Exploring meaningful outcome domains of recovery following lower limb amputation and prosthetic rehabilitation: the patient’s perspective

Abstract

Purpose There is currently no consensus regarding what outcome domains to measure following lower limb prosthetic rehabilitation. Prosthetic users have a unique insight into important outcome domains, little is currently known about their critical viewpoint. Materials and methods A total of 37 participants who underwent lower limb amputation in the last five years were recruited from UK limb fitting centres and social media. Data were collected using focus groups and interviews and analysed using reflexive thematic analysis. Results Five themes were identified. 1) The ability to participate in important activities, 2) how participants were able to undertake these activities, i.e., independently, with ease, safely and with minimal equipment. 3) A comfortable, easy-to-use prosthesis, 4) the importance of managing pain and finally, 5) adjusting and accepting their new normal. These five themes, or outcome domains, did not exist in isolation, but appeared to interact with each other, contributing to, or inhibiting the participant’s holistic sense of recovery. Conclusions Understanding important outcome domains that define what recovery means to people following amputation can help to inform domain consensus, as well as direct the focus of rehabilitation. Domain consensus would guide the selection of measurement tools that evaluate prosthetic interventions in a meaningful way. IMPLICATIONS FOR REHABILITATION There is currently no consensus around which outcome domains should be measured following prosthetic rehabilitation. Outcome domains of importance from a patient’s perspective focus on participation in important activities, prosthesis comfort, pain management, and acceptance of their new normal. Identifying these domains can help direct the focus of rehabilitation as well as inform outcome measurement practice. The interrelated nature of these domains suggests the need for a physical and psychosocial multi-domain approach to outcome measurement in prosthetic rehabilitation, with patient priorities at its centre.