Skip to main content
Erschienen in:

09.06.2020

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

verfasst von: Nanna Bjerg Eskildsen, Lone Ross, Caroline Bulsara, Susanne Malchau Dietz, Thora Grothe Thomsen, Mogens Groenvold, Susanne S. Pedersen, Clara Rübner Jørgensen, Anna Thit Johnsen

Erschienen in: Quality of Life Research | Ausgabe 8/2020

Einloggen, um Zugang zu erhalten

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.
Literatur
2.
Zurück zum Zitat Jerofke, T., Weiss, M., & Yakusheva, O. (2014). Patient perceptions of patient-empowering nurse behaviours, patient activation and functional health status in postsurgical patients with life-threatening long-term illnesses. The Journal of Advanced Nursing,70(6), 1310–1322. https://doi.org/10.1111/jan.12286.CrossRefPubMed Jerofke, T., Weiss, M., & Yakusheva, O. (2014). Patient perceptions of patient-empowering nurse behaviours, patient activation and functional health status in postsurgical patients with life-threatening long-term illnesses. The Journal of Advanced Nursing,70(6), 1310–1322. https://​doi.​org/​10.​1111/​jan.​12286.CrossRefPubMed
4.
Zurück zum Zitat Fayers, P. M., & Machin, D. (2016). Quality of Life—The assessment, analysis and reporting of patient-reported outcomes (3rd ed.). Chichester: Wiley. Fayers, P. M., & Machin, D. (2016). Quality of Life—The assessment, analysis and reporting of patient-reported outcomes (3rd ed.). Chichester: Wiley.
7.
Zurück zum Zitat Zimmerman, M. A. (1995). Psychological empowerment: Issues and illustrations. American Journal of Community Psychology,23(5), 581–599.CrossRef Zimmerman, M. A. (1995). Psychological empowerment: Issues and illustrations. American Journal of Community Psychology,23(5), 581–599.CrossRef
10.
Zurück zum Zitat McCorkle, R., Ercolano, E., Lazenby, M., Schulman-Green, D., Schilling, L. S., Lorig, K., et al. (2011). Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA: A Cancer Journal for Clinicians,61(1), 50–62. https://doi.org/10.3322/caac.20093.CrossRef McCorkle, R., Ercolano, E., Lazenby, M., Schulman-Green, D., Schilling, L. S., Lorig, K., et al. (2011). Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA: A Cancer Journal for Clinicians,61(1), 50–62. https://​doi.​org/​10.​3322/​caac.​20093.CrossRef
12.
Zurück zum Zitat Hewitt, M. E., & Ganz, P. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press. Hewitt, M. E., & Ganz, P. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press.
14.
Zurück zum Zitat Elberg Dengso, K., Tjornhoj-Thomsen, T., Oksbjerg Dalton, S., Marcel Christensen, B., Hillingso, J., & Thomsen, T. (2019). It's all about the CA-19-9. A longitudinal qualitative study of patients' experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct. Acta Oncology. https://doi.org/10.1080/0284186X.2018.1562212.CrossRef Elberg Dengso, K., Tjornhoj-Thomsen, T., Oksbjerg Dalton, S., Marcel Christensen, B., Hillingso, J., & Thomsen, T. (2019). It's all about the CA-19-9. A longitudinal qualitative study of patients' experiences and perspectives on follow-up after curative surgery for cancer in the pancreas, duodenum or bile-duct. Acta Oncology. https://​doi.​org/​10.​1080/​0284186X.​2018.​1562212.CrossRef
15.
Zurück zum Zitat Cecilie Sperling, M. S., Jensen, H., & Knudsen, J. L. (2014). Current organisation of follow-up does not meet cancer patients’ needs. Danish Medical Journal,61, 6. Cecilie Sperling, M. S., Jensen, H., & Knudsen, J. L. (2014). Current organisation of follow-up does not meet cancer patients’ needs. Danish Medical Journal,61, 6.
17.
Zurück zum Zitat Sundhedsstyrelsen (2015). Opfølgningsprogram for prostatakræft. Sundhedsstyrelsen (2015). Opfølgningsprogram for prostatakræft.
19.
21.
Zurück zum Zitat Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1—eliciting concepts for a new PRO instrument. Value Health,14(8), 967–977. https://doi.org/10.1016/j.jval.2011.06.014.CrossRefPubMed Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1—eliciting concepts for a new PRO instrument. Value Health,14(8), 967–977. https://​doi.​org/​10.​1016/​j.​jval.​2011.​06.​014.CrossRefPubMed
22.
Zurück zum Zitat Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: Part 2—assessing respondent understanding. Value Health,14(8), 978–988. https://doi.org/10.1016/j.jval.2011.06.013.CrossRefPubMed Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: Part 2—assessing respondent understanding. Value Health,14(8), 978–988. https://​doi.​org/​10.​1016/​j.​jval.​2011.​06.​013.CrossRefPubMed
26.
Zurück zum Zitat Flick, U. (2018). Designing qualitative research. Thousand Oaks, CA: Sage. Flick, U. (2018). Designing qualitative research. Thousand Oaks, CA: Sage.
27.
Zurück zum Zitat Willis, G. B. (2005). Cognitive interviewing. Thousand Oaks, CA: Sage.CrossRef Willis, G. B. (2005). Cognitive interviewing. Thousand Oaks, CA: Sage.CrossRef
28.
Zurück zum Zitat Magasi, S., Ryan, G., Revicki, D., Lenderking, W., Hays, R. D., Brod, M., et al. (2012). Content validity of patient-reported outcome measures: Perspectives from a PROMIS meeting. Quality of Life Research,21, 739–746.CrossRef Magasi, S., Ryan, G., Revicki, D., Lenderking, W., Hays, R. D., Brod, M., et al. (2012). Content validity of patient-reported outcome measures: Perspectives from a PROMIS meeting. Quality of Life Research,21, 739–746.CrossRef
29.
Zurück zum Zitat Seckin, G. (2011). Informational and decisional empowerment in online health support communities: Initial psychometric validation of the Cyber Info-Decisional Empowerment Scale (CIDES) and preliminary data from administration of the scale. Supportive Care in Cancer,19(12), 2057–2061. https://doi.org/10.1007/s00520-011-1249-y.CrossRefPubMed Seckin, G. (2011). Informational and decisional empowerment in online health support communities: Initial psychometric validation of the Cyber Info-Decisional Empowerment Scale (CIDES) and preliminary data from administration of the scale. Supportive Care in Cancer,19(12), 2057–2061. https://​doi.​org/​10.​1007/​s00520-011-1249-y.CrossRefPubMed
Metadaten
Titel
Development and content validation of a questionnaire measuring patient empowerment in cancer follow-up
verfasst von
Nanna Bjerg Eskildsen
Lone Ross
Caroline Bulsara
Susanne Malchau Dietz
Thora Grothe Thomsen
Mogens Groenvold
Susanne S. Pedersen
Clara Rübner Jørgensen
Anna Thit Johnsen
Publikationsdatum
09.06.2020
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 8/2020
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02483-9