Purpose: Outcome measurement provides clinicians, services and funders with useful information. However, little is known about the experience of participating in outcome measurement during lower limb prosthetic rehabilitation from the patient's perspective.
Materials and methods: Thirty-two participants who underwent lower limb amputation within 5 years, and had experience of taking part in outcome measurement during prosthetic rehabilitation, were recruited from UK limb fitting centers and social media. Data were collected using focus groups and interviews and analysed using reflexive thematic analysis.
Results: Four themes were identified. (1) How does participating in outcome measurement make me feel? (2) Do the outcome measures used in routine clinical care capture an accurate picture of my recovery? (3) Who is outcome measurement for? and (4) are prosthetic services measuring what is meaningful? These themes suggest outcome measurement is not a neutral activity for patients following lower limb amputation.
Conclusions: Harnessing the positive impacts of measuring outcomes could be used for motivation, to support adjustment and recovery, to improve communication and to support shared decision-making. This could make outcome measurement more meaningful and patient-centered. However, there may be potential for patients to respond negatively to outcome measures and clinicians should consider their impact on psychosocial factors.
Keywords: Outcome; amputation; clinical; experience; measurement; patient reported outcome measures; performance-based; prosthetic.
Outcome measurement in prosthetic rehabilitation can provide clinicians, service providers and funders with important information.Adopting a patient-centred approach could make the process more meaningful and therefore beneficial for patients themselves.Measuring what is important to patients by considering a holistic approach beyond physical domains may make outcome measurement more meaningful.Patient centred approaches may include talking to patients about outcome measurement, using it to support motivation, goal setting and decision-making, as well as exploring outcome ranges to account for, or even capture variability.However, the potential for negative responses should not be overlooked, and clinicians should consider the psychosocial impact of outcome measurement on this patient group, especially when using performance-based measures.