Informal Care Costs Research Articles

Cost-effectiveness analysis of palliative care of cancer patients in the end of life

Home palliative care services of terminal patients may associate home care preferences with desirable health outcomes. This study aimed to evaluate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the public health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder's perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder's perspective in the public health subsector in Río Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder's perspective, it refers to the salaries of the health team.

Health related quality of life, service utilization and costs for patients with Huntington’s disease in Norway

BackgroundHuntington’s disease (HD) is a progressive genetic neurodegenerative disease accompanied by mental and neurocognitive disabilities, which requires long-term and comprehensive treatment and care. Information on the health and economic burden of HD is scarce, but essential for conducting health economic analyses, in light of the prospect of new therapies for HD. In this study, we aim to identify values for Health-Related Quality of Life (HRQoL), describe service utilization and costs, and their associations with clinical and socio-demographic variables across all phases of HD.MethodsA cross-sectional study including 86 patients across all phases of HD. Values of HRQoL were calculated based on EQ-5D-3L index scores. Additionally, health care and societal costs were estimated based on service utilization collected using the Client Service Receipt Inventory (CSRI) and data from the patients’ interviews. Total societal costs included costs of primary and secondary health care services, informal care and productivity loss of the patients. Multiple regression analyses were used to investigate associations between socio-demographic and clinical variables on HRQoL and costs.ResultsHRQoL values declined, while total costs increased across disease severity. Total six-month healthcare costs and total societal costs were € 18,538 and € 66,789 respectively. Healthcare and societal costs doubled from early to middle phase, and tripled from middle to advanced disease phase. Main six-month cost components for the three disease phases were informal care costs (€ 30,605) accounting for approximately half the total societal costs, and costs due to production loss (€ 18,907) being slightly higher than the total healthcare costs. Disease severity and gender were found to have the strongest effect on both values of HRQoL and costs.ConclusionsReported values of HRQoL and costs including costs for production loss may be used in modelling the cost-effectiveness of treatment for HD. Our results highlight the crucial role the informal caregivers play in the care provided to HD patients in all disease phases. Future research should focus on the estimation of productivity loss among informal caregivers.

Formal and Informal Costs of Care for People With Dementia Who Experience a Transition to Hospital at the End of Life: A Secondary Data Analysis.

To explore formal and informal care costs in the last 3months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs. Cross-sectional study using pooled data from 3 mortality follow-back surveys. People who died with dementia. The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs. A total of 146 people who died with dementia were included. The mean age was 88.1years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3months. The mean total costs of care in the last 3months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs. Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs.

P11 Informal Care Costs According to Age and Proximity to Death to Support Cost-Effectiveness Analyses

Costs of informal care are ignored in many cost-effectiveness analyses (CEA) conducted from a societal perspective. However, these costs are especially relevant for life saving interventions targeted at the elderly. In this study, we predict informal care costs by age and proximity to death, and show how these predictions can be included in CEA.

Severe Aplastic Anemia: A Systematic Literature Review on Costs of Illness

Introduction: Aplastic anemia (AA) is a rare and potentially life-threatening disorder of inherited or acquired bone marrow failure, progressively leading to pancytopenia. AA has an annual incidence estimated at 2 cases per million in Europe and US/Canada, which tends to be significantly higher in East Asia. Severe clinical presentations of the disease constitute hematological emergencies and incur a substantial economic burden to health systems, patients, and caregivers. Our systematic literature review (SLR) of costs of illness of severe AA (SAA) globally describes the economic implications of the disease. Methods: This SLR was conducted using MEDLINE (through PubMed), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Scopus, Web of Science, National Health Service Economic Evaluation Database, and the National Health Service Health Technology Assessment Database. The objective was to identify records of studies published from inception up until 31 May 2022, reporting estimates of direct, indirect, and total costs of illness of SAA in any currency. No eligibility criteria concerning study type, language, geography, or time limits were employed. Retrieved records were screened for eligibility by two reviewers independently and any disagreements were resolved by a third investigator. Extracted data were then quality checked. Costs were adjusted and converted to 2021 US dollars. Results: The search identified 768 publications, of which 28 were selected for full-text review and 11 were included in the final analysis. Four studies were from the USA and one each from Sweden, Germany, France, South Africa, Mexico, Brazil, and China. Five studies presented retrospective analyses of real-world data, five reported cost-effectiveness treatment data and one estimated the budget impact of treatment for SAA. Two studies presented cost estimates by age strata and one evaluated SAA treatment-related costs in children. The mean per patient monthly direct cost ranged from $430 (immunosuppressive therapy (IST), China) to $40,107 (IST, USA). The mean direct cost in children treated for SAA amounted to $18,029 and for patients ≤21 years of age the total cost of illness was estimated between $979 and $23,351 per patient. SAA-related costs were lower among older patients. None of the studies reported informal care or indirect costs. Overall, the cost key driver were prescription medications. However, the associated costs to prescription medicines were counterbalanced by reduced hospitalizations, outpatient costs and rescue medication used. Conclusions: To the best of our knowledge, no study has systematically reviewed the literature for estimates pertaining to the economic impact of SAA. Available evidence on the costs of illness of the disease is extremely limited and considerably heterogenous in terms of geographical territories. Further research is needed to identify excess costs and cost variations so as to improve disease management practices in purpose of attaining better patient outcomes and disease prognosis at lower cost.

Quality of life, out-of-pocket expenditures, and indirect costs among patients with the central nervous system tumors in Thailand.

The aim of this study was to investigate out-of-pocket (OOP) expenditures, indirect costs, and health-related quality of life (HRQoL) associated with the central nervous system (CNS) tumors in Thailand. A prospective study of CNS tumor patients who underwent first tumor resection at a tertiary care institution in Thailand was conducted. Patients were interviewed during hospitalization for undergoing first surgery. Within 6 months, they were interviewed once more if the disease continued to progress. Costs collected from a patient perspective and converted to 2019 US dollars. For dealing with these skewed data, a generalized linear model was used to investigate the effects of disease severity (malignancy, progressive disease, Karnofsky performance status score, and histology) and other factors on costs (OOP, informal care, productivity loss, and total costs). P < 0.05 was considered statistical significant for all analysis. Among a total of 123 intracranial CNS tumor patients, there were 83 and 40 patients classified into benign and malignant, respectively. In the first brain surgery, there was no statistical difference in HRQoL between patients with benign and malignant tumors (P = 0.072). However, patients with progressive disease had lower HRQoL mean scores at pre-operative and progressive disease periods were 0.711 (95% confidence interval [CI]: 0.662-0.760) and 0.261 (95% CI: 0.144-0.378), respectively. Indirect expenditures were the primary cost driver, accounting for 73.81% of annual total costs. The total annual costs accounted for 59.81% of the reported patient's income in malignant tumor patients. The progressive disease was the only factor that was significantly increases in all sorts of costs, including the OOP (P = 0.001), the indirect costs (P = 0.013), and the total annual costs (P = 0.001). Although there was no statistical difference in HRQoL and costs between patients with benign and malignant tumor, the total costs accounted for more than half of the reported income in malignant tumor patients. The primary cause of significant increases in all costs categories was disease progression.

The economic value of informal long-term care

Abstract Informal care makes up a significant share of long-term care (LTC) and is likely to become even more important in the near future because of the ageing population, rising numbers of chronic patients and shortages of formal carers. At the same time, informal care is under pressure because of societal developments (shrinking family sizes, increased participation of women on the labour market, rising retirement age and geographical dispersion of families). These developments may further enhance the effect of informal care in terms of individuals’ quality of life and opportunity costs caused by work absence and productivity losses. Against this background, Ecorys has performed studies, to empirically estimate the social value of informal LTC and increase the awareness on its importance. The results of the study, commissioned by the European Commission, demonstrate that informal caregivers represent about 80% of all caregivers (measured in FTE). If paid for, these hours would cost between 2.4 and 2.7% of EU GDP. Currently, these costs are not paid and the actual costs of informal care are estimated at 1.05% of EU GDP, mostly in lost tax revenues. European countries vary greatly in the extent to which informal carers are supported by public policies. Only some countries have cash benefit schemes to compensate for the loss of income from employment. Specific benefits and leave entitlements to support informal caregivers are often insufficient or lacking. In several studies in the Netherlands, Ecorys found that total social costs of informal care are estimated at 2.54% of NL GDP (€22 billion/year) and informal caregivers perceive increasing economic and psychological burden and are at higher risk of depression and burn out. Government policies are developed to better support informal caregivers. Key messages

Indirect Costs of Inflammatory Bowel Diseases: A Comparison of Patient-Reported Outcomes Across 12 European Countries.

National studies report a high variability of indirect costs of inflammatory bowel disease (IBD). In this study, selected aspects of the societal burden of IBDs were compared between 12 European countries. A questionnaire-based study among adult patients with IBD was performed. Data on patient characteristics, productivity loss, and informal care were collected. The costs of productivity loss were assessed from the social perspective. The cost of absenteeism and presenteeism was valuated using the gross domestic product per worker. Informal care was measured by time inputs of relatives and friends to assist patients. Productivity loss among informal caregivers outside their paid work was valuated with the average wage. The results were adjusted for confounders and multiplicity. Responses from 3687 patients (67% employed) were analyzed. Regular activity (outside paid work) impairment did not differ between countries, but a significant difference in informal care and productivity loss was observed. There were no differences in indirect costs between the types of IBD across the countries. The mean annual cost of absenteeism, presenteeism, and informal care varied from €1253 (Bulgaria) to €7915 (Spain), from €2149 (Bulgaria) to €14 524 (Belgium), and from €1729 (Poland) to €12 063 (Italy), respectively. Compared with patients with active disease, those with IBD in remission showed a lower indirect cost by 54% (presenteeism, P < .001) or 75% (absenteeism, informal care, P < .001). The study showed a high relevance of the indirect cost of IBD in the context of economic evaluation, as well as a between-country variability of work-related impairment or informal care.

Individual and national financial impacts of informal caring for people with mental illness in Australia, projected to 2030.

Mental illness has a significant impact not only on patients, but also on their carers' capacity to work. To estimate the costs associated with lost labour force participation due to the provision of informal care for people with mental illness in Australia, such as income loss for carers and lost tax revenue and increased welfare payments for government, from 2015 to 2030. The output data of a microsimulation model Care&WorkMOD were analysed to project the financial costs of informal care for people with mental illness, from 2015 to 2030. Care&WorkMOD is a population-representative microsimulation model of the Australian population aged between 15 and 64 years, built using the Australian Bureau of Statistics Surveys of Disability, Ageing and Carers data and the data from other population-representative microsimulation models. The total annual national loss of income for all carers due to caring for someone with mental illness was projected to rise from AU$451 million (£219.6 million) in 2015 to AU$645 million (£314 million) in 2030 in real terms. For the government, the total annual lost tax revenue was projected to rise from AU$121 million (£58.9 million) in 2015 to AU$170 million (£82.8 million) in 2030 and welfare payments to increase from AU$170 million (£82.8 million) to AU$220 million (£107 million) in 2030. The costs associated with lost labour force participation due to the provision of informal care for people with mental illness are projected to increase for both carers and government, with a widening income gap between informal carers and employed non-carers, putting carers at risk of increased inequality.

What will the cardiovascular disease slowdown cost? Modelling the impact of CVD trends on dementia, disability, and economic costs in England and Wales from 2020-2029.

There is uncertainty around the health impact and economic costs of the recent slowing of the historical decline in cardiovascular disease (CVD) incidence and the future impact on dementia and disability. Previously validated IMPACT Better Ageing Markov model for England and Wales, integrating English Longitudinal Study of Ageing (ELSA) data for 17,906 ELSA participants followed from 1998 to 2012, linked to NHS Hospital Episode Statistics. Counterfactual design comparing two scenarios: Scenario 1. CVD Plateau-age-specific CVD incidence remains at 2011 levels, thus continuing recent trends. Scenario 2. CVD Fall-age-specific CVD incidence goes on declining, following longer-term trends. The main outcome measures were age-related healthcare costs, social care costs, opportunity costs of informal care, and quality adjusted life years (valued at £60,000 per QALY). The total 10 year cumulative incremental net monetary cost associated with a persistent plateauing of CVD would be approximately £54 billion (95% uncertainty interval £14.3-£96.2 billion), made up of some £13 billion (£8.8-£16.7 billion) healthcare costs, £1.5 billion (-£0.9-£4.0 billion) social care costs, £8 billion (£3.4-£12.8 billion) informal care and £32 billion (£0.3-£67.6 billion) value of lost QALYs. After previous, dramatic falls, CVD incidence has recently plateaued. That slowdown could substantially increase health and social care costs over the next ten years. Healthcare costs are likely to increase more than social care costs in absolute terms, but social care costs will increase more in relative terms. Given the links between COVID-19 and cardiovascular health, effective cardiovascular prevention policies need to be revitalised urgently.

Economic costs of dementia in 11 countries in Europe: Estimates from nationally representative cohorts of a panel study.

SummaryBackgroundWith population aging, the economic burden of dementia is growing in Europe. Understanding the economic costs of dementia provides an important basis for prioritization in public health policy and resource allocation.MethodsWe calculate the economic costs of dementia, including both direct medical and social care costs and indirect costs of informal care, for 11 countries in Europe. Costs are estimated using population-representative data from the Survey of Health, Ageing, and Retirement in Europe from 2004 to 2017, supplemented with external information about wages of care workers, dementia prevalence, and fraction of direct costs paid by other sources. We report overall costs for persons, both living and deceased with dementia and also isolate the costs attributable to dementia by estimating regression models that relate a given cost component to dementia while controlling for coexisting conditions and demographics. We make the monetary data comparable by adjusting for inflation and Purchasing Power Parity to 2018 euros.FindingsAverage annual direct out of pocket costs that can be attributed to dementia vary between EUR 253(95% CI: -17 to 522) and EUR 859 (95% CI: -587 to 2306) across countries, but are not statistically significant after adjustment for multiple testing. Average annual hours of informal care that can be attributed to dementia vary between 163 (95% CI: 27–299) and 1051 (95% CI: 15–2086) annual hours across countries, and are statistically significant in all countries before adjustment for multiple testing, and in seven out of 11 countries after this adjustment. Combining these estimates with external wage information in each country implies a burden between EUR 2687.4 (95% CI: 704.5 to 4670.3) and EUR 15,468 (95% CI: 8088.1 to 22,847.9) per individual with dementia per year depending on the country. When combined with external estimates of the fraction of direct costs covered by other payment sources (insurance, government) and numbers of individuals with dementia, estimates of the total costs of dementia at the country level vary from EUR 162.9 million (95% CI: 56.3 to 269.5) in Estonia to EUR 32,606.9 (95% CI: 13,893.9 to 51,319.9) in Germany. Informal care costs account for the largest proportion of costs attributable to dementia in all European countries, varying between about 50% and about 90%.InterpretationThe economic burden of dementia on families in terms of direct out-of-pocket and informal care costs varies greatly by country, depending on the health and social care systems. Informal care costs accounts for the largest proportion of costs, requiring policy attention to dementia care provision and costs.FundingThis project is funded by the National Institute on Aging, National Institutes of Health, USA (R01 AG030153).

The Potential Economic Value of Lecanemab in Patients with Early Alzheimer's Disease Using Simulation Modeling.

IntroductionAlzheimer’s disease (AD) is a progressive, neurodegenerative disease that affects memory, thinking, and behavior and places a substantial economic burden on caregivers and healthcare systems. This early-phase study aimed to model lecanemab, a humanized monoclonal antibody targeting amyloid protofibrils, for patients with early AD, and estimate the potential value-based price (VBP) of lecanemab + standard of care (SoC) compared to SoC alone given an expected product profile of lecanemab informed by data from a phase II trial from payer and societal perspectives using a broad range of willingness-to-pay (WTP) thresholds in the USA.MethodsA disease simulation model was used to capture how key AD pathology components relate to the clinical and economic presentation of AD. The effects of disease modification and early intervention on disease progression were simulated on the basis of BAN2401-G000-201 trial data as well as published literature. Model outcomes included patient and caregiver quality-adjusted life years (QALYs), total life years, and total care costs including direct medical and non-medical costs for healthcare resource use and indirect costs for caregiving over a lifetime horizon.ResultsLecanemab + SoC was predicted to result in a gain of 0.61 QALYs (societal, 0.64) and a $8707 decrease in total non-treatment costs (societal, $11,214) vs. SoC alone for patients with early AD. For a WTP threshold range of $50,000 to $200,000 per QALY gained, the potential annual VBP of lecanemab was estimated at $9249 (societal, $10,400) to $35,605 (societal, $38,053), respectively. Other patient subsets, treatment stopping rules, and dosing regimens were used to assess the sensitivity of the VBP estimates.ConclusionThe early model predicted that lecanemab would potentially improve long-term health outcomes and reduce formal and informal care costs, resulting in a range of VBPs that reflect the value of lecanemab to society.

Valuing the "Burden" and Impact of Rare Diseases: A Scoping Review.

Introduction: Rare diseases (RDs) are a severe, chronic, degenerative and often life-threatening group of conditions affecting more than 30 million people in Europe. Their impact is often underreported and ranges from psychological and physical symptoms seriously compromising quality of life. There is then a need to consolidate knowledge on the economic, social, and quality of life impacts of rare diseases. Methods: This scoping review is the result of 9 qualitative interviews with experts and a literature search on Cost-of-Illness (COI) studies and quality of life (QoL) studies following the PRISMA methodology. Grey literature was also included to complement findings. Results. 63 COI studies were retrieved, covering 42 diseases and a vast majority of them using a prevalence-based approach (94%). All studies included medical costs, while 60% included non-medical costs, 68% productivity losses and 43% informal care costs. 56 studies on QoL were retrieved, mostly from Europe, with 30 different measurement tools. Grey literature included surveys from the pharmaceutical industry and patient organisations. Discussion: The majority of studies evaluating the impact of RDs on the individual and society use the COI approach, mostly from a societal perspective. Studies often vary in scope, making them difficult to consolidate or compare results. While medical costs and productivity losses are consistently included, QoL aspects are rarely considered in COI and are usually measured through generic tools. Conclusion: A comprehensive study on impact of rare disease across countries in Europe is lacking. Existing studies are heterogeneous in their scope and methodology and often lack a holistic picture of the impact of rare. Consensus on standards and methodology across countries and diseases is then needed. Studies that consider a holistic approach are often conducted by pharmaceutical companies and patient organisations exploring a specific disease area but are not necessarily visible in the literature and could benefit from the sharing of standards and best practices.

Pediatric Research Challenge, Alignment with the National Research Agenda

Pediatric Research Challenge, Alignment with the National Research Agenda

Does the inclusion of societal costs change the economic evaluations recommendations? A systematic review for multiple sclerosis disease

BackgroundMultiple sclerosis imposes a heavy burden on the person who suffers from it and on the relatives, due to the caregiving load involved. The objective was to analyse whether the inclusion of social costs in economic evaluations of multiple sclerosis-related interventions changed results and/or conclusions.MethodsA systematic review was launched using Medline and the Cost-Effectiveness Analysis Registry of Tufts University (2000–2019). Included studies should: (1) be an original study published in a scientific journal, (2) be an economic evaluation of any multiple sclerosis-related intervention, (3) include productivity losses and/or informal care costs (social costs), (4) be written in English, (5) use quality-adjusted life years as outcome, and (6) separate the results according to the perspective applied.ResultsTwenty-nine articles were selected, resulting in 67 economic evaluation estimations. Social costs were included in 47% of the studies. Productivity losses were assessed in 90% of the estimations (the human capital approach was the most frequently used method), whereas informal care costs were included in nearly two-thirds of the estimations (applying the opportunity and the replacement-cost methods equally). The inclusion of social costs modified the figures for incremental costs in 15 estimations, leading to a change in the conclusions in 10 estimations, 6 of them changing from not recommended from the healthcare perspective to implemented from the societal perspective. The inclusion of social costs also altered the results from cost-effective to dominant in five additional estimations.ConclusionsThe inclusion of social costs affected the results/conclusions in multiple sclerosis-related interventions, helping to identify the most appropriate interventions for reducing its economic burden from a broader perspective.

Psychological Problems among Head and Neck Cancer Patients in Relation to Utilization of Healthcare and Informal Care and Costs in the First Two Years after Diagnosis.

Background: To investigate associations between psychological problems and the use of healthcare and informal care and total costs among head and neck cancer (HNC) patients. Method: Data were used of the NETherlands QUality of Life and Biomedical Cohort study. Anxiety and depression disorder (diagnostic interview), distress, symptoms of anxiety and depression (HADS), and fear of cancer recurrence (FCR) and cancer worry scale (CWS) were measured at baseline and at 12-month follow-up. Care use and costs (questionnaire) were measured at baseline, 3-, 6-, 12-, and 24-month follow-up. Associations between psychological problems and care use/costs were investigated using logistic and multiple regression analyses. Results: Data of 558 patients were used. Distress, symptoms of anxiety or depression, FCR, and/or anxiety disorder at baseline were significantly associated with higher use of primary care, supportive care, and/or informal care (odds ratios (ORs) between 1.55 and 4.76). Symptoms of anxiety, FCR, and/or depression disorder at 12-month follow-up were significantly associated with use of primary care, supportive care, and/or informal care (ORs between 1.74 and 6.42). Distress, symptoms of anxiety, and FCR at baseline were associated with higher total costs. Discussion: HNC patients with psychological problems make more use of healthcare and informal care and have higher costs. This is not the result of worse clinical outcomes.

Health utilities and costs for neuromyelitis optica spectrum disorder

BackgroundNeuromyelitis optica spectrum disorder (NMOSD) is a rare, neurological disease that places a significant burden on patients, their carers, and healthcare systems.ObjectivesTo estimate patient and carer health utilities and costs of NMOSD within the UK setting.MethodsPatients with NMOSD and their carers, recruited via a regional specialist treatment centre, completed a postal questionnaire that included a resource use measure, the EuroQoL (EQ)-5D-5L, EQ-5D-VAS, Vision and Quality of Life Index (VisQoL), Carer Experience Survey (CES) and the Expanded Disability Status Scale (EDSS). The questionnaire asked about respondents’ use of health and community care services, non-medical costs, informal care and work capacity. Data were analysed descriptively. Uncertainties in costs and utilities were assessed using bootstrap analysis.Results117 patients and 74 informal carers responded to the survey. Patients’ mean EQ-5D-5L and VisQoL health utilities (95% central range) were 0.54 (− 0.29, 1.00) and 0.79 (0.11, 0.99), respectively. EQ-5D-5L utility decreased with increasing EDSS score bandings, from 0.80 (0.75, 0.85) for EDSS ≤ 4.0, to 0.20 (− 0.29, 0.56) for EDSS 8.0 to 9.5. Mean, 3-month total costs were £5623 (£2096, £12,156), but ranged from £562 (£381, £812) to £32,717 (£2888, £98,568) for these EDSS bandings. Carer-reported EQ-5D-5L utility and CES index scores were 0.85 (0.82, 0.89) and 57.67 (52.69, 62.66). Mean, 3-month costs of informal care were £13,150 to £24,560.ConclusionsNMOSD has significant impacts on health utilities and NHS and carer costs. These data can be used as inputs to cost-effectiveness analyses of new medicines for NMOSD.

Quality of life and resource utilization-Swedish data from the Care of Late-Stage Parkinsonism (CLaSP) study.

Few studies have investigated the health-related quality of life (HRQoL), resource use and costs in patients with late-stage Parkinson's disease (PD), and data from the Swedish setting are scarce. First, we analyse the HRQoL in late-stage PD in Sweden. Second, we analyse the resource use and costs per severity level. Third, we analyse the relationship between costs and physician- and patient reported-outcome measures. The study was based on Swedish data from the Care of Late-Stage Parkinsonism (CLaSP) study. The costs of healthcare contacts, drugs, formal and informal care, and productivity loss were collected over three months. Assessments at baseline were used for outcomes (EQ-5D, Hoehn and Yahr (H&Y), Schwab and England Scale, Unified Parkinson's Disease Rating Scale subscales (UPDRS) and Non-Motor Symptoms Scale (NMSS)). Costs were estimated in € 2016. In total, 106 patients were included. The mean EQ-5D score in the total group was 0.24 (±0.33). The mean total cost excluding informal care per patient in the three-month period was approximately €14,097 (BCa 95% CI €12,007 and €16,039). Professional care accounted for the largest share (75 percent) of the total costs. The EQ-5D, H&Y, Schwab and England Scale, and NMSS were statistically significant predicting factors for total costs. Patients with late-stage PD are a vulnerable patient group that is costly to society and the impairment in patients' HRQoL is immense. Thus, healthcare decision-makers should optimize the organization and provision of healthcare for these patients.

Cost of Diagnosing and Treating Cognitive Complaints: One-year Cost-evaluation Study in a Patient Cohort from a Slovenian Memory Clinic.

IntroductionDementias present a global health challenge and give rise to significant economic costs. This study aims to evaluate the economic impact of one-year outpatient healthcare, nursing home, and formal and informal home help costs for all patients referred to the Centre for Cognitive Impairments at the Department of Neurology, Ljubljana University Medical Centre, Slovenia.MethodsData was acquired retrospectively from physicians’ records and the costs for 2015 were calculated. Total costs were estimated by means of a bottom-up calculation of outpatient visits, diagnostic examinations and anti-dementia medication. In a subgroup of 120 patients with dementia, the Resource Utilization in Dementia questionnaire was used to estimate formal and informal care costs.ResultsA total of 720 patients visited the memory clinic in 2015. Diagnosis at first visit was subjective cognitive or mild cognitive impairment (SCI/ MCI) for 322 patients, dementia for 258 patients, and psychiatric or other disorders for 140 patients. The average annual cost per patient was EUR 578. It was highest for patients with dementia (EUR 751), EUR 550 for patients with SCI/MCI, and lowest for patients with psychiatric and other disorders (EUR 324). Monthly informal and social care costs were between EUR 1,037 and EUR 3,369, depending on the methodology used.ConclusionThe cost of diagnosing a cognitive disorder depends on how extensive the diagnosis is. With an estimated prevalence of 34,137 persons with dementia in Slovenia, basic diagnostic investigations incur costs of approximately EUR 7 million. Direct medical costs represent a smaller portion of total dementia costs; this is because annual costs for formal and informal home help are estimated at EUR 265 million and nursing home placements at EUR 105 million.

Understanding the Economic Value and Impacts on Informal Carers of People Living with Mental Health Conditions.

Informal carers play a vital role in supporting people living with mental health conditions, but comparatively little is known about the economic value of caring. This study undertook an online survey of adult informal carers supporting adults with mental health conditions to better understand the impacts of caring on carer quality of life, levels of loneliness, finances and employment, as well as estimate the economic value of time spent caring. In total, 712 carers participated in the multi-national survey between August 2019 and April 2020. A total of 17% were male, with a mean age of 53, and 68% supported a child living with a mental health condition. A total of 56% of care recipients were male, with a mean age of 37. Adverse impacts on quality of life, loneliness and personal finances were greatest in carers living with care recipients. Overall mean weekly hours of care were 43.42, rising to 65.41 for carers living with care recipients. Mean weekly costs of care per carer ranged from €660 to €2223 depending on living arrangements. Annual costs ranged between €34,960 and €125,412, depending on living arrangements and valuation method. Informal care costs are substantial, and policy makers should consider investing more in carer support, especially for carers living with care recipients.