Enablers and barriers in delivery of a cancer exercise program: the Canadian experience

Original Article

Cancer Rehabilitation and Survivorship

Enablers and barriers in delivery of a cancer exercise program: the Canadian experience


D. Santa Mina, PhD,*,, A. Petrella, MA*, K.L. Currie, MA*, K. Bietola, S.M.H. Alibhai, MD§, J. Trachtenberg, MD*, P. Ritvo, PhD#, A.G. Matthew, PhD*
*Princess Margaret Cancer Centre, Toronto, ON;, University of Guelph–Humber, Toronto, ON;, University of Toronto, Toronto, ON;, §University Health Network, Toronto, ON;, School of Kinesiology and Health Science, York University, Toronto, ON;, #Cancer Care Ontario, Toronto, ON.



doi: http://dx.doi.org/10.3747/co.22.2650


ABSTRACT

Background

Exercise is an important therapy to improve well-being after a cancer diagnosis. Accordingly, cancer-exercise programs have been developed to enhance clinical care; however, few programs exist in Canada. Expansion of cancer-exercise programming depends on an understanding of the process of program implementation, as well as enablers and barriers to program success. Gaining knowledge from current professionals in cancer-exercise programs could serve to facilitate the necessary understanding.

Methods

Key personnel from Canadian cancer-exercise programs (n = 14) participated in semistructured interviews about program development and delivery.

Results

Content analysis revealed 13 categories and 15 subcategories, which were grouped by three organizing domains: Program Implementation, Program Enablers, and Program Barriers.

  • ■ Program Implementation (5 categories, 8 subcategories) included Program Initiation (clinical care extension, research project expansion, program champion), Funding, Participant Intake (avenues of awareness, health and safety assessment), Active Programming (monitoring patient exercise progress, health care practitioner involvement, program composition), and Discharge and Follow-up Plan.

  • ■ Program Enablers (4 categories, 4 subcategories) included Patient Participation (personalized care, supportive network, personal control, awareness of benefits), Partnerships, Advocacy and Support, and Program Characteristics.

  • ■ Program Barriers (4 categories, 3 subcategories) included Lack of Funding, Lack of Physician Support, Deterrents to Participation (fear and shame, program location, competing interests), and Disease Progression and Treatment.

Conclusions

Interview results provided insight into the development and delivery of cancer-exercise programs in Canada and could be used to guide future program development and expansion in Canada.

KEYWORDS: Exercise, survivorship, rehabilitation, qualitative analysis, program development

INTRODUCTION

Cancer is the leading cause of death in Canada1. Advances in screening and treatment since the early 2000s have improved survival outcomes1 and are contributing to a growing number of cancer survivors. Despite improvements in survival, many individuals live with acute and chronic adverse effects of cancer and associated therapies2,3. Adverse effects commonly include reductions in energy, physical fitness, sleep quality, appetite, and overall quality of life47. Exercise has been widely investigated as a strategy to mitigate the deterioration of overall well-being during cancer treatment and to facilitate recovery from the disease and its treatment-related sequelae8. Epidemiologic research also emphasizes an important role for exercise in the prevention of cancer and the reduction of cancer-related mortality911.

Evidence of the widespread benefits of exercise across the cancer continuum has inspired the development of guidelines and training manuals for exercise screening, testing, and training1215. Those resources are intended to guide a growing cohort of qualified exercise professionals in the safe and effective delivery of cancer-exercise (cex) programs. As a result of the growing body of literature and cex guidelines, cex programs have become more prevalent. Consequently, research is beginning to explore specific aspects of program delivery. For example, investigation into the preferences of cancer survivors for particular cex programming has identified several core features that cancer survivors consider favourable, including safety, effectiveness, convenience, and a “survivor friendly” environment1618. Additionally, the literature suggests that strong emphasis should be placed on exercise adherence (peri- and post-program), which is required for maintenance of the exercise-related benefits19,20. Despite such investigations, little is known about the programming currently available in Canada.

Program coordinators have a unique and valuable perspective on the success and evolution of supportive and ancillary care programs for patients21,22. In many instances, program coordinators are clinicians with additional administrative roles wherein they manage the day-to-day activities related to program delivery. Those activities can include overseeing bookings and patient flow, clinical care, integration with other health care practitioners, and research agendas. Program coordinators often have frequent contact with program participants and other program staff; they consequently have an intimate understanding of the logistic challenges to program implementation and delivery. In particular, in the cardiac rehabilitation literature, the program coordinator’s viewpoint has been valuable in elucidating patient-related barriers to participation in cardiac rehabilitation. For example, Fernandez and colleagues21 reported that patients have difficulty coming to terms with diagnosis and disease, and experience challenges to making behaviour changes. Moreover, barriers to participation were identified, including cost and comorbidity21. For cex programs, information gleaned from program coordinators could contribute to a deeper understanding of program implementation in this relatively nascent field.

To date, no formal guidance has been published about the implementation and sustainability of cex programs in Canada. A qualitative examination of existing cex programs, their experience with program development, and enablers and barriers to program delivery and sustainability will support the implementation of future cex programs.

METHODS

Study Design

To gain insights into the development and current state of cex programs in Canada, our qualitative study used inductive content analysis23 of semistructured interviews with a cohort of cex program coordinators. The study was approved by our institutional research ethics board, and all participants provided informed consent.

CEX Program Identification and Program Coordinator Recruitment

An Internet search and review of Canadian publications in exercise intervention research for cancer patients was used to identify cex programs. Snowball sampling of interview participants was used in the event that study participants were aware of additional cex programs. Program coordinators were eligible to participate in the interview if their program provided exercise counselling, prescription, or assessment to cancer patients during or after treatment (or both); had a clinical or research focus; were free or fee-for-use; and had medical supervision, referral, or consent. We excluded sole-proprietor and personal training services.

Program Coordinator Interview

The study team developed an interview schedule comprised of structured and semistructured questions. Structured questions explored each participant’s demographic information and program infrastructure. The semistructured interview component used open-ended questions to investigate cex program development, delivery, participation, strengths and weaknesses, and overall programmatic success. “Success” related to the capacity of the program for program delivery, the perceived benefit to participants, and sustained operation. The interviews were pilot-tested twice with the study team to finalize question wording and sequencing. Interviews were conducted by one research assistant (KB) trained in semistructured interviewing. Interviews lasted approximately 30 minutes, were digitally recorded, and were then transcribed for data entry and content analysis.

Quantitative Analysis

A descriptive analysis of the demographic and program information was conducted using the IBM SPSS Statistics software application (version 19.0: IBM, Armonk, NY, U.S.A.).

Qualitative Analysis

Inductive content analysis was used to identify categories that describe the landscape of cex programs in Canada23,24. Investigators (DSM, KLC, KB, AGM) performed independent open coding of the initial 6 interview transcripts and then met to discuss and pursue agreement on codes and groupings. The same investigators then coded and grouped the remaining transcripts according to the initial transcript analyses, allowing for the addition of codes when appropriate. Upon completion of coding, the investigators met to identify categories and subcategories that were grounded in participant experience and could be used to classify central aspects of cex programming.

RESULTS

The initial search identified 20 Canadian cex programs. Recruitment e-mail messages were sent to the program coordinators between September 2011 and February 2012. Of the 20 coordinators approached, 14 provided consent to participate in the study. After completion of the interviews, it was determined that 2 participants represented the same cex program and thus their interview data were combined.

Table i presents the characteristics of the program coordinators. Most were women, with a graduate degree in kinesiology, rehabilitation sciences, or exercise science, who had approximately 8 years’ experience in their role. Table ii presents the cex program characteristics. Most were delivered in urban centres, consisted of a mix of home-and facility-based programming, and were conducting research. Programs were delivered in a variety of institutional settings (for example, hospitals, community centres, and universities) and were often funded by donations and research grants. The programs were generally quite new, at a median of 3 years of programmatic delivery.

TABLE I Demographics of the program coordinators

 

TABLE II Characteristics of the cancer exercise program

 

Qualitative Profile of the CEX Programs

Content analysis revealed 13 categories and 15 subcategories, which were grouped into three organizing domains: Program Implementation, Program Enablers, and Program Barriers (Figure 1). Table iii shows interview excerpts pertaining to each content category.

 


 

FIGURE 1 The three organizing domains, with their 13 categories and 15 subcategories, identified during analysis of the content from semistructured interviews with program coordinators about the development, delivery, participation, strengths and weaknesses, and overall programmatic success of cancer-exercise programs.

TABLE III Examples of interview-derived (ID) quotes for domains and categories


 

Program Implementation

I think it was just commitment and dedication from the stakeholders of the program.... Great commitment from some of the oncologists, and fantastic financial commitment from the foundation via these oncologists ... very specific people who I think made the program what it is now. And you know that includes some of the exercise participants and volunteers—patient advocates of the program.

—Participant 002

Program Implementation (5 categories, 8 subcategories) included Program Initiation (clinical care extension, research project expansion, program champion), Funding, Participant Intake (avenues of awareness, health and safety assessment), Active Programming [monitoring patient exercise progress, involvement of health care providers (hcps), program composition], and Discharge and Follow-Up Plan.

Program Initiation was most often achieved in one of two ways: expansion of existing research protocols, or needs assessments for specific cancer populations. When programs were not initiated through those approaches, they were developed by extension of existing nonmedical clinical programs (for example, stress management programs). Successful program initiation was always accompanied by a dedicated individual champion who garnered support through physician and patient advocates.

The most common avenue of funding for cex programming was funds raised through research-based projects, which ranged from small dedicated funds for pilot projects to large-scale research grants from national agencies. That funding provided the original capital equipment and secured facility space for the cex program. Funding also came from individuals (for example, an interested hcp or patient) or groups who actively assisted with obtaining the financial resources necessary for program development and maintenance. Those supporters pursued funding from hospital or institutional foundations (or both) and by submitting research grant applications.

Participant Intake was facilitated through various avenues of awareness. Some cex programs garnered interest by word-of-mouth, advertisements in hospitals or clinics, social media, or support-group meeting announcements that allowed participants to self-refer. Recruitment into the cex program served as a point of entry into some research-based projects. Health care providers were seen to communicate the availability of cex programs through presentations at clinical rounds or conferences that encouraged patient referrals to the program. In some cases, referral from a hcp (most often a physician) was required before an individual could participate in the program. After entry into the cex program, an assessment or entry consultation was commonly conducted to screen for health and safety. Screening for safety or exercise prescription purposes could include any or all of aerobic and musculoskeletal fitness testing, cardiopulmonary assessment, anthropometric measurements, chart review, and psychological evaluation measures. Screening was conducted by exercise specialists, physicians, or psychosocial program facilitators. In some cases, the screening would dictate the exercise program into which the participant would enter, this serving as a triage strategy based on participant needs and interests.

Once a patient was enrolled, Active Programming included monitoring the patient’s exercise progress, hcp involvement, and program composition. Programs implemented serial monitoring of outcomes to determine program efficacy and compliance with the exercise prescriptions. Outcome measures included changes in side-effect profiles (for example, fatigue), improvements in exercise performance outcomes (strength or endurance, for instance), and quality of life. Modifications to exercise prescriptions were made depending on progress from baseline assessments. The rigour and frequency of the assessments varied with the program. Some programs monitored on an “as-needed” basis; others implemented progress assessments at regular intervals (for example, every 2–3 months). Adherence was commonly measured using attendance to facility-based sessions and exercise logs or diaries to monitor home-based exercise. A number of programs also indicated that patient satisfaction was monitored by survey at the end of participation.

“Health care provider involvement” refers to the multidisciplinary staff of hcps (physicians, exercise physiologists or fitness trainers, kinesiologists, physiotherapists, massage therapists, dieticians, psychologists, nurses, and researchers) who deliver cex programs. Some programs trained graduate students and interns and utilized volunteers and administrative staff to support program delivery. Program composition varied substantially in cex programs. All programs adhered to the general exercise recommendations for cancer survivors outlined by the American College of Sports Medicine13, with some explicitly stating that they offered a “low-intensity” program.

In research-based programs, the interventions were specific to the ongoing research trials. Some facilities offered both clinical and research programming. Many cex programs offered access to mixed-modality exercise (components of aerobic, resistance, and flexibility training), with some additionally offering alternative exercise programs including yoga and Pilates. Programs varied in length as well, with some offering fixed-duration programs (range: 6–48 weeks), and others offering program services to participants for as long as they wished. Several programs indicated that the exercise prescriptions were “individualized,” based on the results of the baseline assessment.

Most of the programs that had a finite term for program participation incorporated a Discharge and Follow-Up Plan. Programs often included a standard discharge fitness assessment and, in some cases, a transition package designed to promote post-intervention home-based exercise engagement. Similarly, hospital- or university-based programs often referred participants to community-based survivorship programs.

Program Enablers

They want to participate because they want to stay as healthy as possible.... They want to get their strength back, they want to reduce their fatigue, they want to build up their muscle mass and stamina and really stay as healthy as they can. And for people who have never exercised, it’s often cancers that are a catalyst for changing to a healthier lifestyle.

—Participant 008

Program Enablers (4 categories, 4 subcategories) included Patient Participation (personalized care, supportive network, personal control, awareness of benefits), Partnerships, Advocacy and Support, and Program Characteristics.

Patient Participation (“uptake”) was aided by personalized care, a supportive network, personal control, and awareness of benefits. Personalizing the exercise program to the needs, strengths, and limitations of the participant was perceived to have a positive effect on patient participation and satisfaction. Establishing a supportive network of social connections between patients, hcps, and peers also contributed to patient participation. Patients were seen to connect through a common goal of recovery and improved health that promoted a team atmosphere. Those relationships created a supportive network that provided both empathy and shared experiences with the other patients and the expertise and knowledge of the exercise instructor to address the physical and psychological needs of each participant. Access to hcps outside the context of providing “medical” treatment (that is, focusing on health and wellness outcomes rather than oncologic outcomes) was also seen to be beneficial. Personal control over the cancer and treatment-related outcomes was described as a situational or individual trait that was the cornerstone of participation in the program by the patients. That control appeared to be a type of empowerment associated with exercising in spite of the adverse effects of the disease and its treatment. Awareness of exercise-related benefits added to uptake by the patients and was seen as an impetus for exercise behaviour.

“Partnerships” refers to the connection between cex programs in large urban cancer centres, universities, and smaller community-based wellness centres. Where partnerships existed, cex programs were able to provide ancillary care (for example, physiotherapy) and to increase long-term access to cex programming. In some cases, partnering with national organizations having a common mandate (for example, the Canadian Partnership Against Cancer) was an objective for long-term program growth and development.

Advocacy for program development and maintenance was initiated by hcps and patients alike. The cex program development was often championed by an individual hcp and supported by patient advocates of the initiative. In some cases, those leaders played a role in conducting research into delivery strategies and communicating those strategies to local institutions to build momentum and support. Mentorship by program champions also supported program growth by training graduate students, postdoctoral fellows, and clinicians. General enthusiasm among oncologists and related disciplines helped to move cex initiatives forward. Program champions were described as having such key characteristics as patience, resilience, and creativity. Patient advocates were current participants or “graduates” of cex programs who wished to further support development or delivery of the program. Growth of the programs often came as a result of word-of-mouth communication between participants and participants sharing their satisfaction or experience with their health care team.

Program Characteristics that were favourable included programming that was flexible in nature and that provided participants with a physical environment conducive to adapted exercise. Programs that suited a variety of age groups and both sexes and that accounted for disease or treatment limitations were seen as beneficial to participants. The personalized care extended beyond the specifics of the exercise prescription; it also related to adapting program access for participants by offering extended working hours, transportation to and from the cex program, free parking, and various modalities of exercise programming. Successful cex programs offered a range of classes (group exercise, qigong, tai chi, yoga, Pilates) and were adaptable to participant needs or lifestyle. The social aspect and welcoming environment of many of the cex programs was considered a key component of program success. It was important for patients to feel safe, supported, and welcome, and not to feel that they would be judged by instructors or other participants. Program success was attributed to choosing staff with cancer and exercise experience and professional credentials.

Program Barriers

Doctors are very hesitant to refer patients who are undergoing chemotherapy and radiation.... [The] mixed message is that exercise is not necessarily the best thing for them, but research is obviously showing that that’s not true; we are still experiencing ... difficulty in that sense.

—Participant 007

Program Barriers (4 categories, 3 subcategories) included Lack of Funding, Lack of Physician Support, Deterrents to Participation (fear and shame, program location, competing interests), and Disease Progression and Treatment.

The lack of conventional funding sources (such as research grants, internal or institutional support, and private philanthropy) was described as the largest impediment to initiation and success of cex programming. In some cases, research funding led to institutional support to further develop and provide cex programming at the particular institution, but that situation was the exception. Difficulty with securing continued funding represents a significant barrier in cex program sustainability in Canada.

Lack of Physician Support was identified as an important component of program initiation and success. Consequently, the absence of physician endorsement with respect to referrals, attention, and communication about the cex program can impede program success. Program coordinators described the following physician-related barriers to success: lack of physician communication with cex program coordinators, other allied hcps, and patients about program availability; and a lack of referral of patients to cex programs. The lack of physician support was attributed to physician disagreement with or unawareness of exercise-related benefits for cancer survivors and a reluctance to refer patients because of safety concerns. Program coordinators have suggested that providing education to physicians about the benefits of cex programs is necessary to address this barrier.

Deterrents to Participation were factors that patients described to program coordinators as hindering their enrolment in cex programs. Patient concerns included fear and shame, program location, and competing interests. Feeling safe and welcome was associated with program success, whereas shame and fear acted as a deterrent for patients engaging in cex programs. Program location was often described as a barrier because of any or all of these factors: sited in an urban centre that was difficult to access; parking or fuel costs associated with travelling to the particular location; distance from home; and lack of transportation. Patients were described as often balancing many demands, priorities, or interests that ultimately interfered with their capacity to participate in cex programs. Patients reported having “no time” to participate, specifically because they were already participating in other research trials; they were travelling during the time that the program was being offered; they had competing family commitments (particularly for women with breast cancer who had children); or they were participating in other cancer survivorship support programs.

Disease Progression and Treatment were barriers to exercise engagement. These concerns were attributed to the physical and psychological burdens associated with regressing health. Participants withdrew completely or temporarily because of any one or a combination of cancer-specific symptoms (especially severe fatigue) and related or unrelated comorbidities. In addition to the logistics challenges involved in coordinating treatment visits and exercise participation, treatment-related symptoms were also factors associated with decreased participation. Mortality also contributed to participant de-enrolment.

DISCUSSION

Several Canadian cancer organizations and institutions have broken ground in cex programming by initiating clinical or research programs (or both) that provide clinical exercise-related care to patients. The programs provide a clinical service, often while they investigate the effects of exercise during the cancer experience. Our findings suggest that establishment of such programs has been arduous and continues to face numerous barriers to widespread implementation and acceptance. Program success appears to be intimately tied to physician and patient awareness of the benefits of exercise throughout the cancer experience. In this respect, the physician plays a critical role for the purposes of patient referral and recommendation to cex programs; strategies to support and educate the physician about the benefits and availability of cex programs are consequently justified. Research to further understand physician-related factors that affect referrals and recommendation for cex programs, similar to those already investigated in cardiac rehabilitation25, will guide strategies to support physicians and program administrators in facilitating enrolment. With the ever-growing body of empirical literature describing the benefits of cex programming, coordinators could soon encounter less institutional and professional resistance and disinterest. Nevertheless, existing programs have been forged and maintained by a few resilient and dedicated individuals who continually overcome a variety of institutional, financial, and logistical hurdles to deliver even the most modest of cex program models. In Table iv, we highlight some of the cex programs available in Canada and the published literature about those programs, where available.

TABLE IV Cancer exercise programs in Canada

 

Previous studies have assessed patient preferences for cex programming, providing initial insights and important feedback about the acceptability of, and interest in, exercise for cancer survivors16,17,3446. Our findings suggest that many patient preferences for cex programming are corroborated by the reports of program coordinators. For example, in earlier research, patients endorsed the need for flexible and adaptable programs, educational material about exercise as it relates to cancer, strategies to overcome transportation to the cex program, qualified and professional staff with exercise training specific to oncology, and an environment conducive to social support16,17,3438,4146. In particular, congruent reports of the need to overcome transportation-related barriers (distance, time, and cost) from patients and program coordinators underscore the need to bridge the gap between the site of program delivery and more amenable locations for exercise (such as local community centres or home-based exercise programming). One potential approach could be electronic exercise instruction, communication, and monitoring after an initial face-to-face assessment. That type of approach, using electronic devices with Internet access, could reduce program delivery costs (less institutional overhead) and broaden patient contact to almost any region.

The most frequent limitation to the initiation and prolonged success of cex programs is a lack of funding. Although cex programs are not unique in having funding concerns, they remain underdeveloped in their capacity to overcome those concerns. To date, cex services in oncology are not covered by public or private health insurance, because exercise is not yet considered a critical element of standard care for cancer patients or survivors. In this respect, the field of cardiac rehabilitation is more mature and has garnered the support of clinicians and health policymakers to ensure that cardiac patients have access to the requisite rehabilitation programming. Studies examining the cost-effectiveness and various delivery approaches of cex programming will undoubtedly advance the field toward inclusion into the realm of publicly and privately funded health care, resulting in improved opportunities for financial support for such programs.

Our study has several novel aspects and strengths. First, the present report is, to our knowledge, the first to consider cex program development in Canada. It marks an important step in documenting the history of this field and its transition from primarily research programming to systemic clinical application. More practically, our content analysis provides the first experience-based support framework for initiating new cex programs. In addition, the identification of several Canadian cex programs highlights the need for improved communication between those programs. Communication is important to enhance collaborative relationships, to maximize health care and research funding, to motivate information-sharing across the discipline, and to establish mentorship for programs in development. Our reporting on the perspectives of program coordinators also complements prior qualitative research into patient preferences and highlights shared concerns about personalization and sensitivity of care43. Finally, our response rate was high (70%), and our Canada-wide sample included sites in British Columbia (n = 1), Alberta (n = 3), Manitoba (n = 4), Ontario (n = 9), and Quebec (n = 3).

Our paper must be considered in light of several limitations. First, our sample is limited to Canadian institutions, and given the relative scarcity of cex programs, we did not randomly sample them. Our approach to recruitment (using publication and Web searches) might have resulted in some programs being missed, especially those that were not publicly advertised or that did not produce research. However, given the nascent status of the field, we suspect that our sample is generally reflective of the current state of the discipline. In addition, many of our findings related to patient experiences in the program (participation, attrition, and satisfaction, for instance) must be considered to be hearsay; they might not necessarily reflect the opinions that patients would offer directly. Furthermore, social desirability could have influenced the description of each program coordinator’s home program, highlighting the positive attributes of the program while minimizing the challenges, barriers, and deficiencies. However, we generally found that program coordinators were generous in their discussions of the obstacles to programmatic success, likely as a means to improve program success through formal documentation.

CONCLUSIONS

Program coordinators provided insights about cex program initiation and success. Many limitations in delivery appear to be funding-related, but cex program initiatives have striven to provide adaptable and specialized exercise prescriptions for cancer survivors, while accommodating disease- and treatment-related barriers to participation. Our findings provide insight and guidance to clinicians, administrators, and researchers involved in implementation and refinement of cex programs. Future research that monitors program development and the potential discontinuation of current programs will ensure that the insights related to cex enablers and barriers remain contemporary.

ACKNOWLEDGEMENTS

We acknowledge Tal Davidson and Abigail Magpayo for assistance with the preparation and submission of this manuscript.

CONFLICT OF INTEREST DISCLOSURES

We have read and understood Current Oncology’s policy on disclosing conflicts of interest, and we declare that we have none.

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Correspondence to: Daniel Santa Mina, University of Toronto, 55 Harbord Street, Toronto, Ontario M5S 2W6. E-mail: Daniel.santamina@utoronto.ca

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Current Oncology, VOLUME 22, NUMBER 6, December 2015








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ISSN: 1198-0052 (Print) ISSN: 1718-7729 (Online)