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

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Eskildsen, Nanna Bjerg ; Ross, Lone ; Bulsara, Caroline ; Dietz, Susanne Malchau ; Thomsen, Thora Grothe ; Groenvold, Mogens ; Pedersen, Susanne S ; Jørgensen, Clara Rübner ; Johnsen, Anna Thit. / Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up. I: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 2020 ; Bind 29, Nr. 8. s. 2253-2274.

Bibtex

@article{40ba5e2de2024b87a9e0314ae238cb38,
title = "Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up",
abstract = "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.",
keywords = "Adult, Aged, Female, Follow-Up Studies, Humans, Male, Middle Aged, Neoplasms/psychology, Patient Participation/methods, Psychometrics/methods, Quality of Life/psychology, Surveys and Questionnaires, Patient participation, PPI, Neoplasms, Empowerment, Surveys and questionnaires, Psycho-oncology, Patient-reported outcome measures, Patient-centered care",
author = "Eskildsen, {Nanna Bjerg} and Lone Ross and Caroline Bulsara and Dietz, {Susanne Malchau} and Thomsen, {Thora Grothe} and Mogens Groenvold and Pedersen, {Susanne S} and J{\o}rgensen, {Clara R{\"u}bner} and Johnsen, {Anna Thit}",
note = "Publisher Copyright: {\textcopyright} 2020, Springer Nature Switzerland AG. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.",
year = "2020",
month = aug,
doi = "10.1007/s11136-020-02483-9",
language = "English",
volume = "29",
pages = "2253--2274",
journal = "Quality of Life Research",
issn = "0962-9343",
publisher = "Springer Netherlands",
number = "8",

}

RIS

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

VL - 29

SP - 2253

EP - 2274

JO - Quality of Life Research

JF - Quality of Life Research

SN - 0962-9343

IS - 8

ER -

ID: 61353576