Assessments Used to Measure Participation in Life Activities in Individuals with Cancer: A Scoping Review
Abstract Background There is a critical need to facilitate return to work, school, and life activities among individuals with and surviving cancer. Each of these areas is a component of participation, defined by the International Classification of Functioning, Disability, and Health (ICF) as involvement in a life situation. Before developing interventions to address participation, we must first understand how this concept is measured. This scoping review investigates what assessments are currently used to measure participation in life activities in individuals with cancer. Methods Six databases were systematically searched using keywords and controlled vocabulary through February 2019. Eligible studies used the term participation in the context of life situations and had an assessment with at least 5 participation-specific questions. Results More than 4,000 references were identified and screened for eligibility. Twenty-seven studies were included; 18 unique assessments of participation were identified. Assessments were 1) developed with the primary purpose of measuring participation (n= 8); 2) measured global or physical function (n=8; 4 had a domain specific to participation); or 3) measured community integration (n=1) or social activity (n=1). Most assessments (10/18) were not developed with the purpose of measuring participation and only 4 assessments measured key components of participation (e.g. satisfaction) other than frequency. Discussion Measuring participation in life activities is a developing area in oncology research. Most studies do not accurately or comprehensively measure this construct. The heterogeneity in the assessments used indicates no clear consensus on a gold-standard participation measure for use among individuals with cancer. Comprehensively measuring participation is an essential first step to helping individuals with and surviving cancer lead productive and meaningful lives during and after treatment. By identifying deficits in participation, healthcare providers can better understand what activities are most important to their patients and provide necessary interventions. To facilitate the development of targeted interventions, a comprehensive measure of participation needs to be validated for use with individuals with cancer.