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Backgrounds: Assessing quality of life (QoL) using a well-developed and validated questionnaire is an essential part of a breast cancer-related lymphedema (BCRL) treatment. However, a QoL questionnaire with the best psychometric properties is so far unknown. The aim of this systematic review is to evaluate the psychometric properties of the questionnaires measuring the QoL of patients with BCRL. Methods: A thorough search was performed to identify published studies in electronic databases such as Medline (via Ovid), EBSCOhost, PubMed, Scopus, and Web of Science, on 8 February 2022, by using search terms as follows: ‘quality of life’; ‘breast cancer’; ‘upper limb’; ‘lymphedema’; ‘questionnaire’; and ‘measurement properties.’ Two reviewers conducted article selection, data extraction, and quality assessment independently. The third reviewer helped solve any possible disagreements between the two reviewers. The COSMIN checklist and manual were used to assess the quality of included studies. Results: A total of nineteen articles with nine questionnaires were included and assessed using the COSMIN Risk of Bias checklist. Most studies only assessed content validity, structural validity, internal consistency, reliability, and construct validity. Lymph-ICF-UL showed the most ‘sufficient’ and ‘high’ quality of evidence ratings for its measurement properties. Conclusion: The most appropriate questionnaire for use based on our assessment is Lymph-ICF-UL.

Virtual reality (VR) games has the potential to improve patient outcomes in stroke rehabilitation. However, there is limited information on VR games as an adjunct to standard physiotherapy in improving upper limb function. This study involved 36 participants in both experimental (n = 18) and control (n = 18) groups with a mean age (SD) of 57 (8.20) and 63 (10.54) years, respectively. Outcome measures were the Fugl-Meyer assessment for upper extremities (FMA-UE), Wolf motor function test (WMFT), intrinsic motivation inventory (IMI), Lawton of instrumental activities of daily living (IADL), and stroke impact scale (SIS) assessed at pre-post intervention. The experimental group had 0.5 h of upper limb (UL) VR games with 1.5 h of standard physiotherapy, and the control group received 2 h of standard physiotherapy. The intervention for both groups was performed once a week for eight consecutive weeks. The results showed a significant time–group interaction effect for IMI (p = 0.001), Lawton IADL (p = 0.01) and SIS domain of communication (p = 0.03). A significant time effect was found in FMA-UE (p = 0.001), WMFT (p = 0.001), Lawton IADL (p = 0.01), and SIS domains; strength, ADL and stroke recovery (p < 0.05). These results indicated an improvement in UL motor ability, sensory function, instrumental ADL, and quality of life in both groups after eight weeks of intervention. However, no significant (p > 0.05) group effect on all the outcome measures was demonstrated. Thus, replacing a portion of standard physiotherapy time with VR games was equally effective in improving UL function and general health compared to receiving only standard physiotherapy among stroke survivors.

Parkinson disease (PD), a neurodegenerative disorder that progresses over time, is steadily growing in number and prevalence worldwide. PD in Malaysia is expected to increase five-fold by 2040 from the existing estimate of 20,000 patients in 2018. Treatment program of PD in Malaysia is rather unstructured, and there is no known comprehensive PD family caregiver training program available to date. To ensure the quality of a program, it must be tested for feasibility, effectiveness and sustainability. This paper describes the protocol of a study that evaluates the effectiveness of a structured, comprehensive training program of family caregiver to persons with PD in comparison to usual care. A total of 60 pairs of persons with PD of stage II and III, and their primary family caregiver will be recruited and allocated into either an experimental or a control group for 12 weeks of intervention. The experimental group will undergo initial training from multi-disciplinary healthcare providers and will be given a physical module containing weekly tasks that must be practised at home. While the control group will receive a usual care. Both groups will be assessed in terms of physical functions, functional mobility, quality of life (QoL), caregiver burden and knowledge using standardised assessment tools namely Movement Disorder Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS), Timed Up and Go (TUG) test, Parkinson's Disease Questionnaire (PDQ-39), European Quality of Life five-dimensions (EQ-5D), Malay version of Zarit Burden Interview (MZBI) and Knowledge of Parkinson Disease Questionnaire (KPDQ). In addition, the feasibility and sustainability of the interventions will be evaluated, alongside its cost-effectiveness based on the average and incremental cost effectiveness ratio. All data will be analysed using descriptive and inferential statistics, particularly mixed model ANOVA. There is a significant gap in the literature pertaining family caregiver training programs for people with PD. Documented programs are lacking in term of comprehensiveness of content, application approach and the measurement of training outcomes including the program cost-effectiveness. The feasibility and effectiveness of such training program in a Malaysian setting also requires investigation due to differences in living environment, support system and population's perception. This study will assist to fulfil the existing literature gap and demonstrate the potential benefit of caregiver involvement in mediating the care and therapy for PD in the home setting. Optimum knowledge and skills gained through the training are expected to enhance the confidence and ability of the family caregivers and may possibly reduce their perceived caregiving burden. The protocol of this study is registered in the Australian-New Zealand Clinical Trial Registry (ANZCTR) with a registration number ACTRN12623000336684.

IntroductionEmulating the vast inclusion of advanced technology in everyday practice, the medical world is no exception to its implementation, in particular, virtual reality (VR). Initially, its introduction as a therapy was accompanied by high aspirations and expectations for its growth and potential. Motivation is said to be the most associated benefit; although it is imperative to note that there exists a paucity of research that specifically quantifies its tangible impact on cerebral palsy (CP). There has yet to be a systematic review of the instruments used to precisely measure motivation and examine its association with the benefits of VR for children with cerebral palsy.Methods and analysisThis review will evaluate comparative studies that used VR therapy as part of interventions for children with CP. Qualitative studies, single-case studies, systematic reviews, literature reviews and guideline audits will be excluded. This review will be conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA-P) guidelines. The methodological protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO). The following electronic databases will be used to access related studies published between January 2012 and December 2023: MEDLINE (via EBSCOhost), Web of Science, Scopus, PubMed and Cochrane. The Peer Review of Electronic Search Strategies checklist will be employed to develop database search strategies.Ethics and disseminationThis review does not require ethical approval as it uses secondary data. The findings will be published in a scientific journal. We intend to contribute to the expansion of knowledge concerning the motivational implications of VR on children with CP.PROSPERO registration numberInternational Prospective Register of Systematic Reviews (identification number CRD42023401079).

The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child’s condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.

Background Lack of intersectoral collaboration within public health sectors compound efforts to promote effective multidisciplinary post stroke care after discharge following acute phase. A coordinated, primary care-led care pathway to manage post stroke patients residing at home in the community was designed by an expert panel of specialist stroke care providers to help overcome fragmented post stroke care in areas where access is limited or lacking. Methods Expert panel discussions comprising Family Medicine Specialists, Neurologists, Rehabilitation Physicians and Therapists, and Nurse Managers from Ministry of Health and acadaemia were conducted. In Phase One, experts chartered current care processes in public healthcare facilities, from acute stroke till discharge and also patients who presented late with stroke symptoms to public primary care health centres. In Phase Two, modified Delphi technique was employed to obtain consensus on recommendations, based on current evidence and best care practices. Care algorithms were designed around existing work schedules at public health centres. Results Indication for patients eligible for monitoring by primary care at public health centres were identified. Gaps in transfer of care occurred either at post discharge from acute care or primary care patients diagnosed at or beyond subacute phase at health centres. Essential information required during transfer of care from tertiary care to primary care providers was identified. Care algorithms including appropriate tools were summarised to guide primary care teams to identify patients requiring further multidisciplinary interventions. Shared care approaches with Specialist Stroke care team were outlined. Components of the iCaPPS were developed simultaneously: (i) iCaPPS-Rehab© for rehabilitation of stroke patients at community level (ii) iCaPPS-Swallow© guided the primary care team to screen and manage stroke related swallowing problems. Conclusion Coordinated post stroke care monitoring service for patients at community level is achievable using the iCaPPS and its components as a guide. The iCaPPS may be used for post stroke care monitoring of patients in similar fragmented healthcare delivery systems or areas with limited access to specialist stroke care services. Trial registration No.: ACTRN12616001322426 (Registration Date: 21st September 2016).

Although exercise is proven as an effective strategy to combat post-stroke complications and the risk of stroke recurrence, many stroke survivors fail to engage in this activity following rehabilitation. In this study, we assessed the feasibility and usefulness of a low-frequency group exercise to determine its suitability as an approach to facilitate exercise engagement among stroke survivors. Forty-one stroke survivors, mean (SD) age 59.34 (10.02) years, mean time post-stroke 17.13 (17.58) months, completed a 90 minute, once per week, group exercise supervised by therapists for 12 weeks. The exercise outcomes were measured using standardized clinical tests. We observed improvement in the group’s physical performance; balance score by 3 units (Z = −3.88, p < 0.001), speed of repetitive sit to stand by 3.4 s (Z = −4.69, p < 0.001), and walking speed by 8.22 m/min (Z = −3.25, p < 0.001). Scores of seven out of 14 Berg’s balance scale items increased significantly, indicating better balance ability among the survivors. In conclusion, a 12-week, once per week group exercise session seems feasible and sufficient to improve the physical performance of community dwelling stroke survivors. This exercise arrangement may be offered to stroke survivors to facilitate exercise practice following rehabilitation.

Background The delivery of post stroke care is fragmented even in advanced public healthcare systems, globally. Primary care teams are entrusted to provide longer term care for stroke survivors in most developing countries. The integrated Care Pathway for Post Stroke patients (iCaPPS © ) was designed to guide primary care teams to incorporate further rehabilitation and regular screening for post stroke complications among patients residing at home in communities, using the shared-care approach, especially in areas with limited access to specialist stroke care services. The iCaPPS © addressed coordination of rehabilitation and screening for post stroke complications which were absent in the current conventional care of patients managed at public primary care healthcentres. This study aimed to evaluate the cost effectiveness and impact of iCaPPS © on quality-adjusted- life-years (QALY) compared with current conventional monitoring at public primary care healthcentres. Methods A pragmatic healthcentre-based cluster randomised controlled trial-within trial on 151 post stroke patients from 10 public primary care facilities in Peninsular Malaysia was conducted to evaluate QALY of patients managed with iCaPPS © ( n  = 86) vs conventional care ( n  = 65) for 6 months. Costs from societal perspective were calculated, using combination of top down and activity-based costing methods. The 5-level EQ5D (EQ-5D-5 L) was used to calculate health state utility scores. Cost per QALY and incremental cost effectiveness ratio (ICER) were determined. Differences within groups were determined using Mann-Whitney tests. Results Total costs for 6 months treatment with iCaPPS © was MYR790.34, while conventional care cost MYR527.22. Median QALY for iCaPPS © was 0.55 (0,1.65) compared to conventional care 0.32 (0, 0.73) (z = − 0.21, p  = 0.84). Cost per QALY for iCaPPS © was MYR1436.98, conventional care was MYR1647.56. The ICER was MYR1144.00, equivalent to 3.7% of per capita GDP (2012 prices). Conclusions Management of post stroke patients in the community using iCaPPS © costs less per QALY compared to current conventional care and is very cost effective. Trial registration Trial Registration number ACTRN12616001322426 . Registered 21 September 2016. (Retrospectively registered).

The reintegration of stroke survivors into society is significantly and independently influenced by the survivors' physical disabilities and emotional disturbances. In this study, we examined the relationships between stroke survivors' emotional disturbances, physical functioning, perceived control, and health-related quality of life (QOL) during the early recovery phase, aiming to determine the predictive value of these variables for QOL outcomes. This cross-sectional study involved 66 acute stroke patients attending the outpatient rehabilitation unit of a teaching hospital in Kuala Lumpur, Malaysia. The variables of interest we measures using the Hospital Anxiety and Depression Scale (HADS) for anxiety and depression, the Euroqol-5-dimensions-5-levels (EQ-5D-5L) for QOL, the Modified Barthel Index (MBI) for physical functioning, and the Recovery Locus of Control (RLOC) scale for perceived control. Pearson's correlation and regression analyses were performed to determine the ability of the variables to predict stroke survivors' QOL. Most of the patients were between 50 and 59 years old and were in the early stages of poststroke recovery. Although no significant gender differences were found in overall HADS scores (7.69 vs. 7.52), emotional disturbances, particularly anxiety disorders, were more prevalent among males, with 57% reporting symptoms compared to 48% of females. Health-related QOL was significantly correlated with physical functioning (r = -.439, p < .001), anxiety (r = .292, p < .001), and internal locus of control (r = -.224, p < .001). The study also revealed that QOL could be predicted by HADS (F = 4.03, p < .001), RLOC (F = 2.86, p < .001), and MBI (F = 7.46, p < .001) scores. In addition to physical disabilities, perceived control and emotional disturbances had a substantial influence on stroke survivors' QOL outcomes. Addressing these psychosocial and behavioural factors within treatment plans is crucial for improving stroke survivors' poststroke recovery and enhancing their QOL.

Spinal cord injury (SCI) is a devastating condition that often leads to significant impairments in physical function, leading to disability and mental health disorders. Hence, understanding the prevalence of SCI and the relationship between physical activity and mental health in individuals with SCI is crucial for informing rehabilitation strategies and optimizing outcomes. This study aims to comprehensively analyze existing research on the link between physical activity and mental health and identify the level of physical activity and mental health status, the barriers to physical activity, and SCI's impacts on psychological well-being in individuals with SCI. An electronic search strategy will be used to identify prevalence studies published since 1993 in health-related databases such as PubMed, MEDLINE, COCHRANE Library, and Wiley Library using the following query: \"Spinal Cord Injury\" OR \"Paraplegia\" OR \"Tetraplegia\" AND \"Physical Activity\" OR \"Exercise\" AND \"Mental Health\" OR \"Mental Illness\" OR \"Mental Disorder.\" Bibliographies of primary studies and review articles meeting the inclusion criteria will be searched manually to identify further eligible studies. The risk of bias in the included studies will be appraised using the Joanna Briggs Institute checklist for prevalence studies by 2 review authors. Any disagreement will be resolved by reaching a consensus. Funding was received in October 2023, data collection will commence in July 2024, and the results are expected by 2025. We will summarize the selection of the eligible studies using a flowchart. The data from the studies will be extracted and tabulated. This scoping review will be published in a peer-reviewed journal in accordance with PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. This scoping review underscores the complex relationship between physical activity and mental health among individuals with SCI, highlighting the level of physical activity and mental health status, barriers to physical activity engagement, and psychological implications. Understanding these dynamics is crucial in devising tailored interventions aimed at enhancing mental well-being. This synthesis of evidence emphasizes the need for personalized strategies to promote physical activity, addressing unique challenges faced by this population to foster improved mental health outcomes and overall quality of life. Open Science Framework osf.io/ugx7d; https://osf.io/ugx7d/. PRR1-10.2196/56081.