Background: It is essential to include patient-reported outcomes (PROs), such as health-related quality of life and symptom burden, in follow-up care of colorectal cancer (CRC) survivors. These outcomes are most valuable when they are discussed with patients and used to guide follow-up care. The purpose of this study was to develop and validate the Assessment of Burden of Colorectal cancer (ABCRC)-tool: a tool that includes a patient-reported questionnaire covering the experienced burden of colorectal cancer, assessment of lifestyle parameters, visualisation of the results, and treatment advice.
Methods: A 5-step method was used to develop the ABCRC-tool: (1) definition of the experienced burden of CRC, (2) determination of the components of experienced burden, (3) formulation of the instrument preconditions, (4) literature study on existing instruments, (5) development of an integrated instrument. Content validity was evaluated by think-aloud interviews with 11 patients and 22 healthcare professionals (HCPs).
Results: The ABCRC-tool consists of a generic module and three CRC specific modules with items related to experienced disease burden, and lifestyle. The CRC specific modules are available for both colon and rectal cancer patients with anastomosis, and patients with a stoma. An algorithm with cut-off points was developed to visualise outcomes and offer treatment advice based on (inter)national guidelines. The evaluation of content led to a few minor amendments.
Conclusion: The ABCRC-tool is a product of close cooperation between patients and HCPs and has good face and content validity. It is aimed to incorporate PROs in treatment decisions in oncological care.
Keywords: Burden of disease; Colorectal cancer; Content validity; PROM; Patient reported outcome measures; Patient reported outcomes.
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