Examining the impact of Native American myopathy on the quality of life and healthcare accessibility of patients and caregivers.

Native American myopathy (NAM, also known as STAC3 disorder) (OMIM 255995) is an ultra-rare genetic disease impacting multiple body systems. The quality of life and caregiver burden associated with this condition remain poorly characterized. In this study, the Pediatric Quality of Life Inventory and a survey comprised of de novo questions concerning genetic testing, counseling, and caregiver burden were employed to investigate the health-related quality of life (HRQoL) in patients and caregivers with NAM. Study findings uncovered a concerning trend: patients with NAM experienced a notable decline in HRQoL, with reasons that warrant further investigation. Particularly striking was the downturn observed during the transition from adolescence to adulthood-across Physical, Social, and Emotional Functioning domains. Taken together, this study has elucidated novel insights into the impact of NAM, and areas of concern to improve HRQoL have subsequently been highlighted.

Critical Issues for Patients and Caregivers in Neuro-Oncology during the COVID-19 Pandemic: What We Have Learnt from an Observational Study.

OBJECTIVE: The COVID-19 pandemic affected neuro-oncological patients and their caregivers regarding tumor care and emotional functioning, including Quality of Life (QoL). This study aimed to understand how COVID-19 affected their psychological state and the relations between patients and health personnel in neuro-oncology. METHODS: A cross-sectional study was conducted on neuro-oncological patients and their caregivers. RESULTS: A total of 162 patients and 66 caregivers completed the questionnaire. Altogether, 37.5% of patients perceived a greater risk of contracting COVID-19 compared to the general population. On a 0-10 scale, the patients' tumor-related anxiety score was 5.8, and their COVID-19-related score was 4.6. The caregivers reported 7.7 and 5.5, respectively. QoL was described as at least good in 75% of both patients and caregivers; the caregivers' care burden increased in 22.7% of cases during the pandemic, with no correlation with QoL. Future perception often changed, both in patients and caregivers. In 18% of cases, the cancer treatment schedule was changed, either by patient decision or by medical decision. However, 93.5% of patients were satisfied with their overall care. CONCLUSIONS: A considerable proportion of patients and caregivers still perceived the tumor disease as more burdensome than the pandemic, and their future as more uncertain. Such data suggest the need to build a productive alliance between patients and health professionals.

Educational Intervention for the Management of Nonspecific Lower Back Pain in Nonprofessional Caregivers (TRANSFE Program): A Quasi-Experimental Study.

Nonspecific lower back pain is one of the main health issues experienced by nonprofessional caregivers of dependent individuals. The repetitive movements and efforts made by caregivers to assist dependent individuals are associated with the onset of this lower back pain. The main objective of this study was to assess the effectiveness of an educational intervention for the management of nonspecific lower back pain in nonprofessional caregivers of dependent individuals (TRANSFE program). The secondary objectives were to (i) evaluate the effectiveness of the TRANSFE program on other variables (caregiver burden, perceived social support, and health-related quality of life), (ii) obtain the sociodemographic profile of the sample, and (iii) determine the baseline of the study variables. A quasi-experimental study with post-intervention measurements at 3 months was conducted. Thirty-six nonprofessional caregivers of dependent individuals participated in this study. The presence of lower back pain (back pain index), low back pain (visual analogue scale), disability due to low back pain (Oswestry disability index), perceived social support (Duke-UNK scale), caregiver burden (Zarit burden scale), and health-related quality of life (EuroQol-5D) were assessed. The intervention significantly improved all the studied variables related to lower back pain (p < 0.001). The intervention was effective on other variables related to nonprofessional caregiving such as caregiver burden, perceived social support, and health-related quality of life, albeit with moderate results. An educational intervention for lower back pain experienced by caregivers of dependent individuals was effective in reducing lower back pain and addressing caregiver burden, perceived social support, and health-related quality of life. This study was registered retrospectively on the Open Science Framework platform on 20 June 2024, with the registration number 10.17605/OSF.IO/K7WTE.

Caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a psychiatric tertiary hospital in South Africa.

Background: Chronic mental illnesses such as schizophrenia affect patients' functioning, making caregiving necessary although burdensome. Aim: This study aimed to determine caregiver burden and its sociodemographic determinants in family caregivers of patients with schizophrenia attending a Psychiatric Outpatient Department (POD). Setting: Tertiary hospital in Northern Pretoria, South Africa. Methods: In this cross-sectional study conducted over 3 months, 300 consecutive family caregivers who attended the POD were administered a 22-item Zarit Burden Interview (ZBI-22), which has a score of 0-88, with higher values indicating more burden. Their sociodemographic characteristics were ascertained. Linear and ordinal logistic regression analyses were performed to identify determinants or predictors of total and severe burdens, respectively. Results: Most caregivers were aged 46.0 ± 14 years, females (62%), parents (39%), of low-income status (93.7%), had secondary education (70%), resided with the patient (87%), and helped with all troublesome activities (95.3%). The median ZBI-22 score was 19.0 (interquartile range: 13.0-30.5). The determinants of both total and severe burdens were: caregiver age ≥ 50 years adjusted odds ratio (aOR): 2.55, confidence interval (CI): 1.49-4.36; residential area farther away from the hospital aOR: 1.76, CI: 1.3-2.99; increasing months of caregiving aOR: 1.0, CI: 1.001-1.009, p = 0.006; and not having another family member that needs care aOR: 0.43, CI: 0.24-0.78. Conclusion: Having mental healthcare facilities close to residential areas and assisting caregivers aged ≥ 50 years who have multiple family members who need care may alleviate the burden. Contribution: Predicting total and severe caregiver burdens contemporaneously is effective for identifying potential burden interventions.

The Impact of Sex and Gender on Burden for Caregivers of Stroke Patients: a narrative review.

BACKGROUND: When a patient is disabled after stroke, they require both emotional support and medical management and may require the assistance of a caregiver. Given the often-sudden onset of disability and the complex challenges related to caring for someone after stroke, caregivers can experience a heavy burden. Caregiver burden negatively affects quality of care, quality of life, and physical and psychological health. The impact of gender on caregiver burden has been in many other conditions; however, the association has not yet been thoroughly assessed in stroke. OBJECTIVE: The aim of this paper is to define caregiver burden, discuss how it is assessed, discuss unique aspects of burden for stroke caregivers, and determine the impact of sex and gender on stroke caregiver role and burden. METHODS: A narrative review was performed to synthesize the available literature and explore how the role of sex and gender impact caregiving for patients who have suffered stroke and whether sex and gender of the caregiver contribute to caregiver burden r. RESULTS: Review of the available literature suggests that sex and gender significantly impact caregiving burden following stroke dipropionately affecting women. CONCLUSIONS: Caregiving for patients who have suffered stroke is often provided by women both inside the home and when patients are within institutions. Women who serve as caregivers to stroke patients may be at higher risk of experiencing burden and its negative effects, including emotional strain, anxiety, and/or depression. More research is needed to determine the best ways to provide support for women who act as caregivers for stroke patients to mitigate caregiver burden.

Effects of telehealth interventions on the caregiver burden and mental health for caregivers of people with dementia: a systematic review and meta-analysis.

OBJECTIVES: To systematically evaluate the effects of telehealth interventions on the caregiver burden and mental health of caregivers for people with dementia (PWD). METHOD: Relevant randomized controlled trials (RCTs) of telehealth interventions on caregivers were extracted from nine electronic databases (PubMed, The Cochrane Library, Web of Science, Embase, CINAHL, SinoMed, CNKI, WanFang, and VIP). The retrieval time was from inception to 26 July 2023. RESULTS: Twenty-two articles with 2132 subjects were included in the final analysis. The meta-analysis demonstrated that telehealth interventions exerted a significant effect in reducing caregiver burden (SMD: -0.14, 95 % CI: -0.25, -0.02, p = 0.02), depression (SMD = -0.17; 95%CI: -0.27, -0.07, p < 0.001) and stress (SMD = -0.20, 95%CI: -0.37, -0.04, p = 0.01). However, no statistically significant effect was observed on anxiety (SMD = -0.12, 95%CI: -0.27, 0.03, p = 0.12). Moreover, subgroup analysis showed that tailored interventions were associated with more evident reductions in depression (SMD = -0.26; 95%CI: -0.40, -0.13, p < 0.001) than standardized interventions (SMD = -0.08; 95%CI: -0.22, 0.06, p = 0.25). In addition, telehealth was effective in relieving depression in Internet-based (SMD = -0.17, 95%CI: -0.30, -0.03, p = 0.01) and Telephone-based group (SMD = -0.18, 95%CI: -0.34, -0.02, p = 0.03), while there was no significant difference in the Internet and Telephone-based group (SMD = -0.18, 95%CI: -0.54, 0.18, p = 0.32). CONCLUSION: Telehealth could effectively reduce the burden and relieve the depression and stress of caregivers of PWD, while its effect on anxiety requires further research. Overall, telehealth has potential benefits in dementia care.

Effectiveness of technology-based psychosocial interventions for improving health-related outcomes of family caregivers of stroke survivors: A systematic review and meta-analysis.

AIM: To synthesize evidence regarding the effectiveness of technology-based psychosocial interventions in improving health-related outcomes among family caregivers of stroke survivors. DESIGN: A systematic review and meta-analysis was reported by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. METHODS: Randomized controlled trials that investigated the effects of psychosocial interventions delivered through information and communication technologies on self-efficacy, caregiving competence, caregiver burden, perceived social support, anxiety, depression, health-related quality of life and cost-effectiveness were included. Two researchers independently selected studies, extracted data, and appraised the quality of the included studies. Subgroup analysis, sensitivity analysis, and narrative synthesis were conducted. DATA SOURCES: Ten electronic databases (PubMed, CENTRAL, Web of Science, Scopus, CINHAL, Embase, Institution of Electrical Engineers Xplore, Ovid Medline, PsycINFO, ProQuest Dissertations and Thesis) were searched up to February 2023. RESULTS: Nineteen studies involving 1717 participants fulfilled the eligibility criteria. Technology-based psychosocial interventions significantly improved self-efficacy (SMD = .62), caregiving competence (SMD = .55), depression (SMD = -.25) and anxiety (SMD = -.35). However, perceived social support, caregiver burden, and health-related quality of life did not show significant improvements. Subgroup analyses revealed that the interventions, lasting from 4 to 6 weeks and encompassing comprehensive contents, exhibited larger effect sizes. None of the studies measured cost-effectiveness. CONCLUSION: The technology-based psychosocial interventions are effective in enhancing self-efficacy and caregiving competence, as well as alleviating anxiety, and depression among family caregivers of stroke survivors. Future research should investigate interventions delivered through various digital platforms using well-designed RCTs with in-depth qualitative data collection and measurement of health and cost-effectiveness outcomes. IMPACT: Through psychosocial interventions, healthcare providers in clinical and community settings, particularly nurses, could incorporate technologies into current stroke care practices. PATIENT OR PUBLIC CONTRIBUTION: It is not applicable as this is a systematic review. REGISTRATION: The protocol was registered on PROSPERO (CRD42023402871).

Primary caregiver burden and undiagnosed mental health illness in out-patients with inflammatory bowel disease-A multicentric prospective survey from the IBD Emerging Nations' Consortium.

BACKGROUND: Mental health is an overlooked aspect of inflammatory bowel disease (IBD) patient care with limited data from the developing world. The primary caregiver burden is expected to be high, but has not been evaluated. METHODS: We conducted a questionnaire-based survey of consecutive out-patients with no diagnosed mental health illness (n = 289) and their primary caregivers (n = 247) from 10 centers across eight countries (Bangladesh, India, Iran, Malaysia, Myanmar, Nepal, Pakistan, Thailand) of IBD-Emerging Nations' Consortium (ENC). Patients were assessed for anxiety (PHQ-9), depression (GAD-7), quality of life (SIBDQ, IBDCOPE) and medication adherence (MMAS-8). Caregiver burden was assessed by Zarit-Burden Interview (ZBI), Ferrans and Power Quality of Life (QOL) scores and coping strategies (BRIEF-COPE). Multivariate logistic regression and correlation analyses were performed to identify risk factors and the impact on QOL in patients and caregivers. RESULTS: Moderate to severe depression and anxiety were noted in 33% (severe 3.5%) and 24% (severe 3.8%) patients, respectively. The risk factor for depression was active disease (p < 0.001, OR6.3), while male gender (p = 0.01, OR0.45) and medication adherence (p = 0.003, OR0.75) were protective. Risk factors for anxiety were unmarried status (p = 0.015, OR2.3), female gender (p = 0.004, OR0.41), steroid use (p = 0.016, OR2.1) and active disease (p < 0.001, OR7.97). High GAD-7 and PHQ-9 scores positively correlated with high disease activity (r = 0.55, p < 0.001, Crohn's disease; r = 0.52, p < 0.001 ulcerative colitis) and negatively with SIBDQ (r = - 0.63, p < 0.001; r = - 0.64, p < 0.001 CD; r = 0.36, p = 0.001,UC). Sixty-five per cent (159/249) primary caregivers reported high burden (ZBI ≥ 21), which positively correlated with low educational status and low-income and negatively with QOL(r = - 0.33, p < 0.001). The primary adaptive coping strategy among caregivers was religion, while maladaptive strategy was self-distraction. CONCLUSION: Nearly two-thirds of primary caregivers reported high burden of care. There was also high prevalence of undiagnosed depression and anxiety in IBD out-patients. This highlights the need for patient-caregiver integrated mental-health services in the developing world.

Caregiver strain among relatives of out-of-hospital cardiac arrest survivors; the DANCAS relative survey.

BACKGROUND: Knowledge about caregiver strain among relatives of out-of-hospital cardiac arrest (OHCA) survivors is limited. Thus, the objectives were to i) describe differences in self-reported mental well-being, mental health, and caregiver strain at different time points (1-5 years) post-OHCA and ii) investigate characteristics associated with caregiver strain. METHODS: A national cross-sectional survey (DANCAS) from October 2020 to March 2021 with OHCA survivors and their closest relatives. The relative survey included the WHO-5 Well-being Index (WHO-5), the Hospital Anxiety and Depression Scale (HADS) and the Modified Caregiver Strain Index (M-CSI). Differences in scores between time groups were explored using descriptive statistics. Associations between characteristics and caregiver strain were investigated with multivariable logistic regression models, presented as odds ratios (OR) with 95% confidence intervals (CI), adjusted for gender, age, education status, relative affiliation, and time after OHCA. RESULTS: Of 561 relatives, 24% (n = 137) experienced caregiver strain, with no significant differences in the relatives' mental well-being, mental health, or caregiver strain with time since OHCA. In the adjusted analyses, older age (OR 0.98 95% CI 0.96;0.99) and several self-reported outcomes, including reduced mental well-being (WHO-5 OR 7.27 95% CI 4.86;11.52), symptoms of anxiety (HADS-A OR 6.01 95% CI 3.89;9.29) and depression (HADS-D OR 15.03 95% CI 7.33;30.80) were significantly associated with worse caregiver strain. CONCLUSION: Nearly one-quarter of relatives of OHCA survivors experience caregiver strain, with this proportion remaining unchanged with time. Several outcomes were associated with caregiver strain, emphasising the need to identify relatives at greater risk of burden following OHCA.

Cost of long-term care and balancing caregiver wellbeing: a narrative review.

INTRODUCTION: Long-term care (LTC) refers to care and support services that are required by individuals who lack the ability to perform important daily routines and may be dependent on others for personal, social, and medical needs over a sustained period of time. LTC may be broadly categorized into formal and informal care, where formal care is provided by professionals who are compensated to provide these services and informal care captures the care services provided without compensation by family members, friends, or other unpaid individuals. AREAS COVERED: In this narrative review, we identify and synthesize evidence to evaluate the cost of long-term care while balancing the needs of caregivers. We searched Embase and EconLit for studies published from 2010 to November 2023. Our search strategy used a combination of keywords such as 'long-term care,' 'caregiver burden,' 'caregiver support,' 'cost of care,' and 'caregiver wellbeing.' We include both formal and informal LTC, as well as predictors of caregiver wellbeing. EXPERT COMMENTARY: This review highlights the global variability in LTC costs and the significant burden on caregivers, emphasizing the need for policy interventions and comprehensive insurance schemes. Future research should focus on standardized assessment tools, intervention effectiveness, and integrating caregiver support into healthcare models, ensuring holistic and sustainable LTC solutions.

Group intervention for family members of people with borderline personality disorder based on Dialectical Behavior Therapy: Implementation of the Family Connections® program in France and Switzerland.

BACKGROUND: Families and significant others of people with borderline personality disorder (BPD) show increased levels of psychological distress. Family Connections®, a 12-week group intervention based on the principles of Dialectical Behavior Therapy, was designed to provide families with both information about the disorder and emotion regulation skills. It has been progressively implemented in French-speaking European countries. METHODS: We conducted an observational, multicenter study in France and Switzerland. In total, 149 participants of the Family Connections program were included among five centers. Burden, depression, coping, and emotion regulation were assessed before and after the intervention. RESULTS: One-way repeated measures MANOVA showed that the burden, depressive symptoms, emotion regulation and coping all changed significantly after the intervention (p < 0.001, partial η2 = 0.297). T-tests showed that the burden significantly decreased after the intervention (p < 0.0001, d = -0.48), as did depressive symptoms (p < 0.0001, d = -0.36) and difficulties in emotion regulation (p < 0.0001, d =-0.32) whereas coping improved (p < 0.0001, d = 0.53). Two-way mixed ANOVA showed that burden reduction was stronger among female than male participants (p = 0.048, η2 = 0.027). Before the intervention, the burden was higher for female than male participants (p < 0.001). An initial linear regression showed the burden reduction to be associated with a decrease in the resignation of the participants (ß = 0.19, p = 0.047). A second linear regression showed the burden reduction to be associated with the intensity of the relatives' symptoms at baseline (ß = 0.22, p = 0.008) and improvement of emotional clarity of the participants (ß = 0.25, p = 0.006). CONCLUSION: This Dialectical Behavior Therapy-Based psychoeducational intervention is an appropriate way to support French-speaking European families of people with BPD.

Quality of life of caregivers of patients on home enteral nutrition.

BACKGROUND: Home enteral nutrition (HEN) patients often rely heavily on caregivers (CGs), whose quality of life (QoL) is significantly impacted. This study aimed to identify potentially modifiable factors influencing the QoL of CGs of HEN patients. METHODS: A multicentre, cross-sectional study was conducted in three home nutrition centers from Jan 2021 to Jan 2022. We enrolled 90 CGs of HEN patients, collecting data on QoL (WHOQOL-BREF), depression (Beck Depression Inventory), CG burden (Zarit Burden Interview), sleep quality (Pittsburgh Sleep Quality Index), stress (Perceived Stress Scale), life satisfaction (Satisfaction With Life Scale) and financial status. RESULTS: The mean age of CGs was 54.53 years, with 76% being female. 19% of CGs rated their QoL as poor, and 57% had depression. Multivariate regression analysis showed that financial satisfaction (ß = 0.14, p < 0.01) and depression (ß = -0.03, p < 0.001) were significant predictors of QoL (R2 = 0.6). Depression correlated with CG burden (r = 0.54, p < 0.001), poor sleep quality (r = 0.47, p < 0.001), stress (r = 0.68, p < 0.001), and financial satisfaction (r = -0.39, p = 0.001). The average monthly income per person was $663.3 and 51.2% of CGs were not satisfied with their financial situation. Lower income was correlated with stress (r = -0.298, p = 0.023). CG burden was associated with financial satisfaction (r = -0.373, p < 0.001), quality of sleep (r = 0.296, p = 0.005) depression (r = 0.54, p < 0.001), stress (r = 0.5, p < 0.001) and satisfaction with life (r = -0.389, p < 0.001). CONCLUSIONS: CGs of HEN patients face substantial challenges impacting their QoL, particularly financial stress and depression. Addressing these issues through comprehensive support systems is crucial to improve CG well-being and, subsequently, patient care outcomes.

Family caregivers use a Hand-Under-Hand online course to improve the nutritional status of patients with severe dementia: A quasi-experimental study.

AIM: In Taiwan, over 90% of dementia patients received home care. Severe dementia-linked food refusal significantly affects nutrition, thereby straining caregivers. Family caregivers can reduce their burden by learning feeding and dementia nutrition online, thus preserving patient oral feeding. The study aim for family caregivers learn online Hand-Under-Hand (UH) techniques to ease feeding in severe dementia, enhancing nutrition and reducing their burden. METHODS: In this quasi-experimental study, participants in the experimental group received 2-h UH courses online, while the control group received their usual care. The primary outcome indicators were abnormal eating behavior, nutritional status, and caregiver burden, with outcomes tracked at 0, 1, and 3 months. At the neurology outpatient clinic of a medical center in Taipei, 65 dyads-comprising patients with severe dementia and their caregivers-were randomly assigned to groups. RESULTS: The study participants comprised 36 female and 29 male caregivers, with an average age of 58.09 years. The patient group included 43 females and 22 males, with a mean age of 83.32 years. Patients in the experimental group exhibited reduced abnormal eating behavior, and caregiver burden was reduced at 1 and 3 months, patients demonstrated improved nutritional status by month 3. CONCLUSIONS: The accessibility and convenience of online courses enabled family caregivers to use UH feeding techniques to effectively improve the nutritional status and correct the abnormal eating behavior of patients with dementia, while also decreasing caregiver burden. Geriatr Gerontol Int 2024; ••: ••-••.

Assessment of drug therapy satisfaction amongst the elderly: A patient reported outcomes measures approach.

BACKGROUND: Understanding elderly experiences enhance healthcare outcomes and patient satisfaction. Recognizing caregivers' role and implementing supportive measures enhance care. OBJECTIVES: Quantify drug satisfaction using patient-reported outcomes measures approach. Assess caregiver burden using short version of Burden Scale for Family Caregivers. METHODS: Six-month cross-sectional study in Department of Geriatrics. Elderly (≥60), minimum one comorbidity, admitted for >48 h, and consenting to participate were enrolled. Patient satisfaction assessed using Treatment Satisfaction with Medicines Questionnaire (SATMED-Q). SPSS version 27 used to calculate odds ratio. RESULTS: 282 participants enrolled. SATMED-Q score 47.41 ± 10.34, indicating overall satisfaction. Treatment satisfaction range 47.07 % to 100 %. Age [OR 0.964, 95 % CI 0.932-0.996 (p = 0.029)] and education [OR 1.500, 95 % CI 1.129-1.992 (p = 0.005)] influenced satisfaction. 268 [95.03 %] had caregivers, 14 [4.96 %] did not. Caregiver burden score 9.25 ± 9.11. CONCLUSION: Insights obtained from assessing satisfaction and caregiver burden enables physicians to improve welfare of elderly and caregivers.

Burden of family caregivers in Alzheimer's disease: The role of caregivers' perception of cognitive impairment.

OBJECTIVES: This study examined the role of caregivers' perception of cognitive impairment in burden of family caregivers in Alzheimer's disease (AD). We hypothesized that the evaluation of cognitive impairment by family caregivers plays a pivotal role in burden. METHODS: The study included 110 dyads (person with AD and their caregiver) recruited from a Memory Unit in France. The cognitive impairment and depressive symptoms of person with AD were evaluated by a geriatrician using the Mini Mental State Examination (MMSE) and the Geriatric Depression Scale (GDS-15). Caregivers provided self-reports on the perception of cognitive impairment (IQCODE) of the care recipient, the caregiving burden (ZBI), depressive symptoms (GDS-15), and self-esteem (RSE). Descriptive analyses, comparison of different caregiver burden groups, and multinomial logistic regression analyses to understand correlates of caregiver burden were conducted with SPSS®, version 20. RESULTS: The findings show that the caregivers are on average 60 years old and the majority are women. They care for persons with AD, who are on average 82 years old and most of whom are women. Our results show that the duration of caregiving, depression of the caregiver, and caregivers' perception of cognitive impairment contribute significantly to burden of caregiver. DISCUSSION: This study shows that it is necessary to adopt the caregiver-centered approach to support the dyad. The role of the caregivers' perception of cognitive impairment in AD should be developed when supporting caregivers in suffering.

Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. METHODS: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. TRIAL REGISTRATION: The study is registered at ClinicalTrails.gov; NCT06418646.

The emotional burden of caring for patients with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex-associated epilepsy: A qualitative study in Japan.

INTRODUCTION: Lennox-Gastaut syndrome (LGS) and Dravet syndrome (DS) are rare, childhood-onset conditions associated with severe, treatment-resistant epilepsy and developmental issues, including motor and cognitive impairment. Tuberous sclerosis complex (TSC) is a rare genetic disease commonly associated with epilepsy and other neuropsychiatric disorders. This cross-sectional, interview-based study examined the qualitative impact of caring for patients with LGS, DS, and TSC-associated epilepsy on caregivers in Japan, from the perspective of both caregivers and physicians. METHODS: The survey included a pre-interview worksheet to describe caregivers' emotional journeys, followed by a ≤ 60-minute one-on-one interview. Eligible participants were Japanese caregivers of patients with LGS, DS, or TSC treated for epilepsy symptoms, and Japan-residing pediatricians or neurologists treating ≥ 3 patients with LGS, DS, and/or TSC. Interview question responses were subjected to content analysis to identify the most common response tendencies and themes. RESULTS: Twenty-six caregivers responded (mean [standard deviation (SD)] age, 45.9 [9.5] years; age range 29-68; 92 % female), caring for patients with LGS (n = 5), DS (n = 10), and TSC (n = 11); patient mean (SD) age, 13.6 (10.0) years; age range 2-44; 27 % adults; 50 % female. Nineteen physicians, treating patients with LGS (n = 9), DS (n = 7), and TSC (n = 10), participated. Caregivers and physicians generally aligned on the factors affecting caregivers' emotional states / quality of life (QoL). The most frequently reported caregiver emotions at the time of diagnosis were shock and discouragement, anxiety for the future, and relief at receiving a diagnosis. Negative emotions throughout disease progression up until the time of survey were mainly caused by worsening of seizures, burden of constant caregiving / lack of free time, and patient's developmental issues. Positive emotions were linked to effective treatment / reduced seizures; more free time owing to the use of facilities, services, or other caregiving support; and developmental progress. Physicians acknowledged that caregivers required consultation services to support their emotional needs. In terms of unmet needs, caregiver and physician responses were aligned on the insufficient availability of services/facilities, the lack of effective treatments, and the uncertainties of adult patient care. CONCLUSIONS: Caregivers of patients with LGS, DS, or TSC-associated epilepsy in Japan reported a high degree of emotional burden related to frequent seizures, developmental issues, and constant caregiving. The burden of suboptimal treatment effectiveness, limited access to support services, and uncertainties in long-term care emphasize important unmet treatment needs.

Using large language model (LLM) to identify high-burden informal caregivers in long-term care.

BACKGROUND: The rising global elderly population increases the demand for caregiving, yet traditional methods may not fully assess the challenges faced by vital informal caregivers. OBJECTIVE: To investigate the efficacy of Large Language Model (LLM) in detecting overburdened informal caregivers, benchmarking against rule-based and machine learning methods. METHODS: 1,791 eligible informal caregivers from Southern Taiwan and utilized their textual case summary reports for the LLM. We also employed structured questionnaire results for machine learning models. Furthermore, we leveraged the visualization of the LLM's attention mechanisms to enhance our understanding of the model's interpretative capabilities. RESULTS: The LLM achieved an Area Under the Receiver Operating Characteristic (AUROC) curve of 0.84 and an Area Under the Precision-Recall Curve (AUPRC) of 0.70, marking an 8% and 14% improvement over traditional methods. The visualization of the attention mechanism accurately reflected the evaluations of human experts, concentrating on descriptions of high-burden descriptions and the relationships between caregivers and recipients. CONCLUSION: This research demonstrates the notable capability of LLM to accurately identify high-burden caregivers in Long-term Care (LTC) settings. Compared to traditional approaches, LLM offers an opportunity for the future of LTC research and policymaking.

Assessing the psychometric performance of the EQ-5D-5L among informal caregivers of people with dementia.

PURPOSE: This study aimed to examine the psychometric performance of the EQ-5D-5L in informal caregivers of people with dementia. METHODS: Data were obtained from an online survey administered to informal caregivers of people with dementia in Australia. Known-group comparisons were examined by formulating 15 a priori hypotheses, where a difference was made between weak and strong hypotheses. Group comparisons were tested using the non-parametric Wilcoxon-rank and the Kruskal-Wallis test, as well as regression analysis. Floor and ceiling effects were considered to be present if more than 15% of respondents achieved the lowest or highest possible score, respectively. RESULTS: In total, 212 informal caregivers of people with dementia were included in the analysis. On average, participants were 47 years old (SD: 17) and 61% of them were female. The mean EQ-5D-5L utility score was 0.88 (SD: 0.16) and the mean EQ-VAS was 72.47 (SD: 17.86). While there was no floor effect, 26% reported full health. Nine strong and three weak hypotheses were confirmed, supporting the ability of the EQ-5D-5L to discriminate between groups with respect to: self-reported health status, happiness levels, presence of mental or physical health conditions, ability to engage in enjoyable activities, and availability of support. CONCLUSION: Findings provide supporting evidence for the EQ-5D-5L in terms of its discriminant validity in informal caregivers of patients with dementia. However, the present ceiling effect suggests that the sensitivity of the EQ-5D-5L to detect improvements may be limited. Further studies are warranted examining other psychometric criteria, including reliability and responsiveness to change.