Lung transplantation from controlled donation after circulatory death using simultaneous abdominal normothermic regional perfusion: A single center experience.

Despite the benefits of abdominal normothermic regional perfusion (A-NRP) for abdominal grafts in controlled donation after circulatory death (cDCD), there is limited information on the effect of A-NRP on the quality of the cDCD lungs. We aimed to study the effect of A-NRP in lungs obtained from cDCD and its impact on recipients´ outcomes. This is a study comparing outcomes of lung transplants (LT) from cDCD donors (September 2014 to December 2021) obtained using A-NRP as the abdominal preservation method. As controls, all lung recipients transplanted from donors after brain death (DBD) were considered. The primary outcomes were lung recipient 3-month, 1-year, and 5-year survival. A total of 269 LT were performed (60 cDCD and 209 DBD). There was no difference in survival at 3 months (98.3% cDCD vs. 93.7% DBD), 1 year (90.9% vs. 87.2%), and 5 years (68.7% vs. 69%). LT from the cDCD group had a higher rate of primary graft dysfunction grade 3 at 72 h (10% vs. 3.4%; p <  .001). This is the largest experience ever reported with the use of A-NRP combined with lung retrieval in cDCD donors. This combined method is safe for lung grafts presenting short-term survival outcomes equivalent to those transplanted through DBD.

Functional Capacity and Self-Esteem of People With Cerebral Palsy.

OBJECTIVE: We assessed whether functional capacity predicts self-esteem in people with cerebral palsy (CP). METHOD: We conducted a cross-sectional observational study of 108 people with CP, ages 16-65 yr, who were residents of Spain. Self-esteem was captured using the Rosenberg Self-Esteem Scale (RSES), and functional capacity using the Barthel Index (BI). Sociodemographic characteristics were recorded. The relationship between the RSES score and the BI score was analyzed using linear regression. RESULTS: RSES scores increased significantly as BI scores increased (regression coefficient = 0.047, 95% confidence interval [0.017, 0.078], p = .003). People with a higher level of education, active employment, and independent living arrangements tended to have better functional capacity and higher self-esteem. CONCLUSION: Greater functional capacity predicted higher self-esteem; this effect is probably partly mediated by education, employment, and living arrangements.

The use of robots for augmentative manipulation during play activities among children with motor impairment: a scoping review.

PURPOSE: To describe the extent, type, and quality of studies involving robots for augmentative manipulation during play by children with severe motor impairments (CwSMI), and to explore how they influenced children's cognitive skills and engagement. METHODS: Web of Science, Scopus, PubMed & EBSCO were systematically searched for articles published until March 2021, that reported cognitive skills and/or engagement outcomes from interventions involving the use of robots in play activities, where participants included CwSMI, and full-text was available. Data extracted comprised characteristics of participants, study design, purpose of the study, outcomes assessed, collection methods, and intervention carried out (robot-environment interaction and robot used). RESULTS: Eight mobile robots and five robotic arms were reported in the 17 included and reviewed articles. Most of them informed a positive impact on CwSMI's cognitive skills and/or engagement. However, the studies scored poorly on a five-criteria quality assessment, and only one single-case design proved strong evidence of treatment. None of the analysed interventions was an evidence-based practice. CONCLUSION: The use of manipulative robots during play activities may have a positive impact on the CwSMI's cognitive skills and engagement in activities. However, further studies with higher internal and external validity are needed to support stronger evidence.Implications for rehabilitationThe use of robots for augmentative manipulation during play activities may have a positive influence on the cognitive functions and the engagement in activities of children with severe motor impairments.Through manipulative robots, this population could be able to show the abilities that are hidden due to their motor impairments, and subsequently, receive educational and physical training more aligned with their real capacities and potential.

Influence of falls, fall-related injuries, and fear of falling on social participation in people aging with long-term physical disability: a cross-sectional study.

PURPOSE: This study examined prevalence and relationships among falls, injuries, fear of falling, and social participation in people aging with long-term physical disability (PAwLTPD). MATERIALS AND METHODS: A convenience sample of 474 PAwLTPD recruited from community agencies and social media as baseline of a longitudinal cohort study. Inclusion criteria: 45-65 years, self-reported physical disability for ≥5 years, and English-speaking. Self-report surveys of physical/mental health, falls in the past year, fear of falling, and Patient-Reported Outcomes Measurement Information System (PROMIS) ability and satisfaction with participation in social roles and activities measures were collected. RESULTS: Mean age 56.8 years; participants were mostly female (66.7%) and White (61.4%). Nearly 65% reported a fall; 56.6% of falls resulted in injury. Falls and fall-related injuries were associated with worse physical/mental health and presence of >5 health conditions. Seventy-five percent of participants reported fear of falling. Lower ability and satisfaction with participation were found in participants who fell and worried about falls. CONCLUSIONS: PAwLTPD are at increased risk of falls, fall-related injuries, and fear of falling, which affects their ability to engage in social activities. Future research is needed to understand circumstances associated with falls and to develop effective interventions to address falls in PAwLTPD.

Community-dwelling individuals aged 45­65 years who are aging with long-term physical disabilities report increased rates of falls, fall-related injuries, and fear of falling.People aging with long-term physical disabilities who experience falls report decreases in their social participation.Additional work within the rehabilitation field is needed to develop effective, evidence-based interventions to reduce the occurrence of falls among individuals aging with long-term physical disability.

Double-Lung Transplantation in a Patient with Pulmonary Type B Niemann-Pick Disease: A Valid Treatment Option.

Niemann-Pick disease is a rare autosomal recessive disease characterized by an abnormal intracellular lipid accumulation. Type B is later in onset and a less severe form of the disease, so affected people may survive in adulthood. Storage of sphingomyelin in pulmonary macrophages can lead to interstitial lung disease. There are very few published cases of lung transplantation in patients with Niemann-Pick disease, all of them described in the last 2 years. We present here one case of a 57-year-old man successfully treated with a double-lung transplant.

Aging with long-term physical disability: Cohort analysis of survey sample in the U.S.

Background: Chronic health conditions, secondary conditions, and decreasing functional ability related to aging and/or changes in underlying impairment may influence participation for persons aging with long-term physical disability (AwD). Objective: To examine sample integrity and baseline findings through exploration of associations of sociodemographic, health, and disability factors with social participation for persons AwD. Methods: This is a longitudinal cohort study following persons AwD over three years, reporting baseline cohort study data. A convenience sample of 474 persons AwD aged 45-65 reporting physical disability of ≥5 years' duration was recruited through community organizations and social media. The cohort was majority female (66.7%) and single (62.0%), and over one-third (38.6%) was non-White. Pain, fatigue, depression, ability to participate in, and satisfaction with, social roles and activities were measured with the Patient Reported Outcomes Measurement Information System. Results were manually compared against AwD study samples identified through a focused literature review and national census data. Results: Participants aged 55-60 and 61-65 had significantly lower rates of employment and marriage and higher rates of living alone than participants aged 45-54. Participants reported higher rates of fatigue, pain, and depression and lower ability to participate in, and satisfaction with, participation in, social roles and activities than the general population. Ability to participate and satisfaction with participation were highest among Black/African American participants. Conclusions: Participants reported higher rates of common AwD symptoms and lower ability to participate and satisfaction with participation than the general population, consistent with prior studies of AwD samples. This cohort reflects the AwD population and can be considered an AwD sample, comparable to those found in existing literature. The focus of future analyses will be to gain a greater understanding of chronic health conditions, incidence of falls, engagement in everyday life activities, and the impact of the environment.

High parathyroid hormone predicts exacerbations in COPD patients with hypovitaminosis D.

BACKGROUND: Hypovitaminosis D has been linked to deterioration in clinical parameters and lung function in COPD. As a response to low levels of vitamin D serum Parathyroid Hormone (iPTH) is increased in some, but not all, patients. The aim of this study was to determine whether COPD patients with elevated PTH levels are at higher risk of COPD exacerbations and hospitalizations. METHODS: 166 COPD outpatients were randomly preselected. Clinical and analytical characteristics were assessed at baseline. After excluding patients with other conditions known to disturb calcium metabolism 141 patients were identified. Except one, all patients were prospectively followed for 12 months after obtaining the blood samples. Hypovitaminosis D was considered when serum 25(OH)D < 30 ng/mL. Secondary hyperparathyroidism was considered when serum iPTH was higher than normal (50 pg/mL) in patients with hypovitaminosis D. COPD exacerbations and hospital admissions were recorded during the follow-up. RESULTS: Prevalence of hypovitaminosis D in COPD patients was 89.3%, prevalence of secondary hyperparathyroidism associated with hypovitaminosis D was 22,9%. Cox proportional risk analysis showed that patients belonging to the high iPTH-low 25(OH)D group were at a higher risk of moderate COPD exacerbations (HR 1.81 (CI95% 1.043-3.127), p = 0.035) and hospital admissions (HR 5.45 (CI95% 2.018-14.720), p = 0.002) as compared with those with normal iPTH-low 25(OH)D levels. CONCLUSIONS: COPD patients with hypovitaminosis D and elevated iPTH have higher risk of moderate exacerbations and hospitalizations than those with hypovitaminosis D and normal iPTH.

Development and implementation of a community-based research network.

INTRODUCTION: People aging with long-term physical disabilities (PAwLTPD), meaning individuals with onset of disability from birth through midlife, often require long-term support services (LTSS) to remain independence. The LTSS system is fragmented into aging and disability organizations with little communication between them. In addition, there are currently no evidence-based LTSS-type programs listed on the Administration for Community Living website that have been demonstrated to be effective for PAwLTPD. Because of these gaps, we have developed a community-based research network (CBRN), drawing on the practice-based research network model (PBRN), to bring together aging and disability organizations to address the lack of evidence-based programs for PAwLTPD. MATERIALS AND METHODS: Community-based organizations serving PAwLTPD across the state of Missouri were recruited to join the CBRN. A formative process evaluation of the network was conducted after a year to evaluate the effectiveness of the network. RESULTS: Nine community-based organizations across the state of Missouri joined the CBRN. CBRN members include three centers for independent living (CILs), three area agencies on aging (AAAs), one CIL/AAA hybrid, one non-CIL disability organization, and one non-AAA aging organization. To date, we have held seven meetings, provided educational opportunities for CBRN members, and launched an inaugural research study within the CBRN. Formative evaluation data indicate that CBRN members feel that participation in the CBRN is beneficial. CONCLUSION: The PBRN model appears to be a feasible framework for use with community-based organizations to facilitate communication between agencies and to support research aimed at addressing the needs of PAwLTPD.

A Mobile App Directory of Occupational Therapists Who Provide Home Modifications: Development and Preliminary Usability Evaluation.

BACKGROUND: Home modifications provided by occupational therapists (OTs) are effective in improving daily activity performance and reducing fall risk among community-dwelling older adults. However, the prevalence of home modification is low. One reason is the lack of a centralized database of OTs who provide home modifications. OBJECTIVE: This study aimed to develop and test the usability of a mobile app directory of OTs who provide home modifications in the United States. METHODS: In phase 1, a prototype was developed by identifying OTs who provide home modifications through keyword Web searches. Referral information was confirmed by phone or email. In phase 2, community-dwelling older adults aged older than 65 years and OTs currently working in the United States were purposefully recruited to participate in a single usability test of the mobile app, Home Modifications for Aging and Disability Directory of Referrals (Home Maddirs). Participants completed the System Usability Scale (SUS) and semistructured interview questions. Interview data were coded, and themes were derived using a grounded theory approach. RESULTS: In phase 1, referral information for 101 OTs across 49 states was confirmed. In phase 2, 6 OTs (mean clinical experience 4.3 years, SD 1.6 years) and 6 older adults (mean age 72.8 years, SD 5.0 years) participated. The mean SUS score for OTs was 91.7 (SD 8.0; out of 100), indicating good usability. The mean SUS score for older adults was 71.7 (SD 27.1), indicating considerable variability in usability. In addition, the SUS scores indicated that the app is acceptable to OTs and may be acceptable to some older adults. For OTs, self-reported barriers to acceptability and usability included the need for more information on the scope of referral services. For older adults, barriers included high cognitive load, lack of operational skills, and the need to accommodate sensory changes. For both groups, facilitators of acceptability and usability included perceived usefulness, social support, and multiple options to access information. CONCLUSIONS: Home Maddirs demonstrates good preliminary acceptability and usability to OTs. Older adults' perceptions regarding acceptability and usability varied considerably, partly based on prior experience using mobile apps. Results will be used to make improvements to this promising new tool for increasing older adults' access to home modifications.

Examination of Community Participation of Adults With Disabilities: Comparing Age and Disability Onset.

Objective: Explore community participation between adults with disabilities ⩽50 and >50 years and between early-(⩽40) and late-(>40) onset disability. Method: A survey examining participation was conducted with a national convenience sample of 692 community-dwelling adults with disabilities. Results: Participants ⩽50 reported presence of more (p < .05) environmental supports for work/volunteer/education and use of transportation. Participants >50 had higher (p < .01) visits to pharmacies; higher (p < .05) evaluative quality of participation (EQOP) at gas stations, exercise facilities, beauty salons/barbers, and use of transportation (p < .01); and more difficulty participating without assistance at grocery stores (p < .05) and gas stations (p < .01). The early-onset group reported higher (p < .05) EQOP at work/volunteer/education and homes of family/friends. The late-onset group reported higher (p < .01) EQOP at exercise facilities; more (p < .05) environmental supports at pharmacies, restaurants, grocery stores (p < .01), doctors' offices (p ⩽ .01), and beauty salons/barbers (p < .01); greater (p < .01) influence of pain/fatigue; and more difficulty without assistance at grocery stores (p < .05) and gas stations (p < .01). Discussion: Understanding these differences can improve interventions to support community participation of individuals aging with disabilities.

How available to European children and young people with cerebral palsy are features of their environment that they need?

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities requires accessibility to the physical and social environments. However, individuals with cerebral palsy (CP) have many difficulties in accessing the environment they need for functional independence and social inclusion. AIMS: To examine the availability of environmental features which children with CP need for optimal participation, and whether availability changed for them between ages 8-12 and 13-17 years. METHODS: The sample is the 594 children with CP, born 31/07/1991-01/04/1997, who took part in the SPARCLE study at age 8-12 (SPARCLE 1) and again at 13-17 years (SPARCLE 2). Participants were randomly sampled from population registers of children with CP in eight European regions; one further region recruited from multiple sources. Data about environment were captured with the European Child Environment Questionnaire (60 items). Differences in availability of environmental features between childhood and adolescence were assessed using McNemar's test; differences between regions were assessed by ranking regions. Differences in availability between regions were assessed by ranking regions. RESULTS: For seven environmental features significantly (p<0.01) fewer individuals needed the feature in SPARCLE 2 than in SPARCLE 1, whilst for two features more individuals needed the feature. Nine features in SPARCLE 1 and six features in SPARCLE 2 were available to less than half the participants who needed them. Eight features showed significantly (p<0.01) higher availability in SPARCLE 2 than in SPARCLE 1 (enlarged rooms, adapted toilet, modified kitchen and hoists at home, adapted toilets and lifts at school, an adequate vehicle, grants for home modifications) while none showed significantly lower availability. The relative rankings of the better and less good regions persisted from the age 8-12year age group to the 13-17year age group. CONCLUSIONS: Needed environmental features are unavailable to many children at ages 8-12 and 13-17 years. This lack of availability is more pronounced in some regions than others, which probably results from their policy, legislative and statutory frameworks.