TY - JOUR
T1 - Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up
AU - Eskildsen, Nanna Bjerg
AU - Ross, Lone
AU - Bulsara, Caroline
AU - Dietz, Susanne Malchau
AU - Thomsen, Thora Grothe
AU - Groenvold, Mogens
AU - Pedersen, Susanne S
AU - Jørgensen, Clara Rübner
AU - Johnsen, Anna Thit
N1 - Publisher Copyright:
© 2020, Springer Nature Switzerland AG.
Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020/8
Y1 - 2020/8
N2 - 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.
AB - 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.
KW - Adult
KW - Aged
KW - Female
KW - Follow-Up Studies
KW - Humans
KW - Male
KW - Middle Aged
KW - Neoplasms/psychology
KW - Patient Participation/methods
KW - Psychometrics/methods
KW - Quality of Life/psychology
KW - Surveys and Questionnaires
KW - Patient participation
KW - PPI
KW - Neoplasms
KW - Empowerment
KW - Surveys and questionnaires
KW - Psycho-oncology
KW - Patient-reported outcome measures
KW - Patient-centered care
UR - http://www.scopus.com/inward/record.url?scp=85086163057&partnerID=8YFLogxK
U2 - 10.1007/s11136-020-02483-9
DO - 10.1007/s11136-020-02483-9
M3 - Journal article
C2 - 32519187
SN - 0962-9343
VL - 29
SP - 2253
EP - 2274
JO - Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
JF - Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
IS - 8
ER -