Abstract
Cancer survivors are at risk for occupational performance issues related to activities of daily living, instrumental activities of daily living, work, and social and community participation. Occupational therapy practitioners can address these performance issues by offering services within existing community cancer survivorship programs that focus on adaptive and compensatory strategies to facilitate meaningful lifestyles and optimize health and well-being. Occupational therapy services do not currently exist at these community sites, nor are occupational therapy practitioners recognized as providers in existing community cancer survivorship programs. Recognition of practitioners’ distinct value in cancer survivorship, advocacy for occupational therapy services in the community, development of supporting documentation for occupational therapy’s role in community survivorship, and research on the efficacy of interventions in community cancer survivorship are needed to expand occupational therapy’s role with this growing population.
Cancer survivors are at risk for long-term occupational performance issues because of physical and psychosocial side effects of cancer and its treatments such as lymphedema, fatigue, cancer-related cognitive dysfunction, depression, anxiety, pain, and peripheral neuropathy (Yabroff, Lawrence, Clauser, Davis, & Brown, 2004). However, one study found that only 32% of older adults with cancer received occupational therapy within 2 yr of their diagnosis (Pergolotti, Cutchin, Weinberger, & Meyer, 2014).
Inspired by this disparity between need and access to care, we contacted a community cancer organization providing a survivorship program developed and implemented on a national level and offered occupational therapy services to its large population of cancer survivors. This national program involved an interdisciplinary team consisting of a social worker, physical therapist, dietitian, nurses, and medical doctors (J. Taylor, personal communication, August 26, 2014). However, this team did not include an occupational therapist. Moreover, the local community cancer organization was doubtful about the benefits of incorporating occupational therapy into its current services because it was unable to see the distinct value of occupational therapy. This experience motivated us to create this call to action for occupational therapy practitioners to take intentional steps toward becoming recognized as valuable experts in addressing cancer survivors’ occupational needs.
Cancer Survivors’ Occupational Performance Issues and Occupational Therapy’s Potential Role
Cancer survivors report poor mental and physical health-related quality of life (QOL) more often than do adults without cancer, and they are also more likely to need help with activities of daily living and instrumental activities of daily living (IADLs; Weaver et al., 2012; Yabroff et al., 2004). Cancer and medical treatments can affect survivors’ occupational performance during, shortly after, or well after treatment has concluded, and effects may persist for more than 20 yr (Koppelmans et al., 2012). Treatment-related fatigue, cancer-related cognitive dysfunction, lymphedema, and emotional issues greatly affect survivors’ occupational functioning and are not being adequately addressed by other related professions. Occupational therapy can help decrease the impact of these side effects and improve occupational performance among survivors.
Approximately 50% of cancer survivors report that fatigue significantly affects their daily routine, participation in social activities, and overall occupational performance (Mustian et al., 2007; Yuen, Mitcham, & Morgan, 2006). Although a prescribed physical therapy or exercise program can improve cancer-related fatigue over time (McMillan & Newhouse, 2011), survivors’ low energy levels affect their participation before the benefits of exercise are manifested. Occupational therapy practitioners can recommend individualized energy conservation strategies to enhance participation in current life roles and engagement in work and to improve occupational performance.
In addition to fatigue, cancer-related cognitive dysfunction has a large impact on occupational performance. Cognitive changes among survivors have been well documented in the literature as being associated with reduced productivity, social role functioning, and community engagement, and their impact on occupational performance greatly affects QOL (Janelsins, Kesler, Ahles, & Morrow, 2014; Player, Mackenzie, Willis, & Loh, 2014). Cancer-related cognitive dysfunction is reported in as many as 35% of survivors after medical treatment and can persist for as long as 20 yr (Janelsins et al., 2014). Survivors need strategies to overcome changes in concentration and memory to ensure occupational engagement (Player et al., 2014). Practitioners can provide individualized recommendations for cognitive strategies to compensate for or adapt to cancer-related cognitive dysfunction that have the potential to improve survivors’ participation in life roles and QOL.
Lymphedema can result in impairments in upper-extremity dressing, grooming, job-related tasks, IADLs, and functional mobility during occupational engagement. Petrek, Senie, Peters, and Rosen (2001) found that 77% of their participants developed lymphedema within the first 3 yr after cancer surgery. Occupational therapists with advanced lymphedema training can offer community group programs on risk reduction practices and strategies for ongoing monitoring and surveillance of lymphedema. They can also make individualized recommendations for occupational performance improvements.
Many cancer survivors have decreased QOL, social participation, and occupational engagement as a result of unmet emotional needs (Silver, Baima, Newman, Galantino, & Shockney, 2013) and have reported a decreased sense of self-esteem and self-worth (Player et al., 2014). Practitioners can promote mental wellness by promoting risk-reduction strategies such as healthy habits and routines and providing training in relaxation and coping techniques (American Occupational Therapy Association [AOTA], 2013). Evaluating psychosocial function, including self-image and self-esteem, and implementing strategies to enhance self-efficacy are important roles for occupational therapy practitioners working with survivors (Silver et al., 2013).
Cancer survivorship care is now requiring the redefinition of illness beyond the acute phases in a traditional medical model (Campbell et al., 2011); in addition, newer models of care are being developed in recognition of the need for long-term delivery of services including occupational therapy (Sleight & Duker, 2016). Many cancer survivors have reported unmet rehabilitation needs (Thorsen et al., 2011). Practitioners need to identify alternative venues to triage these needs and provide care to improve survivors’ health-related QOL and participation in everyday activities. Most cancer patients receive follow-up care in the community (McCabe, Faithfull, Makin, & Wengstrom, 2013); thus, occupational therapy practitioners must recognize their potential role in promoting health and well-being among community cancer survivors.
Occupational Therapy’s Distinct Value for Community Cancer Survivors
As occupational therapy services continue to expand into communities, it is imperative that occupational therapy practitioners consider their distinct value for community cancer survivors. Practitioners could add value to community programming by offering health and well-being services aimed at improving cancer survivors’ productivity in life roles, social participation, occupational and community engagement, and QOL. To successfully move this agenda forward, practitioners who have worked with cancer survivors in any setting should lead this call. Practitioners in these programs could reach out to survivors who have unidentified or new performance needs and could focus on adaptive and compensatory strategies to facilitate meaningful lifestyles for the promotion of health and well-being (AOTA, 2013).
Occupational therapy services could be provided in a group setting with individualization for each survivor as needed. If survivors need more individualized attention, they could be educated on the benefits of requesting formalized occupational therapy services through medical referral to outpatient clinics. Providing these services in a group setting could allow practitioners access to a greater community of survivors and enable them to promote psychosocial support through peer interaction. Information gleaned from groups could also increase the profession’s knowledge of issues that survivors perceive as most debilitating and lead to the development of intervention methods that have the most impact.
Taking the Next Step
Practitioners who want to gain entrance to community-based survivorship programs should consider contacting local organizations to provide education on the benefits of occupational therapy services relevant to cancer survivors. Practitioners can collaborate with the organization to identify how to incorporate these services into their current programming structure. They can start small with one service and expand slowly, allowing interactions with survivors to guide the development of additional programming. Consultation and partnerships with other disciplines have the additional benefit of allowing practitioners to market themselves and to develop comprehensive intervention plans.
Practitioners need research to support the provision of occupational therapy services in survivorship programming and to inform evaluation and intervention practices. Research could also more broadly examine the impact of occupational therapy community survivorship programming on survivors’ occupational health and well-being.
Barriers to Occupational Therapy Service Provision
Occupational therapy practitioners face several barriers to providing services in community cancer survivorship programs. For example, Cancer Support Community and Livestrong collaborated to create the Cancer Transitions Program, which offers services to survivors who have completed cancer treatment (Cancer Support Community, 2014). Occupational therapy practitioners were not involved in the creation of this program, however, and are not recognized mandatory providers of care. A large barrier to service provision is that occupational therapy is not recognized as a key profession at interdisciplinary program planning meetings. Confusion around occupational therapy’s role and the benefits of occupational therapy services for this population adds to this difficulty. At this time, documentation supporting occupational therapy practitioners’ role with cancer survivors is insufficient to share with community partners. As a result, practitioners who would like to lend their expertise to community programs may struggle to articulate and demonstrate occupational therapy’s distinct value to those programs. With the transition of the Patient Protection and Affordable Care Act and the adoption of habilitation services definitions at the individual state level (AOTA, 2014), reimbursement for community cancer survivorship services has not been explored, but it is critical.
Implications for Occupational Therapy Practice
To address the broad spectrum of cancer survivors’ physical, practical, and emotional issues, health care providers must recognize that they have a unique role in addressing survivors’ needs (Pollack et al., 2005). If the occupational therapy profession does not act now, it will lose its chance to be a collaborator in community cancer survivorship. Community occupational therapy programs can provide much-needed services to a population potentially at risk for occupational deprivation. The profession can take action in the following ways:
Increase awareness of this population so that occupational therapy practitioners can serve as advocates for patients. As survivorship programs continue to develop, all practitioners should be aware of common issues faced by this population so that as practitioners encounter patients in more traditional settings, they can educate them on available resources and advocate for them to obtain services to comprehensively address all of their occupational needs. Patients can find navigating through the shifting health care landscape confusing, and occupational therapy practitioners can often serve as both educator and advocate for patients. Assisting survivors in this way has the potential to create a population of survivors who are more aware of the benefits occupational therapy can provide, making them more likely to seek or request occupational therapy services.
Develop supporting documentation outlining occupational therapy’s role in community survivorship. To increase occupational therapy practitioners’ role in cancer survivorship programs, more resources need to be available for practitioners who want to further their knowledge in this area and build community survivorship programming. AOTA could lead the development of additional documents, such as consumer fact sheets and practitioner tool kits, related to community cancer survivorship. Along with supporting our profession in community practice in the promotion of health and well-being (AOTA, 2013), practitioners also need to support and define occupational therapy’s role in community cancer survivorship care. In addition, educating other professionals and the community at large regarding occupational therapy’s potential role in survivorship programming is essential. These educational steps and supportive documents would assist practitioners who have a desire to develop or collaborate with community cancer survivorship programs with their initial proposals for service. Creating comprehensive resources for practitioners allows them to advocate more cohesively for the profession.
Advocate for a larger role for occupational therapy in community cancer survivorship. Occupational therapy’s role in providing ongoing services to survivors in the community and following up with occupational performance issues is unclear to many community cancer survivorship programs. It is imperative that occupational therapy practitioners articulate the distinct value of their services to community cancer survivorship programs. As the medical community continues to recognize and develop programs to meet the needs of the growing population of cancer survivors, our profession needs to be recognized at interdisciplinary meetings as a major stakeholder. This recognition would allow occupational therapy practitioners to be included as valued care providers under written survivorship guidelines and would acknowledge them as essential care providers in various survivorship training programs in the community.
Document and disseminate the efficacy of interventions in cancer survivorship programs. Practitioners working with this population must document the effectiveness of interventions to both validate our involvement with this population and contribute to evidence-based practice. By tracking benefits and gains to participants and disseminating our results to the profession, we can better develop and refine programming for cancer survivors. This effort will also give practitioners who want to gain entrance to community-based programming more support for their role on an interdisciplinary community team. In addition, further research on the benefits of occupational therapy interventions would lead to greater support for and increased likelihood of continued funding of community-based programs.
Risk of Inaction
As the health care community strives to meet the needs of cancer survivors, inaction by the occupational therapy profession will lead to its continued exclusion from community cancer survivorship programs, decreased referrals for patients to receive occupational therapy services, and a growing population of cancer survivors with occupational performance problems that are not being addressed. With this new recognition of survivorship care, many decisions will need to be made with regard to funding, and further legislation will need to be developed to guide policies with regard to this population. Occupational therapy practitioners have valuable contributions to make to advocacy on this issue at both the local and national levels. If we fail to act, we will be left out of important decisions regarding the future of care for this population and will not be recognized as valuable providers or receive any funding distribution.
Conclusion
The oncology population has long been viewed by the medical world as an acute population, but with the growing number of cancer survivors living long lives and facing issues decades past the end of treatment, the occupational therapy profession must shift its view of this population. With this shift, programming must continue to be developed to help this population manage current impairments, monitor for long-term conditions, and establish healthy habits as preventive measures. Occupational therapy needs to be at the interdisciplinary table, and practitioners need to be active collaborators in evidence-based community cancer survivorship programming. If the occupational therapy profession rises to this occasion, we can better advocate for the inclusion of occupational therapy services, thus increasing access for all survivors and improving their overall occupational health and well-being.
Footnotes
Note. Each issue of the 2017 volume of the American Journal of Occupational Therapy features a special Centennial Topics section containing several articles related to a specific theme; for this issue, the theme is occupational therapy’s role in cancer treatment and recovery. The goal is to help occupational therapy professionals take stock of how far the profession has come and spark interest in the many exciting paths for the future. For more information, see the editorial in the January/February issue, 
Acknowledgments
We thank Wanda Mahoney, Michael Brady, and the Midwestern University writing committee members for their helpful feedback on initial drafts of this article.