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

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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.

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Acknowledgement

We wish to thank the patients that participated in the study. We also owe a special thanks to patients or former patients that participated in the developmental process as co-researchers.

Funding

The study was funded by the Danish Cancer Society (R113-A6922-14-S34).

Author information

Authors and Affiliations

  1. Department of Psychology, University of Southern Denmark, Odense, Denmark

    Nanna Bjerg Eskildsen, Susanne S. Pedersen & Anna Thit Johnsen

  2. Department of Palliative Medicine, Bispebjerg and Frederiksberg Hospital, Copenhagen, Denmark

    Lone Ross, Mogens Groenvold & Anna Thit Johnsen

  3. School of Nursing and Midwifery, The University of Notre Dame, Fremantle, WA, Australia

    Caroline Bulsara

  4. Institute for Health Research, The University of Notre Dame, Fremantle, WA, Australia

    Caroline Bulsara

  5. Patient and Public (PPI) Representative, Copenhagen, Denmark

    Susanne Malchau Dietz

  6. Zealand University Hospital, Roskilde, Denmark

    Thora Grothe Thomsen

  7. Department of Regional Health Research, University of Southern Denmark, Odense, Denmark

    Thora Grothe Thomsen

  8. Department of Public Health, University of Copenhagen, Copenhagen, Denmark

    Mogens Groenvold

  9. Department of Cardiology, Odense University Hospital, Odense, Denmark

    Susanne S. Pedersen

  10. Department for Disability Inclusion and Special Needs, School of Education, University of Birmingham, Birmingham, UK

    Clara Rübner Jørgensen

Authors
  1. Nanna Bjerg Eskildsen
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Corresponding author

Correspondence to Nanna Bjerg Eskildsen.

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Conflict of interest

All authors declare that they have no conflicts of interest.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Research involving human participants and/or animals

The study was granted exemption from requiring ethics approval by The Regional Committee on Health Research Ethics (VEK) (Reference Number: H-15000936). In Denmark, Interviews and questionnaires studies do not require ethics approval. All procedures performed in studies involving human participants were in accordance with the ethical standards of the Regional Committee on Health Research Ethics (VEK) (Reference Number: H-15000936) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Eskildsen, N.B., Ross, L., Bulsara, C. et al. Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up. Qual Life Res 29, 2253–2274 (2020). https://doi.org/10.1007/s11136-020-02483-9

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