Caregiver Costs Research Articles

New questionnaire estimates caregiver and informal care costs

New questionnaire estimates caregiver and informal care costs

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers.

With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. Athree-round, online Delphi survey took place. Inround 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. In round 1,eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. By establishing a confluence of perspectives around research priorities, this study ensuresthe interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.

Estimating the monetary benefits of medicare eligibility for reducing the symptoms of dementia

ABSTRACTWe adopt a three-component method based on the idea of cost-saving for estimating the monetary benefits of Medicare eligibility for reducing dementia symptoms. The method involves Medicare eligibility lowering dementia symptoms, which reduces the need for dependent living, which in turn lowers caregiving costs. We use the Regression Discontinuity approach to establish a causal link between Medicare eligibility and dementia. The novel aspect of the study comes from using a quality-of-life proxy measure for the utility function to derive the marginal rate of substitution between dementia symptoms reduction and dependent living arrangements.

The young carer penalty: Exploring the costs of caregiving among a sample of Canadian youth

This research contributes a first-hand account of the experiences of youth’s substantial unpaid familial caregiving in the context of long-term illness, disability or problems related to alcohol and/or other drugs. A qualitative focus group methodology explored the benefits and challenges of youth’s caregiving via a sample of 15 youth caregivers (or young carers) from both the Greater Toronto area and the Niagara Region of Southern Ontario. The findings reveal evidence for a unique “young carer penalty,” a term coined by this research to build upon the gendered “care penalty” experienced by adult women (especially mothers) when performing care work.

COMMUNITY-BASED DEMENTIA CARE: INTEGRATING THE NEEDS OF PATIENT AND CAREGIVER

Absent a cure or effective disease modifying treatment for dementia, developing cost-effective models of care that address the needs of caregivers alongside the medical management of the disease is necessary to maximize quality of care, address safety issues, and enhance the patient/caregiver experience. There is minimal data regarding whether incorporating dementia caregivers into the clinical model can impact caregiver satisfaction and cost of care. MemoryCare, a community-based non-profit organization, has 17 years of experience delivering an outpatient medical and care management model for persons living with Alzheimer's disease and other types of dementia (PLWD). The program serves a predominantly rural region in Western North Carolina. Caregivers participate in care planning and are provided with dementia education, training in behavioral management, resource matching, and support at each clinical encounter for their PLWD. Designed to supplement primary care services, the average annual cost per patient/caregiver dyad is $1450. This cost includes both clinical visits for the PLWD and tailored support for the caregiver(s). In 2017, 1034 patients and 3483 caregivers were served by the program. Over the past 3 years, observational data on hospitalization rates, ED utilization, 30 day readmission rates, and caregiver satisfaction have been collected annually for PLWD enrolled in the program for a minimum of one year who live in a defined region where health care utilization statistics can be confirmed independently of patient or caregiver report. Caregiver satisfaction surveys reveal high levels of overall satisfaction, increased dementia-specific knowledge, improved perceived ability to manage challenging behavioral aspects of dementia and perceived greater ability to maintain the PLWD in the home setting. Observational data reveals lower hospitalization rates, ED utilization and rehospitalization rates compared with published national benchmarks. These findings warrant further study of the impact of broader integration of caregivers into clinical care models for persons living with dementia.

Estimating the Incidence of Cases and Deaths Resulting from Hand, Foot and Mouth Disease and Its Related Socioeconomic Disease Burden in Republic of Korea (2010 - 2014).

ObjectivesHand, Foot and Mouth disease (HFMD) is a highly contagious viral disease that affects young children and frequently causes epidemics. A vaccine is available in China (enterovirus 71) and, the Republic of Korea took the first step to develop a new vaccine. New vaccine development requires that disease burden is calculated in advance so the financial cost, morbidity and mortality can be measured.MethodsData from National Sentinel Surveillance and health insurance systems of 1 million claimants were used. Direct medical and non-medical costs, indirect (caregiving and premature death) costs, cases and related deaths were summarized.ResultsFrom 2010 to 2014, there were an estimated 3,605 to 9,271 cases of HFMD, with 1 to 3 deaths. The estimated socioeconomic disease burden ranged from 80.5 to 164.2 million USD and was similar to that of hepatitis A (93.6–103.8 million USD). Among each costs, costs of caregiving consisted of highest proportion mainly due to hiring caregivers (50% – 60%) or opportunity costs from day off (62% – 69%).ConclusionConsidering the social impact of HFMD, the estimated socioeconomic disease burden is not high and government policies need to focus on reducing the loss of work in caregivers.

Parental work limitations at diagnosis of advanced stage pediatric Hodgkin lymphoma—Results of caregiver work limitations questionnaire (CG WLQ).

e18927Background: Cancer cost estimates rarely include the cost of family caregiving. Beyond the physical and emotional demands of caregiving, parents’ other roles and responsibilities can be disru...

PCN107 - Cost-Effectiveness Analysis of Regorafenib in Patients with Advanced Hepatocellular Carcinoma

Although the efficacy and safety of Regorafenib as a second-line treatment for advanced hepatocellular carcinoma (HCC) patients were confirmed in RESOURCE, a randomized and placebo-controlled phase 3 trial, its societal value has not been assessed properly. This study aimed to evaluate the cost-effectiveness of Regorafenib for advanced HCC patients following Sorafenib treatment compared with best supportive care (BSC) in the third-party payer’s and the U.S. societal perspectives. A Markov model with a five-year horizon and one month cycle was simulated using the clinical data of RESOURCE. Possible health transitions reflected three states (Stable disease, Progressive disease, and Death). The third-party payer’s perspective analysis was conducted based on costs of managing patients and out-of-pocket costs. In the societal perspective analysis, time costs of informal caregivers and non-time costs were considered additionally. All costs were measured in 2017 USD. QALYs were calculated based on EQ-5D. A 3% time discount rate was used in the societal perspective analysis and 7% in the third-party payer’s analysis. Incremental QALYs for Regorafenib compared to BSC was 0.12 (0.51 vs 0.39). Total costs was $33,434 higher in Regorafenib from the societal perspective ($65,901 vs $ 32,467). Thus, ICERs was $ 277,463/QALY, which exceeds a U.S. societal willingness-to-pay (WTP) of $150,000. One-way sensitivity analysis ($206,740/QALY ~ $509,485/QALY) demonstrated that ICER was sensitive to the overall survival of Regorafenib and BSC and daily dose of Regorafenib. According to probabilistic sensitivity analysis, the likelihood of Regorafenib being cost-effective was shown to be 4.7% and would not reach 50% otherwise WTP increased up to $270,000. Regorafenib is not a cost-effective alternative to BSC for patients with advanced HCC from the U.S. societal perspective. The sensitivity analyses indicate that this result is robust.

PND24 - Indirect Costs of Parkinson Disease Health Care in the National Institute of Neurology and Neurosurgery in the Mexico City

To evaluate the annual indirect costs of Parkinson disease health care in the National Institute of Neurology and Neurosurgery in the Mexico City. Clinical information and health care cost related over one year were obtained from cross sectional survey applied to patients included in a retrospective cohort of elderly Parkinson patients, the questionnaire considering indirect costs (transport, caregiver, special equipment and home adaptation and/or special equipment acquisition). Clinical and direct costs were reported previously, this is a descriptive cost analysis to estimating the average, standard deviation and a log linear regression model was done, p value >0.05 was consider statistically significant. The cost was expressed in USD (1USD =$18.8113 Mx, www. banxico.orgJan 2018). Total of 156 patients (59% males), mean age 63±12 years (range 28-85 years), stages (ST) distribution was as following ST I: 9, STII: 89, STIII: 51, STIV:5 and STV: 9., 44% of them had caregiver, at least the half for stages II-V had ones. The total cost for caregivers was 533 734.53 USD. The average indirect medical cost total was 3 502. 60 ± 1211.26 USD per patient/year. According with log linear regression model the caregiver and transport cost predicted the total indirect medical costs (p <0.000). The indirect costs of Mexican patients with parkinson was high and is related if they have a caregiver and transport costs.

Productivity loss of caregivers of schizophrenia patients: a cross-sectional survey in Japan

Background: When a family member is diagnosed with schizophrenia, it causes stress to the caregiver that can eventually result in missed work days and lower work performance.Aim: This study aims at revealing productivity costs for caregivers of schizophrenia patients in Japan.Method: A cross-sectional survey of caregivers was conducted and resulted in 171 respondents. The assessment of work productivity included calculating the costs of absenteeism, presenteeism and total productivity costs. This was accomplished using the “Work Productivity and Activity Impairment Questionnaire” (WPAI).Results: A relative majority of caregivers in the sample provided care for their spouse (47%), 18% cared for their brother or sister and 16% provided care for their child. Per capita productivity costs totaled JPY 2.42 million, with JPY 2.36 million (97%) of that amount being due to presenteeism.Conclusions: The burden on caregivers is substantial enough to warrant structured support programs aimed at maintaining careers’ physical and mental health, helping them provide more effective care to schizophrenia patients and eventually increase productivity at work.

An exploratory case study of the impact of expanding cost-effectiveness analysis for second-line nivolumab for patients with squamous non-small cell lung cancer in Canada: Does it make a difference?

IntroductionHealth technology appraisal agencies often rely on cost-effectiveness analyses to inform coverage decisions for new treatments. These assessments, however, frequently measure a treatment’s value from the payer’s perspective, and may not capture value generated from reduced caregiving costs, increased productivity, value based on patient risk preferences, option value or the insurance value to non-patients. MethodsTo examine how using a broader societal perspective of treatment value affects cost-effectiveness estimates, this case study analyzed the net monetary benefit (NMB) of second-line nivolumab treatment of patients with squamous non-small cell lung cancer (NSCLC) in Canada. The comparator was treatment with docetaxel. NMB was measured from three perspectives: (i) traditional payer, (ii) traditional societal and (iii) broad societal. ResultsNivolumab was more effective (increased quality-adjusted life years by 0.66 versus docetaxel), but also increased costs by $100,168 CAD. When valuing a quality-adjusted life year at $150,000, the net monetary benefit from the payer perspective suggested that costs modestly exceed benefits (NMB: −$1031). Adopting a societal perspective, however, nivolumab’s benefits outweighed its costs (NMB: +$6752 and +$91,084 from the traditional and broad societal perspectives, respectively). ConclusionBroadening cost-effectiveness analysis beyond the traditional payer perspective had a significant impact on the result and should be considered in order to capture all treatment benefits and costs of societal relevance.

The economic burden of occupational non-melanoma skin cancer due to solar radiation

ABSTRACTSolar ultraviolet (UV) radiation is the second most prevalent carcinogenic exposure in Canada and is similarly important in other countries with large Caucasian populations. The objective of this article was to estimate the economic burden associated with newly diagnosed non-melanoma skin cancers (NMSCs) attributable to occupational solar radiation exposure. Key cost categories considered were direct costs (healthcare costs, out-of-pocket costs (OOPCs), and informal caregiver costs); indirect costs (productivity/output costs and home production costs); and intangible costs (monetary value of the loss of health-related quality of life (HRQoL)). To generate the burden estimates, we used secondary data from multiple sources applied to computational methods developed from an extensive review of the literature. An estimated 2,846 (5.3%) of the 53,696 newly diagnosed cases of basal cell carcinoma (BCC) and 1,710 (9.2%) of the 18,549 newly diagnosed cases of squamous cell carcinoma (SCC) in 2011 in Canada were attributable to occupational solar radiation exposure. The combined total for direct and indirect costs of occupational NMSC cases is $28.9 million ($15.9 million for BCC and $13.0 million for SCC), and for intangible costs is $5.7 million ($0.6 million for BCC and $5.1 million for SCC). On a per-case basis, the total costs are $5,670 for BCC and $10,555 for SCC. The higher per-case cost for SCC is largely a result of a lower survival rate, and hence higher indirect and intangible costs. Our estimates can be used to raise awareness of occupational solar UV exposure as an important causal factor in NMSCs and can highlight the importance of occupational BCC and SCC among other occupational cancers.

Projected Costs of Informal Caregiving for Cardiovascular Disease: 2015 to 2035: A Policy Statement From the American Heart Association

In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers' wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.

Caregiver costs for US patients with CVD predicted to double

Caregiver costs for US patients with CVD predicted to double

Assessing care-giving demands, resources and costs of family/friend caregivers for persons with mental health disorders: A scoping review.

As mental health (MH) care has shifted from institutional settings to the community, families and friends are responsible for providing the majority of the care at home. The substantial literature on the adverse effects experienced by caregivers has focused mainly on psychological morbidity. Less attention has been paid to how caregivers for persons with MH disorders interact with larger social systems and the impacts of factors such as financial strain, lost time from leisure activities, and the availability of health and social services. We conducted a scoping review of MH and other caregiver questionnaires published between 1990 and 2016 to determine whether they addressed four key domains: caregiver work demands, resource needs, resource utilisation and costs. A range of health and social care databases were searched, including MEDLINE and Health and Psychosocial Instruments. After screening for relevance and quality, our search identified 14 instruments addressing elements related to one or more of our domains. Because these instruments covered only a small portion of our domains, we conducted a second targeted search of the general care-giving literature and consulted with experts, identifying an additional 18 instruments. A total of 32 questionnaires were reviewed, 14 specific to care-giving for mental health problems and 18 for other health conditions. Our search identified instruments or items within instruments that assess constructs in each of our domains, but no one instrument covered them completely. Additionally, some constructs were evaluated in detail and others only addressed by single items. While these instruments are helpful for moving measurement beyond the psychological impacts of care-giving, our results serve only as an initial guide. Additional methodological work is needed to more comprehensively measure the impact of care-giving for individuals with MH disorders and to contribute to the development of more meaningful and effective policies and programmes.

Healthcare utilisation and costs of home mechanical ventilation

BackgroundIndividuals using home mechanical ventilation (HMV) frequently choose to live at home for quality of life, despite financial burden. Previous studies of healthcare utilisation and costs do not consider public...

The value of a year’s general education for reducing the symptoms of dementia

ABSTRACT We present a method for estimating the benefits of years of education for reducing dementia symptoms based on the cost savings that would accrue from continuing independent living rather than relying on formal or informal carers. Our method for estimating the benefits of education involves three steps: first taking a year of education and seeing how much this lowers dementia, second using this dementia reduction and estimating how much independent living is affected and third applying the change in caregiving costs associated with the independent living change. We apply our method for estimating education benefits to a National Alzheimer’s Coordinating Center sample of 17,239 participants at 32 US Alzheimer’s disease centres over the period September 2005 and May 2015.

Estimating the Monetary Benefits of Medicare Eligibility for Reducing the Symptoms of Dementia

We adopt a three component method based on the idea of cost-saving for estimating the monetary benefits of Medicare eligibility for reducing dementia symptoms. The method involves Medicare eligibility lowering dementia symptoms, which reduces the need for dependent living, which in turn lowers caregiving costs. We use the Regression Discontinuity approach first utilized by Card et al. (2008, 2009) to establish a causal link between Medicare eligibility and dementia. The novel aspect of the study comes from using a quality of life proxy measure for the utility function to derive the marginal rate of substitution between dementia symptoms reduction and dependent living arrangements.

Factors Influencing Burnout in Primary Family Caregivers of Hospital-based Home Care Patients

Purpose: The purpose of this study is to identify factors influencing burnout in primary family caregivers of Home Health Care Patients. Methods: Data were collected from 121 primary family caregivers of home health care patients in three different hospitals in ‘D’ metropolitan city and the study was conducted from August 10, 2016 to January 17, 2017. The data were analyzed using descriptive statistics, t-test, ANOVA, Pearson’s Correlation Coefficient, Stepwise Multiple Linear Regression. Results: Mean scores for the nursing needs of the participants were 3.54±0.79, the family functions were 1.24±0.58, the burnouts were 2.74±0.49. The burnouts were positively correlated with the nursing needs but inversely correlated with the family function. The factor that had the greatest influence on the burnouts of primary family caregivers of Home Health Care was family function (β=-.245, p=.001), followed by patients'' daily activity (β=-.213, p=.014), age (β=.208, p=.032), monthly nursing services cost (β=-.196, p=.044) and nursing needs (β=.129, p=.014). The Explanatory Power of Models was 23%. Conclusion: Individually customized home care nursing intervention programs are required to be provided in accordance with patient''s family function and daily activity, monthly home care nursing service cost, nursing needs and general characteristics of primary caregivers of Home Health Care Patients such as their age, the number of family members living together, sex and the name of disease.

Estimating Long-Term Care Costs among Thai Elderly: A Phichit Province Case Study.

Background Rural-urban inequality in long-term care (LTC) services has been increasing alongside rapid socioeconomic development. This study estimates the average spending on LTC services and identifies the factors that influence the use and cost of LTC for the elderly living in urban and rural areas of Thailand. Methods The sample comprised 837 elderly aged 60 years drawn from rural and urban areas in Phichit Province. Costs were assessed over a 1-month period. Direct costs of caregiving and indirect costs (opportunity cost method) were analyzed. Binary logistic regression was performed to determine which factors affected LTC costs. Results The total annual LTC spending for rural and urban residents was on average USD 7,285 and USD 7,280.6, respectively. Formal care and informal care comprise the largest share of payments. There was a significant association between rural residents and costs for informal care, day/night care, and home renovation. Conclusions Even though total LTC expenditures do not seem to vary significantly across rural and urban areas, the fundamental differences between areas need to be recognized. Reorganizing country delivery systems and finding a balance between formal and informal care are alternative solutions.