Journal of patient-reported outcomes · 2026
Selection of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for long-term follow up of patients diagnosed with lung or rectal cancer.
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Linmans Gina, Deneckere Svin, Lens Charlotte, van Poel Esther, De Gendt Cindy, Sermeus Walter, De Ridder Dirk
Аннотация
BACKGROUND: Despite their recognized value, the heterogeneous use of PROMs and PREMs prevents standardized data collection across hospitals, limiting their impact on both individual patient care and broader healthcare optimization. This study aims to identify and establish a standardized set of PROMs and PREMs for lung and rectal cancer to support uniform data collection and follow-up.
METHODOLOGY: This multicenter study involved 10 Flemish hospitals focusing on lung and rectal cancer and applied a nine-phase methodology: (1) literature-based identification of PROMs and PREMs, (2) inventory of PROMs and PREMs currently used and proposed by the participating hospitals, (3) systematic assessment of PROM and PREM characteristics, (4) preliminary selection by the research team, (5) a Modified Delphi study with clinical experts, (6) an interview with methodologists, (7) patient focus groups, (8) a consensus meeting with clinical experts, and (9) finalization by the research group. A total of 13 lung cancer experts and 13 rectal cancer experts participated in the modified Delphi study. In addition, interviews were conducted with two methodologists, and five lung cancer patients and five rectal cancer patients, including both current and former patients, took part in the focus groups.
RESULTS: Consensus-based standardized sets of PROMs for lung and rectal cancer were selected. The final PROM sets consisted of the EQ-5D-5L (generic), EORTC QLQ-C30 and adapted PRO-CTCAE (cancer-specific), EORTC QLQ-LC29 (lung cancer-specific), and the EORTC QLQ-CR29, EORTC QLQ-LMC21 (1 item) and LARS (rectal cancer-specific), and an adapted version of the SF-HLQ for employment-related outcomes in both cancer populations. No PREM met the selection criteria.
CONCLUSION: Based on a structured multi-phase approach integrating quantitative and qualitative methods with input from both patients and clinical experts, standardized PROM sets were selected for lung and rectal cancer. A specific PREM needs to be developed.
METHODOLOGY: This multicenter study involved 10 Flemish hospitals focusing on lung and rectal cancer and applied a nine-phase methodology: (1) literature-based identification of PROMs and PREMs, (2) inventory of PROMs and PREMs currently used and proposed by the participating hospitals, (3) systematic assessment of PROM and PREM characteristics, (4) preliminary selection by the research team, (5) a Modified Delphi study with clinical experts, (6) an interview with methodologists, (7) patient focus groups, (8) a consensus meeting with clinical experts, and (9) finalization by the research group. A total of 13 lung cancer experts and 13 rectal cancer experts participated in the modified Delphi study. In addition, interviews were conducted with two methodologists, and five lung cancer patients and five rectal cancer patients, including both current and former patients, took part in the focus groups.
RESULTS: Consensus-based standardized sets of PROMs for lung and rectal cancer were selected. The final PROM sets consisted of the EQ-5D-5L (generic), EORTC QLQ-C30 and adapted PRO-CTCAE (cancer-specific), EORTC QLQ-LC29 (lung cancer-specific), and the EORTC QLQ-CR29, EORTC QLQ-LMC21 (1 item) and LARS (rectal cancer-specific), and an adapted version of the SF-HLQ for employment-related outcomes in both cancer populations. No PREM met the selection criteria.
CONCLUSION: Based on a structured multi-phase approach integrating quantitative and qualitative methods with input from both patients and clinical experts, standardized PROM sets were selected for lung and rectal cancer. A specific PREM needs to be developed.