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Introduction Global and national guidelines recommend the integration of care for HIV and other chronic conditions to improve individual and public health outcomes. South Africa's differentiated service delivery (DSD) models extend beyond HIV care, relying on pickup points that also distribute hypertension (HTN) medications. We assessed the alignment between antiretroviral treatment (ART) and HTN medication collection visits and dispensing intervals as an indicator of integration progress. Methods The AMBIT project conducted a SENTINEL survey across 18 public clinics in three South African districts between September 2022 and April 2023, enrolling adult clients ≥ 6 months on ART. We recruited up to 180 clients across each model of care: conventional care‐not DSD eligible (conventional‐not‐eligible); conventional care‐DSD eligible but not enrolled (conventional‐eligible); facility‐ (FAC‐PuP) and external (EX‐PuP) pickup points. Healthcare interaction data were extracted from paper and electronic sources for clients with a 12‐month observation period. We analysed both self‐reported alignment and actual visit data. We estimated the number and proportion of HTN visits aligned with ART dispensing. Log‐binomial regression estimated adjusted risk ratios (ARR) to assess the association with a higher visit burden (> 5 interactions). Results Of 724 enrolled, 644 (90%) client records were successfully linked (76% female; median age 42; 15% Conventional‐not‐eligible; 17% Conventional‐eligible; 18% FAC‐PuP; 28% EX‐PuP). Among these, 85 (13%) with HTN (81 self‐reported, 4 from medical records), self‐reported 94% and 95% aligned facility visits and medication pickups, respectively. Visit data was retrieved for self‐reported HTN diagnoses. Of 477 visits for HIV/HTN comorbid clients, 83% (395) dispensed both ART and HTN medication, and 97% had aligned dispensing durations (Conventional‐not‐eligible 97%, Conventional‐eligible 95%, FAC‐PuP 98%, EX‐PuP 100%). Comorbid clients had a similar visit burden to ART‐only clients (ARR 1.05, 95% CI: 0.80−1.39). FAC‐PuP (ARR 0.55, 95% CI: 0.40−0.78) and EX‐PuP (ARR 0.75, 95% CI: 0.57−0.98) clients were less likely than Conventional‐E clients to have high annual visit burden. Conclusions Aligning medication visits and dispensing for HIV and other chronic diseases marks an initial step towards integrated service delivery. Our results demonstrate achievable medication visit alignment without increased visit burden for comorbid clients and those in DSD models, suggesting that HIV‐HTN integration is feasible within DSD models, matching client preferences for comprehensive care.

This article offers two theoretical contributions. First, we develop the concept of administrative burden as an important variable in understanding how citizens experience the state. Administrative burden is conceptualized as a function of learning, psychological, and compliance costs that citizens experience in their interactions with government. Second, we argue that administrative burden is a venue of politics, that is, the level of administrative burden placed on an individual, as well as the distribution of burden between the state and the individual, will often be a function of deliberate political choice rather than simply a product of historical accident or neglect. The opaque nature of administrative burdens may facilitate their use as forms of \"hidden politics,\" where significant policy changes occur without broad political consideration. We illustrate this argument via an analysis of the evolution of Medicaid policies in the state of Wisconsin. Across three Governorships, the level of burden evolved in ways consistent with the differing political philosophies of each Governor, with federal actors playing a secondary but important role in shaping burden in this intergovernmental program. We conclude by sketching a research agenda centered on administrative burden.

Background Providing informal care for a person with Parkinson’s disease (PD) can be a demanding process affecting several dimensions of a caregiver’s life and potentially causing caregiver burden. Despite the emerging literature on caregiver burden in people with PD, little is known about the inter-relationship between quantitative and qualitative findings. Filling this knowledge gap will provide a more holistic approach to develop and design innovations aiming at reducing or even preventing caregiver burden. This study aimed to characterize the determinants of caregiver burden among informal caregivers of persons with PD, in order to facilitate the development of tailored interventions that reduce caregiver burden. Methods We conducted a cross-sectional study in The Netherlands using a sequential mixed methods approach, entailing a quantitative study of 504 persons with PD and their informal caregivers as well as a qualitative study in a representative subsample of 17 informal caregivers. The quantitative study included a standardized questionnaire of caregiver burden (Zarit Burden Inventory) and patient-related (Beck Depression Inventory, State-Trait Anxiety Inventory, Acceptance of Illness Scale, MDS-Unified Parkinson’s Disease Rating Scale part II on motor functions in daily life, Self-assessment Parkinson’s Disease Disability Score), caregiver-related (Brief Coping Orientation to Problems Experience Inventory, Caregiver Activation Measurement, Multidimensional Scale of Perceived Social Support) and interpersonal determinants (sociodemographic variables including among others gender, age, education, marital status and working status). The qualitative study consisted of semi-structured interviews. Multivariable regression and thematic analysis were used to analyse quantitative and qualitative data, respectively. Results A total of 337 caregivers were women (66.9%), and the majority of people with PD were men ( N  = 321, 63.7%). The mean age of persons with PD was 69.9 (standard deviation [SD] 8.1) years, and the mean disease duration was 7.2 (SD 5.2) years. A total of 366 (72.6%) persons with PD had no active employment. The mean age of informal caregivers was 67.5 (SD 9.2) years. Most informal caregivers were female (66.9%), had no active employment (65.9%) and were the spouse of the person with PD (90.7%). The mean Zarit Burden Inventory score was 15.9 (SD 11.7). The quantitative study showed that a lack of active employment of the person affected by PD was associated with a higher caregiver burden. The qualitative study revealed cognitive decline and psychological or emotional deficits of the person with PD as additional patient-related determinants of higher caregiver burden. The following caregiver-related and interpersonal determinants were associated with higher caregiver burden: low social support (quantitative study), concerns about the future (qualitative study), the caregiving-induced requirement of restrictions in everyday life (qualitative study), changes in the relationship with the person with PD (qualitative study) and a problem-focused or avoidant coping style (both studies). Integration of both data strands revealed that qualitative findings expanded quantitative findings by (1) distinguishing between the impact of the relationship with the person with PD and the relationship with others on perceived social support, (2) revealing the impact of non-motor symptoms next to motor symptoms and (3) revealing the following additional factors impacting caregiver burden: concern about the future, perceived restrictions and limitations in performing daily activities due to the disease, and negative feelings and emotional well-being. Qualitative findings were discordant with the quantitative finding demonstrating that problem-focused was associated with a higher caregiver burden. Factor analyses showed three sub-dimensions of the Zarit Burden Inventory: (i) role intensity and resource strain, (2) social restriction and anger and (3) self-criticism. Quantitative analysis showed that avoidant coping was a determinant for all three subscales, whereas problem-solved coping and perceived social support were significant predictors on two subscales, role intensity and resource strain and self-criticism. Conclusions The burden experienced by informal caregivers of persons with PD is determined by a complex interplay of patient-related, caregiver-related and interpersonal characteristics. Our study highlights the utility of a mixed-methods approach to unravel the multidimensional burden experienced by informal caregivers of persons with chronic disease. We also offer starting points for the development of a tailored supportive approach for caregivers.

Mesothelioma affects mostly older individuals who have been occupationally exposed to asbestos. The global mesothelioma incidence and mortality rates are unknown, because data are not available from developing countries that continue to use large amounts of asbestos. The incidence rate of mesothelioma has decreased in Australia, the United States, and Western Europe, where the use of asbestos was banned or strictly regulated in the 1970s and 1980s, demonstrating the value of these preventive measures. However, in these same countries, the overall number of deaths from mesothelioma has not decreased as the size of the population and the percentage of old people have increased. Moreover, hotspots of mesothelioma may occur when carcinogenic fibers that are present in the environment are disturbed as rural areas are being developed. Novel immunohistochemical and molecular markers have improved the accuracy of diagnosis; however, about 14% (high‐resource countries) to 50% (developing countries) of mesothelioma diagnoses are incorrect, resulting in inadequate treatment and complicating epidemiological studies. The discovery that germline BRCA1‐asssociated protein 1 (BAP1) mutations cause mesothelioma and other cancers (BAP1 cancer syndrome) elucidated some of the key pathogenic mechanisms, and treatments targeting these molecular mechanisms and/or modulating the immune response are being tested. The role of surgery in pleural mesothelioma is controversial as it is difficult to predict who will benefit from aggressive management, even when local therapies are added to existing or novel systemic treatments. Treatment outcomes are improving, however, for peritoneal mesothelioma. Multidisciplinary international collaboration will be necessary to improve prevention, early detection, and treatment.

Background: We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods: We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results: Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P < 0.0001), while formal support was not (β = −0.30, P = 0.39). Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P < 0.0001) and from relatives (β = −0.61, P = 0.001) were associated with lower caregiver burden, whereas formal social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001). Compared to caregivers without informal support, those who had one support (β = −1.62, P < 0.0001) and two or more supports (β = −1.55, P < 0.0001) had significantly lower burden. This association was not observed for formal support. Conclusions: Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden.

Social support programs for dementia caregivers were widely used in order to reduce care burden. We investigated which types of social supports can reduce psychological and non-psychological burdens of dementia caregivers, and explored the mechanism of those social supports. We evaluated 731 community-dwelling dementia patients and their caregivers from the National Survey of Dementia Care in South Korea. We investigated the five types of social supports (emotional support, informational support, tangible support, positive social interaction, affectionate support) using the Medical Outcomes Study Social Support Survey in each caregiver. The mechanisms of specific types of social support on psychological/non-psychological burden were examined using path analysis. Positive social interaction and affectionate support reduced psychological burden via direct and indirect paths. Tangible support reduced the non-psychological burden via direct and indirect paths. Informational support and emotional support were not helpful for reducing psychological or non-psychological burden. A maximum of 20% of psychological burden could be relieved by positive social interaction and 10.3% of that could be reduced by affectionate support. Tangible support was associated with a 15.1% maximal improvement in non-psychological burden. In order to reduce caregiver burden in dementia effectively, psychosocial interventions should be tailored to target type of caregiver burden.

Background The majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers’ psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD. Methods This was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy. Results Prevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD’s ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers’ employment and having Islamic faith. Marital status (married), PWD’s ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy. Conclusion Caregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers’ quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD. Trial registration ISRCTN14565552 (retrospectively registered).

BackgroundMyasthenia gravis (MG) leads to exertion-dependent muscle weakness, but also psychological and social well-being are limited. We aim to describe the burden of disease in MG including sociodemographic, economical, psychosocial as well as clinical aspects, to compare health-related quality of life (HRQoL) of patients with MG to the general population (genP) and to explore risk factors for a lower HRQoL.MethodsThis case–control study was conducted with MG patients of the German Myasthenia Association. A questionnaire-based survey included sociodemographic and clinical data as well as standardized questionnaires, e.g. the Short Form Health (SF-36). HRQoL was compared to genP in a matched-pairs analysis. Participants of the German Health Interview and Examination Survey for Adults (DEGS1) served as control group.ResultsIn our study, 1660 MG patients participated and were compared to 2556 controls from the genP. Patients with MG showed lower levels of physical functioning (SF-36 mean 56.0, SD 30.3) compared to the genP (mean 81.8, SD 22.1, adjusted difference: 25, 95% CI 22–29) and lower mental health sub-score (SF-36 mean 67.3, SD 19.8, vs. 74.1, SD 16.7, adjusted difference: 5, 95% CI 2–8). Female gender, higher age, low income, partnership status, lower activities of daily life, symptoms of depression, anxiety and fatigue and self-perceived low social support were associated with a lower HRQoL in MG patients.DiscussionHRQoL is lower in patients with MG compared to genP. The burden of MG on patients includes economic and social aspects as well as their emotional well-being. New therapies must achieve improvements for patients in these areas.Trial registration informationClinicaltrials.gov, NCT03979521, submitted: June 7, 2019, first patient enrolled: May 1, 2019, https://clinicaltrials.gov/ct2/show/NCT03979521

BM mesenchymal stromal cells (BM-MSCs) support multiple myeloma (MM) cell growth, but little is known about the putative mechanisms by which the BM microenvironment plays an oncogenic role in this disease. Cell-cell communication is mediated by exosomes. In this study, we showed that MM BM-MSCs release exosomes that are transferred to MM cells, thereby resulting in modulation of tumor growth in vivo. Exosomal microRNA (miR) content differed between MM and normal BM-MSCs, with a lower content of the tumor suppressor miR-15a. In addition, MM BM-MSC-derived exosomes had higher levels of oncogenic proteins, cytokines, and adhesion molecules compared with exosomes from the cells of origin. Importantly, whereas MM BM-MSC-derived exosomes promoted MM tumor growth, normal BM-MSC exosomes inhibited the growth of MM cells. In summary, these in vitro and in vivo studies demonstrated that exosome transfer from BM-MSCs to clonal plasma cells represents a previously undescribed and unique mechanism that highlights the contribution of BM-MSCs to MM disease progression.

Background Prader-Willi syndrome (PWS) is a rare, genetic neurobehavioral and metabolic disorder marked by hyperphagia, behavioral challenges, and significant comorbidities, requiring a multidisciplinary approach for effective management. This systematic review aimed to comprehensively evaluate the burden of disease associated with PWS, focusing on mortality, healthcare resource utilization, economic burden, and quality of life. Methods The literature search, conducted on August 13, 2024, included the MEDLINE, Embase, and Cochrane Library databases, as well as conference proceedings. Original studies published since 2014 were selected based on relevance to PWS patient burden, covering mortality, humanistic and economic impacts. Data from the selected studies were extracted, and currency conversions were standardized. Results For the topics of mortality, humanistic burden and economic burden, a total of 11 studies, 95 studies, and 33 studies were included, respectively. Individuals with PWS faced significantly reduced life expectancy compared to the general population, with leading causes of death including respiratory failure, consequences of uncontrolled hyperphagia, and cardiovascular complications. Hyperphagia contributed substantially to the disease burden, necessitating constant food security measures to prevent life-threatening complications. Primary caregivers, predominantly parents of individuals with PWS, experienced significant emotional and psychological strain. The time-intensive responsibilities of implementing food security measures heavily impacted their daily lives, social and family dynamics, as well as their financial health. Quality of life for patients was less frequently reported but markedly impaired, driven by physical health challenges, behavioral issues, and social isolation. Wider family dynamics were also often impacted, with siblings reporting increased psychosocial stress and feelings of neglect. The direct costs of managing PWS, including frequent hospitalizations and specialized care, were consistently reported to exceed those of matched controls without PWS, highlighting the substantial economic burden associated with the condition. Conclusion This systematic literature review highlights the profound burden of PWS on patients, caregivers, payers of care, and healthcare systems. Complications of PWS reduce life expectancy, impair quality of life, and impose considerable financial strain. The findings underscore an urgent need for comprehensive support and innovative treatments that address the complex manifestations and consequences of PWS, particularly hyperphagia, to improve outcomes for patients and their families.