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Background: Low- and middle-income countries (LMICs), including South Africa, are currently experiencing multiple epidemics: HIV and the rising burden of non-communicable diseases (NCDs), leading to different patterns of multimorbidity (the occurrence of two or more chronic conditions) than experienced in high income settings. These adversely affect health outcomes, increase patients' perceived burden of treatment, and impact the workload of self-management. This paper outlines the methods used in a qualitative study exploring burden of treatment among people living with HIV/NCD multimorbidity in South Africa. Methods: We undertook a comparative qualitative study to examine the interaction between individuals' treatment burden (self-management workload) and their capacity to take on this workload, using the dual lenses of Burden of Treatment Theory (BoTT) and Cumulative Complexity Model (CuCoM) to aid conceptualisation of the data. We interviewed 30 people with multimorbidity and 16 carers in rural Eastern Cape and urban Cape Town between February-April 2021. Data was analysed through framework analysis. Findings: This paper discusses the methodological procedures considered when conducting qualitative research among people with multimorbidity in low-income settings in South Africa. We highlight the decisions made when developing the research design, recruiting participants, and selecting field-sites. We also explore data analysis processes and reflect on the positionality of the research project and researchers. Conclusion: This paper illustrates the decision-making processes conducting this qualitative research and may be helpful in informing future research aiming to qualitatively investigate treatment burden among patients in LMICs. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role. Methods: A scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020. Results: The searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways. Conclusion: Our review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care. [ABSTRACT FROM AUTHOR]

Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Caregivers of children with autism spectrum disorder (ASD) often report higher levels of stress and mental health issues. Support services and parent training programs may help buffer the effects of caring for a child with ASD. However, due to the national lack of trained ASD providers and disparity of ASD support resources available in rural areas, caregivers often go without support. A possible solution to reach caregivers in rural areas is web-based interventions. This paper describes an ongoing pilot study examining the feasibility, acceptability, and preliminary effects on caregiver well-being and disruptive child behaviors for a web-based parent training program (Attend Behavior) for caregivers of young children (ages 2–11 years old) with autism spectrum disorder (ASD) living in rural areas (trial registration NCT05554198). The intervention is available on the internet as well as a downloadable app for mobile phones. Participants will be invited to use the intervention program for 12-weeks. Prior to using the program, participants will be asked to take a baseline survey assessing depressive symptoms (PROMIS Depression Short Form-6a), caregiver stress (Parenting Stress Index-Short Form), child disruptive behaviors (Home Situations Questionnaire-ASD and Aberrant Behavior Checklist). After 12-weeks, participants will be asked to complete a post-intervention survey with the same measurement scales plus questions regarding intervention acceptability, appropriateness, and feasibility (Acceptability of Intervention, Intervention Appropriateness Measure, and the Feasibility of Intervention Measure). Participants are also invited to partake in a brief 1:1 interview with a study team member to give further feedback regarding the intervention. Study retention and participant app usage data will be examined. Information generated from this pilot study will be used to inform a future larger scale randomized control trial of Attend Behavior. [ABSTRACT FROM AUTHOR]

Background: Upper gastrointestinal cancers (UGICs) are increasingly prevalent. With a poor prognosis and significant longer-term effects, UGICs present significant adjustment challenges for individuals with cancer and their informal caregivers. However, the supportive care needs of these informal caregivers are largely unknown. This systematic review of qualitative studies synthesises and critically evaluates the current evidence base on the experience of informal caregivers of individuals with UGIC. Methods: A Joanna Briggs Institute systematic review was conducted. Searches were performed in four databases (MEDLINE, PsycINFO, Embase, CINAHL) from database inception to February 2021. Included studies explored experiences of informal caregivers of individuals diagnosed with primary cancer of the oesophagus, stomach, pancreas, bile duct, gallbladder, or liver. Studies were independently screened for eligibility and included studies were appraised for quality by two reviewers. Data were extracted and synthesised using meta-aggregation. Results: 19 papers were included in this review, and 328 findings were extracted. These were aggregated into 16 categories across three findings: (1) UGIC caregiver burden; UGIC caregivers undertake extensive responsibilities, especially around patient diet as digestion is severely impacted by UGICs. (2) Mediators of caregiver burden; The nature of UGICs, characterised by disruptive life changes for caregivers, was identified as a mediator for caregiver burden. (3) Consequences of caregiver burden: UGIC caregivers' experiences were shaped by unmet needs, a lack of information and a general decline in social interaction. Conclusions: The findings of this review suggest the need for a cultural shift within health services. Caregiving for UGIC patients is suggested to adversely affect caregivers' quality of life, similarly to other cancer caregiving populations and therefore they should be better incorporated as co-clients in care-planning and execution by including them in discussions about the patient's diagnosis, treatment options, and potential side effects. [ABSTRACT FROM AUTHOR]

Background: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long‐term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. Methods: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. Results: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high‐risk situations, leading to hypervigilance and paternalistic approaches to care. Conclusion: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. Patient or Public Contribution: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write‐up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors. [ABSTRACT FROM AUTHOR]

Background: The increase in the average age of the population, the decrease in the size of the household and rising in the number of working women impose an increasing burden on home caregivers in Iran. The aim of this study was to measure care burden of informal caregivers in Iran through systematic review and meta-analysis of existing literature. Materials and Methods: A systematic review was conducted by using national and international databases of Scopus, PubMed, Embase, Web of Science, SID, Magiran, and IranDoc papers in English and Persian language up to the first half of 2020. In this meta-analysis, we calculated the pooled care burden and 95% confidence intervals in Statistical Software For Data Science (STATA) V.15. Results: Forty-four papers were included in the current study based on inclusion and exclusion criteria comprising of 8626 samples. Pooled mean of Burden of Care was 52.01 (95% CI: 48.21-55.82). Highest pooled mean(SD) of care burden (64.37) was related to caregivers of schizophrenia patients (95% CI: 56.09–72.64). Highest care burden (53.45) was observed in most deprived areas (95%CI = 47.05–59.86). A statistically significant relationship was observed between caregivers gender and care burden (p < 0.05). Conclusions: The reported care burden of informal caregivers requires the establishment of a support system to control mental and physical stress. Due to the dispersion and cultural diversity in Iran, more studies are needed to obtain more accurate data. [ABSTRACT FROM AUTHOR]

This paper aims to describe a randomized controlled trial protocol evaluating the effectiveness, cost, and process of a stress process model-based program in dementia caregiving (DeCare-SPM) for family caregivers. Family caregivers of individuals with dementia will be recruited from memory clinics and community settings and randomly assigned to either DeCare-SPM or usual care. DeCare-SPM comprises three face-to-face sessions (ie, problem-based coping, emotion-based coping, meaning-based coping), and a fourth session (ie, social support) including weekly telephone-based consultation for four weeks and then monthly face-to-face boosters. Outcomes will be measured at baseline (T0), and at one (T1), three (T2), and six months (T3). The primary outcome is positive aspects of caregiving and secondary outcomes are caregiving (ie, sense of competence, caregiver burden, social support, anxiety, depression, and quality of life), dementia-related (ie, care dependency, neuropsychiatric symptoms, and quality of life), and stress-related biomarkers of blood and saliva. In addition, process and economic evaluations will be performed. Mixed-effects models will be used to assess intervention effects. Content analysis will be performed on the qualitative data. This paper described the protocol for comprehensive evaluation of the effectiveness, cost, and process of the theory-driven DeCare-SPM to inform how and why interventions work. It highlights the need to reduce challenges and enhance the positive aspects of dementia care. The DeCare-SPM will provide evidence-based insights into how to support and empower family caregivers in their important roles, thereby, leading to improved dementia care. [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to study the value of informal care (IC) time from the perspective of caregivers using two alternative contingent valuation tools – willingness to pay (WTP) and willingness to accept (WTA) – and to identify the variables that affect the stated values. Design/methodology/approach: The authors used data from a multi-centre study of 610 adult caregivers conducted in two Spanish regions in 2013. The existence of "protest zeros" and "economic zeros" because of the severe budgetary constraints of the households was also considered. Two-part multivariate models were used to analyse the main factors that explained the declared values of WTA and WTP. Findings: The average WTP and WTA were €3.12 and €5.98 per hour of care, respectively (€3.2 and €6.3 when estimated values for "protest zeros" and "economic zeros" were considered). Some explanatory variables of WTA and WTP are coincident (place of residence and intensity of care time), whereas other variables only help to explain WTP values (household and negative coping with caregiving) or WTA values (age and burden of care). Some nuances are also identified when comparing the results obtained without protest and economic zeros with the estimated values of these special zeros. Originality/value: Studies analysing the determinants of WTP and WTA in IC settings are very scarce. This paper seeks to provide information to fill this gap. The results indicate that the variables that explain the value of IC from one perspective may differ from the variables that explain it from an alternative perspective. Given the relevance of contextual factors, studies on the topic should be expanded, and care should be taken with the extrapolation of results across countries and settings. [ABSTRACT FROM AUTHOR]

Background: Selective serotonin reuptake inhibitors (SSRIs) are commonly prescribed to manage anxiety in adults with an autism diagnosis. However, their effectiveness and adverse effect profile in the autistic population are not well known. This trial aims to determine the effectiveness and cost-effectiveness of the SSRI sertraline in reducing symptoms of anxiety and improving quality of life in adults with a diagnosis of autism compared with placebo and to quantify any adverse effects. Methods: STRATA is a two-parallel group, multi-centre, pragmatic, double-blind, randomised placebo-controlled trial with allocation at the level of the individual. It will be delivered through recruiting sites with autism services in 4 regional centres in the United Kingdom (UK) and 1 in Australia. Adults with an autism diagnosis and a Generalised Anxiety Disorder Assessment (GAD-7) score ≥ 10 at screening will be randomised 1:1 to either 25 mg sertraline or placebo, with subsequent flexible dose titration up to 200 mg. The primary outcome is GAD-7 scores at 16 weeks post-randomisation. Secondary outcomes include adverse effects, proportionate change in GAD-7 scores including 50% reduction, social anxiety, obsessive-compulsive symptoms, panic attacks, repetitive behaviours, meltdowns, depressive symptoms, composite depression and anxiety, functioning and disability and quality of life. Carer burden will be assessed in a linked carer sub-study. Outcome data will be collected using online/paper methods via video call, face-to-face or telephone according to participant preference at 16, 24 and 52 weeks post-randomisation, with brief safety checks and data collection at 1–2, 4, 8, 12 and 36 weeks. An economic evaluation to study the cost-effectiveness of sertraline vs placebo and a QuinteT Recruitment Intervention (QRI) to optimise recruitment and informed consent are embedded within the trial. Qualitative interviews at various times during the study will explore experiences of participating and taking the trial medication. Discussion: Results from this study should help autistic adults and their clinicians make evidence-based decisions on the use of sertraline for managing anxiety in this population. Trial registration: ISRCTN, ISRCTN15984604. Registered on 08 February 2021. EudraCT 2019-004312-66. ANZCTR ACTRN12621000801819. Registered on 07 April 2021. [ABSTRACT FROM AUTHOR]

Background: Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese family members living in Taiwan following an expected death. Methods: MEDLINE, PsycINFO, CINAHL, China Academic Journal Database, and Chinese Electronic Periodical Services were searched with no date restrictions from inception to 20 October 2022. The methodological rigour of studies was assessed using Hawker's appraisal tool. A narrative synthesis approach using Popay's work was employed to synthesise the findings of the studies. Studies investigating Taiwanese family members' bereavement experiences were included. We excluded papers studying bereavement through the death of a child. Results: Searches retrieved 12,735 articles (after de-duplication), 17 of which met the inclusion criteria and were included for synthesis: English [9] and Chinese [8], published between 2006 and 2021. The studies varied in quality with scores ranging from 22 to 33 out of 36. The studies differed in the relationship between participants and the deceased, the bereaved time frames, and the definitions of bereavement. Most studies focussed on family members of cancer patients receiving specialist palliative care. Three bereavement theories and four tools were used. Risk factors of bereavement outcomes included family members feeling less prepared for death and deaths where palliative sedative therapy was used. Protective factors were higher caregiving burden and longer caregiving periods. Four themes regarding Taiwanese bereavement experience were generated: multiple impacts of death; problem-based coping strategies; importance of maintaining connections; influential religious beliefs and rituals. Conclusion: Continuing the relationship with the deceased is a key element of Taiwanese bereavement experience and it is influenced by religious and cultural beliefs. Suppressing or hiding emotions during bereavement to connect with the deceased and maintain harmonious relationships needs to be acknowledged as culturally acceptable and encouraged by some religions in Taiwan. The findings could be potentially relevant for other Chinese populations, predominantly Buddhist countries or other East Asian societies. The role of preparing for death in bereavement outcomes is little understood and requires further research. [ABSTRACT FROM AUTHOR]

Background: The paper deals with older workers and the issue of combining informal care for family members with paid employment, which is increasingly important in the light of socio-demographic changes in society - namely demographic ageing and the lengthening of working life. The topic is highly relevant to the group of non-medical healthcare professions studied, as they combine care in the professional and domestic spheres. Purpose of the research: The aim of the research is to point to gender inequalities in how the combination of formal and informal care impacts the work and personal spheres of (pre-) retirement-age nonmedical healthcare workers. Methods: The article is based on the analysis of 36 qualitative interviews with nonmedical healthcare workers in Czechia. We used thematic analysis and approached the issue of (un)doing gender from a social constructivist perspective. Results: The results suggest that women and men in nonmedical healthcare professions face differences in relation to the double care burden in older age. Women are more likely to be affected by a combination of dual care, which has implications for their workload, financial remuneration, etc., whereas men are under greater pressure to perform at work, which becomes increasingly difficult at older ages. Conclusion: Gendered character of double care has implications for gender inequalities in mental and physical health and for the gender pension gap. [ABSTRACT FROM AUTHOR]

Aim: The aim of this research is to identify the main approaches and domains of palliative care quality assessment through three questionnaires used for this purpose. Design: Systematic review. Methods: The proposed analysis process consists of three stages from 2000 to 2020: (i) massive literature search, (ii) text mining and (iii) systematic reviews carried out on the QLQ C30, Zarit Burden Interview and FAMCARE questionnaires. The Preferred Reporting Items for Systematic Reviews (PRISMA‐P) have guided our research. Results: Sixteen papers were included in our study. The main findings have been summarised using a descriptive narrative synthesis approach. Systematic reviews evidenced that such tools present variable factor structures or latent domains. The results obtained are generally representative of the evidence supporting the factor structure of the QLQ‐C30 in the general cancer population. The factor structure of the Zarit Burden Interview remains ambiguous, although the idea of a unifactorial structure predominates. In the case of FAMCARE, most of the factor structures differ from the initial proposal of Kristjanson. The categorisation of the main subjective assessment approaches could be useful for the construction of a coherent system of indicators to be used in nursing practice. For its part, the variability in the latent dimensionality of the questionnaires analysed could be due to: (i) the characteristics of the sample, (ii) the population studied, (iii) cross‐cultural variability, (iv) the design of the questionnaire and (v) the analysis techniques employed. [ABSTRACT FROM AUTHOR]

Background: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. Methods: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. Discussion: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. Trial registration: ISRCTN92831552. Registered on 26th Oct 2021. [ABSTRACT FROM AUTHOR]

As the U.S. population ages, the demand for long-term care services and support has increased, including those typically provided by informal caregivers. As a result of increased reliance on informal caregivers, caregiver burden is a growing concern, impacting the well-being of caregivers and patient outcomes. This paper explores the development, pilot, and evaluation of a caregiver engagement app designed to alleviate caregiver burden and enhance patient care in rural Michigan counties. Drawing on a multi-step approach, including key-informant interviews, empathy interviews, and focus group discussions, caregiver needs were identified and incorporated into the app's design and interface. The app, genusConnect, provided caregivers with educational resources, care coordination tools, and communication features to support them and patient care. Pre-post intervention data indicated positive perceptions of the app's usability and efficacy in reducing caregiver burden and social isolation. Despite these promising findings, challenges remain in addressing financial support for caregivers and expanding the generalizability of the app to accommodate diverse caregiver populations and patient conditions. Future research should focus on addressing these limitations and further developing the app to better support caregivers and improve patient outcomes. [ABSTRACT FROM AUTHOR]

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Background: Little is known about the effectiveness and implementation of psychosocial interventions for psychosis in low- and middle-income countries (LMICs). In South Asia, specialist psychiatric resources are scarce. Support for psychosis often falls on the family or caregiver which can increase feelings of burden, impact caregivers' wellbeing, and increase mental health stigma. Psychosocial interventions are increasingly used for psychosis in South Asia and could reduce relapse and symptoms, reduce caregiver burden, conserve cost and resources. The aim of this review was to appraise the effectiveness and implementation readiness of psychosocial interventions for people with psychosis in South Asia. Method: A systematic search was conducted on MEDLINE, PsycINFO, Global Health, and Web of Science. The review was prospectively registered on PROSPERO (CRD42022329254). Studies were rated on two scales assessing quality and implementation readiness. Results: Twenty-six papers were included, nine intervention-types including community-based interventions/assertive outreach; CaCBTp; FAP; psychoeducation; cognitive retraining/rehabilitation; social cognition/skills; family/ caregiver intervention; telehealth intervention; yoga-based intervention in six South Asian countries. Findings suggest a multicomponent community-based intervention (MCBI) was the most implementation ready due to its standardisation, good clinical outcomes for patients and caregivers, and training and cost evaluations. Conclusion: Of the included studies, MCBI and community-based outreach interventions utilising lay health workers appear to be the most implementation ready and are suggested to best address the treatment gap in South Asia. [ABSTRACT FROM AUTHOR]

Introduction: Shortened hospital stays have shifted the burden of care for older adults to community, informal (ie, family, caregiver) and formal post-acute care and services, highlighting the need for effective post-hospital stay services and programs. As there is a dearth of information related to community-based, slow-stream rehabilitation program models for older adults transitioning from hospital to home in the Canadian context, the paper describes a mixed methods evaluation of such a program.Materials and Methods: A mixed methods program evaluation, with process- and outcome-related elements, included 1) review and analysis of program documents; 2) observations to examine fidelity. Observation data were coded and summarized using descriptive statistics. Coded information and data were compared to document review data; 3) quantitative assessment of pre-post changes in physical, social, and psychological outcome measure and instrument scores using descriptive statistics, paired t-tests and confidence intervals (p = 0.05); and 4) exploration of acceptability through interviews and focus groups with 41 of the older adult participants and 17 family caregivers. Thematic analysis was used to examine focus group and interview transcripts.Results: Observational data indicated alignment with the program document information overall. Statistically and clinically significant positive trends in improvement for physical outcome measure scores were observed (6-minute Walk Test, Life Space Assessment, Short Physical Performance Battery, Rapid Assessment of Physical Activity). Participants and family caregivers identified several positives and benefits of the program, ie, improvement in physical, social and mental well-being, decreased caregiver burden; and areas for improvement ie, need for more information about the program prior to enrollment and individualization, several of which aligned with the observation and quantitative data.Discussion/Conclusion: This mixed methods program evaluation provided a detailed description of a community-based, slow-stream rehabilitation program for older adults who are transitioning to home post-hospital stay and its participants. Evidence of program fidelity, acceptability, and positive trends in improvement in physical outcome measure scores were found. Information about program strengths and areas for improvement can be used by stakeholders to inform program refinement and enhancement. [ABSTRACT FROM AUTHOR]

Identifying and locating areas – hot spots – that present high concentration of observations in a high-dimensional data set is crucial in many data processing and analysis methods and techniques, since observations that belong to the same hot spot share information and behave in a similar way. A useful tool towards that aim is the reduction of the data dimensionality and the graphical representation of them. In the present paper, a new method to identify and locate hot spots is proposed, based on the Andrews curves. Simulations results demonstrate the performance of the proposed method, which is also applied to a high-dimensional data set, regarding caregiver distress related to symptoms of people with neurocognitive disorder and to the mental effects of the recent outbreak of the COVID-19 pandemic. [ABSTRACT FROM AUTHOR]

Background: Bloodstream infections increase morbidity and mortality in hospitalized patients and pose a significant burden for health care systems worldwide. Optimal blood culture diagnostics are essential for early detection and specific treatment. After assessing the quality parameters at a surgical intensive care unit for six months, we implemented a diagnostic stewardship bundle (DSB) to optimize blood culture diagnostics and then reevaluated its effects after six months. Material and Methods: All patients ≥18 years old and on the ward were included: pre-DSB 137 and post-DSB 158. The standard quality parameters were defined as the number of blood culture sets per diagnostic episode (≥2), the rate of contamination (2–3%), the rate of positivity (5–15%), the collection site (≥1 venipuncture per episode) and the filling volume of the bottles (8–10 mL, only post-DSB). The DSB included an informational video, a standard operating procedure, and ready-to-use paper crates with three culture sets. Results: From pre- to post-interventional, the number of ≥2 culture sets per episode increased from 63.9% (257/402) to 81.3% (230/283), and venipunctures increased from 42.5% (171/402) to 77.4% (219/283). The positivity rate decreased from 15.1% (108/714) to 12.8% (83/650), as did the contamination rate (3.8% to 3.6%). The majority of the aerobic bottles were filled within the target range (255/471, 54.1%), but in 96.6%, the anaerobic bottles were overfilled (451/467). Conclusions: The implementation of DSB improved the quality parameters at the unit, thus optimizing the blood culture diagnostics. Further measures seem necessary to decrease the contamination rate and optimize bottle filling significantly. [ABSTRACT FROM AUTHOR]

Background: Diabetic foot ulcer (DFU) is a severe complication of diabetes and particularly susceptible to infection. DFU infection intervention efficacy is declining due to antimicrobial resistance and a systematic review of economic evaluations considering their economic feasibility is timely and required. Aim: To obtain and critically appraise all available full economic evaluations jointly considering costs and outcomes of infected DFUs. Methods: A literature search was conducted across MedLine, CINAHL, Scopus and Cochrane Database seeking evaluations published from inception to 2019 using specific key concepts. Eligibility criteria were defined to guide study selection. Articles were identified by screening of titles and abstracts, followed by a full-text review before inclusion. We identified 352 papers that report economic analysis of the costs and outcomes of interventions aimed at diabetic foot ulcer infections. Key characteristics of eligible economic evaluations were extracted, and their quality assessed against the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) checklist. Results: 542 records were screened and 39 full-texts assessed for eligibility. A total of 19 papers were included in the final analysis. All studies except one identified cost-saving or cost-effective interventions. The evaluations included in the final analysis were so heterogeneous that comparison of them was not possible. All studies were of "excellent", "very good" or "good" quality when assessed against the CHEERS checklist. Conclusions: Consistent identification of cost-effective and cost-saving interventions may help to reduce the DFU healthcare burden. Future research should involve clinical implementation of interventions with parallel economic evaluation rather than model-based evaluations. [ABSTRACT FROM AUTHOR]

Background: In our companion paper, we addressed the interplay between caregiver impact, out-of-pocket expenditures, and Duchenne Muscular Dystrophy (DMD) disability. We found that DMD caregiver impact could be characterized by four Latent Profile Analysis impact profiles: lowest, lower middle, upper middle, and highest impact. The impact on caregivers was often but not always worse with greater out-of-pocket expenditures. Further, while the lowest-, lower-middle, and highest-impact profiles reflected low, moderate and high disability-related caregiver burden, respectively, the upper-middle profile group was quite variable in level of disability across domains. To better understand the four caregiver-impact profiles, we examine how a comprehensive set of psychosocial factors differentiate the four profile groups. Methods: Psychosocial factors assessed included demographic characteristics, quality of life (QOL), stress, cognitive appraisal, reserve-building, and general and COVID-specific resilience. Linear modeling examined relationships between impact profiles and psychosocial factors. We used effect size rather than p-value as the criterion for determining relevance of the broad range of characteristics examined. Results: Multivariate analyses implicated stress and environmental mastery, appraisal sampling of experience, COVID-specific variables, appraisal standards of comparison, appraisal goals, demographics, appraisal combinatory algorithm, reserve-building, and resilience, in order of prominence (average eta2 = 0.29, 0.29, 0.16, 0.15, 0.09, 0.07, 0.07, 0.06, 0.05, and 0.02, respectively). On the whole, comparisons of highest-versus-lowest impact profiles revealed more and larger differences than comparisons of upper-middle versus lower-middle impact profiles. Life stress, goals, and reserve-building activities had a smaller differentiating effect in the middle groups. Conclusion: A more comprehensive 'story' about DMD caregiver impact involves life stress, environmental mastery, COVID-specific variables, and cognitive and behavioral factors. Implications are discussed for coaching interventions to support DMD caregivers. [ABSTRACT FROM AUTHOR]

Background The coronavirus pandemic precipitated an increase in admissions to intensive care units (ICU). The related medium to long-term sequelae of critical illness posed a significant challenge to function and quality of life after discharge from the acute hospital, often requiring continued therapeutic input. Current evidence suggests that exercise therapy is effective in rehabilitating multiple systemic conditions. However, its role in post-ICU recovery remains unclear. The objective of this article was to discuss the merits and demerits of the exercise in subacute post-ICU settings based on available evidence. Effective, evidence-based rehabilitation from critical illness is crucial due to the increased number of patients and the significant burden on care and participation of those individuals. Methods The materials for this discursive review were selected after several database searches and analysis of available articles. As a result, six papers were found, four of which provided evidence for the beneficial effect of exercise in subacute rehabilitation of post-ICU patients, and two reported no differences between interventions and control groups.* Results Most of the studies found cardiovascular exercise to be safe and somewhat beneficial. However, adherence and attrition were problematic in this patient group, and the studies suffered methodological and measurement problems regarding group selection, exercise prescription and outcome measures applied. Conclusion The existing evidence base did not allow an informed consensus regarding the value of exercise in the subacute post-ICU recovery or lack thereof. Therefore, further investigation into patient retention strategies, exercise prescription and the choice of appropriate outcome measures is necessary. [ABSTRACT FROM AUTHOR]

The support provided by carers of people living with dementia results in savings for the UK economy; however, providing this care has a significant impact on carers. Supports are needed to ensure that carers can continue to provide care, and carers should be involved in the generation of the evidence necessary to develop such support. However, this relies on their ability to meaningfully engage with research, yet current data collection methods create obstacles to engagement. In this paper, we aim to provide a critical examination of approaches to qualitative data collection with carers and produce recommendations for the design of inclusive research. First, different approaches to qualitative data collection are discussed and appraised. Following this, a case study of inclusive research is presented, illustrating how carers can be facilitated to engage in research. Finally, recommendations for inclusive research are offered, including the collection of data without the cared-for person present, building additional care into a study design, providing 'incidental funds,' offering sustenance and remuneration, and undertaking research in a neutral space. These recommendations are designed to facilitate the involvement of carers in research and promote the use of more varied or multifaceted methods to develop the current evidence base. [ABSTRACT FROM AUTHOR]

Background: Gaucher disease (GD) is a rare autosomal recessive lysosomal storage disorder. GD types 2 and 3 are known as neuronopathic Gaucher disease (nGD) because they have brain involvement that progresses over time. Implementing a systematic approach to the collection of real-world clinical and patient-relevant outcomes data in nGD presents an opportunity to fill critical knowledge gaps and ultimately help healthcare providers in the management of this patient population. This paper summarizes the development of a patient-initiated Gaucher Registry for Development Innovation and Analysis of Neuronopathic Disease (GARDIAN). Methods: The International Gaucher Alliance led the GARDIAN planning, including governance, scope, stakeholder involvement, platform, and reporting. Registry element input was determined in a series of meetings with clinical experts, patients, and caregivers, who identified key clinical variables and the draft content of nGD patient-reported outcomes (PRO) and observer-reported outcomes (ObsRO) focusing on symptoms, patient physical and emotional functioning. These were then tested in cognitive interviews with patients with nGD (> 12 years of age) and caregivers. Results: Core registry data elements (n = 138) were identified by seven global clinical experts from Egypt, Germany, Israel, Japan, United Kingdom (UK), and United State (US) and reviewed via online Delphi method by 14 additional clinicians with experience of nGD from six countries and three pharmaceutical representatives. The elements were consistent with those identified via interviews with 10 patients/caregivers with nGD from Japan, Sweden, UK, and US. Key domains identified were demographics, diagnostic information, health status, clinical symptomatology, laboratory testing, treatment, healthcare resource utilization, aids/home improvements, and patient/caregiver burden and quality of life, specifically physical functioning, self-care, daily and social activities, emotional impacts, support services, and caregiver-specific impacts. Nine caregivers and six patients from the US, UK, China, Mexico, Egypt, and Japan participated in the cognitive interviews that informed revisions to ensure that all items are understandable and interpreted as intended. Conclusions: The comprehensive set of clinical and patient relevant outcomes data, developed collaboratively among all stakeholders, to be reported using GARDIAN will bridge the many gaps in the understanding of nGD and align with regulatory frameworks on real-world data needs. [ABSTRACT FROM AUTHOR]

Background: In Canada, publicly-funded home care programs enable older adults to remain and be cared for in their home for as long as possible but they often differ in types of services offered, and the way services are delivered. This paper examines whether these differing approaches to care shape the pathway that home care clients will take. Older adult client pathways refer to trajectories within, and out of, the home care system (e.g., improvement, long term care (LTC) placement, death). Methods: A retrospective analysis of home care assessment data (RAI-HC was linked with health administrative data, long-term care admissions and vital statistics in Nova Scotia Health (NSH) and Winnipeg Regional Health Authority (WRHA). The study cohort consists of clients age 60 + years, admitted to home care between January 1, 2011 to December 31, 2013 and up to four years from baseline. Differences in home care service use, client characteristics and their pathways were tested across the two jurisdictions overall, and among the four discharge streams within jurisdictions using t-tests and chi-square tests of significance. Results: NS and WHRA clients were similar in age, sex, and marital status. NS clients had higher levels of need (ADL, cognitive impairment, CHESS) at base line and were more likely discharged to LTC (43% compared to 38% in WRHA). Caregiver distress was a factor correlated with being discharged to LTC. While a third remained as home care clients after 4 years; more than half were no longer in the community – either discharged to LTC placement or death. Such discharges occurred on average at around two years, a relatively short time period. Conclusions: By following older clients over 4 years, we provide enhanced evidence of client pathways, the characteristics that influence these paths, as well as the length of time to the outcomes. This evidence is central to identification of clients at risk in the community and aids in planning for future home care servicing needs that will allow more older adults to remain living in the community. [ABSTRACT FROM AUTHOR]

Background : Informal caregivers of people with dementia are crucial in dementia care. However, they are insufficiently supported and report caregiver burdens, which urges the need for cost-effective interventions aimed at supporting caregivers. This paper presents the design of a study evaluating the effectiveness, cost-effectiveness, and cost-utility of a blended self-management program for early-stage dementia caregivers. Methods/design: A pragmatic, cluster randomized controlled trial with a shared control group will be conducted. Participants will be informal caregivers of people with early-stage dementia and will be recruited by local care professionals. Randomization will be carried out at the level of the care professional level in a ratio of 35% to 65% (control arm vs. intervention arm). Participants in the control arm will receive care as usual and the intervention arm will receive the blended care self-management program "Partner in Balance" within a usual care setting in the Netherlands. Data will be collected at baseline and at 3-, 6-, 12-, and 24-month follow-ups. The primary outcome for effectiveness (part 1) is care management self-efficacy. For the health-economic evaluation (part 2) total care costs and the quality of life for individuals with dementia (cost-effectiveness) and quality-adjusted life years (cost-utility) will be the base case analysis. Secondary outcomes (parts 1 and 2) will include depression, anxiety, perceived informal caregiving stress, service-use self-efficacy, quality of life, caregivers' gain, and perseverance time. A process evaluation (part 3) will investigate the internal and external validity of the intervention. Discussion: In this trial, we plan to evaluate the effectiveness, cost-effectiveness, and cost-utility of "Partner in Balance" among informal caregivers of people with dementia. We expect to find a significant increase in care management self-efficacy, and the program to be cost-effective, and provide valuable insights to stakeholders of "Partner in Balance." Trial registration: ClinicalTrials.gov, NCT05450146. Registered on 4 November 2022. [ABSTRACT FROM AUTHOR]

Dealing with paediatric-onset multiple sclerosis is particularly challenging for the young patients and their families, due to its unpredictable symptoms and uncertain outcome. This review aimed at synthesising the qualitative evidence regarding the perspectives about paediatric-onset multiple sclerosis, as expressed by the patients and/or their parents. A literature search was conducted on PubMed and CINAHL. The advanced multi-field search allowed to perform an abstract/title search in both databases, using keywords, combined through Boolean operators. Additional search strategies were adopted: searching the reference list of the selected papers; searching for key authors in the field. All the relevant papers were thoroughly revised using The Joanna Briggs Institute's data extraction form for qualitative evidence as a guidance. Eight papers were selected. The analysis of these papers allowed to identify some common issues pertaining paediatric-onset multiple sclerosis: (1) onset of symptoms, (2) diagnostic process, (3) reaction to the diagnosis, (4) management and acceptance of multiple sclerosis. The burden of multiple sclerosis was confirmed. However, the young patients and their parents can adjust to the disease. Both the community and the health care professionals must strive to prevent the families dealing with multiple sclerosis from experiencing solitude and rejection. [ABSTRACT FROM AUTHOR]

The aim of this paper is to understand the current situation of the care burden of patients with mental illness in remission and the factors affecting it in order to provide a scientific basis for targeted interventions. This paper reviews the concept of telemedicine, the application of telemedicine in home hospice care, and the remaining problems and improvement strategies of telemedicine in home hospice care, with the aim of providing a reference for the application of telemedicine in home hospice care in China. The Zarit Burden Scale, Family Care Scale, and Social Functioning Scale were used to conduct one-to-one interviews with 201 schizophrenic patients in remission and their primary caregivers in Hubei Province. Among them, 66, 72, and 25 cases (32.8%, 35.9%, and 12.4%) had mild, moderate, and severe burdens, respectively. Caregivers' family care and patients' social functioning were generally poor. The results of multiple linear regression analysis showed that caregiver age, caregiver education, caregiver family care, patient medical costs, and patient social functioning were factors influencing the burden of care for patients with schizophrenia in remission (P < 0.05). The government, mental health centers, and families should understand the level of caregiving burden of patients with schizophrenia in remission and the factors influencing it and provide targeted measures to reduce the caregiving burden. [ABSTRACT FROM AUTHOR]

Aim: To determine whether functional impairments and autonomic symptoms are correlated in young people with developmental and epileptic encephalopathies (DEEs). Method: Cross‐sectional, online surveys (2018–2020) of parents recruited from family groups obtained information on several aspects of children's conditions including functional abilities (mobility, hand use, eating, and communication), 18 autonomic symptoms in six groups (cardiac, respiratory, sweating, temperature, gastrointestinal, and other), and parental stress. Bivariate and multivariable logistic regression analyses examined associations of dysautonomias with functional impairment, adjusted for type of DEE and age. Results: Of 313 participants with full information on function and dysautonomias, 156 (50%) were females. The median age was 8 years (interquartile range 4–12y); 255 (81%) participants had symptoms in at least one autonomic symptom group; 283 (90%) had impairment in at least one functional domain. The number of functional impairment domains and of autonomic symptom groups varied significantly across DEE groups (both p<0.001). The number of functional impairment domains and of autonomic symptom groups were correlated (Spearman's r=0.35, p<0.001) on bivariate and multivariable analysis adjusted for DEE group and age. Parental stress was also independently correlated with dysautonomias (p<0.001). Interpretation: Parent‐reported dysautonomias are common in children with DEEs. They correlate with extent of functional impairment and may contribute to caregiver stress. What this paper addsDysautonomic symptoms are common in young people with developmental and epileptic encephalopathies (DEEs).Burden of dysautonomias is strongly correlated with burden of functional impairments.Aspects of dysautonomic function may provide biomarkers of DEE disease severity. What this paper adds: Dysautonomic symptoms are common in young people with developmental and epileptic encephalopathies (DEEs).Burden of dysautonomias is strongly correlated with burden of functional impairments.Aspects of dysautonomic function may provide biomarkers of DEE disease severity. This original article is commented by Rheims on page 1367 of this issue. [ABSTRACT FROM AUTHOR]

This paper focuses on three areas: the first is a review of current knowledge about social and service robots for elderly care. The second is an optimization conceptual model aimed at maximizing the efficiency of assigning robots to serve the elderly. The proposed multi-criteria optimization model is the first one proposed in the area of optimization for robot assignment for the elderly with robot utilization level and caregiver stress level. The third is the findings of studies on the needs, requirements, and adoption of technology in elderly care. We consider the use of robots as a part of the ENRICHME project for long-term interaction and monitoring of older persons with mild cognitive impairment, to optimize their independence. Additionally, we performed focus group discussions (FGD) to collect opinions about robot-related requirements of the elderly and their caregivers. Four FDGs of six persons were organized: two comprising older adults, and two of the other formal and informal caregivers, based on a detailed script. The statements of older participants and their caregivers were consistent in several areas. The analysis revealed user characteristics, robot-related issues, functionality, and barriers to overcome before the deployment of the robot. An introduction of the robot must be thoroughly planned, include comprehensive pre-training, and take the ethical and practical issues into account. The involvement of future users in the customization of the robot is essential. [ABSTRACT FROM AUTHOR]

This study aimed to identify differences in caregiver burden related to toileting assistance, and examine the factors associated with the most burdensome aspects of providing toileting assistance. In 2019, a self-administered postal survey was conducted with 743 caregivers of older adults who received subsidies for continence products in Komatsu City, Japan. Both family caregivers and nursing home staff answered questions regarding older adults' urinary/fecal symptoms, toileting assistance, and perceived caregiver burden. Older adults living at home had less need for toileting assistance than those in nursing homes. However, family caregivers experienced more burden than nursing home staff. The most frequent physical burden associated with toileting assistance for family caregivers was urinary/fecal leakage from absorbent incontinence products. This burden was linked to family caregivers providing care at home, using a combination of urinary pads and diapers, and symptoms that caused burdens on caregivers including urinary/fecal incontinence, nocturia, and no desire to urinate. These results suggest that leakage caused by the inappropriate use of urinary pads combined with diapers is a source of caregiver burden. Continence care experts should provide guidance to family caregivers of older adults, particularly those who are underweight and frail, regarding the selection and fitting of absorbent incontinence products. [ABSTRACT FROM AUTHOR]

Cervical cancer ranks third among all new cancer cases and causes of cancer deaths in females. The paper provides an overview of cervical cancer prevention strategies employed in different regions, with incidence and mortality rates ranging from high to low. It assesses the effectiveness of approaches proposed by national healthcare systems by analysing data published in the National Library of Medicine (Pubmed) since 2018 featuring the following keywords: "cervical cancer prevention", "cervical cancer screening", "barriers to cervical cancer prevention", "premalignant cervical lesions" and "current strategies". WHO's 90-70-90 global strategy for cervical cancer prevention and early screening has proven effective in different countries in both mathematical models and clinical practice. The data analysis carried out within this study identified promising approaches to cervical cancer screening and prevention, which can further enhance the effectiveness of the existing WHO strategy and national healthcare systems. One such approach is the application of AI technologies for detecting precancerous cervical lesions and choosing treatment strategies. As such studies show, the use of AI can not only increase detection accuracy but also ease the burden on primary care. [ABSTRACT FROM AUTHOR]

Objectives: Rare tumors (RT) collectively account for one quarter of all malignancies in Italy. The low frequency and the large heterogeneity in natural history and outcome of individual diseases, together with a scarcity of epidemiological information make them a challenge for clinical practice, as well as for public healthcare organizations. We conducted a retrospective study to quantify the burden of hospitalization in a real-word setting in patients diagnosed with these diseases in an Italian region. Methods: RT patients were tracked along all hospital stays from 2000 to 2019 using hospital discharge records. Frequency of hospitalizations, average time spent in hospital and median timespan between consecutive admissions were considered. Re-hospitalization rates were analyzed through a multivariable negative binomial regression analysis to adjust for confounding and allowing for over-dispersion in count data. Results: As a whole, 57,329 patients were identified at first stay for all studied tumors. A total of 183,959 admissions were retrieved, along a median of 3 hospitalizations per patient. Median timespan between hospitalizations shortened in the course of the study years (12.5 months in 2000–2004 to 5.4 months in 2015–2019). The overall re-hospitalization rate increased from 0.92 per patient/year (95% CI = 0.81–1.04) in 2000–2004 to 2.17 (95% CI = 1.90–2.47) in 2015–2019. Conclusions: Overall, the hospitalization rate of patients with a RT increased in the twenty years since the 2000 and particularly doubled starting from 2015. A higher burden of hospitalizations was found for tumors of the central nervous system, thoracic cavity, digestive tract and sarcomas. To the best of our knowledge this is the first paper related to access to Italian healthcare facilities of patients with these tumors. [ABSTRACT FROM AUTHOR]

Background: The involvement of mental health service users and their caregivers in health system policy and planning, service monitoring and research can contribute to mental health system strengthening, but as yet there have been very few efforts to do so in low- and middle-income countries (LMICs).Methods: This systematic review examined the evidence and experience of service user and caregiver involvement in mental health system strengthening, as well as models of best practice for evaluation of capacity-building activities that facilitate their greater participation. Both the peer-reviewed and the grey literature were included in the review, which were identified through database searches (MEDLINE, Embase, PsycINFO, Web of Knowledge, Web of Science, Scopus, CINAHL, LILACS, SciELO, Google Scholar and Cochrane), as well as hand-searching of reference lists and the internet, and a snowballing process of contacting experts active in the area. This review included any kind of study design that described or evaluated service user, family or caregiver (though not community) involvement in LMICs (including service users with intellectual disabilities, dementia, or child and adolescent mental health problems) and that were relevant to mental health system strengthening across five categories. Data were extracted and summarised as a narrative review.Results: Twenty papers matched the inclusion criteria. Overall, the review found that although there were examples of service user and caregiver involvement in mental health system strengthening in numerous countries, there was a lack of high-quality research and a weak evidence base for the work that was being conducted across countries. However, there was some emerging research on the development of policies and strategies, including advocacy work, and to a lesser extent the development of services, service monitoring and evaluation, with most service user involvement having taken place within advocacy and service delivery. Research was scarce within the other health system strengthening areas.Conclusions: Further research on service user and caregiver involvement in mental health system strengthening in LMICs is recommended, in particular research that includes more rigorous evaluation. A series of specific recommendations are provided based on the review. [ABSTRACT FROM AUTHOR]

Subjective cognitive decline (SCD) is a subclinical cognitive impairment that is complained by the individual without being objectively supported at clinical, diagnostic, and neuropsychological levels. It can negatively impact on patient’s frailty and quality of life, as well as on the caregiver’s burden. Moreover, it can be prodromal to Mild Cognitive Impairment or dementia. Although the clinical manifestations of SCD can differ along with several cognitive domains, to date there are only screening tools to investigate subjective memory complaints. Thus, the first aim of this paper is to propose a preliminary English and Italian version of a new screening tool called MASCoD (Multidimensional Assessment of Subjective Cognitive Decline); the second aim is to propose its preliminary adoption on a pilot sample. This schedule is a brief test derived from the review of the literature and the clinical experience provided by an experts panelist. From pilot tests, it seems promising as it can help the professional to make differential diagnosis and to predict the risk of developing severe cognitive impairment over time, developing a personalized care path. This screening tool is brief, easily embeddable in usual clinical assessment, and administrable by different professionals. Furthermore, following validation, it will allow to collect manifold cognitive manifestations of SCD, addressing the shortage of previous validated instruments globally assessing cognition affected by this condition. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic has been a major source of stress for informal caregivers for people with dementia. Studies show the unique challenges caregivers face, such as social isolation, extended work hours, and adherence to public health guidelines. We conducted a narrative review of factors impacting well-being of informal caregivers of older adults with dementia during the COVID-19 pandemic. Sixty-four papers were identified as published between June 2020 and December 2021. All studies were conducted in the U.S. or other Western countries and were cross-sectional and conducted prior to COVID-19 vaccines. Articles highlighted increasing burdens such as financial and physical stress, as well as worsened psychological well-being from anxiety and depression. Protective factors such as social support and telehealth interventions also emerged. Limitations include lack of longitudinal information to identify broader themes on caregiving during the pandemic. Studies not only identified new, pandemic-related risk factors, but also a heightened effect of pre-existing risk factors (e.g., income, living situation) on caregiver burden. [ABSTRACT FROM AUTHOR]

SRX246, an orally available CNS penetrant vasopressin (VP) V1a receptor antagonist, was studied in Huntington's disease (HD) patients with irritability and aggressive behavior in the exploratory phase 2 trial, Safety, Tolerability, and Activity of SRX246 in Irritable HD patients (STAIR). This was a dose-escalation study; subjects received final doses of 120 mg BID, 160 mg BID, or placebo. The compound was safe and well tolerated. In this paper, we summarize the results of exploratory analyses of measures of problematic behaviors, including the Cohen–Mansfield Agitation Inventory (CMAI), Aberrant Behavior Checklist (ABC), Problem Behaviors Assessment-short form (PBA-s), Irritability Scale (IS), Clinical Global Impression (CGI), HD Quality of Life (QoL), and Caregiver Burden questionnaires. In addition to these, we asked subjects and caregivers to record answers to short questions about mood, irritability, and aggressive conduct in an eDiary. STAIR was the first rigorously designed study of behavioral endpoints like these in HD. The exploratory analyses showed that SRX246 reduced aggressive acts. Readily observed behaviors should be used as trial endpoints. [ABSTRACT FROM AUTHOR]

Objective: Carers play an important role within the UK mental health system. Those carers who support persons with psychosis can experience a reduction in their own physical and mental health. As part of the Caring for Caregivers (C4C) trial, we piloted a writing intervention (Positive Written Disclosure) that has been shown to improve wellbeing in other populations. Although we reached our recruitment target, we encountered several barriers that made recruitment slower than anticipated. This paper synthesises the process data collected during the C4C trial that relates to the barriers to recruiting and retaining psychosis carers. Results: We encountered four main carer-specific barriers to the recruitment and retention of participants in our study. These were: (1) poor relationship with mental health clinicians, (2) conflicting with the care recipient's (CR) needs, (3) lack of spare time, and (4) lack of services for mental health carers. The interventions to assist carers need to be informed by robust evidence and this requires trials that reach their recruitment targets. By sharing our practical experiences other researchers and clinicians can modify their practices to minimise recruitment difficulties and delay. Trial registration ISRCTN79116352. Retrospectively registered (before the final participant was recruited) on 23rd January 2017 [ABSTRACT FROM AUTHOR]

The incidence of stroke and the burden on health care and society are expected to increase significantly in the coming years, due to the increasing aging of the population. Various sensory, motor, cognitive and psychological disorders may remain in the patient after survival from a stroke. In hemiplegic patients with movement disorders, the impairment of upper limb function, especially hand function, dramatically limits the ability of patients to perform activities of daily living (ADL). Therefore, one of the essential goals of post-stroke rehabilitation is to restore hand function. The recovery of motor function is achieved chiefly through compensatory strategies, such as hand rehabilitation robots, which have been available since the end of the last century. This paper reviews the current research status of hand function rehabilitation devices based on various types of hand motion recognition technologies and analyzes their advantages and disadvantages, reviews the application of artificial intelligence in hand rehabilitation robots, and summarizes the current research limitations and discusses future research directions. [ABSTRACT FROM AUTHOR]

Palliative care is comprised of an interdisciplinary team (IDT) approach with members from different disciplines who collaboratively work together to reduce multidimensional components of pain and suffering and improve quality of life for patients coping with a terminal illness. Psychosocial team members are integral to the palliative care IDT and provide expertise in assessment and empirically validated interventions to address psychological distress. The following paper will provide a review of different facets of psychological distress experienced by advanced cancer patients such as psychological disorders, existential distress, spiritual distress, caregiver distress, parental distress, and grief. Finally, an overview of commonly used screening and assessment tools as well as psychological interventions relevant for the palliative care population is presented. [ABSTRACT FROM AUTHOR]

Retinitis Pigmentosa (RP), a group of inherited retinal dystrophies characterised by progressive vision loss, is the leading cause of visual disability and blindness in subjects less than 60 years old. Currently incurable, therapy is aimed at restricting degeneration of vision, treating complications, and helping patients to cope with the psychosocial impact of their disease. Hence, RP is associated with a high burden of disease. This paper describes the current therapeutic landscape for RP and the disease burden for patients, caregivers, and society. A review of available data was conducted in three stages: (1) a literature search of publicly available information on all domains of RP; (2) a systematic literature review using Medline, Embase, the Cochrane Library and grey literature (GlobalData) on epidemiology and cost of RP; and (3) qualitative research with senior physicians treating RP patients in the EU4 and the UK to validate research findings from secondary sources. RP severely impacts the daily lives of over a million people worldwide. Progressive vision loss significantly affects the ability to perform basic daily tasks, to maintain employment, and maintain independence. Consequently, most patients will experience reduced quality of life, with a greater emotional and psychological impact than other conditions related to vision loss such as diabetic retinopathy or age-related macular degeneration. RP is also associated with a high level of carer burden, arising from psychological and financial stress. The therapeutic landscape for RP is limited, with few treatment options and minimal guidance for the diagnosis, treatment, and care of patients. A curative intervention, voretigene neparvovec (Luxturna®), only exists for 1– 6% of patients. Although disease management can be successful in developing coping strategies, most patients live with this chronic, progressive condition without interventions to change the disease course. Innovative new therapies can transform the therapeutic landscape, provided appropriate clinical guidance is forthcoming. [ABSTRACT FROM AUTHOR]

Background: Physical frailty is a prevalent syndrome in older adults that increases vulnerability for a range of adverse outcomes including increased dependency and death. Caregivers of older adults experience significant physical, emotional, and financial burden, which is associated with poor physical and mental health. While it is known that care recipients' dementia is associated with burden, the literature regarding the impact of physical frailty on burden has yet to be synthesized. We conducted a systematic review to assess the state of the evidence regarding the relationship between these two prominent concepts in the geriatric literature. Method: We used a structured search of databases to identify original English-language articles. Two researchers screened the titles and abstracts of all 1202 retrieved studies and then full-text versions of 265 retained studies. Screening was based on a priori inclusion criteria, which included discussion of physical frailty, caregiver burden, and a population of community-dwelling older adults without dementia. Nine included papers underwent data abstraction and critical appraisal using the Cochrane Risk of Bias Tool or the Newcastle-Ottawa Scale (for randomized controlled trials or cross-sectional studies, respectively). Heterogeneity of the included studies precluded meta-analysis. Results: Five publications had the same author and drew from the same population; these were treated as a single study. Three of our studies were of limited value since they did not include a validated measure of frailty. While caregivers of frail older adults experience burden, the scarce available evidence and lack of studies comparing this population with normative values does not allow conclusions to be drawn about the strength or nature of the relationship. Judging from excluded studies, the term "frailty" is often used without reference to a clear definition or is treated as synonymous with functional impairment or advanced age. Conclusions: Our review suggests that caregivers of frail older adults experience burden and that the degree of burden may differ from that of other caregiver populations. The limited evidence does not allow conclusions to be drawn or to inform clinical practice. Further research is needed, given the salience of physical frailty and burden. [ABSTRACT FROM AUTHOR]

Background: Although the majority of German patients in a palliative state prefer to die at home, the actual place of death is most often a hospital. Unplanned hospital readmissions (UHA) not only contradict most patients' preferences but also increase the probability of an aggressive end-of-life treatment. As limited knowledge is available which factors contribute to an UHA, the PRePP-project aims to explore predictors related to informal caregivers (IC) as well as medical and structural factors. Methods: This prospective, observational, mono-centric study will assess structural and medical factors as well as ICs' psychological burden throughout seven study visits. Starting in April 2021 it will consecutively include 240 patients and their respective IC if available. Standardized measures concerning ICs' Quality of Life (WHOQOL-BREF), psychological distress (NCCN-Distress Thermometer), anxiety (GAD-7) and depressiveness (PHQ-9) will be assessed. If participants prefer, assessment via phone, browser-based or paper-based will be conducted. Medical records will provide routinely assessed information concerning patient-related characteristics such as gender, age, duration of hospital stay and medical condition. Nurse-reported data will give information on whether hospitalization and death occurred unexpectedly. Data will be progressed pseudonymized. Multivariable regression models will help to identify predictors of the primary endpoint "unplanned hospital admissions". Discussion: The PRePP-project is an important prerequisite for a clinical risk assessment of UHAs. Nevertheless, it faces several methodological challenges: as it is a single center study, representativity of results is limited while social desirability might be increased as the study is partly conducted by the treatment team. Furthermore, we anticipated an underrepresentation of highly burdened participants as they might refrain from participation. Trial registration: This study was retrospectively registered 19 October 2021 at clinicaltrials.gov (NCT05082389). https://clinicaltrials.gov/ct2/show/NCT05082389 [ABSTRACT FROM AUTHOR]