Meaningful outcome measurement following lower limb prosthetic rehabilitation

Abstract

Outcome measurement is crucial to understand the impact of prosthetic rehabilitation. This includes the health and recovery of patients following lower limb amputation and can provide insights to help clinical decision making at the individual level, as well as the service and system levels to inform service improvement and research. Despite its potential value, outcome measurement is not routinely undertaken in prosthetic clinical settings. Little is known about which outcomes should be measured and which measures should be used, particularly considering the perspective of the patient for whom the outcome of prosthetic rehabilitation has the greatest impact.

The aim of this PhD was to understand and contribute to the evidence around meaningful outcome measurement following lower limb prosthetic rehabilitation, and drive changes in clinical practice that foster person-centred approaches to measuring outcome. This aim was addressed across four published papers which comprise this paper-based thesis.

Paper one describes a narrative review which explores the prosthetic outcome measurement literature from a clinical practice perspective. Themes highlight the importance of value in outcome measurement for clinicians, which may be linked to measuring what is meaningful, using feasible outcome measures, as part of outcome measurement practice that informs clinical care. However, understanding outcome domains of importance, especially for prosthetic users is a key issue.

Paper two addresses this issue using a qualitative approach to understand outcome domains of importance following prosthetic rehabilitation from the patient’s perspective. Thirty-seven participants recruited from four English prosthetic centres and social media took part in focus groups and interviews. Reflexive thematic analysis was used to generate five themes which describe outcome domains of importance and to develop an initial conceptual model.

Paper three describes a secondary analysis of data collected during the paper two qualitative study and explores the experiences of patients taking part in outcome measurement during prosthetic rehabilitation. Thirty-one participants from the original sample provided data for this analysis which presented four themes describing how outcome measurement made patients feel, concerns about accuracy, questions about who outcome measurement is for, and whether prosthetic services measure what is meaningful. This unique perspective could make outcome measurement practice more meaningful and patient-centred.

The final paper returned to focus on outcome domains of importance and built on paper two’s findings. A systematic review and qualitative synthesis using `Best fit’ framework analysis was undertaken to explore outcome domains of importance described in the limb loss literature, and further develop the initial conceptual model. Forty studies were included, describing the experience of 539 participants. Analysis led to development of four of the five domains and a second iteration of the conceptual model, named ECLIPSE. Meaningful outcome domains were 1) Being able to participate in important activities and roles, 2) Participating in the way I want to, 3) My prosthesis works for me, 4) If I am in pain, I can manage it, and 5) I am able to accept my new normal.

The ECLIPSE model is a rigorously developed, patient-centred and accessible representation of recovery which could be used to direct prosthetic rehabilitation programmes, as well as inform the evaluation of prosthetic care through the selection of outcome measures. The model sets out which domains should be measured following prosthetic rehabilitation from the patient’s perspective, addressing the gap in the literature, and contributing to meaningful outcome measurement practice.

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Identifiers

ORCID for Chantel Marie Ostler: orcid.org/0000-0002-8267-2892

ORCID for Alex Dickinson: orcid.org/0000-0002-9647-1944

ORCID for Cheryl Metcalf: orcid.org/0000-0002-7404-6066

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