Patient-reported outcome measurement in patients with hand conditions

Author: Kyra Sierakowski

Sierakowski, Kyra, 2020 Patient-reported outcome measurement in patients with hand conditions, Flinders University, College of Medicine and Public Health

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This thesis begins with a broad literature review to explore outcome measurement in the field of hand surgery. Of primary interest is the measurement of patient-reported outcomes and the instruments available in the field to do so. Chapter 2 reports the systematic literature review of the available patient-reported outcome measures (PROMs) for hand conditions, which was performed to establish the direction of further investigation. All relevant PROMs were identified and the development methodology used for each instrument was compared with the guidelines set forth by the Scientific Advisory Committee of the Medical Outcomes Trust (Lohr 2002). Chapter 3 reports on a clinical study performed with existing PROMs: the Michigan Hand Questionnaire (MHQ) (K. Chung et al. 1998), the Patient-Rated Wrist/Hand Evaluation (PRWHE) (MacDermid 1996) and the Disabilities of the Arm, Shoulder and Hand questionnaire (DASH) (Hudak et al. 1996). This study examined the acceptability of PROMs to hand clinic patients waiting for their clinical review appointment. Chapter 4 uses the participants’ responses to the DASH (from the previous study in Chapter 3) to explore whether the DASH complies with the Rasch measurement model.

The thesis then progresses with the development of a new PROM for hand conditions, the HAND-Q. Chapter 5 documents an international qualitative study involving 62 in-depth patient interviews with Canadian and Australian patients. The approach used was interpretive description (Thorne, Kirkham and MacDonald-Emes 1997), which acknowledges the current clinical knowledge that forms a framework for the qualitative work. Interviews were audio recorded and transcribed. The line-by-line analysis resulted in the development of a conceptual framework, which was used to guide the development of each of the scales of the HAND-Q. Chapter 6 details the process of item generation, which used quotes from participants, preserving their phrases and wording as much as possible to create the items for each scale of the HAND-Q. The resulting instrument is composed of 20 independently functioning scales, of which 10 are outcome scales and 10 patient experience/process of care scales.

The initial drafts of the HAND-Q underwent a process of content validation using cognitive interviews with an international sample of patients. Feedback was gained from an international sample of professionals in the field of hand conditions or psychometrics. On the basis of this feedback, the HAND-Q was further refined, with all changes discussed with patient participants. The HAND-Q is currently being translated and culturally adapted to allow for international field testing, as detailed in Chapter 7. The HAND-Q field test is to be carried out in nine countries speaking seven different languages. To confirm the HAND-Q scales were performing as intended, a preliminary Rasch analysis was performed on scales of the HAND-Q with adequate data from the Australian and Canadian field-test sites. Chapter 8 shows this preliminary analysis. The results suggest that seven scales are supported by the Rasch model. Further Rasch analysis will be performed at the completion of the international field test to finalise the HAND-Q scales. Chapter 9 shows the planned Phase III development to establish the psychometrics of the HAND-Q further. This work is ongoing and will be published separately to this thesis.

Keywords: hand conditions, hand surgery, patient-reported outcome, PRO, PROM, patient perspective, outcome measurement, rasch analysis

Subject: Surgery thesis

Thesis type: Doctor of Philosophy
Completed: 2020
School: College of Medicine and Public Health
Supervisor: Nicola Dean