Dataset Information

Time-related changes in quality of life in persons with lower limb amputation or spinal cord injury: protocol for a systematic review.

ABSTRACT: BACKGROUND:Experiencing a lower limb amputation (LLA) or spinal cord injury (SCI) is a life-changing event, affecting physical and systemic function as well as having psychological and social impacts. However, the severity of the physical impairment and/or motor disability demonstrates a poor relationship with patient-reported quality of life, suggesting that other factors determine such outcomes. As such, holistic health-related quality of life (QoL) assessment is an important tool to monitor long-term outcomes. While there are some studies that have assessed the influence of variables such as age at time of injury occurrence and time since injury on changes in QoL, there are no systematic reviews which synthesise this evidence. METHODS/DESIGN:All follow-up study designs will be included, where data from multiple time points are presented. Searches will target both SCI and LLA populations where a validated measure of QoL has been used: Medical Outcome Study Short-Form 36/12 or the World Health Organization Quality of Life instruments 100 and BREF. Studies must include adult participants (??18?years at time of injury) and detail time since injury event and patient age. The primary objective is to establish the effects of participant age and time since injury on QoL scores. Secondary objectives include determining between-group effects (i.e. LLA vs. SCI). We will search PubMed, Embase and Web of Science databases, supplemented by hand-searching references within existing review articles and experimental studies. Reviewer pairs will conduct screening and quality assessment of included papers. Results will be stratified by impairment, QoL tool, age/time since injury and additional variables such as sex, race, comorbidity or disease aetiology, as appropriate. If sufficient high-quality data exist, a meta-analysis will be conducted. DISCUSSION:The results of this systematic review will summarise evidence of how QoL changes across the life course, relative to both patient age and time since injury, for both LLA and SCI populations. By enabling a direct comparison of different chronic conditions, disability-specific differences in QoL changes over the life course can be identified. SYSTEMATIC REVIEW REGISTRATION:PROSPERO CRD42018096633 .

SUBMITTER: Young M

PROVIDER: S-EPMC6676595 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Time-related changes in quality of life in persons with lower limb amputation or spinal cord injury: protocol for a systematic review.

Young Matthew M McKay Carly C Williams Sean S Rouse Peter P Bilzon James L J JLJ

Systematic reviews 20190802 1

<h4>Background</h4>Experiencing a lower limb amputation (LLA) or spinal cord injury (SCI) is a life-changing event, affecting physical and systemic function as well as having psychological and social impacts. However, the severity of the physical impairment and/or motor disability demonstrates a poor relationship with patient-reported quality of life, suggesting that other factors determine such outcomes. As such, holistic health-related quality of life (QoL) assessment is an important tool to m ...[more]

PMID: 31370881

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Project description:Purpose: To gather ideas from lower-limb prosthesis users and certified prosthetists regarding possible residual limb monitoring system features and data presentation. We also gathered information on the type of residual limb problems typically encountered, how they currently manage those problems, and their ideas for methods to better manage them.Materials and methods: Two focus groups were held; one with certified prosthetists and another with lower-limb prosthesis users. Open-ended questions were used in a moderated discussion that was audio recorded, transcribed, and assessed using applied thematic analysis.Results and conclusions: Seven individuals participated in each focus group. Prosthetists came from a mix of practice settings, while prosthesis users were diverse in level of amputation, aetiology, and years of experience using lower-limb prostheses. Residual limb problems reported by participants were consistent with those in the literature. Participants suggested better managing residual limb problems through improved education, better detection of residual limb problems, and using sensor-based information to improve prosthetic technology. Participants favoured short-term use of a possible residual limb monitoring systems to troubleshoot residual limb problems, with temperature and pressure the most frequently mentioned measurements. Participants described that an ideal residual limb monitoring system would be lightweight, not interfere with prosthesis function, and result in benefits with regard to prosthetic care and socket function that outweighed inconveniences or concerns regarding system use. A potential positive of system use included having objective data for reimbursement justification, although it was pointed out that the residual limb monitoring system itself also needed to be reimbursable.Implications for RehabilitationStakeholders suggested better managing residual limb problems through improved education, better detection of residual limb problems, and using sensor-based information to improve prosthetic technology.Stakeholders favored short-term use of a possible system to troubleshoot residual limb problems, with temperature and pressure the most frequently mentioned measurements.Stakeholders described that an ideal residual limb monitoring system would be lightweight, not interfere with prosthesis function, and result in benefits with regard to prosthetic care and socket function that outweighs any inconveniences or concerns regarding system use.Stakeholders indicated that a potential positive of system use included having objective data for reimbursement justification, although it was pointed out that the residual limb monitoring system itself also needed to be reimbursable.

Project description:BackgroundMaintaining a healthy lifestyle is important for wheelchair users' well-being, as it can have a major impact on their daily functioning. Mobile health (mHealth) apps can support a healthy lifestyle; however, these apps are not necessarily suitable for wheelchair users with spinal cord injury or lower limb amputation. Therefore, a new mHealth app (WHEELS) was developed to promote a healthy lifestyle for this population.ObjectiveThe objectives of this study were to develop the WHEELS mHealth app, and explore its usability, feasibility, and effectiveness.MethodsThe WHEELS app was developed using the intervention mapping framework. Intervention goals were determined based on a needs assessment, after which behavior change strategies were selected to achieve these goals. These were applied in an app that was pretested on ease of use and satisfaction, followed by minor adjustments. Subsequently, a 12-week pre-post pilot study was performed to explore usability, feasibility, and effectiveness of the app. Participants received either a remote-guided or stand-alone intervention. Responses to semistructured interviews were analyzed using content analysis, and questionnaires (System Usability Score [SUS], and Usefulness, Satisfaction, and Ease) were administered to investigate usability and feasibility. Effectiveness was determined by measuring outcomes on physical activity, nutrition, sleep quality (Pittsburgh Sleep Quality Index), body composition, and other secondary outcomes pre and post intervention, and by calculating effect sizes (Hedges g).ResultsSixteen behavior change strategies were built into an app to change the physical activity, dietary, sleep, and relaxation behaviors of wheelchair users. Of the 21 participants included in the pilot study, 14 participants completed the study. The interviews and questionnaires showed a varied user experience. Participants scored a mean of 58.6 (SD 25.2) on the SUS questionnaire, 5.4 (SD 3.1) on ease of use, 5.2 (SD 3.1) on satisfaction, and 5.9 (3.7) on ease of learning. Positive developments in body composition were found on waist circumference (P=.02, g=0.76), fat mass percentage (P=.004, g=0.97), and fat-free mass percentage (P=.004, g=0.97). Positive trends were found in body mass (P=.09, g=0.49), BMI (P=.07, g=0.53), daily grams of fat consumed (P=.07, g=0.56), and sleep quality score (P=.06, g=0.57).ConclusionsThe WHEELS mHealth app was successfully developed. The interview outcomes and usability scores are reasonable. Although there is room for improvement, the current app showed promising results and seems feasible to deploy on a larger scale.

Dataset Information

Time-related changes in quality of life in persons with lower limb amputation or spinal cord injury: protocol for a systematic review.

Publications

Time-related changes in quality of life in persons with lower limb amputation or spinal cord injury: protocol for a systematic review.

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