Introduction to the special issue on cancer rehabilitation

Averages are informative, but individuals are found within the standard deviation. This is the first of many things I remember learning from my doctoral advisor, Linda Tickle-Degnen (Tickle-Degnen, 2003). This adage came to mind as I read through the collection of articles within this special issue. People respond to cancer diagnosis and treatment in idiosyncratic ways that make it hard to identify sweeping generalizations. This special issue illuminates the range of experiences that can be seen in cancer survivors and, therefore, adds to the knowledge base needed for cancer rehabilitation.

There was a strong, international response to our call for papers on cancer rehabilitation and I am honored to serve as a guest editor for this special issue. There were so many accepted articles that a subsequent grouping will be presented in another issue of the journal later this year. The ones selected for this special issue use various methods such as quantitative analyses of clinical or large datasets, intervention development studies, and qualitative research. The target populations of the articles are likewise diverse, spanning pediatrics to older adults, including both those living with advanced cancer to those who have completed cancer treatment. The topics reflect primary concerns of occupational therapy practitioners: functional limitations, wellness, daily routines, and employment issues. These topics echo a growing call for occupational therapists to take a leading role in reducing participation restrictions and enhancing activity engagement for cancer survivors at every step along the cancer treatment continuum (Newman et al., 2019; Sleight and Duker, 2016).

One of the challenges in cancer rehabilitation is the insidious nature of disablement in oncology (Cheville et al., 2011). There are some acute or emergent conditions, such as lymphedema, that provide overt indications of the need for rehabilitative services. However, changes in daily activities, work capacity, and social participation may be more subtle and are less likely to come to the attention of oncologists. As such, leaders in cancer rehabilitation have advocated for triage processes, that help to screen and identify people who may benefit from rehabilitation (Alfano et al., 2019; Pergolotti et al., 2019). The lead article in this special issue affirms the need for screening for functional limitations, particularly in recent cancer survivors. Hong and colleagues conducted a secondary analysis of a dataset of 2372 recent and long-term cancer survivors. They found that people who recently completed cancer treatment were more likely to report difficulty in work, daily tasks with high physical demands, and social participation when compared to long-term survivors. In addition to highlighting the need for screening for functional limitations, this raises interesting questions. What is the natural history of recovery in terms of social participation and employment? Could access to rehabilitation accelerate recovery in those domains? If so, are there enough evidence-based interventions in those domains? I suspect not, as the preponderance of the evidence for cancer rehabilitation is focused on impairment reduction. Hong’s article lays a nice foundation for future longitudinal research and program development.

Intervention development studies are crucial to the advancement of the science and practice of cancer rehabilitation. The article by Morency and colleagues focuses on a wellness intervention for caregivers of people undergoing hematopoietic stem cell transplantation, one of the most arduous cancer treatments. The article presents quantitative data regarding recruitment, participation, and intervention content, as well as qualitative data regarding what participants felt were the more and less valuable aspects of the new program. Such information about feasibility and acceptability is important to gather prior to launching efficacy trials. Sharing this information can help to inform both program development by clinicians and future studies by scientists.

Practice and research are likewise informed by the remaining four descriptive articles. The article by Onal and colleagues is a quantitative analysis of the cognitive functioning of 102 children with brain tumors, compared to children who are typically developing. Using a common occupational therapy assessment, they found that children undergoing treatment for brain tumors experience cognitive impairments that fall within the realm of occupational therapy practice. The remaining three articles utilize qualitative methods to explore important topics. Polo and colleagues used photo-elicitation methodology to support their phenomenological study of the lived experiences of cancer survivors. Maersk and colleagues explored the occupational disruptions of people living with advanced cancer, illuminating participants’ strategies for managing uncertainties and exerting personal choice within their routines and environment. Hunter and Rowles have addressed an understudied topic, exploring how cancer survivors approaching retirement manage their work lives. All of the articles offer insights to occupational therapy practitioners working with those populations and can help us to initiate meaningful conversations that may help us better to understand and address patients’ perspectives and priorities.

I will close by returning to the idea of variation with research studies. Being attuned to the variation between individuals in response to cancer and its treatment can help us develop our clinical reasoning and scientific curiosity. I hope the BJOT readership enjoys this special issue and uses it to contribute to and continue the conversation on how to provide patient-centered cancer rehabilitation.