Complementary and Alternative Medicine (CAM) is defined in New Zealand as an area of healthcare external to conventional biomedicine.[[1]] CAM can be used to either supplement (complementary) or replace (alternative) conventional therapy. The National Centre for Complementary and Integrative Health (NCCIH) classifies CAM into 5 categories: biologically based therapies, manipulative and body-based therapies, energy therapies, alternative medicine systems and mind-body interventions.[[2]] Despite attempts to define and categorise CAM, CAM is a spectrum of diverse and constantly evolving interventions. Most mind-body interventions (e.g., yoga, meditation) are harmless and widely accepted, while some CAM (e.g., acupuncture) have robust evidence for alleviating symptoms that stem from cancer and treatment toxicity. Unfortunately, a significant number of CAM are devoid of evidence and are only supported by pseudoscience.[[3]]

Numerous studies have reported high frequencies of CAM use among patients with malignant diagnoses.[[4,5]] A systematic review published in 2012 reported CAM prevalence at 40% in its patient population, although prevalence rates vary widely (34–83%) due to study methodology and variations in the definition of CAM.[[6]] CAM use appears to have risen over the last two decades and has developed into a multi-billion-dollar industry.[[7,8]] Propensity towards CAM uptake appears to be associated with the female gender, middle-age, white/European descent, higher educational/socio-economic profile, high levels of physical activity, anxiety and dissatisfaction with conventional healthcare providers.[[9–11]]

The sheer number and heterogeneity of CAM presents a formidable challenge to medical oncologists and haematologists involved in cancer care. While some complementary therapies have been proven to be useful as supportive measures for patients undergoing conventional anti-cancer therapy, many are unsubstantiated and potentially harmful.[[12]] Risks of CAM use include potential interactions with conventional therapies, direct toxicities, unknown active constituents/manufacturing quality and nocebo effect.[[13]] Most importantly, CAM users are at risk of declining conventional therapies in favour of CAM often due to pressure by family/friends, misinformation perpetuated on the internet/social media and unscrupulous marketing. Use of alternative therapy has been shown to dramatically lower survival outcomes among patients with non-metastatic breast and colorectal cancer.[[14]]

There is a paucity of data around CAM use among patients with a cancer diagnosis in New Zealand. In a study published by the MidCentral medical oncology services in 2003, CAM prevalence was documented in 49% of respondents with word-of-mouth being the most common source of CAM information.[[15]] A substantial majority of CAM users found CAM helpful while, 89% felt that CAM was safe. In another study in New Zealand utilising an anonymous telephone questionnaire, 28% of respondents felt CAM had an equal or better chance of curing cancer compared to conventional treatment, while 32% felt that CAM could be used instead of conventional therapy.[[16]]

In this study, we report the prevalence of CAM use among patients with a solid organ or haematological malignancy receiving treatment and follow-up at an outpatient regional cancer service in New Zealand. Secondary objectives include determining the types of CAM used, the sources of CAM information and patient perspectives on CAM.

Method

The Jim Carney Cancer Treatment Centre (JCC) based at Whangārei Base Hospital (WBH) is the sole public cancer care provider in the Northland region of New Zealand, servicing a population of close to 200,000. Northland is one of New Zealand’s least urbanised and most socio-economically deprived regions, with Māori making up a substantially higher proportion of the population (31%).

An anonymous, four-page self-administered paper questionnaire was designed, piloted and modified at the JCC prior to study initiation. The domains in the questionnaire include data on i) patient demographics (age, ethnicity, gender), ii) CAM use (user/non-user or undecided, type of CAM, source of information, oncologist/haematologist informed or not), and iii) a section dedicated to exploring patient’s views on CAM (reasons for using CAM, perceived safety and level of trust with oncologist/haematologist). Mind-body interventions such as yoga, tai chi, meditation, mindfulness, relaxation techniques, art, music, dance and spiritual beliefs used to enhance patient wellness were not classified as CAM in this study. This decision was made based on the acceptability, safety and utility of most mind-body interventions. The study was instead directed to address less orthodox and potentially more harmful interventions. Study participants were allowed to choose more than one type of CAM use and information source. Response to questions pertaining to perspectives on CAM were graded as agree, neutral, disagree or non-applicable.

After receiving local institutional ethics board approval, all patients who attended a clinic or treatment appointment at the JCC between 25 September and 20 October 2017 were offered a questionnaire. Participation was voluntary. The questionnaire was only available in English. Patients who had difficulties reading or completing the questionnaire due to reasons of literacy or language were offered nursing or interpreter assistance. Duplicate questionnaires and incomplete entries that contained only demographic information were discarded. Data were entered into an Excel spreadsheet and descriptive statistics used for data analysis.

Results

Out of 361 responses, 306 entries had sufficient data to be included into the study analysis. Māori participation (25%, n= 78) was slightly lower than expected considering that Māori make up 30% of the Northland population and have been found to have a disproportionately higher cancer burden compared to NZ Europeans. Other ethnicities (e.g., Pacific Islander and Asian) only constituted 5% of respondents, with the rest being NZ Europeans. A total of 57% (n=174) respondents were women and the largest age group represented in this study was the 61–80-year range (61%, n=187).

View Figure 1 & Table 1.

Figure 1 summarises the questionnaire distribution and response based on CAM use. Almost a third of respondents were already using CAM (29%, n=89), 10% had plans to use CAM in the future while 45% (n=138) were undecided. Table 1 summarises the types and respective frequencies of CAM use among respondents. Fifty-eight percent of respondents (n=52) reported using only one CAM intervention, while seven respondents admitted to using more than three. Biologically based therapies were the most commonly used CAM (n=81). This included intravenous vitamin C (n=21), cannabis (n=16) or anticancer/detox diets (n=15). Acupuncture/traditional Chinese medicine use was also popular (n=23). Several interventions that are known to be particularly hazardous were utilised. This included miracle mineral solution, ozone therapy, colonic irrigation, chelation therapy, Gerson therapy and vitamin B17 (laetrile).

Word-of-mouth (58%, n=177)) was the most popular source of CAM information among respondents, followed by internet sources (36%, n= 110). Interestingly, 27% (n=83) of responders cited healthcare professionals as a source of information about CAM, which was more than CAM providers (15%, n= 46) and social media (14%, n=43). CAM use followed the ethnic and gender proportions of the respondents, but were disproportionately more common (71%, n= 217) in those aged under 60 years.

Among CAM users, the top five reasons for use were symptom relief (65%, n=58), perceived lower toxicity as compared to conventional treatment (62%, n=55), holistic (52%, n=46), natural (51%, n=45) and encouragement by family/friends (47%, n=42). Some users believed CAM had the potential of curing cancer (45%, n=40), were encouraged by success testimonials (37%, n=33), and felt that CAM was backed by strong scientific evidence (29%, n=26). Fifty-seven percent (n=51) of CAM users agreed with the statement that they trust their oncologist/haematologist to counsel them on CAM, but only 49% (n=44) had disclosed to their oncologist/haematologist that they were using CAM. Seventy-six percent (n=68) of CAM users supported the statement that CAM should be funded.

Of the 70 respondents that identified themselves as Māori, 30% used CAM—a similar proportion to the overall population. Māori medicine and cannabis were the most common CAM used in this subgroup. Interestingly, the largest group of respondents were undecided about CAM (n=138). Questionnaire completion rates were low for questions pertaining to views on CAM among this sub-group of respondents.

Discussion

Our study is the second published study on CAM use among patients in a publicly funded regional cancer and blood service in New Zealand. This follows the original publication by Chrystal et al. in the New Zealand Medical Journal on the same topic in 2003.[[15]] We employed a simple four-page questionnaire that was easy to understand and complete. This also allowed us to make a preliminary assessment on the types of CAM used and sample pertinent patient perspectives about CAM in our patient population.

The prevalence of CAM use documented in our study was lower than that which was reported by Chrystal et.al. and other contemporary Australasian studies. This difference could be due to differences in patient demographics (e.g., lower education/socio-economic profile) or the definition of CAM. Strikingly, a large proportion of respondents in our study were undecided about CAM. This highlights a sub-group of patients where targeted education on CAM could be helpful. While most CAM modalities were not directly harmful when used complementarily, we uncovered through this study several hazardous CAM interventions that were being used among our patient population. Understanding the alleged evidence and potential toxicities of these modalities allows us to be better placed to provide education and counsel about these therapies. We also discovered that almost half of respondents used more than one CAM intervention, raising the risk of adverse treatment interaction.

Healthcare professionals appear to be an important source of CAM information among respondents. This did not come as a complete surprise to us as there are several general practices in the Northland region that serve as integrative medicine hubs, promoting a wide range of CAM while delivering conventional therapies. Patients may also mistakenly attribute unregulated/unregistered CAM practitioners as healthcare professionals. In the light of potential toxicities, marketing scams, a kaleidoscope of modalities and an increasing number of quack practitioners, there is a need for more governmental regulation over the industry.

Word-of-mouth remains the main source of CAM information among respondents in this study. This highlights the importance of extending CAM education beyond patients to their family and wider community. However, the internet and social media are likely to become increasingly important, hence the need to channel adequate resources to develop evidence-based online resources for patient use. For instance, the Memorial Sloan Kettering Cancer Centre (MSKCC) website has an excellent integrative medicine section providing useful and evidence-based information on CAM.[[17]]

Perhaps the most practical step to address CAM use among patients with cancer is to foster open communication about CAM in day-to-day cancer care. Strategies to create a non-threatening environment is the first step. Simple measures such as placing information posters regarding CAM in waiting rooms, distributing information leaflets and incorporating a question regarding CAM during medication reviews can help create awareness and serve as conversation starters in the consultation or treatment floor. In fact, there is evidence that patients want their cancer-care professionals to provide them with evidence-based information on CAM.[[18]] Healthcare professionals who look after patients with cancer should receive training and guidance on how best to communicate effectively with patients regarding CAM. A systematic review conducted by Schofield et al. listed eight imperative steps, which include eliciting understanding, respecting ethnic and epistemological frameworks, active listening, being responsive to patients’ emotional states and provide balanced evidence-based advice.[[19]] Discussions regarding CAM should not be limited to a patient’s initial consultation appointment alone, but should be raised at critical junctures of a patient’s treatment journey.

The Clinical Oncology Society of Australia (COSA) published a position paper regarding CAM in 2013, which listed some additional strategies that could be employed.[[13]] The position paper suggested categorising CAM into three categories (safe and beneficial, safe with uncertain benefits and potentially harmful) and having a reference table in consultation rooms to facilitate evidence-based recommendations regarding complementary medicine during patient encounters. Open communication with CAM providers was advocated. The statement also highlighted the need to inform patients of some of the consequences of CAM, which can include financial toxicity and exclusion from clinical trials. Lastly, keeping up to date with the latest CAM was suggested. Due to time constrains, selecting a champion (e.g., pharmacist/nurse) as a reference within a service who is resourced to stay abreast on CAM may be a more efficient way of achieving this.

There are several limitations to this study. Firstly, only the views of patients who were attending their assessment and treatment appointments were sampled, inadvertently excluding those who have chosen to terminate or end engagement with conventional healthcare services in favour of utilising alternative therapies. Hence, the prevalence of CAM use in the overall Northland population with a diagnosis of cancer is likely greater. Secondly, there are limitations inherent to the instrument employed. While we designed a simple questionnaire to facilitate self-administration, responses were open to inaccuracies due to issues such as language barriers, time constrains leading to rushed responses and misinterpretation of questions. The questionnaire did not distinguish between complementary only, alternative only or both complementary and alternative therapy users. Lastly, while patients’ perspectives were sampled, this was by no means exhaustive, with the responses often raising more questions than answers. A qualitative study, such as one utilising patient interviews, would have been more appropriate for this purpose.

In conclusion, CAM use is common and will remain an important entity in day-to-day cancer care across oncology treatment centres nationwide. We demonstrated in this study the utility of local research into CAM, which serves to raise awareness about the landscape of CAM use in a specific patient population. This in turn facilitates training and planning among healthcare professionals to address CAM use among their patients.

View Appendix.