Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

BACKGROUND: Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD. OBJECTIVE: The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology. METHOD: Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach. RESULTS: Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood. CONCLUSION: Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care. PATIENT OR PUBLIC CONTRIBUTION: This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.

Effects of robot-assisted upper limb training combined with functional electrical stimulation in stroke patients: study protocol for a randomized controlled trial.

INTRODUCTION: About 17-80% stroke survivors experience the deficit of upper limb function, which strongly influences their independence and quality of life. Robot-assisted training and functional electrical stimulation are commonly used interventions in the rehabilitation of hemiplegia upper extremities, while the effect of their combination remains unclear. The aim of this trial is to explore the effect of robot-assisted upper limb training combined with functional electrical stimulation, in terms of neuromuscular rehabilitation, compared with robot-assisted upper limb training alone. METHODS: Individuals (n = 60) with the first onset of stroke (more than 1 week and less than 1 year after stroke onset) will be considered in the recruitment of this single-blinded, three-arm randomized controlled trial. Participants will be allocated into three groups (robot-assisted training combined with functional electrical stimulation group, robot-assisted training group, and conventional rehabilitation therapies group) with a ratio of 1:1:1. All interventions will be executed for 45 min per session, one session per day, 5 sessions per week for 6 weeks. The neuromuscular function of the upper limb (Fugl-Meyer Assessment of upper extremity), ability of daily life (modified Barthel Index), pain (visual analogue scale), and quality of life (EQ-5D-5L) will be assessed at the baseline, at the end of this trial and after 3 months follow-up. Two-way repeated measures analysis of variance will be used to compare the outcomes if the data are normally distributed. Simple effects tests will be used for the further exploration of interaction effects by time and group. Scheirer-Ray-Hare test will be used if the data are not satisfied with normal distribution. DISCUSSION: We expect this three-arm randomized controlled trial to explore the effectiveness of robot-assisted training combined with functional electrical stimulation in improving post-stroke upper limb function compared with robot-assisted training alone. TRIAL REGISTRATION: Effect of upper limb robot on improving upper limb function after stroke, identifier: ChiCTR2300073279. Registered on 5 July 2023.

The association between HIV infection, disability and lifestyle activity among middle-aged and older adults: an analytical cross-sectional study in Ivory Coast (the VIRAGE study).

INTRODUCTION: People living with HIV (PLWH) live longer and face new health challenges resulting from the confluence of chronic HIV infection and the natural effect of aging and comorbidities. However, there is a dearth of information on the long-term impact of HIV infection on the health and wellbeing of PLWH in sub-Saharan Africa. This research aimed to fill this gap by reporting on physical, functional and social outcomes among PLWH treated at a referral center in Abidjan, Ivory Coast, and comparing them with those of a control group. METHODS: Body composition, functional capacity, sarcopenia, limitations in daily activities and social participation were assessed among 300 PLWH (aged ≥ 30 years) and 200 uninfected adults of similar age and sex. The associations between these outcomes and participants' socioeconomic characteristics, HIV history and physical activity level were assessed using generalized additive models adjusted for age and sex. RESULTS: The median age was 51 years, and the median antiretroviral therapy duration was 15 years. Compared to controls, PLWH reported higher levels of physical activity (p < 0.0001). They had a lower muscle index (adjusted p < 0.0001) and grip strength (adjusted p < 0.0001) but achieved similar performance on the 6-min walk test (6MWT, p = 0.2). Among PLWH, physical activity level was positively associated with better performance in the 6MWT (p = 0.006) and greater hand grip strength (p = 0.04). The difference in physical performance according to the level of physical activity appeared mainly after the age of 60. PLWH reported similar rates of activity limitations (p = 0.8), lower depression levels and greater scores for social functioning (p = 0.02). CONCLUSION: In this study, PLWH achieved high levels of physical activity, which may explain why they maintained good physical performance and social functioning despite having a higher risk of sarcopenia. These results have important implications for resource-limited health systems and show avenues for chronic care models. TRIAL REGISTRATION: This study was registered on the ClinicalTrials.gov website (NCT05199831, first registration the 20/01/2022).

Sit-to-stand performance in children with cerebral palsy: a population-based cross-sectional study.

BACKGROUND: Sit-to-stand (STS) is one of the most commonly performed functional movements in a child's daily life that enables the child to perform functional activities such as independent transfer and to initiate walking and self-care. Children with cerebral palsy (CP) often have reduced STS ability. The aim of this study was to describe STS performance in a national based total population of children with CP and its association with age, sex, Gross Motor Function Classification System (GMFCS) level, and CP subtype. METHODS: This cross-sectional study included 4,250 children (2,503 boys, 1,747 girls) aged 1-18 years from the Swedish Cerebral Palsy Follow-Up Program (CPUP). STS performance was classified depending on the independence or need for support into "without support," "with support," or "unable." "With support" included external support from, e.g., walls and furniture. Physical assistance from another person was classified as "unable" (dependent). Ordinal and binary logistic regression analyses were used to identify associations between STS and age, GMFCS level, and CP subtype. RESULTS: 60% of the children performed STS without support, 14% performed STS with support, and 26% were unable or needed assistance from another person. STS performance was strongly associated with GMFCS level and differed with age and subtype (p < 0.001). For all GMFCS levels, STS performance was lowest at age 1-3 years. Most children with GMFCS level I (99%) or II (88%) performed STS without support at the age of 4-6 years. In children with GMFCS level III or IV, the prevalence of independent STS performance improved throughout childhood. CP subtype was not associated with STS performance across all GMFCS levels when adjusted for age. CONCLUSIONS: Independent STS performance in children with CP is associated with GMFCS level and age. Children with CP acquire STS ability later than their peers normally do. The proportion of children with independent STS performance increased throughout childhood, also for children with GMFCS level III or IV. These findings suggest the importance of maintaining a focus on STS performance within physiotherapy strategies and interventions for children with CP, including those with higher GMFCS level.

Virtual reality for COPD exacerbation: A randomized controlled trial.

BACKGROUND: Pulmonary rehabilitation (PR) is an effective treatment method for chronic obstructive pulmonary disease (COPD). However, individuals with chronic diseases that require lifelong treatment and experience exacerbations need motivational methods. OBJECTIVES: The aim of this study was to examine the effects of virtual reality on symptoms, daily living activity, functional capacity, anxiety and depression levels in COPD exacerbation. METHODS: Fifty patients hospitalized for COPD exacerbation were included in the study. They were randomly assigned to two groups. Twenty-five patients participated in a traditional PR (once-daily until discharge), including pedaling exercises. The second/25 patients followed the same protocol but experienced cycling simulation in the forest via virtual reality (VR + PR). All patients were evaluated using 1-minute/Sit-to-Stand test (STST), modified-Medical Research Council (mMRC) scale, COPD Assessment test (CAT), Hospital Anxiety and Depression Scale (HADS), and London Chest Activities of Daily Living (LCADL) before and after the treatment. RESULTS: The STST showed an increase in both groups post-treatment, notably higher in the VR + PR (p = 0.037). Dyspnea levels and CAT scores decreased in all patients, but the decrease was greater in the PR + VR group for both parameters (p = 0.062, p = 0.003; respectively). Both groups experienced a reduction in the HADS scores compared to the pre-treatment, with a more significant decrease in depression and the total score in the VR + PR (p < 0.05). LCADL's sub-parameters and total score, excluding household, decreased in both groups after treatment (p < 0.05). The improvement was more substantial in the VR + PR. CONCLUSIONS: Virtual reality provides benefits in the management of COPD exacerbations and can be used safely. CLINICAL TRIAL REGISTIRATION: Registered at clinicaltrials.gov, registration ID: NCT05687396, URL: www. CLINICALTRIALS: gov.

"If I have a limited amount of time left, this is not how I want to spend it": A qualitative descriptive study of factors influencing daily life participation following a cancer diagnosis.

OBJECTIVE: Following a cancer diagnosis, restricted participation in daily life is common. Restricted participation can be temporary or long lasting. The aim of this study was to characterize how daily life participation is impacted following a cancer diagnosis. METHODS: Eligible individuals included adults (>18 years) with any stage/grade brain, breast, colorectal, or lung cancer in any phase of treatment or post-treatment. Participants completed a semi-structured interview about how their life participation was impacted following their cancer diagnosis. Data were analyzed through team-based thematic analysis. RESULTS: Forty adults, 10 per disease category, participated. Four themes were identified that supported or hindered daily life participation: (1) self-expectations, (2) expectations of others, (3) awareness of mortality, and (4) symptoms and side effects of cancer. Participants discussed how their cancer experience resulted in a reprioritization of what they valued doing in their life. However, many survivors struggled to adapt and described a tension between their need to adapt to their current life circumstances and their contrasting desire to stay connected with their pre-cancer selves through daily life participation. The mental health challenges associated with decreased participation were also outlined by participants. CONCLUSIONS: Cancer survivors' daily life participation is influenced by expectations from themselves and others, awareness of mortality, and disease symptoms/side effects. Future interventions can target these domains to supports survivors' life participation.

Diurnal variation in anxiety and activity is influenced by chronotype and probable anxiety-related disorder status.

Anxiety symptoms vary moment-to-moment within a day. One factor that may influence these variations is chronotype. Evening chronotypes prefer to engage in activities (e.g., sleep, physical and social activity) later in the day, and evening chronotype is implicated in psychopathology, including anxiety-related disorders. However, it is unknown whether chronotype influences diurnal variation in anxiety symptoms and whether these effects are amplified in individuals with a probable anxiety-related disorder. We examined the diurnal variation in anxiety symptoms and daily activities in morning and evening chronotypes with and without probable generalized anxiety disorder (GAD) or obsessive-compulsive disorder (OCD) in a community sample of adults (N = 410). Evening chronotypes reported higher anxiety symptoms, particularly in the evening hours, and lower engagement in daily activities, predominantly in the morning hours. Evening chronotypes with probable GAD or OCD reported worse anxiety symptoms in the evening. Our findings indicate that anxiety symptoms and engagement in daily activities fluctuate considerably across the day, and these patterns differ depending on chronotype. Evening chronotypes have more anxiety symptoms in the evening, despite preferring this time of day. Personalized treatment approaches that consider chronotype and target certain times of day may be efficient in alleviating peaks in anxiety symptoms.

The usefulness of assistive soft robotics in the rehabilitation of patients with hand impairment: A systematic review.

INTRODUCTION: Loss of hand function causes severe limitations in activity in daily living. The hand-soft robot is one of the methods that has recently been growing to increase the patient's independence. The purpose of the present systematic review was to provide a classification, a comparison, and a design overview of mechanisms and the efficacy of the soft hand robots to help researchers approach this field. METHODS: The literature research regarding such tools was conducted in PubMed, Google Scholar, Science Direct, and Cochrane Central Register for Controlled Trials. We included peer-reviewed studies that considered a soft robot glove as an assistive device to provide function. The two investigators screened the titles and abstracts, then independently reviewed the full-text articles. Disagreements about inclusion were resolved by consensus or a third reviewer. RESULTS: A total of 15 articles were identified, describing 210 participants (23 healthy subjects). The tools were in three categories according to their actuation type (pneumatic system, cable-driven, another design). The most critical outcomes in studies included functional tasks (fourteen studies), grip strength (four studies), range of motion (ROM) (five studies), and user satisfaction (five studies). DISCUSSION: Function and grip parameters are the most common critical parameters for tests of hand robots. Cable-driven transmission and soft pneumatic actuators are the most common choices for the actuation unit. Radder et al. study had the highest grade from other studies. That was the only RCT among studies. CONCLUSION: Although few soft robotic gloves can be considered ready to reach the market, it seems these tools have the potential to be practical for people with a disability. But, we lack consistent evidence of comparing two or more soft robot gloves on the hand functions. Future research needs to assess the effect of soft robotic gloves on people with hand disorders with more populations.

Development and Validation of Performance-Based Assessment of Daily Living Tasks in Age-Related Macular Degeneration.

Purpose: To establish the reliability and validity of five performance-based activities of daily living task tests (ADLTT), to correlate structure to function, to evaluate the impact of visual impairment (VI) on age-related macular degeneration (AMD), and to develop new outcome measures. Methods: A multidisciplinary team developed five ADLTTs: (1) reading test (RT); (2) facial expression (FE) recognition; (3) item search (IS) task; (4) money counting (MC) task; and (5) making a drink (MD), tested with binocular and monocular vision. ADLTTs were tested for known-group (i.e., difference between AMD group and controls) and convergent (i.e., correlation to other measures of visual function), validity metrics, and test-retest reliability in 36 patients with VI (visual acuity (logMAR VA > 0.4) in at least one eye caused by AMD versus 36 healthy controls without VI. Results: Compared to controls, AMD patients had a slower reading speed (-77.41 words/min; P < 0.001); took longer to complete MC using monocular worse eye and binocular vision (15.13 seconds and 4.06 seconds longer compared to controls, respectively; P < 0.001); and MD using monocular worse eye vision (9.37 sec; P = 0.033), demonstrating known-group validity. Only RT and MC demonstrated convergent validity, showing correlations with VA, contrast sensitivity, and microperimetry testing. Moderate to good test-retest reliability was observed for MC and MD (interclass correlation coefficient = 0.55 and 0.77; P < 0.001) using monocular worse eye vision. Conclusions: Real-world ADL functioning associated with VI-related AMD can be assessed with our validated ADLTTs, particularly MC and MD. Translational Relevance: This study validates visual function outcome measures that are developed for use in future clinical practice and clinical trials.

Association between vitamin D insufficiency and depressive symptoms, and functional disability in community-dwelling Brazilian older adults: results from ELSI-Brazil study.

Low serum 25(OH)D levels (< 30 nmol/L) have been associated with increased depressive symptom scores over time, and it is believed that functionality may play a mediating role in the relationship between 25(OH)D and depressive symptoms. To comprehend the association between these factors could have significant implications for public health policy. The aim of this study was to verify the association between simultaneous vitamin D insufficiency and depressive symptoms, and functional disability in community-dwelling older adults. This was a cross-sectional study with data from the Brazilian Longitudinal Study of Aging (ELSI-Brazil), collected between 2015 and 2016. The outcomes were functional disability assessed through basic activities of daily living (ADL) and instrumental activities of daily living (IADL). The exposures were vitamin D insufficiency (< 30 nmol/L) and depressive symptoms (≥ 4 points in 8-item version of the Center for Epidemiological Studies-Depression). Crude and adjusted Poisson regression was performed to estimate associations. A total of 1781 community-dwelling older adults included in this study, 14.6% had disability in ADL and 47.9% in IADL; 59.7% had vitamin D insufficient levels, and 33.2% depressive symptoms. The concomitant presence of vitamin D insufficient and depressive symptoms increased the prevalence of ADL by 2.20 (95% CI: 1.25; 3.86) and IADL by 1.54 (95% CI: 1.24; 1.91), respectively. Therefore, preventive strategies to keep older adults physically and socially active, with a good level of vitamin D, are essential to avoid depression and functional disability.

Patient outcome quality indicators for older persons in acute care: original development data using interRAI AC-CGA.

BACKGROUND: A range of strategies are available that can improve the outcomes of older persons particularly in relation to basic activities of daily living during and after an acute care (AC) episode. This paper outlines the original development of outcome-oriented quality indicators (QIs) in relation to common geriatric syndromes and function for the care of the frail aged hospitalized in acute general medical wards. METHODS: Design QIs were developed using evidence from literature, expert opinion, field study data and a formal voting process. A systematic literature review of literature identified existing QIs (there were no outcome QIs) and evidence of interventions that improve older persons' outcomes in AC. Preliminary indicators were developed by two expert panels following consideration of the evidence. After analysis of the data from field testing (indicator prevalence, variability across sites), panel meetings refined the QIs prior to a formal voting process. SETTING: Data was collected in nine Australian general medical wards. PARTICIPANTS: Patients aged 70 years and over, consented within 24 h of admission to the AC ward. MEASUREMENTS: The interRAI Acute Care - Comprehensive Geriatric Assessment (interRAI AC-CGA) was administered at admission and discharge; a daily risk assessment in hospital; 28-day phone follow-up and chart audit. RESULTS: Ten outcome QIs were established which focused on common geriatric syndromes and function for the care of the frail aged hospitalized in acute general medical wards. CONCLUSION: Ten outcome QIs were developed. These QIs can be used to identify areas where specific action will lead to improvements in the quality of care delivered to older persons in hospital.

Physical strain of walking in people with neuromuscular diseases is high and relates to step activity in daily life.

OBJECTIVE: To determine the physical strain of walking and assess its relationship with daily steps and intensity of daily activity in people with neuromuscular diseases. DESIGN: Cross-sectional study. SUBJECTS/PATIENTS: Sixty-one adults with neuromuscular diseases. METHODS: Physical strain of walking, defined as oxygen consumption during comfortable walking relative to peak oxygen uptake. Daily step count and daily time spent in moderate and vigorous physical activity were assessed using accelerometry and heart rate measurements, respectively. Regression analyses assessed the relationships between log daily step count and log daily time spent in moderate and vigorous physical activity, and physical strain of walking. RESULTS: The mean (standard deviation) physical strain of walking was 73 (20)% Log daily step count and physical strain were negatively associated (ß = -0.47). No association was found with log daily time spent in moderate and vigorous physical activity. CONCLUSIONS: The highly increased physical strain of comfortable walking indicates that walking is very demanding for people with neuromuscular diseases and is associated with a reduction in daily step activity. The absence of a relationship between intensity of activities and physical strain indicates that, despite a reduction in daily step activity, strenuous daily activities may still be performed.

Developmental milestones and daily living skills in individuals with Angelman syndrome.

BACKGROUND: Angelman syndrome (AS) is a neurodevelopmental disorder associated with severe global developmental delay. However, the ages at which different developmental skills are achieved in these individuals remain unclear. We seek to determine the probability and the age of acquisition of specific developmental milestones and daily living skills in individuals with AS across the different molecular subtypes, viz. class I deletion, class II deletion, uniparental disomy, imprinting defect, and UBE3A variants. METHODS: Caregivers participating in a longitudinal multicenter Angelman Syndrome Natural History Study completed a questionnaire regarding the age at which their children achieved specific developmental milestones and daily living skills. The Cox Proportional Hazard model was applied to analyze differences in the probability of achievement of skills at various ages among five molecular subtypes of AS. RESULTS: Almost all individuals, regardless of molecular subtype, were able to walk with support by five years of age. By age 15, those with a deletion had at least a 50% probability of acquiring 17 out of 30 skills compared to 25 out of 30 skills among those without a deletion. Overall, fine and gross motor skills such as holding and reaching for small objects, sitting, and walking with support were achieved within a fairly narrow range of ages, while toileting, feeding, and hygiene skills tend to have greater variability in the ages at which these skills were achieved. Those without a deletion had a higher probability (25-92%) of achieving daily living skills such as independently toileting and dressing compared to those with a deletion (0-13%). Across all molecular subtypes, there was a low probability of achieving independence in bathing and brushing teeth. CONCLUSION: Individuals with AS without a deletion are more likely to achieve developmental milestones and daily living skills at an earlier age than those with a deletion. Many individuals with AS are unable to achieve daily living skills necessary for independent self-care.

A systematic review of the psychometric properties of physical performance tests for sarcopenia in community-dwelling older adults.

BACKGROUND: This review provides an overview of the psychometric properties of the short physical performance battery (SPPB), timed up and go test (TUG), 4 m gait speed test (4 m GST) and the 400 m walk test (400 m WT) in community-dwelling older adults. METHODS: A systematic search was conducted in MEDLINE, CINAHL and EMBASE, resulting in the inclusion of 50 studies with data from in total 19,266 participants (mean age 63.2-84.3). Data were extracted and properties were given a sufficient or insufficient overall rating following the COSMIN guideline for systematic reviews of patient-reported outcome measures. Quality of evidence (QoE) was rated using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach. RESULTS: The SPPB was evaluated in 12 studies, TUG in 30, 4 m GST in 12 and 400 m WT in 2. Reliability of the SPPB, TUG and 4 m GST was rated sufficient (moderate to good QoE). The measurement error of the SPPB was rated insufficient (low QoE). Criterion validity for the SPPB was insufficient in indicating sarcopenia (moderate QoE), while the TUG was sufficient and insufficient for determining mobility limitations (low QoE) and activities of daily living disability (low QoE), respectively. Construct validity of the SPPB, TUG, 4 m GST and 400 m WT was rated insufficient in many constructs (moderate to high QoE). Responsiveness was rated as insufficient for SPPB (high QoE) and TUG (very low QoE), while 4 m GST was rated as sufficient (high QoE). CONCLUSION: Overall, the psychometric quality of commonly used physical performance tests in community-dwelling older adults was generally rated insufficient, except for reliability. These tests are widely used in daily practice and recommended in guidelines; however, users should be cautious when drawing conclusions such as sarcopenia severity and change in physical performance due to limited psychometric quality of the recommended measurement instruments. There is a need for a disease-specific physical performance test for people with sarcopenia.This research received no specific grant from any funding agency and was registered a priori using the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42022359725).

Impact of perineal pain and delivery related factors on interference with activities of daily living until 1 month postpartum: A longitudinal prospective study.

BACKGROUND: Interference with activities of daily living can negatively impact maternal practices both physically and psychologically. This study aimed to explore the patterns of interference with activities of daily living and perineal pain among Japanese women until 1 month postpartum. Furthermore, we aimed to describe how both perineal pain and delivery-related factors were associated with interference with activities of daily living. METHODS: This study was part of a larger prospective longitudinal study conducted at five maternity hospitals in Japan. The participants were 293 women who had full-term vaginal deliveries and singleton infants. Participants self-evaluated their perineal pain and interference with activities of daily living using a 100 mm visual analogue scale and 'behaviour that interferes with daily life scale' at day 1, day 5, and 1 month postpartum. We used a linear mixed model to calculate the fixed-effects parameter estimates and their 95% confidence intervals. Interference with activities of daily living, which included difficulty sitting, difficulty moving, and difficulties with excretion and cleanliness, were set as the dependent variables. RESULTS: The final analysis included 184 participants with a mean age of 31.5±4.5 years. Perineal pain and the three sub-scales of interference with activities of daily living reduced from day 1 to 5 postpartum, and further from day 5 to 1 month postpartum (perineal pain, p<0.01, p<0.01; difficulty sitting, p<0.01, p<0.01; difficulty moving, p<0.01, p<0.01; difficulties with excretion and cleanliness, p<0.01, p<0.01). These tendencies did not change, even adjusted for independent variables using a mixed model. In the mixed model for follow-up data, perineal pain was a significantly and positively associated with three sub-scales of interference with activities of daily living, even after adjusted for perineal injury and episiotomy. CONCLUSIONS: Positive relationships were observed between perineal pain and interference with activities of daily living until 1 month postpartum, although both reduced. To promote maternal role attainment through child-rearing since early postpartum, midwives should pay additional attention to mothers' perineal pain as it could negatively affect their daily life and child-rearing.

Operationalizing and digitizing person-centered daily functioning: a case for functionomics.

An ever-increasing amount of data on a person's daily functioning is being collected, which holds information to revolutionize person-centered healthcare. However, the full potential of data on daily functioning cannot yet be exploited as it is mostly stored in an unstructured and inaccessible manner. The integration of these data, and thereby expedited knowledge discovery, is possible by the introduction of functionomics as a complementary 'omics' initiative, embracing the advances in data science. Functionomics is the study of high-throughput data on a person's daily functioning, that can be operationalized with the International Classification of Functioning, Disability and Health (ICF).A prerequisite for making functionomics operational are the FAIR (Findable, Accessible, Interoperable, and Reusable) principles. This paper illustrates a step by step application of the FAIR principles for making functionomics data machine readable and accessible, under strictly certified conditions, in a practical example. Establishing more FAIR functionomics data repositories, analyzed using a federated data infrastructure, enables new knowledge generation to improve health and person-centered healthcare. Together, as one allied health and healthcare research community, we need to consider to take up the here proposed methods.

Effects of Kinesiotaping on upper limb function and daily activities in subacute or chronic stroke survivors: A randomized control study.

BACKGROUND: Impaired upper limb function in stroke survivors is characterized by muscle weakness, increased muscle tone, contracture, or impaired motor control. OBJECTIVE: We aimed to evaluate the effectiveness of Kinesio-taping application for functional recovery on the affected arm and forearm during rehabilitation. METHODS: Forty-one patients eligible for this study were randomly assigned to either the Kinesio-taping group (n = 21), receiving Kinesio-taping intervention and conventional therapy, or control group (n = 20), receiving sham Kinesio-taping intervention and conventional therapy. The whole intervention lasted for 3 weeks. Fugl-Meyer assessment of the upper extremity, Barthel Index, the Stroke Impact Scale, and modified Ashworth scale were measured at 3 time points: baseline, post-treatment (3rd week), and follow-up (6th week). RESULTS: In the Kinesio-taping group, there were significant differences in the upper extremity (p = 0.003), wrist (p = 0.000) and hand (p = 0.000) parts of the Fugl-Meyer assessment of the upper extremity between the three assessment times. On the other hand, the Barthel Index showed significant differences in both groups after therapy. CONCLUSION: Combining conventional rehabilitation with Kinesio-taping intervention may improve functional motor performance of both the proximal and distal parts of the affected upper extremity in stroke survivors, with potential benefits for activity of daily living.

Evaluation of Changes in Activities of Daily Living and Quality of Life of Patients with Bone Metastasis Who Underwent Conservative Therapy through Bone Metastasis Cancer Boards.

Background and Objectives: Changes in activities of daily living (ADL) and quality of life (QOL) of patients with bone metastasis who underwent surgical treatment through Bone Metastasis Cancer Boards (BMCBs), a recent multidisciplinary approach for managing bone metastases, have been reported; however, no reports exist on patients who undergo conservative treatment. In this study, we aimed to evaluate these patients' ADL and QOL and examine the factors influencing changes in these parameters. Materials and Methods: We retrospectively reviewed 200 patients with bone metastases who underwent conservative therapy through BMCBs between 2013 and 2021. A reassessment was conducted within 2-8 weeks after the initial assessment. Patients' background and changes in performance status (PS), Barthel Index (BI), EuroQol five-dimension (EQ-5D) scores, and Numerical Rating Scale (NRS) scores were initially assessed. Furthermore, we categorized patients into two groups based on improvements or deteriorations in ADL and QOL and performed comparative analyses. Results: Significant improvements in EQ-5D (0.57 ± 0.02 versus [vs.] 0.64 ± 0.02), NRS max (5.21 ± 0.24 vs. 3.56 ± 0.21), and NRS average (2.98 ± 0.18 vs. 1.85 ± 0.13) scores were observed between the initial assessment and reassessment (all p < 0.001). PS (1.84 ± 0.08 vs. 1.72 ± 0.08) and BI (83.15 ± 1.68 vs. 84.42 ± 1.73) also showed improvements (p = 0.06, and 0.054, respectively). In addition, spinal cord paralysis (odds ratio [OR]: 3.69, p = 0.049; OR: 8.42, p < 0.001), chemotherapy (OR: 0.43, p = 0.02; OR: 0.25, p = 0.007), and NRS average scores (OR: 0.38, p = 0.02; OR: 0.14, p < 0.001) were independent factors associated with ADL and QOL. Conclusions: Patients with bone metastases who underwent conservative treatment through BMCBs exhibited an increase in QOL without a decline in ADL. The presence of spinal cord paralysis, absence of chemotherapy, and poor pain control were associated with a higher risk of deterioration in ADL and QOL.

Effects of Upper Limb Control on the Less-Affected Side on Upper Limb Function, Respiration, Balance, and Activities of Daily Living in Stroke.

Background and Objectives: This study aimed to investigate the effects of upper limb control exercises on upper limb function, respiration, balance, and activities of daily living in patients with stroke. Materials and Methods: The 28 patients who met the selection criteria were randomly assigned to two groups of 14 patients each. Subsequently, upper limb control exercises using real-time feedback were applied. The same interventional exercise was applied to both the less-affected and affected limbs of the study participants, who were classified into a less-affected side upper limb control group and an affected side upper limb control exercise group. Interventional exercises, 30 min each, were performed five times weekly for 4 weeks, and follow-up examinations were performed 2 weeks after the end of exercise. Electronic muscle strength measurements and an electronic goniometer were used to evaluate upper limb function. A spirometer was used to measure respiration. Balance ability was evaluated using a force plate pressure distribution measuring system with a sensor that detects the movement of the body center on the ground. Daily life movements were evaluated using the Korean version of the modified Barthel index. Results: When examining the results, the upper limb function on the paralyzed side showed an increase in the electromyographic strength of shoulder joint depression and flexion angle. Improvements were also observed in respiration (forced vital capacity [L] and forced expiratory volume in 1 s [L]), balance (95% confidence ellipse area [mm2] and center of pressure displacement [mm]), and daily life activities, all of which showed statistically significant differences in the time × group interaction effect (p < 0.05). Conclusions: Thus, it was found that the upper limb control exercise on the less-affected side had a significant effect when the exercise was performed together with treatment on the affected side in patients with stroke. It is anticipated that this study will provide basic data for evaluating both the trunk and upper limbs of the less-affected and affected sides.

Development and Validation of a Scoring System (SAGA Score) to Predict Weight Loss in Community-Dwelling, Self-Supported Older Adults.

This retrospective cohort study explored the prevalence of substantial weight loss (≥10% per year) in independent older individuals in order to develop and validate a scoring system for high-risk group identification and targeted intervention against malnutrition. We used insurance claims and the Kokuho Database (KDB), a nationwide repository of Japanese-specific health checkups and health assessments for the older people. The study included 12,882 community-dwelling individuals aged 75 years and older who were self-supported in their activities of daily living in Saga Prefecture, Japan. Health evaluations and questionnaires categorized weight-loss factors into organic, physiological, psychological, and non-medical domains. The resulting scoring system (SAGA score), incorporating logistic regression models, predicted ≥ 10% annual weight-loss risk. The results revealed a 1.7% rate of annual substantial weight loss, with the SAGA score effectively stratifying the participants into low-, intermediate-, and high-risk categories. The high-risk category exhibited a weight-loss rate of 17.6%, highlighting the utility of this scoring system for targeted prevention. In conclusion, the validated SAGA score is a crucial tool for identifying individuals at high risk of significant weight loss, enabling tailored interventions and social support benefiting both older individuals and their relatives.