Introduction

Cancer incidence is increasing in Australia due to a growing and ageing population, with breast and prostate cancer being the first and third most commonly diagnosed, respectively [1, 2]. Concurrently, cancer survival rates are also improving meaning more cancer survivors are living longer following a diagnosis [1]. This is especially true for breast and prostate cancers in which 92% and 96% of women and men, respectively, are expected to live at least 5 years following a diagnosis in Australia [1]. As a result, it is becoming increasingly important to consider how to best manage both short and long-term adverse effects of cancer treatment. For certain common cancer therapies, including chemotherapy, hormone therapy, and radiotherapy for certain cancer types, long-term treatment-related adverse effects can include accelerated musculoskeletal decline and/or increased cardiovascular disease risk [3, 4].

Regular exercise and a healthy diet are commonly recommended for cancer survivors, reflecting the wealth of evidence demonstrating wide-ranging benefits for many physical and psychosocial treatment-related adverse effects [5, 6]. Strong evidence indicates that exercise with or without dietary interventions can ameliorate long term adverse effects into cancer survivorship [5, 6], as well as reducing cancer-specific and all-cause mortality [7]. Healthy dietary patterns that consistently represent high intakes of fruits and vegetables with low processed foods and meats, have shown reduced cancer-specific mortality [6], particularly for breast cancer [8,9,10]. Individualised dietary interventions in breast or prostate cancer show significant benefits in weight loss and improving quality of life post-treatment or during hormone therapy [11,12,13]. Despite the evidence, the delivery of evidence-based exercise and nutrition information to cancer survivors is suboptimal [14, 15]. Cancer survivors in England participating in a focus group study reported receiving little to no advice on exercise or physical activity from healthcare professionals [15]. Similarly, a recent scoping review showed that Australian cancer survivors commonly reported limited or ineffective dietary information from healthcare providers following treatment, and that the role of diet in recovery from treatment was not often explained [14]. This is consequential as cancer survivors are more likely to make positive exercise and dietary changes if their oncology providers discuss these areas during their visits [16]. Furthermore, several health care related barriers to engaging in both exercise and nutrition services that have been reported, including the cost, availability, and access to cancer-specific services, lead many survivors to make lifestyle changes without allied health support [17, 18]. To address the many evident barriers and successfully change the lifestyle of a cancer survivor, various behaviour change frameworks emphasise the need to consider multiple factors, such as capability, opportunity and motivation in the COM-B model of behaviour change [19]. Importantly, exercise and dietary support provided to cancer survivors has typically been explored separately, so whether issues affecting provision of this support are common or unique remains unclear.

To achieve the goal of routine delivery of exercise and diet support for people with cancer, it is important to understand how to improve current practices. Therefore, the aim of this study was to understand breast and prostate cancer survivors experience and perspectives on exercise and diet support provided to them during and following treatment, and to explore what support cancer survivors would like to receive. The findings will inform future work to integrate effective exercise and diet support into cancer care.

Methods

Study design

A qualitative descriptive study design was chosen as an appropriate approach to gain the perspective of people with relevant lived experience [20]. Taking a relativist ontology and a subjectivist epistemology the researchers value the perspective of the participants and ensure that in the interpretation their perspective is foregrounded [21]. Data collection was through focus groups, chosen to allow for open discussion and group interaction, which may help to uncover insights that would not be accessible otherwise [22]. Ethical approval was granted by the Edith Cowan University Human Research Ethics Committee (Project number 2021–02863-DALLAVIA). The study is reported in accordance with the consolidated criteria for reporting qualitative research (COREQ) framework [23] for reporting qualitative research.

Study sample

Eligibility

Eligible participants were aged 18 or older and had completed active treatment (ongoing hormone therapy acceptable) for breast or prostate cancer with therapies known to have cardiovascular adverse effects. For breast cancer, this included radiotherapy, chemotherapy and/or aromatase inhibitor therapy [24]. For prostate cancer, this included androgen deprivation therapy and/or chemotherapy [25]. These criteria were due to a secondary aim of the study (to be reported separately) to explore cancer survivors’ understanding of how cancer treatment may affect their cardiovascular and musculoskeletal health.

Recruitment

Participants were recruited for the study using purposive sampling, facilitated by a large private cancer care provider in Perth, Western Australia. An invitation email explaining the study was sent to 354 potential participants (183 breast cancer survivors, 171 prostate cancer survivors) who had completed active treatment from July 2020 to June 2021. Email recipients were asked to contact the lead investigator if interested in participating. All interested participants were screened for eligibility via telephone in October and November 2021, and eligible participants provided informed consent prior to completing the preliminary online questionnaire.

Data collection

Questionnaire

Background information about participants was collected using an online questionnaire (Qualtrics, Utah, USA) completed prior to attending the focus group. The questionnaire asked participants to self-report demographic (i.e., gender, marital status, ethnicity, education and occupation) and medical information (general medical history as well as cancer diagnosis and treatment information). Additionally, open-ended and closed questions about physical activity and diet behaviours prior to, during, and following cancer treatment were included. Participants were provided with a brief overview of Australian physical activity and dietary guidelines for healthy adults, then asked whether or not they were meeting these recommendations prior to their cancer diagnosis, and why they thought they were/were not. Participants were then asked whether their physical activity levels or diet improved, stayed the same, or declined during and following cancer treatment, and why this was so.

Focus groups

Focus groups were conducted in person at the Royal Perth Hospital Research Foundation building in Perth in December 2021. Breast and prostate cancer survivors participated in independent focus groups in order to determine specific experiences within each cancer type and to help participants feel comfortable sharing their experiences. All participants who attended a focus group received a $30 (AUD) gift voucher as reimbursement for their time and any travel expenses incurred. All focus groups were moderated by the lead investigator (JDV), who is a male postdoctoral research fellow with experience conducting research with cancer survivors. An additional observer was present in each focus group to record field notes to provide contextual information not captured by the audio recording [26]. Only the moderator (JDV), observer and participants were present in the room for each focus group. A focus group guide was developed collaboratively by the research team (question list provided as supplementary information). This was used to guide the conversation during each focus group, with the moderator asking follow-up questions or additional questions where necessary to explore, clarify or obtain further information based on participant responses. For practical reasons, the focus group guide was not piloted prior to the study, but small changes were made after the first focus group to ensure the questions were worded clearly and that the discussions covered important aspects of the topic. The moderator began each focus group with refreshments before moving to formally introduce the researchers present and the aim of the study. Each focus group was digitally recorded, then professionally transcribed (Digital Transcripts, Victoria, Australia).

Data analysis

Closed, forced-choice demographic, medical, and physical activity and diet questionnaire responses were summarised descriptively. Focus group transcripts were checked for completeness and accuracy by the moderator (JDV) then imported into NVivo (version 12, QSR International) for analysis. They were not returned to participants for comment, for practical reasons and considering they were transcribed verbatim. Focus group data were analysed using reflexive thematic analysis following Braun and Clarke’s 6 steps [27, 28]. Four authors were involved in the coding of focus group transcripts (JDV, MK, CA, MS). Initially, two authors (JDV, CA) familiarised themselves with each transcript, then each coded the same focus group transcript to check for consistency in analysis. Their coding was compared and discussed with other authors (MK, MS) who have extensive qualitative research expertise, to check and decide on a consistent approach to use for the remaining transcripts. The two authors then analysed the remaining focus groups, collated the codes into categories, and extracted relevant data. These categories were shared with other authors (MK, MS) who provided feedback and encouraged further reflection on how the codes should be best categorised. Next, the two authors generated initial themes from the categories, which were reviewed and further developed by discussion among the authors. This ongoing process helped to refine the themes to ensure they appropriately represented the data, answered the research question, and had an informative name. The participants did not provide feedback on the findings. The moderator (JDV) has a background in exercise science and nutrition research, and this was disclosed to participants when the moderator introduced themself at the beginning of each focus group. The other authors have backgrounds in health, implementation science, oncology, exercise physiology and dietetics, and include a range of expertise in the use of qualitative and quantitative methodologies.

Results

Study sample

A total of 26 cancer survivors (15 breast cancer, 11 prostate cancer), with a mean ± SD age of 66.7 ± 11.7 years, participated in a focus group. Details of the study recruitment process are presented in Fig. 1. Seven focus groups (four with breast cancer survivors, three with prostate cancer survivors) each consisting of three or four participants were completed, ranging from 54 to 107 min in duration. Characteristics of the final sample are presented in Table 1.

Fig. 1
figure 1

Study recruitment flowchart

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Table 1 Participant characteristics
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Physical activity and diet behaviours

Responses to the closed physical activity and dietary behaviour questions in the online questionnaire are presented in Table 2. Most prostate cancer survivors (82%), but not breast cancer survivors (40%), self-reported meeting physical activity guidelines prior to cancer treatment. Conversely, most breast (73%) but not prostate cancer survivors (46%) reported adhering to dietary recommendations prior to treatment. After diagnosis and during treatment, most cancer survivors decreased their physical activity levels (65%), while dietary changes were mixed. More breast than prostate cancer survivors increased their physical activity levels (53% vs 27%) and improved their diet (47% vs 27%) following treatment.

Table 2 Self-reported physical activity and diet behaviours
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Themes

Two themes were developed and are described below. The findings are supported with direct quotes from participants, presented below in italics, deidentified using a participant number, focus group number, cancer type, and participant age. Experiences were largely similar for breast and prostate cancer survivors, so the themes and discussion points below apply to both participant groups unless otherwise specified.

Theme 1: It was just brushed over

There was some variation in the level of support provided to cancer survivors during and following treatment, however participants most consistently reported receiving minimal exercise and diet support. This was despite participants consistently reporting that they would have and guidance.

Nobody spoke to me about diet or exercise. Not at all. (Participant [P] 17, Focus group [FG] 5, Prostate cancer, Aged 67 years)

I think it [diet and exercise] was just brushed over (P9, FG1, Breast cancer, Aged 66 years)

I wanted some guidance to give me the opportunity to address [my diet] and improve my health. but it wasn’t covered at all in my case. (P10, FG2, Breast cancer, Aged 34 years)

This was in contrast to one participant who received a thorough survivorship plan that incorporated advice about diet and exercise, and links to websites for further reading or to access additional support.

he said ‘now I’m giving you a survivorship care plan’ (P15, FG2, Breast cancer, Aged 65 years)

For those who did receive exercise and/or diet support, it was primarily provided as general advice. Participants were often told to be physically active and to eat well, but not offered any specific support on what to do or how to achieve this.

They just said, ‘Do you do any exercise?’ I said ‘yeah’, and they said, ‘You know you’ve got to diet?’ and I said, ‘Yeah, well, I know that. That’s common sense anyway.’ But they didn’t sort of push it” (P16, FG6, Prostate cancer, Aged 71 years)

They just say, ‘You need to keep your diet, you know, you need to have good dietary practice. You need to get some exercise.’ That’s all they say. (P20, FG6, Prostate cancer, Aged 78 years)

But it was very basic, very, very basic… (P14, FG4, Breast cancer, Aged 60 years)

It was clear that participants were not told about why regular exercise and maintaining a healthy diet is important for their cancer specifically. Some participants were told to be physically active and eat well; however, the message did not differ from general health advice for people without cancer.

We certainly all know why exercise is important, and diet, but whether it’s more important because you have cancer, I don’t know that (P23, FG5, Prostate cancer, Aged 81 years)

exercise and diet are so important, cool, it has been all my life but there’s no why… If they said ‘You need to exercise because it stimulates whatever it is and it’s going to help your body recuperate’, cool, but they just say exercise, you know? (P22, FG7, Prostate cancer, Aged 63 years)

Participants often reported receiving written information about exercise and diet; however, this was provided without discussion and many participants did not read the information thoroughly or were overwhelmed by the volume of it.

They also gave me a book about this thick and a whole pile of pamphlets and things which I kind of flicked through, but I really didn't read them. (P6, FG3, Breast cancer, Aged 75 years)

Most participants felt that this written information needed to be supported by a discussion with someone in the medical team.

It's all on a pamphlet about what you should do, but I think if somebody sat down and talked it through with you properly, you might be more inclined to do it. (P8, FG1, Breast cancer, Aged 65 years)

The provision of support or advice related to exercise and diet was often reactive rather than proactive. Participants reported that they only received support if they initiated the discussion or asked their medical team for it. Some participants perceived this to mean their medical team did not think they needed additional support.

Maybe if I need it they would send me (for exercise or diet intervention). But I don't know; nobody sent me, so… (P13, FG3, Breast cancer, Aged 63 years)

Consequently, attempts to change exercise and/or dietary behaviours were typically self-initiated rather than being due to support or advice provided to them as part of their cancer care.

The minute I found out [about cancer diagnosis] I changed my diet (P2, FG3, Breast cancer, Aged 52 years)

I just want to do the best I can for my body. I'm not a surgeon. I'm not a doctor. I can't do any of that. But I can look after myself. So that was what inspired me to just live my healthiest life for me. (P2, FG3, Breast cancer, Aged 52 years)

Theme 2: Wanting more

There were many aspects of exercise and dietary support that left participants wanting more, and they provided ideas and suggestions about how support could be improved to be better suited to their needs. Understanding the “why” may play an important role in motivating cancer survivors to achieve healthful behaviour change. Most participants reported that understanding why exercise and diet can help them with their cancer would be a strong motivator for them to change their behaviours.

I suppose if they told you why, you might be motivated a bit more to do it. (P23, FG5, Prostate cancer, Aged 81 years)

Just the why; for me it would have been the why. Why should - how is it going to help us? (P2, FG3, Breast cancer, Aged 52 years)

This was evident for one prostate cancer survivor who reported exercising consistently during radiotherapy and was asked what motivated him to do so.

the fact that they told me that we’d get a better outcome if I did exercise. Um, what they did say is it was good to do the exercise directly before you had the radiation (P26, FG6, Prostate cancer, Aged 68 years)

Most participants wanted exercise and diet support that was individually tailored to their preferences and personal circumstances. Further to this, participants identified a broad range of considerations that they perceived to be important when personalising exercise and diet support. This included discussions about tailoring support based on their pre-existing knowledge or experience with exercise, their preferences and health status, their work and family circumstances, and motivation. The common considerations discussed, along with examples and representative quotes, are summarised in Table 3.

Table 3 Considerations for tailoring exercise and diet support raised by participants
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Finally, most participants reported that they would have taken up a referral to an allied health professional to help with exercise (e.g., an exercise physiologist) or with diet (e.g., a dietitian), however very few received a referral. One participant independently sought support from an exercise physiologist.

I would like to be referred to someone… to help me with everything, like, how to exercise, what kind of exercises. (P13, FG3, Breast cancer, Aged 63 years)

I’d take it. If they said, ‘Here’s a referral. We would like you to go and see a dietitian’, we’d go and see a dietitian. (P17, FG5, Prostate cancer, Aged 67 years)

I sourced one [an exercise physiologist] privately. (P13, FG2, Breast cancer, Aged 46 years)

Discussion

This study presented findings from focus group discussions with breast and prostate cancer survivors. Their experience of and preferences for receiving exercise and dietary support during and following treatment were explored. Findings demonstrated that exercise, and especially diet, were rarely discussed in any depth, if at all. Moreover, participants wanted more specific and tailored support that considered personal preferences, circumstances, and capabilities, and most would welcome referrals to allied health professionals who are best placed to provide this support. Participants also agreed that more specific information about how exercise and/or diet would benefit their cancer treatment would motivate them to act.

Despite a strong preference for tailored information and support about exercise and diet, most participants reported a lack of specific information. All participants in our study were receptive to receiving information and support about exercise and diet during treatment. This finding aligns with available literature in cancer survivors demonstrating an interest in personalised support to help people feel informed about what to do, as well as providing practical strategies to improve behaviours [14, 15, 29,30,31,32,33]. In particular, a systematic rapid review of 118 studies in 15 cancer types exploring factors influencing physical activity concluded that physical activity support and advice should be individualised, considering patient-specific needs and preferences [29]. Similarly, in a scoping review of dietary information provision in Australia, cancer survivors reported receiving limited or ineffective dietary advice, and identified a need for individualised dietary strategies and practical skills for healthy eating [14]. Many of the specific considerations for tailoring exercise and diet support participants in our study discussed are also consistent with those identified by cancer survivors in previous qualitative studies [15, 31,32,33]. Importantly, several common issues and barriers were identified in the provision of both exercise and dietary support, and preferences for support delivery expressed by participants was largely consistent for exercise and diet. Taken together, our results and the available literature show a clear need to tailor both exercise and diet support to each individual cancer survivor.

There is an evident need to consider ways to support behaviour change more effectively in cancer survivors. The COM-B model identifies capability, opportunity and motivation as key factors contributing to behaviour change [19], and participants identified factors relating to each when discussing what would help them engage in exercise or healthy eating. The desire for individually tailored exercise and diet support also reflects qualitative evidence that cancer survivors value free choice and autonomy when changing behaviour [34]. Our finding that cancer survivors would be more motivated to exercise and eat well if they understood why it was beneficial for managing their cancer diagnosis is important as a lack of motivation was a common consideration identified by participants. This aligns closely with the aforementioned systematic rapid review, which identifies patient education about the importance of physical activity post-cancer, as well as the incorporation of behaviour change strategies to increase physical activity levels among cancer survivors [29]. Strategies to specifically address a lack of motivation among cancer survivors, such as motivational interviewing, have shown promising effects on various lifestyle behaviours including physical activity and diet [35]. However, systematic reviews also report that approximately 41–43% of combined exercise and nutrition interventions in cancer survivors did not incorporate any behaviour change techniques or theories [36, 37]. Overall, this study further highlights the need to explore practical strategies to effectively leverage individual motivation into successful behaviour change.

Implementation issues commonly underpin provision of exercise and diet support in cancer care and should be considered in working toward solutions. Data suggest the lack of support is not due to a lack of interest: two oncology clinician surveys reported approximately 80% of respondents recognised exercise as an important part of cancer care [38, 39]. Instead, their challenge is that they do not feel adequately prepared to deliver this information. Barriers identified by oncologists in Australia include a lack of exercise or nutrition-specific knowledge or training, as well as a lack of time within consults to discuss exercise and nutrition with their patients in addition to essential oncology-specific information [40, 41]. While this suggests referral to allied health for dedicated exercise and/or nutrition support consults may be an appropriate solution, the current referral process was also identified as a barrier [40, 41]. The lack of effective infrastructure within health care organisations was highlighted as the most commonly reported barrier in a recent scoping review of implementation barriers to delivery of exercise oncology services [18]. The lack of clear referral pathways and knowledgeable workforce to deliver tailored support likely underpins the evident lack of referrals to allied health professionals (e.g., exercise physiologists, dietitians) reported in the study. In order for these supportive care services to be useful, a clear strategy for how to integrate them into care in a way that is accepted by an organisation is critical. Therefore, there is a need for focused implementation work to overcome these referral barriers, so that cancer survivors can be connected with the allied health professionals best placed to provide the specific and tailored support they desire. The consistency in current issues and desired support for both exercise and diet mean that implementation work can be readily adapted across the various allied health services accessed by cancer survivors. Overcoming these common barriers may therefore improve multiple lifestyle aspects, including promoting sustained exercise and dietary behaviour change.

A number of limitations should be considered when interpreting the study results. The inclusion of breast and prostate cancer survivors means the findings may not be transferable to other cancer populations. Recruitment was facilitated by one service so all participants were patients at one of their centres in Western Australia, possibly introducing recruitment bias. The provider is a private cancer care provider, so findings may not be transferable to the wider population of cancer survivors treated exclusively in the public system. While all participants received radiation therapy from the same private cancer care provider, they may have received other treatments (e.g. surgery, chemotherapy, hormone therapy) at other hospitals or cancer care centres, so their reported experiences could potentially reflect various healthcare settings. Participants were recruited from various treatment centres across Western Australia but were required to attend a focus group in person in the Perth city, so are less likely to include rural cancer survivors. Additionally, while qualitative research is context specific and the results may not be directly generalisable to cancer survivors in other countries, the issues assessed through the focus group questions reflect the needs raised through research in countries that share similar demographic characteristics and/or health care systems. There is a risk of those opting into the study more likely to have an interest in exercise and diet. Background information about participants was obtained from a self-report questionnaire, which led to incomplete data on cancer stage for several participants and meant responses to certain questions may be subject to recall bias or under/overestimation. While the moderator made a conscious effort not to contribute personal thoughts and knowledge to the discussions, it is possible that this had some influence. A relationship between the moderator and participants was not established prior to the study commencing, other than during telephone conversations as part of the recruitment and screening process.

In conclusion, exercise and diet support are currently not routinely incorporated into the care of Western Australian breast and prostate cancer survivors, with wide variation in the level of support provided. The current findings suggest survivors are extremely receptive to receiving support. Strategies that can tailor exercise and diet support to the specific cancer benefits and circumstances of individual cancer survivors, using behaviour change techniques, would be widely accepted and have the potential to improve exercise and diet behaviours among cancer survivors.