International multiphase mixed methods study protocol to develop a cross-cultural patient-reported outcome and experience measure for hand conditions (HAND-Q)

Kyra Sierakowski, Nicola Dean, Andrea Pusic, Stefan Cano, Philip Griffin, Gregory Bain, Anne Klassen, Donald Lalonde

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)

Abstract

Introduction patient-reported outcome measures (PROMs) are instruments used to measure outcomes and experiences of healthcare from the patient perspective. The specific methodology used to develop a PROM should be communicated to establish the quality of the instrument. This mixed methods protocol describes the development of a cross-cultural, internationally applicable PROM for hand conditions, the HAND-Q. Methods and analysis The multiphase approach used for this study has been previously used with the development of other PROMs by our team (eg, BODY-Q, BREAST-Q, CLEFT-Q, FACE-Q). In Phase I, we establish what important concepts matter to patients with hand conditions. A conceptual framework is developed from a systematic review of existing PROMs in the field and an extensive international qualitative study. Interpretive description is the qualitative approach used. Item generation is based on the qualitative data. The preliminary scales will be created for each theme identified in the conceptual framework. These scales will be refined by cognitive debriefing interviews with participants and expert input. Phase II involves a large international sample of patients with varied hand conditions completing the field-test version of the HAND-Q. The scales will be refined using the modern psychometric approach of Rasch Measurement Theory. Analysis will result in a shortened set of clinically meaningful and scientifically robust HAND-Q scales. Ethics and dissemination This study is coordinated at Flinders University (Adelaide, Australia) where it has ethics board approval for phase I and phase II. Findings will be published in peer-reviewed journals and presented at local, national and international conferences.

Original languageEnglish
Article numbere025822
Number of pages8
JournalBMJ Open
Volume9
Issue number3
DOIs
Publication statusPublished - 20 Mar 2019

Bibliographical note

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

Keywords

  • patient reported outcome measures
  • psychometrics
  • qualitative research

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