Reasons for non-participation in cancer rehabilitation: a scoping literature review

Cancer rehabilitation is the contextual field of research framing the scope. It is a complex field because it is inadequately defined and understood by both healthcare professionals and researchers [19]. The lack of comprehensive and shared definitions makes it difficult to determine which types of supportive care should be considered cancer rehabilitation, and which should not.

The World Health Organization (WHO) defines rehabilitation as programs ‘[d]esigned to optimize functioning and reduce disability in individuals with health condition’ [20]. This broad definition provides several possibilities for the organization and implementation of rehabilitation, which can be challenging to classify, compare and synthesize in a scientific review. Due to the broad definition, there has been a tendency to index research within the concept ‘rehabilitation is what rehabilitation professionals do’ [19]. Given this tendency, we used ‘rehabilitation’ as an overall search term, including all studies that defined their research area as cancer rehabilitation led by professionals.

Researchers suggest that cancer-specific rehabilitation should be integrated at all stages of the cancer trajectory [21]. The most influential classification system divides cancer rehabilitation into following four stages: preventive, restorative, supportive and palliative rehabilitation [22]. All four stages were included in our definition of cancer rehabilitation. This broad definition gave us a better opportunity to review the collected research on reasons for non-participation in all stages of cancer rehabilitation, including a wide range of intervention areas.

Throughout the review we use the terminology ‘rehabilitation program’ to define the activities, initiatives and services provided in the context of rehabilitation. We found this terminology more neutral than ‘rehabilitation intervention’ or ‘rehabilitation service’, because ‘intervention’ is often perceived as action-oriented, whereas ‘service’ can make the participants appear as passive recipients.

A systematic literature search was conducted in collaboration with an experienced librarian (ATSL). An initial limited search was undertaken to identify studies in the field, using index terms in the titles and abstracts of relevant studies. Keywords used were: ‘cancer’, ‘non-participation’ and ‘rehabilitation’. Synonyms for each term were identified through the initial limited search.

Three electronic databases (PubMed, Scopus and CINAHL) were searched to identify all published studies within medical, sociological and nursing literature. The last search was performed on 14th July 2023. Hand searches for peer-reviewed studies were conducted within the following organizational webpages: ‘World Rehabilitation Alliance’[24] ‘Rehabilitation international’ [25] and ‘Cancer.Net’ [26] using the terms ‘Rehabilitation’ and ‘non-participation’ (*including synonyms). The final search strategy is shown in Appendix 1.

The modified PICo framework for qualitative reviews was used to develop eligibility criteria [27]. Qualitative research provides insights into participants experience and fits the reviews orientation toward patients experienced reasons for non-participation. Peer-reviewed journal articles were eligible for inclusion if they were written in English or Danish, included adults (> 18) with cancer and reported reasons for non-participation in rehabilitation. Quantitative, qualitative and mixed methods studies were all included to consider different arguments and perspectives on the non-participation.

Studies were excluded if they focused on cost-effectiveness, prevention or the effects of rehabilitation, and if they dealt with health professionals, carers or relatives rather than people with cancer. Studies addressing rehabilitation programs that cost money were excluded, as these might point to structural reasons that do not explain non-participation in universal health care systems. Grey literature, abstracts and protocols were excluded as they did not allow for transparent descriptions of methodology, population and findings (Table 1).

Search results were screened using a two-stage process. In the first stage, two reviewers (ME and MQ) independently screened titles and abstracts against the eligibility criteria. Disagreements were resolved by discussion with the third reviewer (HT). Based on discussion, ‘post hoc’ exclusion criteria were developed and applied [17]. The ‘post hoc’ basis for exclusion was studies investigating reasons for non-participation in interventions designed as clinical trials, even if they were described as ‘rehabilitation trials’ [28]. Studies that examined participants’ or health professionals’ perceived reasons for non-participation were only included if they also addressed non-participant reasons. In these cases, data extraction and discussion focused only on data relating to non-participants.

In the second stage, the full text was assessed against the inclusion criteria by the two reviewers (ME and MQ). Any disagreements were resolved by discussion. For all studies included after second screening, reference lists and related articles were screened. First authors were searched using Web of Sciences ‘cited reference search’. Relevant studies not already included were identified for full review.

Several studies focused on drop-outs as a category of non-participation. Drop-outs were defined as people who had attended rehabilitation programs a limited number of times. After full screening we decided to include a few studies exploring drop-outs reasons. Of these, all but one focused on both drop-outs and people never attending (see Table 2). These studies showed that the two groups reported similar reasons, only people who never attended experienced the reasons as more severe [29‐31]. In the absence of studies on people who never attended, studies that include drop-outs provided a useful addition to the collective understanding of reasons for non-participation.

Included studies were read carefully to get an overall impression. Studies were divided among ME, MQ and HT. Two reviewers independently conducted data extraction for each study, and key information was extracted and summarized in Appendix 2. The identification of ‘reasons’ was based on direct quotations from the studies based on the perspectives of the participants. Only reasons reported by non-participants with cancer were extracted and added to the data chart. Extracted reasons were organized into groups, to provide an overall perspective on themes emerging from the literature, pertaining to the research question [17]. Major themes were further developed by merging overlapping themes across the included studies. Extracted data were discussed during team meetings, and data chart were updated in an iterative process.

A total of nine peer-reviewed studies published between 2001 and 2020 were included in the review [29‐37]. Included sources were authored in five different countries: USA, Canada, Australia, Germany and Denmark. The search yielded 881 potential studies. Of these, 856 were excluded during title/abstract screening. The main reason for exclusion was wrong field, including clinical trials, feasibility studies and general physical activity. A total of 156 studies were excluded because they focused on clinical trials, while 52 were excluded because they addressed physical activity or exercise behaviour in general, rather than rehabilitation programs led by professionals.

A total of 22 studies were full text screened, and five were included in the final scope. Reference searches and hand-searches of relevant organizations’ websites resulted in full text screening of 16 sources, of which four studies were included. A PRISMA flowchart (Fig. 1) outlines the selection process.

Evidence on reasons for non-participation was all based on participants’ own experiences and explanations. The most common method was interviews (n = 5) [29‐32, 34], followed by questionnaires (n = 3) [35‐37]. One study used ethnographic methods to explore how patients’ perceptions and ‘meanings’ influence reasons for non-participation [33].

Included studies represented different types of programs, all of which fell within the definition of freely available cancer rehabilitation. The programs included psychosocial support groups (n = 5)[29, 30, 35‐37], exercise programs (n = 3) [29, 31, 32], mindfulness-based cancer recovery (n = 1) [31], cooking classes (n = 1) [29] and art therapy (n = 1) [29]. The programs were all group-based and delivered in a public setting, such as a health centre or a clinic. Three studies focused on non-participation in general rehabilitation programs [33, 34, 37].

Included studies represented a population of 1105 adults with different types of cancer: lung (n = 230), prostate (n = 194), breast (n = 184), bowel/colon/rectum (n = 85), lymphoma (n = 17), head/neck (n = 11), anus (n = 4), urinary (n = 4), gynaecologic (n = 3), brain (n = 2), ovarian (n = 1), pancreas (n = 1), melanoma (n = 1) and tongue (n = 1). A total of 364 were either undefined or categorized as ‘other’.

The population of interest was further characterized by different types of non-participants. Identified types were people not referred to or registered in available rehabilitation interventions, people who have cancelled registration, who failed to attend or people who dropped out of rehabilitation. Drop-out was defined as having an attendance of less than 50% of the full programs [29, 30, 32].

Six studies accounted for socioeconomic data on population (20,21,22,24,26,27). Data were of different values, but generally showed a preponderance of highly educated, employed, white patients living with a partner.

A total of eight reasons were identified across the included studies: Cancer symptoms, side effect of treatment, preference for other activities, no motivation, low self-esteem, no need for public support, do not relate to position or participants, conflict with other plans, transport issues, bad timing and lack of referral.

The reasons were grouped into three major themes: (1) physical, (2) psychosocial and (3) practical. Table 4 provides an overview of the reasons found in the studies linked to the themes.

The most common reason was the psychosocial, followed by the practical and physical. All included studies identified psychosocial reasons, and six identified psychosocial reasons as the main barriers to participation [30, 33‐37] (Table 3).

The included studies found that cancer symptoms and treatment side effects were the most common physical reason for non-participation [29, 31, 34]. In a mixed methods study by Cheville et al., 17 out of 311 people reported that they were waiting to recover from chemotherapy or radiation, 20 did not believe rehabilitation would be beneficial due to the status of their cancer and 29 found rehabilitation too burdensome because they were in ‘too much pain’ [34].

Fatigue and pain were the most reported side effects, outweighing the physical reason. In the qualitative studies, people with cancer were quoted saying ‘I was unable to go because of pain and fatigue’ [29]. Further: ‘When you are dealing with the feeling of total lack of energy, feeling like your life was revolving around when you get to take your anti-nausea meds next, your life gets very slow, and your life gets very focused upon managing the symptoms of the chemo (…)’ [31].

Across the included studies, two reported treatment-related symptoms as the first and most common reason for non-participation overall [29, 31]. Two studies had a limited focus on treatment or disease-related reasons but mentioned them briefly [30, 32]. On the other hand, two studies using multiple-choice questionnaires did not mention physical reasons at all [35, 36].

Psychosocial reasons were the most dominant across the different study methods, populations and types of rehabilitation. Most studies noted that many non-participants reported no need for public support [30, 31, 33‐37]. Some studies linked ‘no need for rehabilitation’ to self-management (n = 3) [34, 36, 37]. For example, Clover et al. used quantitative methods to include a larger population group not attending cancer rehabilitation and found that 46% (n = 99) of people declined rehabilitation programs because they preferred to manage life with cancer by themselves. This reason was particularly prevalent in studies with a predominance of participants not enrolled or referred to rehabilitation (Table 2). However, receiving sufficient support elsewhere was more dominant across all studies, with ‘no need for rehabilitation’ as the most common reason (n = 4) [30, 35‐37]. A questionnaire conducted by Plass and Koch found that 75 of 94 people reported adequate support from family, 54 of 94 from friends and 43 of 94 preferred to talk to a doctor. People with cancer were moreover quoted saying: ‘When I’m feeling down my family supports me’(30, 35‐37). Suggesting that family are the most common reason for not participating in public support programs, but the studies do not explore how or on what parameters.

The second most reported psychosocial reason was ‘preference for other activities’ [29, 32, 33]. People with cancer, who preferred other activities, did not identify themselves with someone in need of support [33], did not relate to people attending rehabilitation [30] or felt that the program did not fit their competences or daily structure [29, 32].

Time and transport were a major practical barrier for participation. People with cancer reported that rehabilitation conflicted with other commitments and appointments [29‐32, 34]. Transport issues were the most reported practical reason [30, 32, 34]. People with cancer were quoted saying: ‘It [transportation] takes quite a bit out of the day so I’m not sure I would do that’ [32] and ‘You should make a parking available for Centre participants’[29].

On contrast, some included studies suggested that the practical reasons played a minor role. In the study by Cheville et al. only 12 of 311 people mentioned transport as a barrier to participation [34]. Similarly, the study by Eakin et al. found that only 7% of respondents cited ‘The location is inconvenient’, 4% cited ‘I don’t have transportations’ and 4% cited ‘The service is offered at inconvenient times’ as reasons for non-participation [35] (Table 4)

A more comprehensive understanding of reasons for non-participation may be beneficial for clinicians and policymakers developing supportive care in cancer. Our findings should be considered in the screening process and when discussing referral to supportive care with patients.