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Multiple Sclerosis and Related Disorders Jun 2024The Multiple Sclerosis Walking Scale-12 (MSWS-12) has typically been delivered through paper-and-pencil or computer-based administration.
BACKGROUND
The Multiple Sclerosis Walking Scale-12 (MSWS-12) has typically been delivered through paper-and-pencil or computer-based administration.
PURPOSE
This study examined the validity of inferences from scores derived via a telephone administration of the MSWS-12 applied as part of screening of participants with walking dysfunction into a clinical trial of exercise training in MS.
METHOD
The MSWS-12 was administered on two occasions separated by approximately 2 weeks through the telephone and then in-person (i.e., computer-based administration). Participants further completed the Patient Determined Disease Steps (PDDS) scale, timed 25-foot walk (T25FW), six-minute walk (6MW), Modified Fatigue Impact Scale (MFIS), and Multiple Sclerosis Impact Scale-29 (MSIS-29), and underwent a neurological exam for generating an expanded disability status scale (EDSS) score. The primary set of data (Full Sample) for analyses included all persons who passed the telephone screening for inclusion with MSWS-12 scores between 25 and 75 (N = 374). The secondary set of data (Truncated Sample) included only persons with MSWS-12 scores between 25 and 75 for both the telephone and computer administrations of the MSWS-12 (N = 248).
RESULTS
The results in the Full Sample indicated a difference in overall and item levels scores between the telephone and computer data collections, and the computer version had higher internal consistency and stronger unidimensionality. Nevertheless, MSWS-12 scores from both modes of administration had comparable correlations with the T25FW, 6MW, EDSS, PDDS, MFIS, and MSIS-29, but the correlation between the two MSWS-12 administrations did not approach unity. There was a systematic difference in scores between telephone and computer administrations across levels of walking dysfunction based on a Bland-Altman plot, and the difference was predicted by MFIS physical, 6MW, and EDSS scores. The comparison of results between the Full and Truncated Samples suggested that the primary analysis might have been influenced by the larger range of scores on the computer than telephone administrations of the MSWS-12.
CONCLUSION
The telephone administration of the MSWS-12 provides an efficient and cost-effective measure of walking dysfunction in persons with MS.
PubMed: 38889558
DOI: 10.1016/j.msard.2024.105715 -
Journal of Medical Internet Research Jun 2024Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various...
Families of individuals with neurodevelopmental disabilities or differences (NDDs) often struggle to find reliable health information on the web. NDDs encompass various conditions affecting up to 14% of children in high-income countries, and most individuals present with complex phenotypes and related conditions. It is challenging for their families to develop literacy solely by searching information on the internet. While in-person coaching can enhance care, it is only available to a minority of those with NDDs. Chatbots, or computer programs that simulate conversation, have emerged in the commercial sector as useful tools for answering questions, but their use in health care remains limited. To address this challenge, the researchers developed a chatbot named CAMI (Coaching Assistant for Medical/Health Information) that can provide information about trusted resources covering core knowledge and services relevant to families of individuals with NDDs. The chatbot was developed, in collaboration with individuals with lived experience, to provide information about trusted resources covering core knowledge and services that may be of interest. The developers used the Django framework (Django Software Foundation) for the development and used a knowledge graph to depict the key entities in NDDs and their relationships to allow the chatbot to suggest web resources that may be related to the user queries. To identify NDD domain-specific entities from user input, a combination of standard sources (the Unified Medical Language System) and other entities were used which were identified by health professionals as well as collaborators. Although most entities were identified in the text, some were not captured in the system and therefore went undetected. Nonetheless, the chatbot was able to provide resources addressing most user queries related to NDDs. The researchers found that enriching the vocabulary with synonyms and lay language terms for specific subdomains enhanced entity detection. By using a data set of numerous individuals with NDDs, the researchers developed a knowledge graph that established meaningful connections between entities, allowing the chatbot to present related symptoms, diagnoses, and resources. To the researchers' knowledge, CAMI is the first chatbot to provide resources related to NDDs. Our work highlighted the importance of engaging end users to supplement standard generic ontologies to named entities for language recognition. It also demonstrates that complex medical and health-related information can be integrated using knowledge graphs and leveraging existing large datasets. This has multiple implications: generalizability to other health domains as well as reducing the need for experts and optimizing their input while keeping health care professionals in the loop. The researchers' work also shows how health and computer science domains need to collaborate to achieve the granularity needed to make chatbots truly useful and impactful.
Topics: Humans; Neurodevelopmental Disorders; Internet; Software
PubMed: 38888947
DOI: 10.2196/50182 -
Journal of Intellectual Disability... Jun 2024Neurodevelopmental conditions frequently co-occur. The aim of this paper was to determine whether there is a cumulative association between (1) the number of...
BACKGROUND
Neurodevelopmental conditions frequently co-occur. The aim of this paper was to determine whether there is a cumulative association between (1) the number of neurodevelopmental conditions, specifically hyperkinetic disorder (hereafter referred to as attention deficit hyperactivity disorder), autism spectrum disorder (hereafter referred to as autism) and intellectual disability, and (2) behavioural and socio-emotional problems and the level of clinician-rated functioning for young males and females.
METHODS
In this cross-sectional study, diagnostic information, caregiver-rated behavioural and socio-emotional data (as conceptualised by the Strengths and Difficulties Questionnaire) and clinician-rated functioning scores (as conceptualised by the Children's Global Assessment Scale) were extracted from electronic patient records for 2768 young people aged 3-17 years (mean = 11.55, SD = 3.46). All data were extracted at baseline, that is, at the time the young person was diagnosed with attention deficit hyperactivity disorder, autism and/or an intellectual disability. Ordinal regression analyses tested associations between the number of neurodevelopmental conditions met (i.e. 1, 2 or 3) and behavioural and socio-emotional outcomes and functioning.
RESULTS
After controlling for age and biological sex, the number of neurodevelopmental conditions was associated with higher levels of inattention/hyperactivity and peer problems, lower levels of prosocial behaviour and poorer clinician-rated functioning. Although these findings were consistent for males, a cumulative association was not identified for females, except for clinician-rated functioning.
CONCLUSIONS
For young people, the presence of multiple neurodevelopmental conditions may have a cumulative impact across domains, but this may differ between males and females.
PubMed: 38887190
DOI: 10.1111/jir.13170 -
Scientific Reports Jun 2024Low 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...
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.
Topics: Humans; Brazil; Aged; Male; Vitamin D Deficiency; Female; Depression; Activities of Daily Living; Cross-Sectional Studies; Independent Living; Vitamin D; Disabled Persons; Longitudinal Studies; Middle Aged; Aged, 80 and over
PubMed: 38886459
DOI: 10.1038/s41598-024-62418-z -
Health Care Expenses and Financial Hardship Among Medicare Beneficiaries With Functional Disability.JAMA Network Open Jun 2024Medicare beneficiaries with functional disabilities often require more medical care, leading to substantial financial hardship. However, the precise magnitude and...
IMPORTANCE
Medicare beneficiaries with functional disabilities often require more medical care, leading to substantial financial hardship. However, the precise magnitude and sources of this hardship remain unknown.
OBJECTIVES
To quantify the financial burden from health care expenses by functional disability levels among Medicare beneficiaries.
DESIGN, SETTING, AND PARTICIPANTS
This cross-sectional study used data, including demographic and socioeconomic characteristics, health status, and health care use, from a nationally representative sample of Medicare beneficiaries from the 2013 to 2021 Medical Expenditure Panel Survey. Functional disability was measured using 6 questions and categorized into 3 levels: none (no difficulties), moderate (1-2 difficulties), and severe (≥3 difficulties). Data were analyzed from December 2023 to March 2024.
MAIN OUTCOMES AND MEASURES
Financial hardship from health care expenses was assessed using objective measures (annual out-of-pocket spending, high financial burden [out-of-pocket spending exceeding 20% of income], and catastrophic financial burden [out-of-pocket spending exceeding 40% of income]) and subjective measures (difficulty paying medical bills and paying medical bills over time). We applied weights to produce results representative of national estimates.
RESULTS
The sample included 31 952 Medicare beneficiaries (mean [SD] age, 71.1 [9.7] years; 54.6% female). In weighted analyses, severe functional disability was associated with a significantly higher financial burden from health care expenses, with out-of-pocket spending reaching $2137 (95% CI, $1943-$2330) annually. This exceeded out-of-pocket spending for those without functional disability by nearly $700 per year ($1468 [95% CI, $1311-$1625]) and for those with moderate functional disability by almost $500 per year ($1673 [95% CI, $1620-$1725]). The primary factors that played a role in this difference were home health care ($399 [95% CI, $145-$651]) and equipment and supplies ($304 [95% CI, $278-$330]). Beneficiaries with severe functional disability experienced significantly higher rates of both high and catastrophic financial burden than those without disability and those with moderate disability (13.2% [12.2%-14.1%] vs 9.1% [95% CI, 8.6%-9.5%] and 9.4% [95% CI, 9.1%-9.7%] for high financial burden, respectively, and 8.9% [95% CI, 7.8%-10.1%] vs 6.4% [95% CI, 6.1%-6.8%] and 6.0% [95% CI, 5.6%-6.4%] for catastrophic financial burden, respectively). Similar associations were observed in subjective financial hardship. For example, 11.8% (95% CI, 10.3%-13.3%) of those with severe functional disability experienced problems paying medical bills, compared with 7.7% (95% CI, 7.6%-7.9%) and 9.3% (95% CI, 9.0%-9.6%) of those without functional disability and those with moderate functional disability, respectively. Notably, there were no significant differences in financial hardship among those with Medicaid based on functional disability levels.
CONCLUSIONS AND RELEVANCE
In this cross-sectional study of Medicare beneficiaries, those with severe functional disability levels experienced a disproportionate burden from health care costs. However, Medicaid played a pivotal role in reducing the financial strain. Policymakers should explore interventions that effectively relieve the financial burden of health care in this vulnerable population.
Topics: Humans; United States; Medicare; Female; Male; Cross-Sectional Studies; Aged; Disabled Persons; Health Expenditures; Financial Stress; Aged, 80 and over; Cost of Illness
PubMed: 38884997
DOI: 10.1001/jamanetworkopen.2024.17300 -
Bulletin of the History of Medicine 2024Over the second half of the nineteenth century, thousands of Americans were admitted to schools for so-called idiotic children, later known as institutions for the...
Over the second half of the nineteenth century, thousands of Americans were admitted to schools for so-called idiotic children, later known as institutions for the feebleminded and linked to the Eugenics movement. While idiocy is often presumed to be the antecedent of intellectual disability, an analysis of the stories of three hundred children admitted to one such institution over a forty-year period demonstrates an unexpected diversity of appearances, abilities, and behaviors. Within the walls of the institution, idiocy was composed of children whose perceived abilities deviated from the expectations of their social position. Families further shaped the diagnosis of idiocy by negotiating the timing of admission for their children, influenced not only by personal factors, but by shifting educational and employment opportunities, and cultural tolerance of diversity. Consequently, idiocy became the broadest descriptor of disability during the nineteenth century.
Topics: History, 19th Century; Humans; Child; United States; Disabled Children; Intellectual Disability; Eugenics; Adolescent
PubMed: 38881470
DOI: 10.1353/bhm.2024.a929784 -
Disability and Health Journal Jun 2024Disability-focused health professions education must evolve to portray the lives of disabled patients, lived experiences of ableism, and disability history more...
BACKGROUND
Disability-focused health professions education must evolve to portray the lives of disabled patients, lived experiences of ableism, and disability history more accurately and authentically. Methods of education that utilize first-person perspectives of disabled people to deliver authentic representations are limited in the current literature.
OBJECTIVE
To explore first-year medical and physician assistant students' reflections on healthcare access, healthcare providers' roles, and barriers to health equity for patients with disabilities after watching an exemplar, first-person perspective documentary titled Crip Camp: A Disability Revolution.
METHODS
A three-part, student-created disability curriculum "Introduction to Disability and Anti-Ableist Healthcare" was offered as an elective for first-year medical students during the 2021-2022 and 2022-2023 academic years. The disability curriculum was required for first-year physician assistant students during the 2023-2024 academic year. One curricular component was watching Crip Camp: A Disability Revolution and completing a 500-750-word reflective essay. Qualitative thematic analysis was used to organize essay responses.
RESULTS
Seven major themes emerged in the students' essays highlighting the importance of disability-focused education, the necessity of understanding the historical context and mistreatment of people with disabilities, limitations of health policies and health systems, the role of trainees and providers, and intersectionality. Themes were aligned with the socioecological model and disability consciousness to reflect healthcare delivery and education benefit, respectively.
CONCLUSION
Crip Camp: A Disability Revolution was an effective educational intervention to provide and apply knowledge in reflecting on healthcare experiences of people with disabilities. The themes have implications for health professions education and health care delivery.
PubMed: 38879413
DOI: 10.1016/j.dhjo.2024.101652 -
Lancet (London, England) Jun 2024Persistent physical symptoms (synonymous with persistent somatic symptoms) is an umbrella term for distressing somatic complaints that last several months or more,... (Review)
Review
Persistent physical symptoms (synonymous with persistent somatic symptoms) is an umbrella term for distressing somatic complaints that last several months or more, regardless of their cause. These symptoms are associated with substantial disability and represent a major burden for patients, health-care professionals, and society. Persistent physical symptoms can follow infections, injuries, medical diseases, stressful life events, or arise de novo. As symptoms persist, their link to clearly identifiable pathophysiology often weakens, making diagnosis and treatment challenging. Multiple biological and psychosocial risk factors and mechanisms contribute to the persistence of somatic symptoms, including persistent inflammation; epigenetic profiles; immune, metabolic and microbiome dysregulation; early adverse life experiences; depression; illness-related anxiety; dysfunctional symptom expectations; symptom focusing; symptom learning; and avoidance behaviours, with many factors being common across symptoms and diagnoses. Basic care consists of addressing underlying pathophysiology and using person-centred communication techniques with validation, appropriate reassurance, and biopsychosocial explanation. If basic care is insufficient, targeted psychological and pharmacological interventions can be beneficial. A better understanding of the multifactorial persistence of somatic symptoms should lead to more specific, personalised, and mechanism-based treatment, and a reduction in the stigma patients commonly face.
Topics: Humans; Medically Unexplained Symptoms; Somatoform Disorders; Risk Factors
PubMed: 38879263
DOI: 10.1016/S0140-6736(24)00623-8 -
BMC Health Services Research Jun 2024Two out of three family caregivers are female. However, current trends show that men are more likely to undertake caregiving duties, yet female caregivers report a...
BACKGROUND
Two out of three family caregivers are female. However, current trends show that men are more likely to undertake caregiving duties, yet female caregivers report a higher burden. This paper analyzed data from long-term family caregivers to determine whether, under similar circumstances, gender differences in caregiving persist. We examined whether the observed gender gap affects caregivers' satisfaction with their health and quality of life.
METHODS
We analyze cross-sectional data from family caregivers of persons with spinal cord injury (SCI) in Switzerland. The data provides comprehensive information about the time and type of weekly tasks family caregivers undertake. To determine differences in caregiving related to gender, we balanced the characteristics of the caregiver and the cared-for person using a propensity score kernel matching. With the balanced sample, we estimated how the observed differences in caregiving varied across cohorts using a Poisson regression.
RESULTS
Under similar circumstances, male and female caregivers invest similar time in caregiving. This result holds for 21 caregiving tasks, except for household chores, where women spent, on average, four more hours per week than male caregivers. Despite these differences, female caregivers report a quality of life and satisfaction with their health that is similar to that of male caregivers.
CONCLUSION
Gender differences in caregiving narrow over time, except for household chores, where female caregivers continue to spend significantly more hours than male caregivers. Measures designed for family caregivers must consider these gender differences, as the support needs of female caregivers can differ greatly from those of male caregivers.
Topics: Humans; Female; Male; Caregivers; Cross-Sectional Studies; Middle Aged; Quality of Life; Sex Factors; Switzerland; Adult; Spinal Cord Injuries; Aged; Personal Satisfaction
PubMed: 38877542
DOI: 10.1186/s12913-024-11191-w -
BMC Health Services Research Jun 2024To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease...
BACKGROUND
To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease (COPD)), it is imperative that care is of high quality and suitable to patients' needs. Patients with intellectual disabilities (ID) differ from the average patient population in general practice because of their limitations in adaptive behaviour and intellectual functioning, and concomitant difficulties recognising and reacting to disease symptoms, proactively searching health information, and independently managing diseases effectively. Because of these differences, information on their care needs is essential for suitable chronic disease management (CDM). Inadequate recognition of the care needs of this vulnerable population may hamper the harmonisation of evidence-based and person-centred care, compounded by issues such as stigma, misconceptions, and diagnostic overshadowing. This study therefore aimed to explore the needs of patients with ID from perspectives of both patients and of healthcare providers (HCPs) in the context of CDM in general practice.
METHODS
This qualitative study recruited patients with ID for face-to-face individual interviews and HCPs for focus groups. With the Chronic Care Model as the underlying framework, semi-structured interviews and focus-group guides were defined to explore patients' care needs and HCPs' perspectives. All interviews and focus groups were audio-recorded and transcribed verbatim. Using Atlas.ti software, data were analysed using reflexive thematic analysis.
RESULTS
Between June and September 2022, 14 patients with ID and cardiovascular disease, diabetes mellitus type 2, and/or asthma/COPD were interviewed; and 32 general practitioners and practice nurses participated in seven focus groups. We identified six care needs underpinning suitable CDM: trusting relationship between patient and HCP; clear expectations about the CDM process; support in disease management; directive decision-making; support in healthy lifestyle; accessible medical information.
CONCLUSIONS
This vulnerable patient population has complex care needs that must be acknowledged for suitable CDM. Although HCPs largely recognise these needs, organisational factors and lack of training or experience with patients with ID hamper HCPs' ability to fully adjust care provision to these needs. Access to, and knowledge of, easy-language information on chronic diseases and communication guidelines could aid HCPs to facilitate patients in managing their diseases more adequately.
Topics: Humans; Chronic Disease; Male; Netherlands; Female; Intellectual Disability; Middle Aged; General Practice; Qualitative Research; Focus Groups; Adult; Aged; Health Services Needs and Demand; Needs Assessment; Interviews as Topic; Pulmonary Disease, Chronic Obstructive; Diabetes Mellitus, Type 2; Asthma
PubMed: 38877510
DOI: 10.1186/s12913-024-11155-0