, Baig A et al. Quantifying treatment delays in adolescents and young adults with cancer at McGill University. Current Oncology. 2015 Dec;22(6):e470.
6) Gibson F, Pearce S, Eden T et al. Young people describe their prediagnosis cancer experience. Psycho-Oncology. 2013: 22; 2585–2592.
7) Fern LA, Birch R, Whelan J et al. Why can't we improve the timeliness of cancer diagnosis in children, teenagers, and young adults? British Medical Journal. 2013: 347.
8) AYA Cancer Network Aotearoa. Service provision for adolescent and young adult cancer patients in New Zealand including standards of care. 2016.
9) Dixon-Woods M, Findlay M, Young B et al. Parents’ accounts of obtaining a diagnosis of childhood cancer. The Lancet. 2001: 357; 670–674.
10) Dang-Tan T, Trottier H, Mery LS et al. Delays in Diagnosis and Treatment Among Children and Adolescents with Cancer in Canada. Pediatric Blood Cancer. 2008: 51; 468–74.
11) Ahrensberg JM, Fenger-Grøn M, Vedsted P. Primary Care Use before Cancer Diagnosis in Adolescents and Young Adults – A Nationwide Register Study. PLoS ONE. 2016:11, 5.
12) Kyle R, Forbat L, Rauchhaus P et al. Increased cancer awareness among British adolescents after a school-based educational intervention: a controlled before-and-after study with 6-month follow-up. BMC Public Health. 2013: 13;190.
13) Bleyer A. Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and the importance of clinical trials. Medical and Pediatric Oncology. 2002; 38(1); 1–10.
14) Clark TC, Fleming T, Bullen P et al. Youth’12 Overview: The health and wellbeing of New Zealand secondary school students in 2012. Auckland: The University of Auckland, 2013.
15) Hubbard G, Macmillan I, Canny , et al. Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: a cross-sectional study. BMC Public Health. 2014: 14, 1117.
16) Austoker J, Bankhead C, Forbes LJL et al. Interventions to promote cancer awareness and early presentation: systematic review. British Journal of Cancer. 2009; 101;S31–S39.
17) McGoldrick D, Gordon P, Whiteson M et al. Awareness and Advocacy for Adolescents and Young Adults with Cancer. Cancer. 2011: 117, S10: 2311–5.
18) Gibson F, Pearce S, Fern L et al. Improving the identification of cancer in young people: a scoping review. Expert Review of Quality of Life in Cancer Care. 2017 Mar 4;2(2):87-101.
19) Moss RM, Gooder CL, Watson HJ. Whakarongo mai/Listen to me: Adolescents and young adult experiences of cancer care and support in Aotearoa New Zealand. Results and analysis of the 2018 patient experience survey. Full Report. Auckland, New Zealand. AYA Cancer Network Aotearoa. 2019.
20) Peiris-John R, Farrant B, Fleming T, Bavin L, Archer D, Crengle S et al. Youth19 Rangatahi Smart Survey, Initial Findings: Access to Health Services. 2020.
21) Health Quality and Safety Commission New Zealand [Internet]. The Atlas of Healthcare Variation: Health Service Access. 2020; Available at: https://www.hqsc.govt.nz/our-programmes/health-quality-evaluation/projects/atlas-of-healthcare-variation/health-service-access/.
22) Ministry of Health. New Zealand Cancer Plan: Better, Faster Cancer Care 2015–2018, Wellington: Ministry of Health, 2014.
23) Gooder C. “A constellation of challenges”: Adolescent and Young Adult (AYA) Cancer Early Identification and Awareness Literature Review. AYA Cancer Network Aotearoa, 2018.
24) Bradford NK, Greenslade R, Edwards RM et al. Educational needs of health professionals caring for adolescents and young adults with cancer. Journal of adolescent and young adult oncology. 2018;7(3):298-305.
25) CLIC Sargent. The Best Chance from the Start: Improving Support to Identify Cancer in Children and Young People UK. 2016.
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Health professionals’ self-identified knowledge, barriers and educational needs regarding identification and management of adolescent and young adult cancer in New Zealand
New Zealand’s adolescent and young adult (AYA) cancer population represents those diagnosed between 12 and 24 years of age. Due to their different age-related medical and psychosocial healthcare needs, AYAs are a specialised cohort compared with paediatric or adult cancer patients.
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