Survivor-driven development of a PROM for use in routine colorectal cancer care.

Abstract

Background and purpose: Despite the availability of patient reported outcome (PRO) measures (PROMs) for assessing survivorship care needs, their successful implementation remains limited. This study aimed to improve the likelihood of implementation success by actively engaging end-users in developing a PROM designed to address implementation barriers.

Patients and methods: Selected barriers for implementation were: (1) PROMs do not adequately address relevant issues, (2) PROMs can inhibit patient-clinician interaction, and (3) PROMs are not suitable for all patients. Management of these barriers were discussed at two 1-day workshops at Vejle Hospital with in-person attendance by colorectal cancer (CRC) survivors and informal caregivers (ICs). Relevant issues of CRC survivorship care (barrier 1) were defined based on data from four distinct sources. Solutions to overcoming barriers 2 and 3 were discussed at the workshops. Workshop data were guided by the Qualitative Analysis Guide of Leuven (QUAGOL) guide.

Results: The four distinct sources provided data from 4,545 CRC survivors. Thirteen individuals attended the in-person workshops. The following constructs were identified as relevant (barrier 1): self-rated well-being relative to pre-diagnosis, late effects encompassing both psychological and physical aspects, the role of caregivers, identity considerations, support systems, economic impacts, rehabilitation needs, and information provision. Specific element (e.g., keywords, prioritisation and agenda-setting) were incorporated to facilitate patient-clinician interactions (barrier 2). All constructs were considered relevant across all stages of CRC survivorship (barrier 3). The final PROM comprised 34 items.

Interpretation: This dialogue-tool is designed to address implementation barriers by providing direct feedback on relevant late effects and supportive care needs from CRC survivors to clinicians.