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A patient reported outcome measure for rectal cancer patients eligible for organ preservation: Development and validation of a Watch-and-Wait module for the Assessment of Burden of disease in ColoRectal Cancer (ABCRC) tool
Pennings, A. J. Kimman, M. L. Renehan, A. G. Perez, R. O. Azevedo, J. Fernandez, L. Gidding-Slok, A. H. M. Melenhorst, J. Beets, G. L. Breukink, S. O.
Pennings, A. J.
Kimman, M. L.
Renehan, A. G.
Perez, R. O.
Azevedo, J.
Fernandez, L.
Gidding-Slok, A. H. M.
Melenhorst, J.
Beets, G. L.
Breukink, S. O.
Abstract
AIM: The Assessment of Burden of ColoRectal Cancer (ABCRC)-tool is an integrated tool, developed in conjunction with colorectal cancer (CRC) patients, that measures the experienced burden of disease and lifestyle parameters and visualizes the results. To provide tailored follow-up care for watch-and-wait (WW) patients, in line with their specific needs and preferences, a WW module for the ABCRC-tool was developed. In this paper we describe the development and validation process of the WW module. METHODS: This study followed a multistep approach. First, a three-round Delphi survey was conducted with both patients and healthcare professionals (HP). Participants were asked to score common RC outcomes that emerged from qualitative interviews with patients and a targeted literature review. Based on included items, appropriate questions were formulated. Reliability was tested by assessing test-retest reliability, defined by Intra Class Correlation. Construct validity was evaluated by hypothesis testing. RESULTS: A total of 128 participants (75 patients and 53 HP) from four countries (UK, Brazil, Portugal and Netherlands) participated in the Delphi survey which included 41 items. After the consensus meeting seven outcomes and appropriate questions (including anxiety, fear of recurrence, fear of surgery, fear of stoma, fecal incontinence, urgency and happiness) were included in the WW module. Validity and reliability testing was completed by 50 Dutch WW patients. The ABCRC-WW module demonstrated sound construct validity and reliability. CONCLUSION: This study demonstrates good psychometric properties of the ABCRC-WW tool. This tool has the potential to facilitate patient-clinician communication, enhance patients' understanding of their condition, and enable individualized care through direct feedback.
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Date
2025
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Citation
Pennings AJ, Kimman ML, Renehan AG, Perez RO, Azevedo J, Fernandez L, et al. A patient reported outcome measure for rectal cancer patients eligible for organ preservation: Development and validation of a Watch-and-Wait module for the Assessment of Burden of disease in ColoRectal Cancer (ABCRC) tool. European journal of surgical oncology : the journal of the European Society of Surgical Oncology and the British Association of Surgical Oncology. 2025 Feb;51(2):109501. PubMed PMID: 39615295. Epub 2024/12/01. eng.