Cancer Survivors’ Participation in Meaningful Life Activities, A Mixed Methods Approach
Date of Award
Doctor of Philosophy (PhD)
Chair and Committee
Allison A. King
A new cancer diagnosis dramatically impacts an individual’s daily life. While data describing cancer-related symptoms (e.g. fatigue) and impairments (e.g. weakness) are abundant, there remains limited data detailing the impact of cancer on survivors’ daily life participation. Advancement in participation research is challenged by the lack of a universally accepted definition of participation and a standard approach to measurement. Previous research evaluating participation among cancer survivors is limited by small sample sizes, cross-sectional data including only a single disease group, and assessing participation exclusively among individuals who have completed active cancer treatment. The purpose of the presented dissertation was to advance the field of cancer rehabilitation and participation science by 1) identifying what assessments are used to measure participation among cancer survivors; 2) characterize how cancer survivors define participation; and 3) determine how participation is impacted in the first six-months following a new cancer diagnosis.In synthesizing the current state of evidence for participation measurement in oncology through a scoping review, the vast heterogeneity in assessments used to measure participation among cancer survivors was revealed. To address the second aim of this dissertation, we conducted interviews with 40 cancer survivors to add to the body of evidence seeking to broaden the conceptualization of participation. Findings confirmed core characteristics of participation identified in previous research including control, relationships, community engagement, and value, and highlighted that participation is an important construct to evaluate among cancer survivors. Participation was then prospectively evaluated in a cohort of 123 survivors newly diagnosed with brain, breast, colorectal, or lung cancer for the first six-months post diagnosis. Patient-reported outcome (PRO) data were collected at three time points and included the Community Participation Indicators as the primary participation outcome and Patient-Reported Outcome Measurement Information System (PROMIS) ability to participate in social roles and activities as the secondary participation outcome. Additional PROs were collected on various health domains, such as physical function, fatigue, and anxiety. While there were no significant changes in participation over this six-month period, survivors demonstrated, on average, mildly impaired participation within six months of diagnosis. The colorectal group reported mild impairments as early as one-month post diagnosis. Approximately half the sample reported moderate impairments in participation, physical function, and mental health, indicating they may benefit from rehabilitation services. However, only 20-36% of individuals reporting moderate impairments in these health domains were previously referred to appropriate rehabilitation services by their medical team. PROs assessing participation and other domains of health relevant to rehabilitation (e.g. physical function, anxiety) were an effective method to identify survivors who may benefit from physical or occupational therapy or mental health support. Future work needs to measure participation among survivors from the point of diagnosis and follow them for longer periods of time during their multi-year cancer journeys. Evaluating participation from diagnosis can support the prevention, early detection, and treatment of cancer-related disability.
L'Hotta, Allison Jean, "Cancer Survivors’ Participation in Meaningful Life Activities, A Mixed Methods Approach" (2022). WUSM Theses and Dissertations – All Programs. 27.