Informal Care Costs Research Articles

Total cost of care increases significantly from early to mild Alzheimer's disease: 5-year ALSOVA follow-up.

IntroductionWe studied the costs of formal and informal care in relation to Alzheimer’s disease (AD) progression.Methods231 persons with AD with a family caregiver were followed up for 5 years. The Clinical Dementia Rating Scale—Sum of Boxes (CDR-SB) was used to measure AD progression. Health and social care unit costs were used for formal care costs. An opportunity cost method for lost leisure time was applied to analyse the cost of informal care.ResultsTotal cost of care in early stage AD (CDR-SB ≤ 4) was 16,448€ (95% CI 13,722–19,716) annually. In mild (CDR-SB 4.5–9), moderate (CDR-SB 9.5–15.5) and severe (CDR-SB ≥ 16) AD, the total costs were 2.3, 3.4 and 4.4 times higher, respectively. A one-unit increase in CDR-SB increased the total, formal and informal costs by 15, 11 and 18%, respectively.ConclusionsCompared to early AD, the costs of total, formal and informal care are remarkably higher already in mild AD. This finding emphasises early diagnosis, interventions and family support for persons with AD and their caregivers.

Psychological problems among cancer patients in relation to healthcare and societal costs: A systematic review

ObjectiveThis study systematically reviewed the association of psychological problems among cancer patients with healthcare and societal resource use and costs.MethodsPubMed, PsycINFO, and Embase were searched (until 31 January 2021) for studies on psychological symptoms (anxiety, depression, distress, fear of recurrence) or psychiatric disorders (anxiety, depression, adjustment) and healthcare use (e.g., mental, inpatient healthcare), economic losses by patients and family, economic losses in other sectors (e.g., absence from work), and costs. The search, data extraction, and quality assessment were performed by two authors.ResultsOf the 4157 identified records, 49 articles were included (psychological symptoms (n = 34), psychiatric disorders (n = 14), both (n = 1)) which focused on healthcare use (n = 36), economic losses by patients and family (n = 5), economic losses in other sectors (n = 8) and/or costs (n = 13). In total, for 12 of the 94 associations strong evidence was found. Psychological symptoms and psychiatric disorders were positively associated with increased healthcare use (mental, primary, inpatient, outpatient healthcare), losses in other sectors (absence from work), and costs (inpatient, outpatient, total healthcare costs). Moderate evidence was found for a positive association between (any) psychiatric disorder and depression disorder with inpatient healthcare and medication use, respectively.ConclusionsPsychological problems in cancer patients are associated with increased healthcare use, healthcare costs and economic losses. Further research is needed on psychological problems in relation to understudied healthcare use or costs categories, productivity losses, and informal care costs.

Direct and indirect costs and cost-driving factors in adults with tuberous sclerosis complex: a multicenter cohort study and a review of the literature

BackgroundTuberous sclerosis complex (TSC) is a monogenetic, multisystem disorder characterized by benign growths due to TSC1 or TSC2 mutations. This German multicenter study estimated the costs and related cost drivers associated with organ manifestations in adults with TSC.MethodsA validated, three-month, retrospective questionnaire assessed the sociodemographic and clinical characteristics, organ manifestations, direct, indirect, out-of-pocket (OOP), and nursing care-level costs among adult individuals with TSC throughout Germany from a societal perspective (costing year: 2019).ResultsWe enrolled 192 adults with TSC (mean age: 33.4 ± 12.7 years; range: 18–78 years, 51.6% [n = 99] women). Reported TSC disease manifestations included skin (94.8%) and kidney and urinary tract (74%) disorders, epilepsy (72.9%), structural brain defects (67.2%), psychiatric disorders (50.5%), heart and circulatory system disorders (50.5%), and lymphangioleiomyomatosis (11.5%). TSC1 and TSC2 mutations were reported in 16.7% and 25% of respondents, respectively. Mean direct health care costs totaled EUR 6452 (median EUR 1920; 95% confidence interval [CI] EUR 5533–7422) per patient over three months. Medication costs represented the major direct cost category (77% of total direct costs; mean EUR 4953), and mechanistic target of rapamycin (mTOR) inhibitors represented the largest share (68%, EUR 4358). Mean antiseizure drug (ASD) costs were only EUR 415 (6%). Inpatient costs (8%, EUR 518) and outpatient treatment costs (7%; EUR 467) were important further direct cost components. The mean care grade allowance as an approximator of informal nursing care costs was EUR 929 (median EUR 0; 95% CI EUR 780–1083) over three months. Mean indirect costs totaled EUR 3174 (median EUR 0; 95% CI EUR 2503–3840) among working-age individuals (< 67 years in Germany). Multiple regression analyses revealed mTOR inhibitor use and persistent seizures as independent cost-driving factors for total direct costs. Older age and disability were independent cost-driving factors for total indirect costs, whereas epilepsy, psychiatric disease, and disability were independent cost-driving factors for nursing care costs.ConclusionsThis three-month study revealed substantial direct healthcare, indirect healthcare, and medication costs associated with TSC in Germany. This study highlights the spectrum of organ manifestations and their associated treatment needs in the German healthcare setting. Trial registration: DRKS, DRKS00016045. Registered 01 March 2019, http://www.drks.de/DRKS00016045.

PND38 IMPACT of Remoteness on Cost of Illness of Australians with Multiple Sclerosis

Inequity in the availability and quality of health care services could exist between urban areas and regional/remote communities, which may have consequences for disease management costs. We aim to examine whether the cost of illness differs between people with multiple sclerosis (MS) living in regional or remote areas and those living in major cities, and what factors may explain these differences. Participants in this study come from the Economic Impact Survey (EIS) 2016 of the Australian MS Longitudinal Study (AMSLS), consisting of a baseline survey (3,163 active participants invited, 1,577 [49.9%] responded), and a cost diary (3,163 active participants invited, 488 [15.5%] responded). Remoteness was measured using the Australian Statistical Geography Standard Remoteness Structure, and classified as major cities, inner regional areas, outer regional areas, and remote/very remote areas. The overall, direct, and indirect (crude and age, sex and disease duration adjusted) costs of MS and the breakdown of these costs by key cost categories and Australian remoteness areas were calculated. Living in inner regional areas was associated with a 1.23-fold higher mean total costs compared to those living in major cities. After adjusting for age, sex and duration of MS, the mean total costs were 1.26-fold higher. The higher total costs for those living in inner regional areas seem to be driven by higher direct costs, informal care costs and indirect costs. There were no significant differences between major cities and other remoteness areas even after the multivariable adjustments. Living in more remote areas was not associated with substantially higher disease management costs among Australians with MS. Whilst costs differ between those living in inner regional areas and major cities, the differences were not large. Overall, this suggests that there are not large inequities in costs as a result of remoteness in Australians with MS.

Costs and resource use of community-dwelling patients with Alzheimer’s disease in Japan: 18-month results from the GERAS-J study

Objective To determine the longitudinal societal costs and burden of community-dwelling patients with Alzheimer’s disease (AD) and their caregivers in Japan. Methods GERAS-J was an 18-month, prospective, longitudinal, observational study. Using the Mini-Mental State Examination (MMSE), patients routinely visiting memory clinics were stratified into groups based on AD severity at baseline (mild, moderate, and moderately severe/severe [MS/S]). Healthcare resource utilization and caregiver burden were assessed using the Resource Utilization in Dementia and Zarit “Caregiver” Burden Interview questionnaires, respectively. Total monthly societal costs were estimated using Japan-specific unit costs of services and products (patient direct healthcare use, patient social care use, and informal caregiving time). Results Overall, 553 patients (156 mild; 209 moderate; 188 MS/S) were enrolled. MMSE scores declined (1.73, 1.38, and 0.95 points for the mild, moderate, and MS/S AD groups, respectively) and caregiver burden and resource utilization increased over 18 months in each of the AD severity groups. Cumulative total societal costs per patient over 18 months were 3.1, 3.8, and 5.3 million Japanese yen (29,006, 35,662, and 49,725 USD) for mild, moderate, and MS/S AD, respectively. Both patient social care costs and caregiver informal care costs increased with baseline disease severity, with >50% of total costs due to caregiver informal care in each disease severity subgroup. Conclusions Total treatment costs increased with AD severity over 18 months due to increases in both patient social care costs and caregiver informal care costs. Our data suggest current social care services in Japan are insufficient to alleviate the negative impact of AD on caregiver burden.

Cost-Effectiveness Analysis of Non-Mydriatic Ultrawide- Field Fundus Photography versus Pharmacological Pupil Dilatation in Diabetic Retinopathy Screening Program

Background: Diabetic retinopathy (DR) causes blindness of the population in many countries worldwide. Early detection and treatment of this disease via a DR screening program is the best way to secure the vision. An annual screening program using pharmacological pupil dilatation becomes the standard method. Recently, non-mydriatic ultrawide-field fundus photography (UWF) has been proposed as a choice for DR screening. However, there was no cost-effectiveness study between the standard DR screening and this UWF approach. Objective: To compare the cost-effectiveness between UWF and pharmacological pupil dilatation in terms of hospital and societal perspectives. Materials and Methods: Patients with type 2 diabetes mellitus that visited the ophthalmology clinic at Chulabhorn Hospital for DR screening were randomized using simple randomization method. The patients were interviewed by a trained interviewer for general and economic information. The clinical characteristics of DR and staging were recorded. Direct medical costs, direct non-medical costs, and informal care costs due to DR screening were recorded. Cost analyses were calculated for the hospital and societal perspectives. Results: The present study presented the cost-effectiveness analyses of UWF versus pharmacological pupil dilatation. Cost-effectiveness analysis from the hospital perspective showed the incremental cost-effectiveness ratio (ICER) of UWF to be –13.87. UWF was a cost-effective mean in DR screening in the societal perspective when compared with pharmacologically pupil dilatation with the ICER of 76.46, under the threshold of willingness to pay. Conclusion: The UWF was a cost-effective mean in DR screening. It can reduce screening duration and bypass post-screening blurred vision. The results suggested that UWF could be a viable option for DR screening. Keywords: Diabetic retinopathy, Diabetic retinopathy screening, Non-mydriatic ultrawide-field fundus photography, Cost-effectiveness analysis

To ban or not to ban tanning bed use for minors: A cost-effectiveness analysis from multiple US perspectives for invasive melanoma.

Tanning bed use is common among US adolescents, but is associated with increased melanoma risk. The decision to ban tanning bed use by adolescents should be made in consideration of the potential health benefits and costs. The US population aged 14 to 17 years was modeled by microsimulation, which compared ban versus no ban strategies. Lifetime quality-adjusted life years (QALYs) and costs were estimated from a health care sector perspective and two societal perspectives: with and without the costs of policy enforcement and the economic losses of the indoor-tanning bed industry. Full adherence to the ban prevented 15,102 melanoma cases and 3299 recurrences among 17.1 million minors, saving $61in formal and informal health care costs per minor and providing an increase of 0.0002 QALYs. Despite the intervention costs of the ban and the economic losses to the indoor-tanning industry, banning was still the dominant strategy, with a savings of $12 per minor and $205.4 million among 17.1 million minors. Findings were robust against varying inspection costs and ban compliance, but were sensitive to lower excess risk of melanoma with early exposure to tanning beds. A ban on tanning beds for minors potentially lowers costs and increases cost effectiveness. Even after accounting for the costs of implementing a ban, it may be considered cost effective. Even after accounting for the costs of implementing a ban and economic losses in the indoor-tanning industry, a tanning bed ban for US minors may be considered cost effective. A ban has the potential to reduce the number of melanoma cases while decreasing health care costs. Previous meta-analyses have linked tanning bed use with an increased risk of melanoma, particularly with initial use at a young age. Yet, it remains unclear whether a ban of adolescents would be cost effective. Overall, a ban has the potential to reduce the number of melanoma cases while promoting a decrease in health care costs. Even after accounting for the costs of implementing a ban and the economic losses incurred by the indoor-tanning industry, a ban would be cost effective.

Understanding health-care outcomes of older people with cognitive impairment and/or dementia admitted to hospital: a mixed-methods study

Background Cognitive impairment is common in older people admitted to hospital, but previous research has focused on single conditions. Objective This project sits in phase 0/1 of the Medical Research Council Framework for the Development and Evaluation of Complex Interventions. It aims to develop an understanding of current health-care outcomes. This will be used in the future development of a multidomain intervention for people with confusion (dementia and cognitive impairment) in general hospitals. The research was conducted from January 2015 to June 2018 and used data from people admitted between 2012 and 2013. Design For the review of outcomes, the systematic review identified peer-reviewed quantitative epidemiology measuring prevalence and associations with outcomes. Screening for duplication and relevance was followed by full-text review, quality assessment and a narrative review (141 papers). A survey sought opinion on the key outcomes for people with dementia and/or confusion and their carers in the acute hospital (n = 78). For the analysis of outcomes including cost, the prospective cohort study was in a medical admissions unit in an acute hospital in one Scottish health board covering 10% of the Scottish population. The participants (n = 6724) were older people (aged ≥ 65 years) with or without a cognitive spectrum disorder who were admitted as medical emergencies between January 2012 and December 2013 and who underwent a structured nurse assessment. ‘Cognitive spectrum disorder’ was defined as any combination of delirium, known dementia or an Abbreviated Mental Test score of &lt; 8 out of 10 points. The main outcome measures were living at home 30 days after discharge, mortality within 2 years of admission, length of stay, re-admission within 2 years of admission and cost. Data sources Scottish Morbidity Records 01 was linked to the Older Persons Routine Acute Assessment data set. Results In the systematic review, methodological heterogeneity, especially concerning diagnostic criteria, means that there is significant overlap in conditions of patients presenting to general hospitals with confusion. Patients and their families expect that patients are discharged in the same or a better condition than they were in on admission or, failing that, that they have a satisfactory experience of their admission. Cognitive spectrum disorders were present in more than one-third of patients aged ≥ 65 years, and in over half of those aged ≥ 85 years. Outcomes were worse in those patients with cognitive spectrum disorders than in those without: length of stay 25.0 vs. 11.8 days, 30-day mortality 13.6% vs. 9.0%, 1-year mortality 40.0% vs. 26.0%, 1-year mortality or re-admission 62.4% vs. 51.5%, respectively (all p &lt; 0.01). There was relatively little difference by cognitive spectrum disorder type; for example, the presence of any cognitive spectrum disorder was associated with an increased mortality over the entire period of follow-up, but with different temporal patterns depending on the type of cognitive spectrum disorder. The cost of admission was higher for those with cognitive spectrum disorders, but the average daily cost was lower. Limitations A lack of diagnosis and/or standardisation of diagnosis for dementia and/or delirium was a limitation for the systematic review, the quantitative study and the economic study. The economic study was limited to in-hospital costs as data for social or informal care costs were unavailable. The survey was conducted online, limiting its reach to older carers and those people with cognitive spectrum disorders. Conclusions Cognitive spectrum disorders are common in older inpatients and are associated with considerably worse health-care outcomes, with significant overlap between individual cognitive spectrum disorders. This suggests the need for health-care systems to systematically identify and develop care pathways for older people with cognitive spectrum disorders, and avoid focusing on only condition-specific pathways. Future work Development and evaluation of a multidomain intervention for the management of patients with cognitive spectrum disorders in hospital. Study registration This study is registered as PROSPERO CRD42015024492. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 8. See the NIHR Journals Library website for further project information.

Economic Burden of Alzheimer's Disease Dementia in Japan.

Background:Alzheimer’s disease dementia (ADD) is the leading cause of long-term care in Japan.Objective:This study estimates the annual healthcare and long-term care costs in fiscal year 2018 for adults over 65 years of age with ADD in Japan and the informal care costs and productivity loss for their families.Methods:Healthcare and long-term care costs for ADD were estimated according to the disease severity classified by the clinical dementia rating (CDR) score, using reports from a literature review. For the costs of time spent on caregiving activities, productivity loss for ADD family caregivers aged 20–69 and informal care costs for all ADD family caregivers were estimated.Results:The total healthcare cost of ADD was JPY 1,073 billion, of which 86% (JPY 923 billion) was attributed to healthcare costs other than ADD drug costs (JPY 151 billion). The healthcare costs other than ADD drug costs by severity were less than JPY 200 billion for CDR 0.5, CDR 1, and CDR 2, respectively, but increased to JPY 447 billion (48%) for CDR 3. The public long-term care costs were estimated to be JPY 4,783 billion, which increased according to the severity. Total productivity loss for ADD family caregivers aged 20–69 was JPY 1,547 billion and the informal care cost for all ADD family caregivers was JPY 6,772 billion.Conclusion:ADD costs have a significant impact on public-funded healthcare, long-term care systems, and families in Japan. To minimize the economic burden of ADD, prolonging healthy life expectancy is the key factor to address.

Resource Utilization of Patients with Parkinson's Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study.

ObjectiveThe Care of Late-Stage Parkinsonism (CLaSP) study aimed to collect qualitative and standardized patient data in six European countries (France, Germany, Netherlands, Portugal, UK, Sweden) to enable a detailed evaluation of the underexplored late stages of the disease (Hoehn and Yahr stage > 3) using clinical, neuropsychological, behavioral, and health economic data. The aim of this substudy was to provide a health economic evaluation for the German healthcare system.MethodsIn Germany, 228 patients were included in the study. Costs were calculated from a societal perspective for a 3-month period. Univariate analyses were performed to identify cost-driving predictors. Total and direct costs were analyzed using a generalized linear model with a γ-distributed dependent variable and log link function. Indirect costs were analyzed using a binomial generalized linear model with probit link function.ResultsThe mean costs for the 3-month period were approximately €20,000. Informal care costs and hospitalization are approximately €11,000 and €5000. Direct costs amounted to 89% of the total costs, and the share of indirect costs was 11%. Independent predictors of total costs were the duration of the disease and age. The duration of the disease was the main independent predictor of direct costs, whereas age was an independent predictor of indirect costs.DiscussionCosts in the late stage of the disease are considerably higher than those found in earlier stages. Compared to the latter, the mean number of days in hospital and the need for care is increasing. Informal caregivers provide most of the care.Clinical Trial RegistrationThe protocol was registered at ClinicalTrials.gov as NCT02333175 on 7 January, 2015.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40273-021-01011-y.

Diseases Costs and Impact of the Caring Role on Informal Carers of Children with Neuromuscular Disease.

This study aims to evaluate the costs of informal care for children with neuromuscular disease and evaluate how physical and psychological health is associated with socio-demographic variables. A cross sectional design was used with a convenience sample of 110 carers that participated in this study. Participants were recruited from Spanish hospitals and rare diseases organizations. Economic costs and sociodemographic aspects were assessed using the economic costs questionnaire and the sociodemographic questionnaire. Physical and psychological health was evaluated using the CarerQol-7D, PHQ-15, Barthel Index, Zarit Overload Scale and Satisfaction with Life Scale. Carers of children with neuromuscular disease spent a large percentage of their annual income in physical therapy, psychological care and speech therapy. Informal costs differed according to the degree of dependency of the child. These were higher in those caregivers whose child under their care presented low functional independence. The loss of work productivity was related to marital status, use of professional services and the child’s dependency. Finally, carers who were female, single or separated and without a job showed worse physical and psychological health. The results highlighted that carers have to face a number of high costs because of the non-existence of social protection and due to the child’s diagnosis.

Cost-Effectiveness of Mechanical Thrombectomy for Treatment of Nonminor Ischemic Stroke Across Europe.

Mechanical thrombectomy (MT) has been recommended for the treatment of nonminor ischemic stroke by national and international guidelines, but cost-effectiveness evidence has been generated for only a few countries using heterogeneous evaluation methods. We estimate the cost-effectiveness of MT across 32 European countries. A Markov model was developed to estimate the cost-effectiveness of MT compared with standard care over a 5-year time horizon. Patients with ischemic stroke eligible for MT were identified from 2017 country-specific incidence data. A societal perspective was adopted, including health, social, and informal care costs, and productivity losses. Model outcomes were expressed as quality-adjusted life years. Sensitivity analyses were conducted to test the robustness of findings. We identified 267 514 ischemic stroke cases that were eligible for MT treatment across 32 European countries. MT was found to be more effective and cheaper than standard care in two-thirds of the countries (21/32) and cost-effective in all but one country (Bulgaria). Across Europe, the intervention was estimated to produce over 101 327 additional quality-adjusted life years (95% uncertainty interval, 65 180-149 085) and cost savings of $981 million (€868 million, 95% uncertainty interval, -1544 to 2564) and of $1.7 billion (€1.5 billion, 95% uncertainty interval, -1.2 to 3.6) in health and social care and societal costs, respectively. MT is highly likely to be cost-effective compared with standard care across Europe as a whole and in the vast majority of European countries.

Using Big Data to Estimate Dementia Prevalence in New Zealand: Protocol for an Observational Study.

BackgroundDementia describes a cluster of symptoms that includes memory loss; difficulties with thinking, problem solving, or language; and functional impairment. Dementia can be caused by a number of neurodegenerative diseases, such as Alzheimer disease and cerebrovascular disease. Currently in New Zealand, most of the systematically collected and detailed information on dementia is obtained through a suite of International Residential Assessment Instrument (interRAI) assessments, including the home care, contact assessment, and long-term care facility versions. These versions of interRAI are standardized comprehensive geriatric assessments. Patients are referred to have an interRAI assessment by the Needs Assessment and Service Coordination (NASC) services after a series of screening processes. Previous estimates of the prevalence and costs of dementia in New Zealand have been based on international studies with different populations and health and social care systems. This new local knowledge will have implications for estimating the demographic distribution and socioeconomic impact of dementia in New Zealand.ObjectiveThis study investigates the prevalence of dementia, risk factors for dementia, and drivers of the informal cost of dementia among people registered in the NASC database in New Zealand.MethodsThis study aims to analyze secondary data routinely collected by the NASC and interRAI (home care and contact assessment versions) databases between July 1, 2014, and July 1, 2019, in New Zealand. The databases will be linked to produce an integrated data set, which will be used to (1) investigate the sociodemographic and clinical risk factors associated with dementia and other neurological conditions, (2) estimate the prevalence of dementia using weighting methods for complex samples, and (3) identify the cost of informal care per client (in number of hours of care provided by unpaid carers) and the drivers of such costs. We will use design-based survey methods for the estimation of prevalence and generalized estimating equations for regression models and correlated and longitudinal data.ResultsThe results will provide much needed statistics regarding dementia prevalence and risk factors and the cost of informal care for people living with dementia in New Zealand. Potential health inequities for different ethnic groups will be highlighted, which can then be used by decision makers to inform the development of policy and practice.ConclusionsAs of November 2020, there were no dementia prevalence studies or studies on informal care costs of dementia using national data from New Zealand. All existing studies have used data from other populations with substantially different demographic distributions. This study will give insight into the actual prevalence, risk factors, and informal care costs of dementia for the population with support needs in New Zealand. It will provide valuable information to improve health outcomes and better inform policy and planning.International Registered Report Identifier (IRRID)DERR1-10.2196/20225

Exploring costs, cost components, and associated factors among people with dementia approaching the end of life: A systematic review.

IntroductionUnderstanding costs of care for people dying with dementia is essential to guide service development, but information has not been systematically reviewed. We aimed to understand (1) which cost components have been measured in studies reporting the costs of care in people with dementia approaching the end of life, (2) what the costs are and how they change closer to death, and (3) which factors are associated with these costs.MethodsWe searched the electronic databases CINAHL, Medline, Cochrane, Web of Science, EconLit, and Embase and reference lists of included studies. We included any type of study published between 1999 and 2019, in any language, reporting primary data on costs of health care in individuals with dementia approaching the end of life. Two independent reviewers screened all full‐text articles. We used the Evers' Consensus on Health Economic Criteria checklist to appraise the risk of bias of included studies.ResultsWe identified 2843 articles after removing duplicates; 19 studies fulfilled the inclusion criteria, 16 were from the United States. Only two studies measured informal costs including out‐of‐pocket expenses and informal caregiving. The monthly total direct cost of care rose toward death, from $1787 to $2999 USD in the last 12 months, to $4570 to $11921 USD in the last month of life. Female sex, Black ethnicity, higher educational background, more comorbidities, and greater cognitive impairment were associated with higher costs.DiscussionCosts of dementia care rise closer to death. Informal costs of care are high but infrequently included in analyses. Research exploring the costs of care for people with dementia by proximity to death, including informal care costs and from outside the United States, is urgently needed.

Socioeconomic impact of migraine in Italy: Results of a national survey

Background: Literature data indicate that migraine has a stronger impact on both healthcare consumption and quality of life (QoL) in women.&#x0D; Objectives: The objective of this article is to evaluate out-of-pocket (OoP) costs, productivity losses and cost of informal care of migraine in Italy, with a special focus on the detection of potential differences between male and female subjects.&#x0D; Methods: A cross-sectional study was conducted. Data were collected via a web-based survey platform, which included a socioeconomic questionnaire (five sections: clinical history; occupational status; informal assistance; visits, exams and treatments; and loss of productivity) and two questionnaires on QoL (EuroQol 5D 5L and Migraine-Specific Questionnaire, MSQ).&#x0D; Results: Six hundred and seven participants took part in the survey (average age of 42 years; female 70%). The duration of the attack (4-72 hours) was significantly much longer in women than in men (71% vs. 49%; p &lt; 0.001). Seventy per cent of the sample reported to be employed. Lower income was associated with women (p &lt; 0.001). Men received more informal assistance days than women (5.2 vs. 3.9 days; p = 0.007). The quarterly cost including OoP costs, informal assistance and lost productivity averaged €1,088 and was higher for men compared to women (€1,515 vs. €908; p &lt; 0.001). The MSQ reported a significantly worse QoL for women.&#x0D; Conclusion: The results seemed to prove that migraine is a gender disease. Moreover, a potentially unequal access to informal assistance and healthcare resources not covered by the Italian National Health Service is highlighted for women because of their lower average income and purchasing power compared to men.

Cost of Dementia Care in Rural Thai Households

Objective: The purpose of the present paper was to quantify the cost associated with dementia care in rural Thailand. Materials and Methods: A cross-sectional study was done on 140 dementia households with caregivers living in rural areas. The activity of daily living (ADL) and the instrumental activity of daily living (IADL), Resource Utilization in Dementia (RUD, Thai version) were used. The socioeconomic status of people with dementia, their families and their caregivers was collected. The hospital utilization data of people with dementia was obtained from the community and the sub-district health promoting hospitals. In terms of indirect costs, the replacement cost approach was employed. Results: Most of the people with dementia were at low-income levels. The majority of dementia care cost was related to the non-medical care cost. The second highest cost was indirect costs or informal care cost, estimated as productivity loss of unpaid caregivers basing on replacement cost concept. The annual costs associated with dementia were estimated to be 90,644 Thai Baht (US$ 2,629) per person, of which 95% of the costs were associated with non-medical care and included 30% of indirect cost. Lastly, the dependency score was elastic to the total dementia care cost. Conclusion: Informal care by family members, which normally was more common in low income family, was a major part of the time spent on caring for people with dementia, and accounted for 30% of the total cost of care. Policymakers should explore furthering the policy options of subsidizing rural households based on the dependency level. Keywords: Cost of dementia care, Caregiving time, Dementia caregiver, Long-term care, Health services utilization

Patients' productivity losses and informal care costs related to ischemic stroke: a French population-based study.

Large societal costs of stroke should not be ignored. We aimed to estimate patients' productivity losses and informal care costs during the first year after ischemic stroke. A cross-sectional survey was performed within the STROKE69 regional population-based cohort study. At 1year post-stroke, each patient and the corresponding main informal caregiver received questionnaires followed by a telephone interview if necessary. Time losses were valued using the human capital approach and proxy good method for patients with and without a professional activity, respectively. Among the 222 patients with ischemic stroke (58% men; mean age 68years; and 86% with a modified Rankin Scale (mRS) score of <3 at 3months), 54%, 32%, and 25% received informal, formal, and both cares, respectively. Among the 108 main informal caregivers, 63% were women, 74% lived with the patient, and 57% were retired or unemployed. The mean cost of productivity losses was estimated at €7589±€12305 per patient in the first post-stroke year with 5.4%, 71.2%, and 23.4% of these being attributed to presenteeism, absenteeism, and leisure time, respectively. Informal care was given at an average of 25h/week. The annual mean estimated total cost of informal care was €10635 per caregiver. Informal care and productivity losses of patients with ischemic stroke during the first post-stroke year represent a significant economic burden for society comparable to direct costs. These costs should be included in economic evaluations with the adoption of a societal perspective to avoid underestimating the societal stroke economic burden.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3\xa0months of life (IARE I study)

BackgroundAt the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.MethodsMortality follow-back postal survey.Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).Participants: Informal carers (ICrs) of decedents who had received palliative care.Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief.ResultsWe received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden.ConclusionsCosts to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

401 - The Costs of Agitation: A Literature Review

PRESENTING AUTHOR:Mary Michael, Vice President, Patient Advocacy and Stakeholder Management, Otsuka America Pharmaceutical, Inc.OBJECTIVE:To evaluate the extent to which the cost of both treated and untreated agitation in Alzheimer’s disease has been studied in order to inform future research and development of predictive models of the cost of untreated agitation in Alzheimer’s disease.BACKGROUND:There is inadequate understanding of the costs of agitation in Alzheimer’s disease in the scientific and academic literature. Agitation in Alzheimer’s disease contributes to negative social and financial outcomes for people with the condition, their care partners, and health systems. When left untreated, the impact of these outcomes is exacerbated, yet the scale of this impact is unknown. This gap in the literature both reflects and perpetuates the broader under-recognition of agitation as a serious unmet need in the Alzheimer’s community. Conversely, a better understanding of the costs can help elevate agitation within the global Alzheimer’s dialogue.METHODS:We used MEDLINE, PubMed, PsychINFO the Cochrane Library and Google Scholar databases to identify relevant articles published between 2000 until May 2020. We also reviewed reliable literature published outside of these databases. Keywords utilized in the search include agitation in Alzheimer’s, neuropsychiatric symptoms of Alzheimer’s, cost of informal and formal care, Medicare and Medicaid costs, economic costs associated to delirium, among others. Only articles in English were included. Inclusion and exclusion criteria were determined by study design, data source and population studied, number of cases included in analysis, source of health service use or cost data, statistical methods and agitation in Alzheimer’s attributable and/or incremental costs.RESULTS:Results will describe the breadth and depth to which costs of treated and untreated agitation in Alzheimer’s have been examined, indicating data and statistical methodology used.CONCLUSIONS:This literature review serves as the basis for understanding global costs of agitation in Alzheimer’s disease. From our analysis, we recommend that further cost modeling activities be conducted. We also urge the greater community to use these findings to elevate agitation to the top of the Alzheimer’s agenda.

Economic burden of the persistent morbidity of nodding syndrome on caregivers in affected households in Northern Uganda.

Nodding syndrome (NS), is an unexplained form of epilepsy which leads to stunted growth, cognitive decline, and a characteristic nodding of the head. Current data about its impact on households in Uganda is scarce. Therefore, this study aims to assess the economic burden of the persistent morbidity of NS on caregivers in affected households in Northern Uganda. A cross-sectional cost-of-care study was conducted from January 2019 to February 2019 in Lakwela village-Northern Uganda in 14 households, who are members of a community-based organization (CBO) established in the village with the support of a Japanese research team, (Uganda-Japan Nodding Syndrome Network). Data was collected through questionnaires. Both direct (medical and non-medical) and indirect (informal care) costs of caregiving were assessed. Indirect costs were valued using the human-capital method as loss of production. Direct costs constituted a higher proportion of costs for NS households, accounting for on average 7.7% of household expenditure. The annual weighted mean cost per NS patient was estimated at 27.6 USD (26.4 USD direct costs, 96.2% and 1.2 USD indirect cost, 3.8%). Average time spent on informal caregiving was 4.4 ±1.7 (standard deviation) hours/week with an estimated annual informal caregiving cost of 24.85 USD and gross domestic product (GDP) loss of 412.40 USD. Direct costs due to NS are still high among households in this study. More studies are needed to investigate measures that could help bring down these costs and equally reduce the day-to-day disruption of caregiver's activities; consequently, improving the lives of these affected households and communities.