To Örebro University

Phantom limb pain (PLP) represents a significant challenge after amputation. This study investigated the use of phantom motor execution (PME) and phantom motor imagery (PMI) facilitated by extended reality (XR) for the treatment of PLP. Both treatments used XR, but PME involved overt execution of phantom movements, relying on the decoding of motor intent using machine learning to enable real-time control in XR. In contrast, PMI involved mental rehearsal of phantom movements guided by XR. The study hypothesized that PME would be superior to PMI. A multicenter, double-blind, randomized controlled trial was conducted in 9 outpatient clinics across 7 countries. Eighty-one participants with PLP were randomly assigned to PME or PMI training. The primary outcome was the change in PLP, measured by the Pain Rating Index, from baseline to treatment cessation. Secondary outcomes included various aspects related to PLP, such as the rate of clinically meaningful reduction in pain (CMRP; >50% pain decrease). No evidence was found for superiority of overt execution (PME) over imagery (PMI) using XR. PLP decreased by 64.5% and 68.2% in PME and PMI groups, respectively. Thirty-seven PME participants (71%) and 19 PMI participants (68%) experienced CMRP. Positive changes were recorded in all other outcomes, without group differences. Pain reduction for PME was larger than previously reported. Despite our initial hypothesis not being confirmed, PME and PMI, aided by XR, are likely to offer meaningful PLP relief to most patients. These findings merit consideration of these therapies as viable treatment options and alternatives to pharmacological treatments.

BACKGROUND: Informal caregivers are an essential part of health and social care systems worldwide. As such, they may need professional support. AIM: The aim of this study was to describe informal caregivers' experiences and need for support from a tailored primary health care (PHC) unit.

METHODS: This is a qualitative descriptive study using data collected from five semi-structured focus group discussions with a purposeful sample of 16 informal caregivers of older relatives. Respondents were recruited from a tailored PHC unit for people aged 75 years or older in a region in central Sweden. The data were analysed by qualitative content analysis with an abductive approach, based on the principles of the patient- and family-centred care framework.

RESULTS: The overarching theme was 'Striving for partnership'. The findings indicate that informal caregivers to some extent felt supported by the healthcare professionals. However, the caregivers expressed a need to be further acknowledged by the professionals in order to participate in the care of their older relatives in the way they wanted. Moreover, insufficient information regarding the older adult's health condition and care provided by the professionals had a negative impact on the caregiver's participation in care.

CONCLUSIONS: Informal caregivers have unmet needs for support and strive for a partnership with the PHC professionals. PHC professionals should be more attentive and invite informal caregivers to participate in the care of the older adult in order to meet their support needs and build an equal partnership. The patient- and family-centred care framework may be of guidance when providing care for older adults in a PHC context.

PURPOSE: Phantom limb pain (PLP) is a condition that greatly diminishes quality of life. Phantom motor execution (PME), enabled by myoelectric pattern recognition combined with virtual and augmented reality, is a novel treatment for PLP. Here we, aimed to describe patients' experiences of this treatment.

MATERIAL AND METHODS: Qualitative, using semi-structured interviews one month after completed PME treatment. Twenty-one Swedish and Dutch patients (mean age 57, 16 males, 16 lower limb amputations) participated. The analysis followed the framework approach.

RESULTS: The main themes were 1) treatment effects on the perception of the phantom limb, 2) living with PLP before and after treatment, and 3) facilitators and barriers to treatment. Most participants learned to control their phantom limb, perceived it more positively and as more complete. This control over the phantom limb became a tool for managing PLP. Most participants' outlook on life and energy levels improved after treatment. Being mentally focused during treatment was important. Therapists were pivotal to the success of the treatment.

CONCLUSION: Controlling the phantom limb improved their perception of it and pain management, self-agency, and quality of life. The therapists' role was invaluable. We suggest training for patients in phantom limb control before and after amputation.

BACKGROUND: Swedish social policy enables ageing in place with support from home-based care services despite high age and/or declining health.

AIM: This study aims to describe the daily life experiences behind the decision to apply for a nursing home placement in older adults ageing in place.

MATERIALS AND METHODS: A qualitative design was chosen, and 11 semi-structured interviews were conducted and analysed using inductive qualitative content analysis.

RESULTS: The participants described a feeling of dependence in which they had to ignore their personal privacy when receiving home-based care. They reached a turning point when ageing in place was, for several reasons, no longer considered an acceptable option. This influenced their choice to apply to a nursing home where they expected that they could maintain control over their lives.

DISCUSSION AND CONCLUSION: The results indicate that when enhancing ageing in place it is important to enable older adults to receive support to maintain autonomy in daily activities and to have the opportunity to age in the right place.

Although recent technological developments in the field of bionic upper limb prostheses, their rejection rate remains excessively high. The reasons are diverse (e.g. lack of functionality, control complexity, and comfortability) and most of these are reported only through self-rated questionnaires. Indeed, there is no quantitative evaluation of the extent to which a novel prosthetic solution can effectively address users' needs compared to other technologies. This manuscript discusses the challenges and limitations of current upper limb prosthetic devices and evaluates their functionality through a standard functional assessment, the Assessment of Capacity for Myoelectric Control (ACMC). To include a good representation of technologies, the authors collect information from participants in the Cybathlon Powered Arm Prostheses Race 2016 and 2020. The article analyzes 7 hour and 41 min of video footage to evaluate the performance of different prosthetic devices in various tasks inspired by activities of daily living (ADL). The results show that commercially-available rigid hands perform well in dexterous grasping, while body-powered solutions are more reliable and convenient for competitive environments. The article also highlights the importance of wrist design and control modality for successful execution of ADL. Moreover, we discuss the limitations of the evaluation methodology and suggest improvements for future assessments. With regard to future development, this work highlights the need for research in intuitive control of multiple degrees of freedom, adaptive solutions, and the integration of sensory feedback.

PURPOSE: Interpersonal processes, including therapeutic alliance, may modulate the impact of interventions on pain experience. However, the role of interpersonal context on the effects of technology-enhanced interventions remains underexplored. This study elicited therapists' perspectives on how a novel rehabilitative process, involving Phantom Motor Execution (PME), may impact phantom limb pain. The mediating role of therapeutic alliance, and the way PME influenced its formation, was investigated.

METHODS: A qualitative descriptive design, using a framework method, was used to explore therapists' (n=11) experiences of delivering PME treatment. Semi-structured online-based interviews were conducted.

RESULTS: A 3-way interaction between therapist, patient, and the PME device was an overarching construct tying four themes together. It formed the context for change in phantom limb experience. The perceived therapeutic effects (theme 1) extended beyond those initially hypothesised and highlighted the mediating role of the key actors and context (theme 2). The therapeutic relationship was perceived as a transformative journey (theme 3), creating an opportunity for communication, collaboration, and bonding. It was seen as a cause and a consequence of therapeutic effects. Future directions, including the role of expertise-informed adaptations and enabling aspects of customised solutions, were indicated (theme 4).

CONCLUSION: This study pointed to intrapersonal, interpersonal, and contextual factors that should be considered in clinical implementation of novel rehabilitative tools. The results demonstrated that therapists have unique insights and a crucial role in facilitating PME treatment. The study highlighted the need to consider the biopsychosocial model of pain in designing, evaluating, and implementing technology-supported interventions.

BACKGROUND AND OBJECTIVE: Mapping algorithms can be used for estimating quality-adjusted life years (QALYs) when studies apply non-preference-based instruments. In this study, we estimate a regression-based algorithm for mapping between the World Health Organization Disability Assessment Schedule (WHODAS 2.0) and the preference-based instrument SF-6D to obtain preference estimates usable in health economic evaluations. This was done separately for the working and non-working populations, as WHODAS 2.0 discriminates between these groups when estimating scores.

METHODS: Using a dataset including 2258 participants from the general Swedish population, we estimated the statistical relationship between SF-6D and WHODAS 2.0. We applied three regression methods, i.e., ordinary least squares (OLS), generalized linear models (GLM), and Tobit, in mapping onto SF-6D from WHODAS 2.0 at the overall-score and domain levels. Root mean squared error (RMSE) and mean absolute error (MAE) were used for validation of the models; R2 was used to assess model fit.

RESULTS: The best-performing models for both the working and non-working populations were GLM models with RMSE ranging from 0.084 to 0.088, MAE ranging from 0.068 to 0.071, and R2 ranging from 0.503 to 0.608. When mapping from the WHODAS 2.0 overall score, the preferred model also included sex for both the working and non-working populations. When mapping from the WHODAS 2.0 domain level, the preferred model for the working population included the domains mobility, household activities, work/study activities, and sex. For the non-working population, the domain-level model included the domains mobility, household activities, participation, and education.

CONCLUSIONS: It is possible to apply the derived mapping algorithms for health economic evaluations in studies using WHODAS 2.0. As conceptual overlap is incomplete, we recommend using the domain-based algorithms over the overall score. Different algorithms must be applied depending on whether the population is working or non-working, due to the characteristics of WHODAS 2.0.

BACKGROUND: The World Health Organization Disability Assessment Schedule (WHODAS 2.0) is a generic questionnaire that captures health and disability-related functioning information corresponding to six major life domains: Cognition, Mobility, Self-care, Getting along, Life activities, and Participation. The WHODAS 2.0 is used in a wide range of international clinical and research settings. A psychometric evaluation of WHODAS 2.0, Swedish version, in the general population is lacking, together with national reference data to enable interpretation and comparison. This study aims to evaluate the psychometric properties of the Swedish 36-item version of WHODAS 2.0 and describe the prevalence of disability in a Swedish general population.

METHODS: A cross-sectional survey was performed. Internal consistency reliability was assessed with Cronbach's alpha. The construct validity was evaluated with item-total correlation, Pearson's correlation between the WHODAS 2.0 domains and the RAND-36 subscales, analysis of known groups by one-way ANOVA, and analysis of the factor structure by confirmatory factor analysis.

RESULTS: Three thousand four hundred and eighty two adults aged 19-103 years (response rate 43%) participated. Significantly higher degrees of disability were reported by the oldest age group (≥ 80 years), adults with a low level of education, and those on sick leave. Cronbach's alpha was from 0.84 to 0.95 for the domain scores and 0.97 for the total score. The item-scale convergent validity was satisfactory, and the item-scale discriminant validity was acceptable except for the item about sexual activity. The data partially supported the factor structure, with borderline fit indices.

CONCLUSION: The psychometric properties of the self-administered Swedish 36-item version of the WHODAS 2.0 are comparable to those of other language versions of the instrument. Data of the prevalence of disability in Swedish general population enables normative comparisons of WHODAS 2.0 scores of individuals and groups within clinical practice. The instrument has certain limitations that could be improved on in a future revision. The test-retest reliability and responsiveness of the Swedish version of WHODAS 2.0 for different somatic patient populations remain to be evaluated.

Introduction To support clinicians who treat children with upper-limb differences, we must first understand how these children are treated around the world.

Study Design A descriptive survey was carried out in this study.

Objectives The aim was to describe how treatment for children with upper-limb difference is provided in different parts of the world.

Methods A web-based survey was used to gather data. The survey was shared on the Handsmart website, through providers and members using snowball sampling.

Results Sixty-eight respondents from 18 countries, with most being occupational therapists and prosthetists, participated. All respondents reported that they provide prosthetic treatment and most fit a passive prosthesis before 1 year of age.

Respondents from 13 countries reported having governmental funding for the provision of care for people with upper-limb loss. Intervention is guided by the presentation of the limb as well as availability of funding and other resources. In 12 countries, no treatment other than fitting of prostheses is provided for the children. The children who do not receive a prosthesis continue to see an occupational or physical therapist for other treatment (other devices, follow-up). Respondents stated that they would like to see clear treatment guidelines used by multidisciplinary teams to fit children and that treatment should include regular follow-up.

Conclusions Children are treated differently in various parts of the world based on different funding, family support, and therapy resources. Further studies should encompass a geographically representative sample of children’s clinics.

Clinical Relevance This study provides information regarding treatment practices for children with upper-limb loss/difference in various parts of the world; prosthetic treatment is common for children, although ages for fitting vary among clinics and countries. Results will contribute by supporting clinicians to provide better treatment for children with upper-limb loss/difference.

BACKGROUND: Validity of the Ugandan version of the Pediatric Evaluation of Disability Inventory (PEDI-UG) was previously investigated on typically developing children. This study aimed to investigate the validity, test-retest reliability and minimal detectable change (MDC) of the PEDI-UG in children and youth (C&Y) with cerebral palsy (CP).

METHOD: A cross-sectional study design with 118 C&Y with CP (44.7% girls) aged 10 months-22.5 years were included in the study; 37 of them completed the PEDI-UG twice to investigate test-retest reliability, determined by calculating the intraclass correlation coefficient (ICC). Additionally, data from 249 typically developing children were used for differential item functioning (DIF) analysis. The validity of the PEDI-UG was investigated by Rasch analysis. The Kruskal-Wallis test and Spearman's correlation coefficient were calculated to investigate associations between PEDI-UG scores and external classification systems.

RESULTS: The principal component analysis of residuals indicated unidimensionality in all domains. The ICC values were excellent (0.98-0.99), and the MDCs were less than 6 and 13 (on a 0-100 scale) for the functional skills and caregiver assistance parts, respectively. The four-category caregiver assistance rating scale fulfilled the criteria for the analysis of rating scale functioning. In total, 78 of 189 items in the functional skills domain and two items in the caregiver assistance domain demonstrated DIF between C&Y with CP and TD children. The Kruskal-Wallis test (p<0.05) and Spearman's correlation (coefficients of -0.93 to -0.78) supported the validity of PEDI-UG.

CONCLUSION: The current diagnose-specific version of PEDI-UG demonstrates evidence for validity as a measure of ability in C&Y with CP in Uganda and other similar settings, being a promising tool for use in clinical practice and research. Conversion tables and MDC values are provided to facilitate clinical adoption of the measure.