Measuring the impact of extended cancer survival on broader aspects of life and wellbeing: The PROACT Study.

Abstract

227 Background: Living with cancer and its treatment affects many aspects of life, impacting roles and responsibilities. Formal assessment of these impacts is not normal practice and there is a need for rigorously developed, well-validated measures for both patients (pts) and informal caregivers (cgs). We present an overview of work (PROACT) detailing the development of such tools. Methods: Stage 1: Two systematic reviews of existing PROs used to measure broad life impact in pts and cgs, mapping individual scale items to conceptual domains to identify what is currently being measured and where gaps exist. Stage 2: Qualitative 1: Thematic analysis of in-depth interviews with pt-cg dyads about the impact of extended cancer survival on broader aspects of life and wellbeing to generate potential items for new measures. Qualitative 2: Cognitive interviews with new pt-cg dyad cohort using "think aloud" and specific probes to refine items for new measures. An advisory panel of 5 people with lived experience of cancer or caregiving worked with us throughout the project. Results: Systematic reviews identified gaps in existing measures around changes in occupational, financial, household and family roles and responsibilities and informed topic guides for Qualitative 1. Interviews with 24 pt-cg dyads generated 20 themes and 33 sub-themes from which 31 pt and 64 cg items were devised. Cognitive interviews with 20 pt-cg dyads in Qualitative 2 refined the measures. The final measures consisted of 29 items for pts (intended to be administered alongside FACT-G/QLQ-C30) and 60 for cgs (stand alone). Items cover family responsibilities, financial well-being, jobs and careers and additional sections on relationships and communication, lifestyle and outlook and health and well-being for cgs. Conclusions: We have developed two scales to measure broad life impacts of cancer for patients and informal caregivers. These are currently being evaluated and validated in Stage 3 of the project. Once validated these scales will be useful tools for clinicians and researchers enabling wide-ranging longer-term evaluation of new treatments in clinical trials and to aid decision-making about treatment options and supportive interventions.