Multiple Disability Research Articles

Advancing the Research-to-Policy and Practice Pipeline in Aging and Dementia Care.

This is a period of striking and unprecedented population aging that involves more individuals not merely attaining old age but reaching very old ages at which they are at heightened risk for chronic age-related conditions such as sensory loss, frailty, functional disability, and cognitive decline (Ortman et al., 2014). The delivery of person- and family-centered care to the right person at the right time and tailored to meet the needs of individuals and families based on their values and preferences to achieve optimal outcomes is thought to represent the pinnacle of health care quality (Berwick, 2009), but is particularly challenging in the care of older persons due to misaligned payment and delivery systems, the complexity and heterogeneity of health and function, and variable treatment preferences and goals (Boyd et al., 2019; Tinetti et al., 2012; Wolff & Boyd, 2015). Despite major payment and care delivery reforms to promote more comprehensive, coordinated, affordable, and person- and family-centered care, formidable challenges remain for the growing numbers of older adults living with complex health needs. These include high costs and fragmentation of health care and long-term services and supports, inadequate workforce of health care and allied health professionals with competency in geriatric medicine and nursing, and heavy reliance on family and other unpaid caregivers who are often not well supported or prepared for their roles. Within this context, there is a critical need to expand the community of investigators who are trained in health services and outcomes research and public policy, who both understand the specific issues affecting older adults and who possess rigorous methodological training, understanding of health services and systems, and an appreciation of the policy process; have built relationships with advocacy and policy leaders; and thus possess the requisite knowledge to conduct applied policy-oriented research that improves and integrates care for older adults who are frail or have complex health needs such as multiple chronic conditions, dementia, or functional disability.

Access and Emergency Medical Care for Massive or Multiple Injuries

Access and emergency medical care for massive or multiple injuries is an comprehensive interdisciplinary challenge. Taking care of the growing causes of emergency care levels as well as cross-sectoral collaboration in the management of multiple incidents, reducing disease, disability, and mortality in the population with multiple disorders. In a disaster or extraordinary situation with mass casualties is a state in which the health care system is overloaded and the ability to provide emergency health care is considerably hindered. The aim of this review is to present the current state of knowledge on what we, the authors, say are the central aspects of trauma management of mass casualty incidents. Emergency planning and methodology are related to accidental states, elementary medical staff disasters, medical equipment, drilling material, concretizing assessment tools, monitoring, mass incident prevention. In terms of implementing a good action plan, effective collaboration between state agencies such as fire departament and law enforcement is necessary in identifying and directing critically ill patients to designated trauma centres. The integration of emergency systems for incident management, through providing resources like, medical equipment, drugs, autoambulances, ongoing education and training. This has the impact of increasing knowledge of medical emergency procedures that would help reduce the risk of consequences of mass incidents. When applied to MCI responses, damage-control principles reduce resource utilization and optimze surge capacity, consequently reducing the rate of mortality.

Correlation of disability with quality of life in patients with multiple sclerosis treated with natalizumab: primary results and post hoc analysis of the TYSabri ImPROvement study (PROTYS)

BackgroundIn patients with multiple sclerosis (MS), relapses and disability progression have been associated with decreased health-related quality of life (HRQoL).MethodsPROTYS, a prospective, multicentre, single-arm, observational study in seven Swiss MS...

The transition from paediatric to adult care in individuals with Prader-Willi syndrome.

Prader-Willi syndrome (PWS), the most common form of syndromic obesity, is a complex neurodevelopmental genetic disorder including obesity with hyperphagia, endocrine and metabolic disorders and also psychiatric disorders. The most frequent endocrine disturbances include hypogonadism and growth hormone (GH) deficiency. Hypothyroidism and central adrenal insufficiency can also be observed but are less frequent. The transition of patients with PWS from adolescence to adult life is challenging because of multiple comorbidities and complex disability. Patients and caregivers face psychological, medical and social issues. This period of profound changes is thus prone to disruptions, the main risks being the worsening of the medical situation and loss to follow-up of the patients. Medical care may be poorly adapted to the needs of patients because of a lack of knowledge concerning the syndrome and also lack of the necessary specific skills. A multidisciplinary panel composed of several experts in PWS met in November 2021 during an endo-ERN webinar. They presented complementary aspects of PWS from the perspective of the transition including psychiatric, pediatrics and adult endocrinological and parent's and patient's point of view and shed light on the best way to approach this pivotal period.

Symptom Experience and Perceived Health Status of People With Long COVID in Thailand.

Despite the World Health Organization declaring COVID-19 no longer a public health emergency, reports of long COVID persist globally, raising concerns about its impact on individuals. This retrospective study aimed to explore the symptom experiences of individuals with long COVID-19 and examine the relationship between those experiences and perceived negative health status in Thailand. The study focused on individuals with moderate to severe COVID-19 infections. Between July 3, 2022 and December 1, 2022, we conducted telephone interviews with 86 individuals who tested positive for SARS-CoV-2 and received outpatient care in Bangkok. The COVID-19 Yorkshire Rehabilitation Screening was utilized to measure symptom occurrence, duration, severity, and health status on an 11-point numerical rating scale from 0 (none or excellent) to 10 (the worst). A Spearman rank correlation was used to analyze the relationships between long COVID symptoms and negative perception of health status. Among the participants, 75.6% had long COVID, with a median of three symptoms lasting for a median duration of 5.6 months. Difficulties in performing daily activities were most common, reported by 50.8% of participants. The majority (80.0%) experienced itching, headache, cognition, muscle pain, continence, and sleeping problem for 6 months. Loss of taste was the most severe symptom, with a mean severity rating of 8.8. There were significant positive relations between a negative perception of health status and multiple symptoms, symptom severity, functional disability, and additional symptoms. Individuals with moderate to severe COVID-19 infection who experienced long COVID had poorer perceived health status. To effectively manage and improve the health status of individuals with long COVID, nurses should provide follow-up care, assess not only the occurrence of symptoms but also their duration and severity, and evaluate performance outcomes.

Deciphering multiple sclerosis disability with deep learning attention maps on clinical MRI

The application of convolutional neural networks (CNNs) to MRI data has emerged as a promising approach to achieving unprecedented levels of accuracy when predicting the course of neurological conditions, including multiple sclerosis, by means of extracting image features not detectable through conventional methods. Additionally, the study of CNN-derived attention maps, which indicate the most relevant anatomical features for CNN-based decisions, has the potential to uncover key disease mechanisms leading to disability accumulation.From a cohort of patients prospectively followed up after a first demyelinating attack, we selected those with T1-weighted and T2-FLAIR brain MRI sequences available for image analysis and a clinical assessment performed within the following six months (N = 319). Patients were divided into two groups according to expanded disability status scale (EDSS) score: ≥3.0 and < 3.0. A 3D-CNN model predicted the class using whole-brain MRI scans as input. A comparison with a logistic regression (LR) model using volumetric measurements as explanatory variables and a validation of the CNN model on an independent dataset with similar characteristics (N = 440) were also performed. The layer-wise relevance propagation method was used to obtain individual attention maps.The CNN model achieved a mean accuracy of 79% and proved to be superior to the equivalent LR-model (77%). Additionally, the model was successfully validated in the independent external cohort without any re-training (accuracy = 71%). Attention-map analyses revealed the predominant role of frontotemporal cortex and cerebellum for CNN decisions, suggesting that the mechanisms leading to disability accrual exceed the mere presence of brain lesions or atrophy and probably involve how damage is distributed in the central nervous system.

Supplemental Material for Validation of the Multiple Disability Multidimensional Attitudes Scale Toward Persons With Disabilities

Supplemental Material for Validation of the Multiple Disability Multidimensional Attitudes Scale Toward Persons With Disabilities

Structured water dance intervention for adults with profound intellectual and multiple disability: Development and description of the method

People with profound intellectual and multiple disability (PIMD) have a combination of severe intellectual disability and extensive physical impairment, which limits their access to health-promoting enjoyable activities, such as dance. For people with PIMD to participate in dance, there is a need for adjustments and support. Thus, to bring dance and music into their everyday life, the Structured Water Dance Intervention (SWAN) was developed in Sweden. This paper aims to describe the development and methodology of SWAN. SWAN was developed from a holistic view on human existence adhering to a bio-psycho-social perspective. Hence, the key components of SWAN are experience of dance and music, adapted movements, stimulation of the senses, and interaction. In SWAN, the person with PIMD participates in the program in a warm water pool under the guidance of two instructors and in close collaboration with a support person who acts as a dance partner. We conclude that SWAN provides a meaningful activity with the potential to increase wellbeing for individuals with PIMD.

A Scoping Review of School-Based Sexuality Education for Children With Disabilities

Individuals with disabilities often have limited access to school-based sexuality education (SE). This scoping review identified the characteristics of school-based SE intervention programs implemented for students with disabilities. Six electronic databases were searched for peer-reviewed articles: 30 articles published between 1969 and 2020 met inclusion criteria. Some interventions included children from multiple disability categories ( n = 6) or were unclear about disability diagnoses ( n = 3). Other interventions focused on specific disabilities, including intellectual and developmental disability ( n = 8), learning disability ( n = 4 ), autism ( n = 3), physical disability ( n = 3), emotional disturbance ( n = 2), and hearing impairment ( n = 1). Topics of instruction included comprehensive sexuality education ( n = 8), the human body ( n = 8), safety ( n = 8), hygiene and menstrual care ( n = 6), and social and relationship skills ( n = 5). Few studies addressed students’ intersectional identities.

Contemporary study of multiple sclerosis disability in South East Wales

BackgroundA contemporary understanding of disability evolution in multiple sclerosis (MS) is an essential tool for individual disease management and planning of interventional studies. We have used prospectively collected longitudinal data...

Socioeconomic and Medical Vulnerabilities Among Syrian Refugees with Non-communicable Diseases Attending Médecins Sans Frontières Services in Irbid, Jordan

Non-communicable diseases (NCDs) are high-prevalence health problems among Syrian refugees. In 2014, Médecins Sans Frontières (MSF) identified unmet NCD care needs and began providing free-of-charge services for Syrian refugees in Irbid, Jordan. This study aimed to describe current socioeconomic and medical vulnerabilities among MSF Irbid Syrian refugee patients and their households and raise awareness of their ongoing health needs that must be addressed. A cross-sectional survey among Syrian refugees attending MSF NCD services in Irbid Governorate, Jordan was conducted by telephone interviews in January 2021 to query sociodemographic characteristics, economic situation, self-reported NCD prevalence, and Ministry of Health (MoH) policy awareness. Descriptive analysis of indicators included proportions or means presented with 95% confidence intervals. The survey included 350 patient-participants in 350 households and 2157 household members. Mean age was 28.3 years. Only 13.5% of household members had paid or self-employed work; 44% of households had no working members. Mean monthly income was 258.3 JOD (95%CI: 243.5–273.1) per household. Mean expenditures were 320.0 JOD (95%CI: 305.1–334.9). Debt was reported by 93% of households. NCD prevalence among adults was 42% (95%CI: 40–45). Hypertension was most prevalent (31.1%, 95%CI: 28.7–33.7), followed by diabetes (21.8%, 95%CI: 19.7–24.1) and cardiovascular diseases (14.4%, 95%CI: 12.6–16.4). Only 23% of interviewees were aware of subsidized MoH rates for NCD care. Twenty-nine percent stated they will not seek MoH care, mainly due to the unaffordable price. Our findings highlight increased vulnerability among MSF Irbid Syrian refugee NCD patients and their households, including: an older population; a high percentage of unemployment and reliance on cash assistance; higher proportion of households in debt and a high number of households having to resort to extreme coping mechanisms when facing a health emergency; and a higher proportion of people with multiple comorbid NCDs and physical disability. Their awareness of subsidised MoH care was low. MoH care is expected to be unaffordable for many. These people are at increased risk of morbidity and mortality. It is vital that health actors providing care for Syrian refugees take action to reduce their risk, including implementing financial support mechanisms and free healthcare.

중도중복장애아동을 위한 병원파견학급 운영에 관한 유아특수교사의 경험과 요구

The purpose of this study is to investigate the experiences and needs of early childhood special education teachers who have managed hospital dispatch classes for children with severe and multiple disabilities. For this purpose, individual interviews were conducted with 5 early childhood special education teachers who had experience working in a hospital dispatch class in city D. Data collected through individual interviews were analyzed into 3 themes, 7 subcategories, 20 semantic units through qualitative content analysis. The main findings were as follows. First, the participants felt confused when they encountered the unique form of a hospital dispatch class, but they communicated with each other and overcame difficulties, and were operating the class taking advantage of the characteristics of each hospital. Second, the participants felt difficulties in teaching children with severe and multiple disability, in terms of the characteristics of students, managing various curriculum due to students of a wide age range, communication with parents, and emotional aspects such as alienation and loneliness. Third, the participants needed professional manpower supply, guidance and training related to children with severe and multiple disabilities. Based on these results, it was discussed how to support early childhood special education teachers who run hospital-dispatched classes for children with severe and multiple disabilities.

Confounder-adjusted MRI-based predictors of multiple sclerosis disability.

Both aging and multiple sclerosis (MS) cause central nervous system (CNS) atrophy. Excess brain atrophy in MS has been interpreted as "accelerated aging." Current paper tests an alternative hypothesis: MS causes CNS atrophy by mechanism(s) different from physiological aging. Thus, subtracting effects of physiological confounders on CNS structures would isolate MS-specific effects. Standardized brain MRI and neurological examination were acquired prospectively in 646 participants enrolled in ClinicalTrials.gov Identifier: NCT00794352 protocol. CNS volumes were measured retrospectively, by automated Lesion-TOADS algorithm and by Spinal Cord Toolbox, in a blinded fashion. Physiological confounders identified in 80 healthy volunteers were regressed out by stepwise multiple linear regression. MS specificity of confounder-adjusted MRI features was assessed in non-MS cohort (n = 158). MS patients were randomly split into training (n = 277) and validation (n = 131) cohorts. Gradient boosting machine (GBM) models were generated in MS training cohort from unadjusted and confounder-adjusted CNS volumes against four disability scales. Confounder adjustment highlighted MS-specific progressive loss of CNS white matter. GBM model performance decreased substantially from training to cross-validation, to independent validation cohorts, but all models predicted cognitive and physical disability with low p-values and effect sizes that outperform published literature based on recent meta-analysis. Models built from confounder-adjusted MRI predictors outperformed models from unadjusted predictors in the validation cohort. GBM models from confounder-adjusted volumetric MRI features reflect MS-specific CNS injury, and due to stronger correlation with clinical outcomes compared to brain atrophy these models should be explored in future MS clinical trials.

Understanding Health Self-Management Challenges and Needs for Older Adults with and without Mobility and Sensory Disabilities.

Health self-management could be challenging for older adults with disabilities and technology has great potential to support them for managing health activities. Assessing users' needs is a significant technique to develop useful technologies. However, studies overwhelmingly collected and analyzed qualitative data in smaller samples or quantitative data in populations with single type of disability. This study aimed to analyze a national level dataset to assess the frequency of and challenges with managing health activities in older population with and without disabilities and identify potential support solutions to provide guidance for technology interventions. In this study, 4,541 older adults from the National Health and Aging Trends Study were grouped into five sub-groups (non-disability, mobility, vision, hearing, multiple disability). The findings indicated lower participation in wellness activities (e.g., exercise) than disease management activities (e.g., taking medicines, going to medical appointment). Around one tenth of older adults reported difficulty with tracking medicines and 23.4%-64.3% of respondents reported being accompanied during medical appointments. Managing health activities was more challenging for older adults with mobility and multiple disabilities. They were more likely to have difficulties and receive assistance with managing these activities, including accessing online health information. In conclusion, needs of older adults to manage health varied across activities and for people with different types of disabilities. We provide direction for person-centered and tailored interventions to respond to these needs.

Parents’ views on facilitating and inhibiting factors in the development of attachment relationships with their children with severe disabilities

Being confident as attachment figures is not self-evident for parents of children with severe or profound intellectual disabilities (SPID) given the children’s limited clear communicative responses. The current study drew upon the Attachment Strengths and Needs Interview to get an overview of factors that parents identify as influencing their parent-child attachment relationships. Inductive semantic thematic analysis was conducted on 23 semi-structured interviews (including responses of 35 parents). These were the parents of children (1–9 years) with a severe or profound intellectual (or multiple) disability. The results showed that parents mentioned a large number of inhibiting and facilitating factors related to developing attachment relationships with their children. Adopting an ecological systems perspective, these influences were organised in a micro-, meso-, macro-, exo- and chrono-level. This implies that not only factors related to the child (and his/her disability) were mentioned, but also factors related to (amongst others) the parents, the parent-child and family interactions, the broader environment and policy. Concluding, from parents’ perspectives, it seemed that the factors influencing the (development of) attachment relationships can be positive and negative, are versatile, layered in different levels, interconnected and not necessarily linked to their children’s disability. Both generic factors across parents and specific factors, related to individual families, should be taken into account to provide tailored support.

Cost-effectiveness analysis of prolonged-release fampridine to treat walking disability of multiple sclerosis in China.

Objectives: This study evaluates the cost-effectiveness of adding prolonged-release (PR)-fampridine to best supportive care (BSC) versus BSC alone in adult multiple sclerosis patients with walking disability in China. Materials & methods: A hybrid decision tree and Markov model from both the societal and healthcare perspectives were constructed. Parameters were derived from clinical trials of PR-fampridine, published sources and clinical expert interviews. Results: Over a 10-year time horizon, adding PR-fampridine to BSC led to 0.15 quality-adjusted life year (QALY) gain and lower costs, with incremental cost-effectiveness ratios of -238,806 Chinese Yuan/QALY and -113,488 Chinese Yuan/QALY from the societal and healthcare perspectives, respectively. Conclusion: Compared with BSC alone, PR-fampridine plus BSC is considered an economically dominant strategy for the treatment of multiple sclerosis-related walking disability in China.

Innate immune cells and myelin profile in multiple sclerosis: a multi-tracer PET/MR study.

Neuropathological studies have demonstrated distinct profiles of microglia activation and myelin injury among different multiple sclerosis (MS) phenotypes and disability stages. PET imaging using specific tracers may uncover the in vivo molecular pathology and broaden the understanding of the disease heterogeneity. We used the 18-kDa translocator protein (TSPO) tracer (R)-[11C]PK11195 and [11C]PIB PET images acquired in a hybrid PET/MR 3T system to characterize, respectively, the profile of innate immune cells and myelin content in 47 patients with MS compared to 18 healthy controls (HC). For the volume of interest (VOI)-based analysis of the dynamic data, (R)-[11C]PK11195 distribution volume (VT) was determined for each subject using a metabolite-corrected arterial plasma input function while [11C]PIB distribution volume ratio (DVR) was estimated using a reference region extracted by a supervised clustering algorithm. A voxel-based analysis was also performed using Statistical Parametric Mapping. Functional disability was evaluated by the Expanded Disability Status Scale (EDSS), Multiple Sclerosis Functional Composite (MSFC), and Symbol Digit Modality Test (SDMT). In the VOI-based analysis, [11C]PIB DVR differed between patients and HC in the corpus callosum (P = 0.019) while no differences in (R)-[11C]PK11195 VT were observed in patients relative to HC. Furthermore, no correlations or associations were observed between both tracers within the VOI analyzed. In the voxel-based analysis, high (R)-[11C]PK11195 uptake was observed diffusively in the white matter (WM) when comparing the progressive phenotype and HC, and lower [11C]PIB uptake was observed in certain WM regions when comparing the relapsing-remitting phenotype and HC. None of the tracers were able to differentiate phenotypes at voxel or VOI level in our cohort. Linear regression models adjusted for age, sex, and phenotype demonstrated that higher EDSS was associated with an increased (R)-[11C]PK11195 VT and lower [11C]PIB DVR in corpus callosum (P = 0.001; P = 0.023), caudate (P = 0.015; P = 0.008), and total T2 lesion (P = 0.007; P = 0.012), while better cognitive scores in SDMT were associated with higher [11C]PIB DVR in the corpus callosum (P = 0.001), and lower (R)-[11C]PK11195 VT (P = 0.013). Widespread innate immune cells profile and marked loss of myelin in T2 lesions and regions close to the ventricles may occur independently and are associated with disability, in both WM and GM structures.

Lifestyle factors in multiple sclerosis disability progression and silent brain damage: A cross-sectional study

ObjectiveTo determine the association between lifestyle risk factors with 1/ the Multiple Sclerosis Severity Score (MSSS) and 2/ ongoing subclinical brain damage in non-active MS patients on high-efficacy treatment. MethodsCross-sectional study in persons with Multiple Sclerosis (PwMS) investigating lifestyle factors including cognitive reserve (CR), physical activity (PA), smoking status, alcohol use, dietary habits, body mass index (BMI), blood pressure (BP) and cholesterol ratio. Data were collected through validated questionnaires, clinical and laboratory examination. Serum Neurofilament light chain (sNfL) levels were used as a proxy for ongoing brain damage in a subgroup of persons with non-active MS on high-efficacy treatment. Multiple regression analysis (MRA) models explored the relationship between lifestyle factors with the MSSS score and sNfL. Results351 PwMS were included (43.04 ± 11.77 years, 69.8% female). Higher CR and PA were associated with a lower MSSS; overweight or obesity and higher systolic BP with a higher MSSS. The MRA model explained 22.2% of the variance for MSSS (R².255, adjusted R².222). Higher BMI and BP were related to lower sNfL. Twenty-3% (R².279, adjusted R².230) of the variance was explained in the MRA model for sNfL. ConclusionOur study suggests an association between a ‘brain healthy lifestyle’ with disability progression in MS. A cognitive and physical active lifestyle alongside a normal body weight and blood pressure may help to prevent future disability in MS. Longitudinal and interventional research is necessary to gain insight in the causal pathway of these risk factors in preventing disability progression in MS.

특수교육 분야 국내 내러티브 탐구 동향분석(2000~2021)

Objectives The purpose of this study is to provide basic information to researchers who want to carry out narrative inquiry in the field of special education in the future. Methods 51 narrative studies in the field of special education in Korea were analyzed from 2000 to 2021. For analysis, analysis criteria were established through a review of prior research, and based on this, analyzed by journal, publication year, research participants, number of participants, research topics, disability area, number of participants, data formation methods, interview period and number of times. Results As a result of the analysis, 11.8% of the papers to be analyzed were published in ‘Korean Journal of Early Childhood Special Education’ and 9.8% in ‘Journal of Special Education: Theory and Practice,’ with a total of 21.6% published in two journals. The publication started with 1 paper in 2004, 8 papers were published in 2021, confirming the increasing trend of narrative inquiry research. As for the participants, 40.7% of special education teachers and 20.3% of general teachers were involved in the study. the number of participants was 1~3 people accounting for the majority. Most of the research topics were instruction and curriculum operation experiences. In the case of the disability area, 46.4% of the studies dealt with the overall disability without limiting the specific disability area, and 8.9% of the single disability area were visual impairment and Multiple disability, respectively. As for the data formation method, 64.7% of them collected individual interviews and field text together. The interview period showed an even distribution from less than 1 month to 12 months. As for the number of individual interviews, 3~4 times were the most at 27.4%. Conclusions Based on these results, implications for the development of narrative inquiry in the field of special education in the future were discussed.

Assessment of demographic pattern and causative factors in visually disabled persons residing in Gadag district, Karnataka

The study was done to know demographic patterns, causative factors in visually disabled persons residing in Gadag, Karnataka. It is a retrospective study. Both male and female visually disabled people who attended low vision clinic for disability certificate were included even if they had multiple disability. Visual disability &amp;#60; 30% and age &amp;#60; 5 years were excluded. Their demographic data and clinical data is collected and analysed. Total 323 persons were included. 214 (66%) were male, 109(34%) were female persons. Mean age was 37.52 years. Age &amp;#60; 15 years were 38(12%), 15-45 years were 184 (57%) and &amp;#62; 45 years were 101 (31%). 77(24%) belong to the general category, 198(61%) belong to other backward castes, and 48 (15%) belong to sc/st. Among the persons &amp;#62; 15 years, 43 (15%) graduated and 65(23%) were illiterates. Majority (45%) are unemployed. Among the ones who are employed mainly work as music teachers and agricultural coolies.258 (80%) belong to BPL. 255(79%) did not have any comorbidities. 157(49%) had complete blindness. 52% were blind and 48% were belong to low vision category. Refractive errors and retinal pathology were together constituting 54% of the cases. Congenital and hereditary cases constituted 75% of the cases. Visual acuity was alone affected in 36(11%) cases visual fields alone in 15(5%) cases, and both were affected in 271(84%) cases.Visually disabled persons in our study showed male preponderance. Few were employed as music artists and teachers and majority were illiterates.refractive errors and retinal pathology were major reasons.