Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up

Purpose: The aim of this study was to develop and ensure the content validity of a new patient-reported outcome measure, the Cancer Patient Empowerment Questionnaire (CPEQ), to measure the level of, desire for, and enablement of empowerment among cancer patients in follow-up. Methods: An iterative process based on: (i) empowerment theories by Zimmerman and Tengland, (ii) a systematic review of questionnaires measuring empowerment or related concepts among cancer patients, (iii) qualitative data from 18 semi-structured interviews with Danish cancer patients in follow-up, (iv) input from a group of eight cancer patients involved as co-researchers and from an expert steering group, and (v) cognitive interviews with 15 cancer patients in follow-up. Results: The items for the CPEQ were developed and revised and 12 versions of the questionnaire were evaluated. The final version consists of 67 items, covering three different dimensions of empowerment: (A) empowerment outcomes consisting of three components: (A1) the intrapersonal-, (A2) interactional-, and (A3) behavioral component, (B) empowerment facilitators (enablement), and (C) the value of empowerment. Conclusions: This study documents the theoretical and empirical basis for the development of the CPEQ and its content validity. The CPEQ provides a tool for researchers to assess the level of, desire for, and enablement of empowerment among cancer patients. The next steps will be to use the CPEQ in a nationwide study of empowerment in cancer follow-up and subsequently shorten the CPEQ based on psychometric methods in order to make it more relevant in clinical studies.