Longitudinal quality of life measurement in colorectal cancer survivorship: a scoping review of patient-reported outcome measures (PROMs).

PURPOSE: This study aimed to identify the Patient-Reported Outcome Measures (PROMs) used to assess health-related quality of life (HRQoL) in colorectal cancer (CRC) survivors over time, examining the specific HRQoL domains assessed by PROMs, and exploring PROM use across interventions, age groups, settings, and survivorship phases.

METHODS

PubMed, Embase, CINAHL, and PsycINFO were systematically searched for studies published between January 2005 and March 2025. Eligible studies focused on survivors with local or locally advanced CRC, where HRQoL was assessed at least at two timepoints (< 2 years and 5 + years post-diagnosis) using either a comprehensive PROM or two or more PROMs covering different domains and reported outcomes. Studies were screened independently by two reviewers.

RESULTS

The review included 21 articles representing 15 unique studies. Disease-specific PROMs predominated, commonly supplemented with generic instruments. Measurement timing and domain coverage varied widely. Physical health and symptom domains such as bowel function, fatigue, and pain were consistently assessed, whereas psychosocial constructs such as fear of cancer recurrence, financial strain, and social reintegration were less frequently captured. Temporal mapping of PROMs revealed strong emphasis on acute recovery within 2 years and limited long-term monitoring beyond 5 years.

CONCLUSIONS

PROM use in CRC survivorship research remains fragmented. Harmonisation of measures, survivor involvement in PROM development, and longitudinal implementation are essential next steps to generate comparable, patient-centred, and policy-relevant evidence that supports long-term survivorship care.

SCOPING REVIEW REGISTRATION: This protocol has been registered prospectively with the Open Science Framework (OSF) https://osf.io/a9rf7 .

IMPLICATIONS FOR CANCER SURVIVORS: More consistent and long-term use of PROMs in follow-up care can help identify late treatment effects and under-recognised survivorship issues.