Disability and Health Journal最新文献_第10页

The disability squeeze: Out-of-pocket expenses and unmet needs for disability-related goods and services in the U.S. 残障挤压：美国残障相关商品和服务的自付费用和未满足需求

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-19 DOI: 10.1016/j.dhjo.2025.101930

Zachary A. Morris , Stephanie Rennane , Nanette Goodman , Daniel Mont , Michelle Ballan , Amber Davis , Stephen McGarity , Brooke Ellison , Ghenet Weldeslassie

Background

Few studies have quantified the higher cost of living with a disability and the extent of unmet needs for disability-related goods and services as experienced by adults with disabilities in the U.S.

Objective

To provide national estimates of total annual out-of-pocket disability-related expenditures, their burden, and the prevalence of unmet needs, and to investigate whether persons with disabilities from underserved communities experience disparate impacts from “the disability squeeze.”

Methods

We designed and fielded a survey in June of 2023 to a nationally representative sample of adults with disabilities through the Understanding America Study, an online panel survey. Multivariate regression analyses examine correlates with out-of-pocket expenditures, the financial burden of the expenditures, and unmet needs.

Results

Among 1168 working-age adults with disabilities, mean annual expenditures on disability-related goods and services was $5341 in June 2023, equating to 20 % of household income. Additionally, 67 % of adults with disabilities reported an unmet need. Controlling for sociodemographic characteristics, adults with disabilities with incomes below the federal poverty level reported significantly lower expenditures (p < .05) but greater financial burden from their out-of-pocket expenses (p < .05). Hispanic persons with disabilities also reported significantly lower expenditures (p < .05) but higher rates of unmet need (p < .05).

Conclusion

Adults with disabilities in the U.S. experience considerable financial strain from their disability-related expenses and sustain high rates of unmet needs with disproportionate impacts identified for those from underserved communities.

背景：很少有研究量化了美国成年残疾人较高的生活成本和未满足的残疾相关商品和服务需求的程度。提供全国每年与残疾相关的自费支出总额、负担和未满足需求的普遍程度的估计，并调查来自服务不足社区的残疾人是否受到“残疾挤压”的不同影响。方法：我们在2023年6月设计并实施了一项调查，通过在线小组调查“了解美国研究”，对全国具有代表性的成年残疾人样本进行了调查。多元回归分析检验了与自费支出、支出的经济负担和未满足需求的相关性。结果：在1168名工作年龄的残疾成年人中，2023年6月，与残疾相关的商品和服务的平均年支出为5341美元，相当于家庭收入的20%。此外，67%的成年残疾人报告需求未得到满足。控制社会人口学特征，收入低于联邦贫困水平的残疾成年人报告的支出显着降低(p结论：美国残疾成年人因残疾相关费用而承受相当大的经济压力，并且维持较高的未满足需求率，对那些来自服务不足社区的人产生了不成比例的影响。

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引用次数: 0

Accessibility and utilisation of reproductive healthcare services among women with disabilities in Lithuania: Insights from a mixed-methods study 立陶宛残疾妇女获得和利用生殖保健服务的情况：来自一项混合方法研究的见解。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-19 DOI: 10.1016/j.dhjo.2025.101928

Ugnė Grigaitė , Simona Aginskaitė , Rokas Uscila

Background

Women with disabilities worldwide face barriers to reproductive healthcare, including accessibility challenges and negative attitudes from medical professionals. These issues reflect multiple intersecting forms of discrimination.

Objective

This study aims to examine how women with various disabilities in Lithuania access reproductive healthcare services, evaluate their experiences with these services, and explore the related attitudes of clinicians.

Methods

This cross-sectional study employs a mixed-methods convergent design. Quantitative and qualitative data were collected through an online survey (n = 154) and two focus groups with medical professionals (n = 12). Statistical and thematic analyses were performed using SPSS and MAXQDA.

Results

Over half of the women rated their reproductive healthcare experiences as average to very bad. Issues spanned preventive, general, pregnancy, labour, childbirth, and postpartum care. Participants with hearing, mobility, physical disabilities, and autism reported more issues, often citing inaccessible infrastructure, lack of Sign language interpretation, written consultations, or Easy-to-Read materials. Intellectual disabilities were also associated with reports of negative attitudes from medical professionals, highlighting widespread communication and support inadequacies.

Conclusions

Improving reproductive healthcare for women with disabilities in Lithuania and globally requires educating medical professionals on the human rights-based model of disability and accessibility. Implementing individual accommodations in healthcare is essential and should involve medical staff, administrators, and policymakers. Ensuring access to sex education for women with disabilities and addressing societal stereotypes about their sexuality and motherhood are also vital. Further research with larger sample sizes is needed to evaluate and enhance the accessibility and quality of reproductive healthcare services for women with disabilities.

背景：世界各地的残疾妇女在生殖保健方面面临障碍，包括无障碍挑战和来自医疗专业人员的消极态度。这些问题反映了多种交叉形式的歧视。目的：本研究旨在调查立陶宛不同残疾妇女获得生殖保健服务的情况，评估她们获得这些服务的经历，并探讨临床医生的相关态度。方法：本横断面研究采用混合方法收敛设计。通过在线调查（n = 154）和两个医疗专业人员焦点小组（n = 12）收集定量和定性数据。采用SPSS和MAXQDA进行统计和专题分析。结果：超过一半的妇女认为她们的生殖保健经历一般到非常差。问题包括预防，一般，怀孕，分娩，分娩和产后护理。听力、行动不便、身体残疾和自闭症的参与者报告了更多的问题，通常是缺乏无障碍的基础设施、缺乏手语翻译、书面咨询或易于阅读的材料。智力残疾还与医疗专业人员的消极态度有关，突出表明普遍缺乏沟通和支持。结论：改善立陶宛和全球残疾妇女的生殖保健需要对医疗专业人员进行基于人权的残疾和无障碍模式的教育。在医疗保健中实施个人住宿是必不可少的，应该包括医务人员、管理人员和决策者。确保残疾妇女获得性教育，消除社会对她们的性行为和母性的刻板印象也至关重要。需要进行更大样本量的进一步研究，以评估和提高残疾妇女获得生殖保健服务的机会和质量。

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引用次数: 0

Associations of dynamic versus static disability with experiences of stigma and mental health 动态与静态残疾与污名和心理健康经历的关联。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-15 DOI: 10.1016/j.dhjo.2025.101927

Elodie Carel, Ashley C. Woodman, Alexander J. Kellogg, Allecia E. Reid

Background

Prior research recognizes that the visibility of an individual's disability is salient to understanding experiences, such that greater visibility is associated with higher levels of stigma and symptoms of anxiety and depression. Yet, the dynamicity of a disability, defined as the extent to which severity of an impairment fluctuates, has been relatively understudied. We conducted the first known quantitative examination of dynamicity.

Hypotheses

We hypothesized that mental health and chronic illnesses would be most frequently characterized as dynamic. We also expected that dynamicity would be associated with greater symptoms of anxiety and depression, and that these relationships would be mediated by greater experiences with discrimination and microaggressions.

Methods

The sample included 125 participants with disabilities who answered the Ableist Microaggression Scale, the Everyday Discrimination Scale, the Generalized Anxiety Disorder Screener-7, the Center for Epidemiological Studies Depression Scale, and an author-created six-question measure of disability dynamicity.

Results

Mental health conditions were rated by participants as highly dynamic. Consistent with our hypotheses, four linear regressions supported that, above and beyond demographic factors and disability visibility, dynamicity predicted more ableist microaggressions, discrimination, anxiety symptoms, and depressive symptoms. In mediation models, discrimination predicted both depressive and anxiety symptoms, whereas ableist microaggressions did not. Confidence intervals further supported that discrimination, but not microaggressions, mediated the relationship of dynamicity with anxiety and depressive symptoms.

Conclusions

Disability dynamicity appears relevant to understanding stigmatizing experiences and resulting anxiety and depression symptoms. Recognition of this association can contribute to advancement of culturally competent mental health care for people with dynamic disabilities.

背景：先前的研究认识到，个人残疾的可见性对于理解经历是显著的，因此，更大的可见性与更高水平的耻辱和焦虑和抑郁症状相关。然而，残疾的动态性（定义为损害的严重程度波动的程度）的研究相对不足。我们进行了已知的第一次动态定量检验。假设：我们假设心理健康和慢性疾病最常见的特征是动态的。我们还预计，活力会与更严重的焦虑和抑郁症状有关，而这些关系将通过更多的歧视和微侵犯经历来调节。方法：样本包括125名残疾参与者，他们回答了Ableist微攻击量表、日常歧视量表、广泛性焦虑障碍筛查-7、流行病学研究中心抑郁量表和作者创建的六题残疾动态量表。结果：心理健康状况被参与者评价为高度动态的。与我们的假设一致，四个线性回归支持，除了人口因素和残疾可见度之外，动态预测更多的残疾主义微侵犯、歧视、焦虑症状和抑郁症状。在中介模型中，歧视可以预测抑郁和焦虑症状，而残疾主义微侵犯则不能。置信区间进一步支持歧视，而不是微侵犯，介导了动态与焦虑和抑郁症状的关系。结论：残疾动态似乎与理解污名化经历和由此产生的焦虑和抑郁症状有关。承认这种联系有助于为动态残疾者提供符合文化要求的精神卫生保健。

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引用次数: 0

Environmental barriers to participation for people with spinal cord injury. The case of Ecuador 脊髓损伤患者参与的环境障碍。厄瓜多尔的例子。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-15 DOI: 10.1016/j.dhjo.2025.101929

Ana Oña , Andrea Pacheco Barzallo , Jaime Toaquiza , Diana Pacheco Barzallo

This study assesses the environmental barriers faced by people with spinal cord injury (SCI) in Ecuador. Using cross-sectional data from the International Spinal Cord Injury Survey (InSCI), we analyzed responses from 510 participants across 23 provinces. We calculated the total environmental barrier index using the Nottwil Environmental Factor Inventory (NEFI) and applied regression analysis to identify key influencing factors. We also examined the severity of barriers by region, comparing rural and urban areas.

Our findings reveal significant disparities. Individuals with lower incomes, those with tetraplegia, and those without a partner reported higher levels of environmental barriers. Rural residents were disproportionately affected. While both urban and rural participants cited long-distance travel and limited public access as top barriers, finances ranked higher in urban settings, whereas home access was more critical in rural areas.

This is the first national study to map modifiable environmental barriers for people with SCI in Ecuador. The results point to clear spatial and economic inequalities, highlighting the need for targeted policies that improve public infrastructure to promote social inclusion.

本研究评估了厄瓜多尔脊髓损伤（SCI）患者面临的环境障碍。利用国际脊髓损伤调查（InSCI）的横断面数据，我们分析了来自23个省份的510名参与者的回答。利用Nottwil环境因子量表（NEFI）计算总环境屏障指数，并运用回归分析方法确定关键影响因素。我们还按地区考察了障碍的严重程度，比较了农村和城市地区。我们的发现揭示了显著的差异。收入较低的人、四肢瘫痪者和没有伴侣的人报告的环境障碍水平较高。农村居民受到的影响尤为严重。尽管城市和农村的参与者都认为长途旅行和公共交通有限是最大的障碍，但在城市环境中，经济状况排在第一位，而在农村地区，家庭交通更为重要。这是厄瓜多尔首个针对脊髓损伤患者可改变的环境障碍进行的全国性研究。研究结果指出了明显的空间和经济不平等，强调需要制定有针对性的政策，改善公共基础设施，促进社会包容。

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引用次数: 0

Employment is associated with manual ability in adults with cerebral palsy – a population-based study 一项基于人群的研究表明，成年脑瘫患者的就业与体力有关。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-10 DOI: 10.1016/j.dhjo.2025.101926

Jenny Hedberg-Graff , Elisabet Rodby-Bousquet , Anna Lindgren , Evgenia Manousaki , Erika Cloodt , Katina Pettersson

Background

Employment rates are lower in adults with cerebral palsy (CP). Even though reduced manual ability is associated with limitations in daily activities, it is unclear whether employment rates are associated with manual ability in adults with CP.

Objective

To analyze regular employment and employment rates (hours/week) in adults with CP and estimate their associations with manual ability relative to age and sex.

Methods

This was a cross-sectional study of adults with CP, aged 20–64 years, from the combined Swedish CP follow-up program and registry. Manual ability was classified as levels I–V using the Manual Ability Classification System (MACS). Logistic regression analysis was used.

Results

The study included 2304 adults with CP (1271 men; median age 28 years, interquartile range 20–64 years). Fewer than one in five (19 %) were employed, and about half (52 %) of these worked full time. The probability of employment in adults with MACS level II was almost half that of those with level I (OR 0.44; 95 % CI 0.34–0.57) and decreased with each MACS level to OR 0.01 (95 % CI 0.00–0.03) for MACS V. Limited manual ability was associated with a lower probability of working full time: ORs of 0.46 (95 % CI 0.30–0.72) for MACS II and 0.29 (95 % CI 0.16–0.56) for MACS III–V.

Conclusion

Limited manual ability in adults with CP impacts both their likelihood of employment and employment rate. Greater manual ability is associated with a higher probability of regular employment and working full time.

背景：成人脑瘫（CP）患者的就业率较低。尽管体力能力下降与日常活动受限有关，但目前尚不清楚成年CP患者的就业率是否与体力能力有关。目的：分析成年CP患者的正常就业和就业率（每周工作小时数），并估计其与年龄和性别之间的体力能力关系。方法：这是一项横断面研究，年龄在20-64岁之间，来自瑞典CP联合随访计划和登记。使用手工能力分类系统（MACS）将手工能力分为I-V级。采用Logistic回归分析。结果：该研究包括2304名成年CP患者(男性1271名；中位年龄28岁，四分位数范围20-64岁)。不到五分之一（19%）的人有工作，其中约一半（52%）是全职工作。MACS水平为II的成年人的就业概率几乎是水平为I的一半(OR 0.44；对于MACS v，随MACS水平的提高而降低至OR 0.01 （95% CI 0.00-0.03）。有限的手工能力与较低的全职工作概率相关：MACS II的OR为0.46 (95% CI 0.30-0.72)， MACS III-V的OR为0.29 （95% CI 0.16-0.56）。结论：成年CP患者体力活动能力的限制影响其就业的可能性和就业率。更强的体力劳动能力与更大的正常就业和全职工作的可能性有关。

{"title":"Employment is associated with manual ability in adults with cerebral palsy – a population-based study","authors":"Jenny Hedberg-Graff , Elisabet Rodby-Bousquet , Anna Lindgren , Evgenia Manousaki , Erika Cloodt , Katina Pettersson","doi":"10.1016/j.dhjo.2025.101926","DOIUrl":"10.1016/j.dhjo.2025.101926","url":null,"abstract":"<div><h3>Background</h3><div>Employment rates are lower in adults with cerebral palsy (CP). Even though reduced manual ability is associated with limitations in daily activities, it is unclear whether employment rates are associated with manual ability in adults with CP.</div></div><div><h3>Objective</h3><div>To analyze regular employment and employment rates (hours/week) in adults with CP and estimate their associations with manual ability relative to age and sex.</div></div><div><h3>Methods</h3><div>This was a cross-sectional study of adults with CP, aged 20–64 years, from the combined Swedish CP follow-up program and registry. Manual ability was classified as levels I–V using the Manual Ability Classification System (MACS). Logistic regression analysis was used.</div></div><div><h3>Results</h3><div>The study included 2304 adults with CP (1271 men; median age 28 years, interquartile range 20–64 years). Fewer than one in five (19 %) were employed, and about half (52 %) of these worked full time. The probability of employment in adults with MACS level II was almost half that of those with level I (OR 0.44; 95 % CI 0.34–0.57) and decreased with each MACS level to OR 0.01 (95 % CI 0.00–0.03) for MACS V. Limited manual ability was associated with a lower probability of working full time: ORs of 0.46 (95 % CI 0.30–0.72) for MACS II and 0.29 (95 % CI 0.16–0.56) for MACS III–V.</div></div><div><h3>Conclusion</h3><div>Limited manual ability in adults with CP impacts both their likelihood of employment and employment rate. Greater manual ability is associated with a higher probability of regular employment and working full time.</div></div>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":"19 1","pages":"Article 101926"},"PeriodicalIF":3.3,"publicationDate":"2025-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144627542","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Analyzing the relationship between ableist microaggressions and well-being in a cross-sectional sample of adults with varied disabilities 分析不同残疾成人的横截面样本中残疾主义者微侵犯与幸福感之间的关系。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-05 DOI: 10.1016/j.dhjo.2025.101925

Whitney M. Morean , Abigail Hayden, Angela Maccarrone, Jacob A. Bentley

Background

In prior research ableist microaggressions have correlated with higher measures of psychological distress. However, research has not yet examined the relationship between ableist microaggressions and well-being as measured not merely by the absence of distressing mental health symptoms, but rather about effective functioning and flourishing.

Objective

The present study addressed this gap by analyzing the relationship between ableist microaggressions and well-being and assessing if different coping strategies moderate the relationship in a sample of adults with varied disabilities.

Methods

A cross-sectional survey was conducted with (n = 132) adults who self-identified as having a health condition that significantly impacts one or more major life activities. Participants were recruited online to complete a Qualtrics survey of measures of well-being, ableist microaggressions, coping, and depression symptoms.

Results

Ableist microaggression scores did not significantly predict well-being. Depression scores and disability visibility predicted well-being. In planned exploratory post-hoc analyses, those who endorsed having a more visible disabilities reported experiencing statistically significant more ableist microaggressions and statistically significant higher well-being scores than those endorsing less visible disabilities.

Conclusions

Consistent with prior literature, depression scores predicted lower well-being. Participants with more visible disabilities reported experiencing more ableist microaggressions and also endorsed higher well-being. This research supports that depression and well-being are independent constructs. Further research needs to examine factors such as, positive disability identity, connection to the disability community, and disability pride, that might contribute to why those with more visible disabilities experience more ableist microaggression while also endorsing higher levels of well-being.

背景：在先前的研究中，残疾微侵犯与较高的心理困扰水平相关。然而，研究还没有检验能力主义者的微侵犯行为和幸福感之间的关系，这种关系不仅是通过缺乏痛苦的心理健康症状来衡量的，而是通过有效的功能和繁荣来衡量的。目的：本研究通过分析残疾微攻击与幸福感之间的关系，并评估不同的应对策略是否会调节这种关系，从而弥补这一空白。方法：对（n = 132）名自认为有严重影响一项或多项主要生活活动的健康状况的成年人进行横断面调查。研究人员在网上招募了参与者，让他们完成一项关于幸福感、能动性微侵犯、应对和抑郁症状的质量调查。结果：Ableist微攻击得分不能显著预测幸福感。抑郁得分和残疾可见度预测了幸福感。在计划的探索性事后分析中，那些认可有更明显残疾的人报告说，与那些认可不太明显残疾的人相比，他们经历了统计上显著更多的残疾主义微侵犯，统计上显著更高的幸福感得分。结论：与先前的文献一致，抑郁得分预示着较低的幸福感。有更多明显残疾的参与者报告说，他们经历了更多的残疾主义微侵犯，也认可了更高的幸福感。本研究支持抑郁和幸福感是相互独立的概念。进一步的研究需要检查诸如积极的残疾认同、与残疾社区的联系以及残疾自豪感等因素，这些因素可能有助于解释为什么那些明显残疾的人经历了更多的残疾主义微攻击，同时也认可了更高水平的幸福感。

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引用次数: 0

Intersecting disability and race implicit attitudes of health care professionals 卫生保健专业人员的残疾和种族隐性态度的交叉。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-04 DOI: 10.1016/j.dhjo.2025.101924

Carli Friedman

Background

Focusing on intersectionality is necessary not only to better understand how oppression impacts people, but also to reduce the harmful impacts of discrimination. While past research has separately found most health care professionals are implicitly (unconsciously) biased against disability, and implicitly biased against people of color, and some also self-report explicit (conscious) biases, to our knowledge, there is little to no research about health care professionals' intersectional attitudes. Yet, we do know that health care professionals’ attitudes and biases impact the quality of care they provide and the outcomes of those they serve. Thus, it is critical to uncover more information about their explicit and implicit attitudes, especially intersectional attitudes.

Objective

The aim of this study was to examine the intersecting disability and race attitudes of health care professionals.

Methods

We had 784 health care professionals complete the Intersecting Disability and Race Attitudes Implicit Association Test (IDRA-IAT) and an explicit measure (January–March 2025).

Results

Health care professionals implicitly preferred nondisabled white people (M = 0.18) the most, then disabled white people (M = 0.08), and then disabled (M = −0.12) and nondisabled people of color (M = −0.14) the least. There was a significant gap between participants’ explicit and implicit attitudes, with self-report explicit attitudes showing an opposite pattern as implicit attitudes, suggesting health care professionals may be unaware of the scope of their implicit biases.

Conclusions

Everyone deserves high quality healthcare; until we reduce health care professionals’ biases, health equity will not be possible.

背景：关注交叉性不仅对于更好地理解压迫如何影响人们，而且对于减少歧视的有害影响是必要的。虽然过去的研究分别发现，大多数医疗保健专业人员对残疾人有隐性（无意识）偏见，对有色人种也有隐性偏见，有些人还自我报告有显性（有意识）偏见，但据我们所知，关于医疗保健专业人员的交叉态度的研究很少或根本没有。然而，我们确实知道，卫生保健专业人员的态度和偏见会影响他们提供的护理质量和他们所服务的人的结果。因此，揭示更多关于他们的外显和内隐态度，特别是交叉态度的信息是至关重要的。目的：本研究的目的是探讨卫生保健专业人员对残疾和种族的交叉态度。方法：对784名卫生保健专业人员进行残疾与种族态度交叉内隐关联测验（IDRA-IAT）和外显测验（2025年1 - 3月）。结果：卫生保健专业人员隐性偏好非残疾白人（M = 0.18）最多，其次是残疾白人（M = 0.08），其次是残疾（M = -0.12）和非残疾有色人种（M = -0.14）最少。参与者的外显态度和内隐态度之间存在显著差异，自我报告的外显态度与内隐态度呈现相反的模式，这表明医护人员可能没有意识到他们的内隐偏见的范围。结论：人人都应享有高质量的医疗服务；除非我们减少卫生保健专业人员的偏见，否则不可能实现卫生公平。

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引用次数: 0

A shared journey and a call for action for persons living with inherited retinal diseases 遗传性视网膜疾病患者的共同旅程和行动呼吁。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-03 DOI: 10.1016/j.dhjo.2025.101921

Qin Xiang Ng , Hwei Wuen Chan , Gerald Choon Huat Koh

Two recently published qualitative studies—conducted in Australia and Singapore—coincided with Rare Disease Day 2025, and they delved into the profound psychosocial impacts of inherited retinal diseases (IRDs) among working-age adults. Both studies independently identified similar themes related to identity disruption, social invisibility, emotional turbulence and the significant challenges of adapting to progressive vision loss. This serendipitous alignment highlights the universal challenges and struggles of IRD across distinct cultures, and the findings illuminate how IRDs transcend medical diagnoses, demanding coordinated psychosocial support and policy-level interventions. This commentary reflects upon the implications for healthcare and society at large, and urges a clarion call to action. Improving psychosocial support, enhancing public awareness and advocating for empathetic care models and inclusive policies for persons affected by IRDs are imperatives. In doing so, we can build more equitable systems that address the realities of IRDs and empower individuals to lead fulfilling lives despite their vision impairment.

最近发表的两项定性研究——在澳大利亚和新加坡进行——恰逢2025年罕见病日，他们深入研究了遗传性视网膜疾病（IRDs）对工作年龄成年人的深刻心理社会影响。两项研究都独立地确定了与身份破坏、社会隐形、情绪动荡以及适应进行性视力丧失的重大挑战相关的类似主题。这种偶然的一致性突出了不同文化中IRD的普遍挑战和斗争，研究结果阐明了IRD如何超越医学诊断，需要协调的社会心理支持和政策层面的干预。这篇评论反映了对医疗保健和整个社会的影响，并敦促采取行动。改善社会心理支持、提高公众意识、倡导同情关怀模式和为受ird影响的人制定包容性政策是当务之急。通过这样做，我们可以建立更公平的制度，解决盲人的现实问题，并使个人能够在视力受损的情况下过上充实的生活。

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引用次数: 0

Influences on bone mineral density among adults with mobility Limitations: Results from a national survey 活动受限的成年人对骨密度的影响：来自一项全国性调查的结果。

IF 3.3 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-02 DOI: 10.1016/j.dhjo.2025.101923

Joy Haizelden , Linda Knol , Lori Turner

Background

Risk factors for low bone mineral density (BMD) are widely recognized in the general population; however, influences on BMD in people with mobility limitations is not well understood.

Objective

To examine factors that influence BMD in US adults with mobility limitations, including demographic, anthropometric, and physical activity measures.

Methods

Cross-sectional analysis of NHANES 2013–2018 data, including 421 adults aged ≥20 years with self-reported walking difficulties. Risk factors for low bone mineral density were used including physical activity. Physical activity was assessed using the Global Physical Activity Questionnaire and recoded as meeting or not meeting the guidelines. Total BMD was measured with a dual-energy X-ray absorptiometry scan. Multiple linear regression was used to assess for differences in total BMD.

Results

BMD was significantly higher for males versus females (p < .001), Non-Hispanic blacks versus Non-Hispanic whites (p = .004), individuals who were overweight or obese compared to a people with healthy weights (p = .02, p < .001, respectively). As age increased, BMD decreased. No significant difference in BMD was found between participants meeting physical activity guidelines (1.084 ± 0.012 g/cm²) and those who did not meet guidelines (1.076 ± 0.011 g/cm²; p = .99).

Conclusion

In adults with mobility limitations, traditional demographic and anthropometric risk factors significantly influenced BMD. Calcium intake, vitamin D intake and physical activity guideline adherence were not significant. These findings suggest the need for targeted research to more fully understand bone health determinants in this population.

背景：低骨密度（BMD）的危险因素在普通人群中被广泛认识；然而，活动受限人群对骨密度的影响尚不清楚。目的：研究影响美国行动受限成人骨密度的因素，包括人口统计学、人体测量学和身体活动测量。方法：对NHANES 2013-2018年数据进行横断面分析，包括421名年龄≥20岁、自述行走困难的成年人。低骨密度的危险因素包括体力活动。使用全球身体活动问卷对身体活动进行评估，并将其记录为符合或不符合指南。用双能x线吸收仪扫描测量总骨密度。采用多元线性回归评估总骨密度的差异。结果：男性的骨密度明显高于女性（p < 2），不符合指南者(1.076±0.011 g/cm2；p = .99)。结论：在活动受限的成年人中，传统的人口统计学和人体测量学危险因素显著影响骨密度。钙摄入量、维生素D摄入量和体力活动指南依从性无显著性差异。这些发现表明，需要进行有针对性的研究，以更充分地了解这一人群的骨骼健康决定因素。

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引用次数: 0

Unmet needs for long-term services and supports and associations with health outcomes 未满足的长期服务和支持需求以及与健康结果的关联。

IF 3.7 2区医学 Q1 HEALTH CARE SCIENCES & SERVICES

Disability and Health Journal

Pub Date : 2025-07-01 DOI: 10.1016/j.dhjo.2024.101678

Joseph Caldwell, Elad Daniels, Kaitlin Stober

Background

The availability of population-level data on unmet needs for long-term services and supports (LTSS) is limited at state and national levels. Data on unmet LTSS needs can improve our understanding of disparities and relationships with health outcomes.

Objective

1) Explore differences in unmet LTSS needs by socio-demographic characteristics, including age, sex, race/ethnicity, metropolitan status, sexual orientation, and socio-economic status; and 2) Examine associations between unmet LTSS needs and health/preventative healthcare outcomes.

Methods

We used the 2021 Behavioral Risk Factor Surveillance System (BRFSS) core survey and state-added LTSS questions to analyze a sample of adults with LTSS needs in Texas (N = 1232). We compared socio-demographic characteristics between adults with and without unmet LTSS needs. We conducted modified-Poisson regressions to estimate unadjusted and adjusted risk ratios (with 95 % confidence intervals) for each health/preventative healthcare outcome among adults with unmet LTSS needs. Health outcomes included health status, healthy days-physical health, healthy days-mental health, suicide ideation, and multiple chronic conditions. Preventative healthcare outcomes included routine check-up and flu vaccine.

Results

Among adults with LTSS needs, those with unmet LTSS needs were statistically significantly more likely to be younger (age<65), female, higher educational attainment, and non-straight sexual orientation. After controlling for socio-demographic variables, having unmet needs for LTSS was significantly associated with poorer physical and mental health outcomes and suicide ideation.

Conclusions

Improved data collection on unmet needs LTSS can assist policymakers, particularly at the state level in guiding reforms to reduce disparities in access to home and community-based services (HCBS) and improve health outcomes.

背景：在州和国家层面，有关未满足的长期服务和支持（LTSS）需求的人口级数据十分有限。关于未满足的长期服务和支持需求的数据可以提高我们对差异以及与健康结果之间关系的认识。目标：1）根据社会人口特征（包括年龄、性别、种族/民族、大都市地位、性取向和社会经济地位）探讨未满足的长期服务和支持需求的差异；2）研究未满足的长期服务和支持需求与健康/预防性医疗保健结果之间的关联：我们使用 2021 年行为风险因素监测系统（BRFSS）核心调查和州附加的 LTSS 问题，对德克萨斯州有 LTSS 需求的成年人样本（N = 1232）进行了分析。我们比较了有和没有未满足 LTSS 需求的成年人的社会人口特征。我们进行了修正的泊松回归，以估计未满足 LTSS 需求的成年人中每种健康/预防性医疗保健结果的未调整和调整风险比（含 95 % 置信区间）。健康结果包括健康状况、健康天数（身体健康）、健康天数（心理健康）、自杀倾向和多种慢性疾病。预防性保健结果包括常规体检和接种流感疫苗：结果：在有长期医疗服务需求的成年人中，有长期医疗服务需求但未得到满足的人在统计上更有可能更年轻（年龄）：改进有关未满足的 LTSS 需求的数据收集工作有助于政策制定者，尤其是州一级的政策制定者指导改革，以减少在获得家庭和社区服务（HCBS）方面的差距并改善健康状况。

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