Exploring the patient experience and perspectives of taking part in outcome measurement during lower limb prosthetic rehabilitation: a qualitative study.

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.

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.

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

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 REHABILITATIONThere 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.

Learning about the changing needs for prosthetics service provision from routinely collected digital centre management data: An exemplar study across three clinics in Cambodia.

Background: Prosthetic service development and delivery rely on data describing population needs. These needs are context-specific, but most existing data come from high-income countries or small geographic areas, which are often not comparable. This study analysed routinely collected digital patient record data at multiple time points to provide insights into characteristics of people accessing Cambodian prosthetic services. Methods: We investigated trends in birth year, sex, year and reason for limb absence, and prosthesis type, over three decades. Then, we observed data from 2005 and 2019 indicating how the population actively accessing prosthetics services has changed. Results: Temporal trends in prosthetics service user demographics corresponded with events in Cambodia's socio-political history. The predominant historical reason for limb absence prior to 2000 was weapon trauma during and following conflict. Since 2000, this was replaced by non-communicable disease and road accidents. Transtibial remained the most prevalent amputation level but transfemoral amputation had higher incidence for people with limb loss from road accidents, and people with limb loss due to disease were older. These observations are important as both transfemoral and older-aged groups experience particular rehabilitation challenges compared to the young, transtibial group. Conclusions: The study shows how standardised, routinely collected data across multiple clinics within a country can be used to characterise prosthetics service user populations and shows significant changes over time. This indicates the need to track client characteristics and provides evidence for adapting services according to population dynamics and changes in patient need.

The Impact of Limited Prosthetic Socket Documentation: A Researcher Perspective.

The majority of limb prostheses are socket mounted. For these devices, the socket is essential for adequate prosthetic suspension, comfort, and control. The socket is unique among prosthetic components as it is not usually mass-produced and must instead be custom-made for individual residual limbs by a prosthetist. The knowledge of what constitutes "good" socket fit is gained by expert prosthetists and technicians over years of experience, and rarely documented. The reliance on tacit knowledge makes it difficult to standardize the criteria for a well-fitting socket, leading to difficulties understanding the impact of socket fit. Despite its importance, the workflow for socket fitting is often overlooked in literature. Due to the customized nature of sockets, if information is provided in literature, generally only the type of socket and suspension mechanism is noted, with information regarding the fitting and manufacturing processes omitted. In this article, the concerns, issues and consequences arising from lack of upper and lower limb socket documentation are discussed from a researcher perspective, supported by healthcare professionals and socket fabrication specialists. Key changes are proposed to the way socket manufacturing and evaluation are documented to assist future research.

An investigation of proprioception illusion using a stimulator with feedback control.

It is possible to create illusions of limb movements using vibrations over the skin. If a muscle is vibrated it can feel as if the limb is moving while it remains still. These illusions have been studied for decades but it is not yet entirely clear how to create them effectively and repeatedly. In this study, three parameters were varied; the frequency of the vibration, the stimulation site and the arm position. A closed loop control of the vibration frequency was used to ensure a fixed frequency over the stimulation time and across the participants. The experiment included twenty-five able-bodied participants (mean age 32±7 years, 9 females). A hanging arm position was introduced with the aim to increase the success rate of illusions compared to other studies. Twenty-four participants felt an illusion across all scenarios. The results highlight that tactile feedback affects the illusion.

From outcome measurement to improving health outcomes after lower limb amputation-A narrative review exploring outcome measurement from a clinical practice perspective.

Outcome measurement is essential to understand the impact of clinical interventions and the performance of services. Despite national and professional body encouragement, and successful examples of system level outcome measurement within some health care settings, many barriers still exist preventing outcome measurement from becoming embedded in clinical practice. This paper presents a narrative review which aims to describe the state of the outcome measurement evidence base in prosthetic rehabilitation, as applied in clinical practice, with a view to identifying areas for future work aimed at making outcome measurement in prosthetic rehabilitation a meaningful reality. A literature search of four databases was undertaken, following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis principals appropriate to narrative reviews, and using the search terms outcome, measur*, tool, scale, instrument, prosthe*, amput* and limb loss. A total of 1116 papers were identified. Following screening 35 papers, focusing on four main themes, were included in the review. Themes were: 1) What outcome domains should be measured? 2) How can these outcome domains be measured? 3) What are the barriers to outcome measurement? and 4) What can be learnt from examples of ROM in prosthetic rehabilitation? Findings suggest that successful outcome measurement is multifaceted. Understanding and embedding value at every step appears to be key to success. Addressing the questions of 'what' outcome domains to measure and 'how' to measure them, may help establish consensus. Routine outcome measurement practice at the clinical level should ensure data collection is valuable to clinical practice, makes use of information technology solutions and has organisational engagement.

Non-oncological outcomes following limb salvage surgery in patients with knee sarcoma: a scoping review.

PURPOSE: Limb salvage surgery is a surgical procedure for tumour resection in bone and soft-tissue cancers. Guidelines aim to preserve as much function and tissue of the limb as possible. Surgical outcome data is routinely available as part of surgical reporting processes. What is less known are important non-oncological outcomes throughout recovery from both clinical and patient perspectives. The objective of this review was to explore non-oncological outcomes in patients diagnosed with sarcoma around the knee following limb salvage surgery. MATERIALS AND METHODS: A scoping review methodology was used, and results analysed using CASP checklists. RESULTS: Thirteen studies were included and following appraisal and synthesis, three themes emerged as providing important measures intrinsic to successful patient recovery: (1) physical function, (2) quality of life and, (3) gait and knee goniometry. Specifically, patients develop range of motion complications that alter gait patterns and patients often limit their post-operative participation in sport and leisure activities. CONCLUSIONS: This study has shown the importance of exploring confounding factors, adopting a holistic view of patient recovery beyond surgical outcomes, proposing evidence-based guidance to support and inform healthcare providers with clinical decision-making. This review highlights the paucity and lack of quality of research available, emphasising how under-represented this population is in the research literature.IMPLICATIONS FOR REHABILITATIONPatients having undergone LSS often have limited participation in sport and leisure activities.Patients can develop range of motion complications, such as flexion contracture or extension lag, which may affect the pattern of gait.Clinical consideration should be given to walking ability and gait patterns during the rehabilitation phase to prevent poor functional outcomes during recovery.Variation of treatment protocols, outcome measurement and rehabilitative care has been identified as important in predicting the outcomes in recovery from LSS procedures.

Patient and family experience of physical rehabilitation on the intensive care unit: a qualitative exploration.

OBJECTIVES: To explore the experience of physical rehabilitation in the intensive care unit (ICU), from the perspective of patients and relatives. DESIGN: Exploratory, qualitative study. PARTICIPANTS: Five former ICU patients and five family members of former ICU patients recruited from ICU support groups across the UK. INTERVENTIONS: Semi-structured interviews. MAIN OUTCOME MEASURES: Participants' experiences of physical rehabilitation in the ICU. Data were analysed using an iterative thematic approach. RESULTS: Four main themes were identified: Trust and Rapport, Necessity (of treatment), Psychological Benefit, and Goal Setting: Whose goal is it anyway? Despite a lack of enjoyment, patients tend to comply with physical rehabilitation, due in part to a positive patient-therapist relationship. There was agreement across participants that physical rehabilitation should be started as soon as possible after admission to ICU and exhaustion was highlighted as the biggest challenge to participation. In addition to aiding physical recovery, physical rehabilitation in the ICU may also provide psychological support for both patients and relatives. Finally, participants described a desire for therapists to direct goal setting in the early stages of recovery as they felt unable to engage in the process due to other priorities. CONCLUSIONS: The experience of physical rehabilitation on ICU may be influenced by key aspects of person-centred care. This study suggests that patients and relatives are keen for physical rehabilitation to start as soon as possible, which is a crucial new finding to support the practice of early rehabilitation in the ICU.

Expectations of rehabilitation following lower limb amputation: a qualitative study.

PURPOSE: To explore the expectations of patients about to undergo prosthetic rehabilitation following a lower limb amputation. DESIGN: Qualitative study using semi structured interviews. SETTING: Interviews were conducted at two district general hospitals. PARTICIPANTS: Eight patients who had undergone a major lower limb amputation due to vascular insufficiency were interviewed within two weeks of their amputation. All patients had been referred for prosthetic rehabilitation. RESULTS: Five key themes emerged from the interviews: uncertainty, expectations in relation to the rehabilitation service, personal challenges, the prosthesis and returning to normality. These findings illustrate how participants faced uncertainty both pre- and postoperatively and often looked towards established amputees for the provision of accurate information. CONCLUSIONS: As no previous research has specifically explored patients' expectations following an amputation, this study adds valuable insight into the patient experience. Patient expectations following lower limb amputation appeared to be vague and uninformed which may lead to uncertainty and passivity. It was found that patients did not know what to expect in relation to the rehabilitation process. They expected to return to a normal life following an amputation and this expectation appeared to be an important coping mechanism. Patient information and discussions should form an important part of the rehabilitation process before as well as during prosthetic rehabilitation, to help shape realistic expectations. This will allow patients to take a more active, informed role in the process. Psychoeducation interventions (talking) appears to be as important as "walking" within prosthetic rehabilitation services.