Caregiver Costs Research Articles

The International Spinal Cord Injury Survey in Iran (InSCI-IR)

Background and Aim: Spinal cord injury patients are faced with many neglected side effects that threaten the health, wealth, and life of the patients and their families. For this purpose, the international spinal cord injury survey (InSCI) was conducted in 2017 by adding 22 countries to follow up the patients facing spinal cord injury. Iran as a developing country was added to the survey in 2022 focusing on the catastrophic health expenditures of spinal cord injury patients. The survey is named: The International spinal cord injury survey in Iran (InSCI -IR). Methods and Materials/Patients: This study will be performed in Guilan Province, Iran and the primary data of the patients will be gathered from the Poursina Hospital of Rasht and the Iranian National Registry of Spinal Cord Injury Patients. InSCI-IR contains two parts; the general questionnaire which gathers the data for the InSCI and the specific questionnaire which gathers data for calculating catastrophic expenditures. Results: It is estimated that 600 patients will participate in the study and more than 200 cases are faced with paraplegia or tetraplegia. The international questionnaire contains 11 sections on the living situation of patients with SCI, sociodemographic questions, injury characteristics, mental and physical health, feeling and work conditions, environmental factors, and access to health services. The catastrophic expenditure part contains questions about the cost of treatment, medication, caregiving, transportation, and household income loss related to spinal cord injury, wealth index, and household total income. Both parts will be edited in psychometrics processes.

Prevalence and Predictors of Stress Among Caregivers of Children with Developmental Disorders.

Medical care advances pose challenges with rising caregiving costs and fewer informal caregivers, shifting healthcare responsibilities to families. Healthcare systems adapt to technological changes, stressing person-centered care but lack support for caregivers. Addressing parental stress is crucial, given its impact on both parent and child well-being, highlighting the necessity for customized support. The study aimed to evaluate caregivers' perceived stress and its connection with socio-demographic factors and children's characteristics. Conducted at a Rehabiltation Institute's Psychology Outpatient Department, 200 mothers were enrolled using non-probability consecutive sampling. Ethical clearance was obtained, and demographic data were collected. The mean perceived stress score (PSS-10) was 31.94, indicating a positive correlation between stress and socio-demographic and disability-related variables. Significant differences in stress levels were observed between joint and nuclear family caregivers, p < .01, and those with daughters versus sons with disabilities < 0.001. Pearson's correlation analysis revealed positive correlations between perceived stress and caregiver p = < 0.001 and child age p = < 0.001, number of children p = < 0.001, and time since diagnosis p = < 0.001, with negative correlations with caregiver education p = < .001and income p = < 0.001. Multiple linear regression indicated that caregiver and child age, time since diagnosis, and the number of children positively predicted while income and education of the caregiver negatively predicted perceived stress. No significant association was found between other variables like family volunteers' education, disability type, and caregiver stress. Caregivers exhibited high perceived stress levels, highlighting the reciprocal relationship between child characteristics and parental stress, emphasizing the need for comprehensive family interventions.

Costs of Illness for Huntington's Disease: A Systematic Review.

Huntington's disease (HD) is associated with significant financial burden for patients and payers. The objective was to identify and quantify costs of HD by stage of disease progression. A systematic search of Medline, Embase, Scopus, and Cochrane Library was used to identify types of costs that are frequently reported for individuals diagnosed with HD and to quantify those costs across early, middle, and late stages of HD. Full-text, original research articles were included if they reported costs specific to HD burden. To standardize stage-level costs, Shoulson Fahn and Barthel Index scores were combined to estimate the cost for early, middle-, and late-stage HD. A total of 692 abstracts were identifie,d and following abstract screening, a total of 80 full-text articles were reviewed for inclusion. Only five studies were included for extraction and synthesis including three from the USA, one from the United Kingdom (UK), and one from Peru. Annual inpatient, outpatient, drug costs, and caregiving costs all increased substantially as disease progressed. Outpatient costs were approximately 2.5 times greater than inpatient costs for early and middle stages of HD. Among all the costs associated with HD, annual caregiver cost emerges as the most significant costs in the economic burden of HD, ranging from a minimum of $6041 for early stage to a maximum of $133,200 for late-stage HD. Significant variation was observed across studies, especially comparing costs observed in Peru with the USA and UK. Outpatient costs exceed inpatient costs, especially in early and middle stages, underscoring the importance of outpatient care. All costs seem to rise rapidly, in a nonlinear fashion, as patients advance to later stages. While only two studies reported caregiver burden, these costs were significanly higher in the most severe stage, where patients were completely dependent on a caregiver. This review highlights the complexity of cost assessment in HD and underscores the need for consistent methods and further research to guide effective policy actions.

Reduction in the incidence of cognitive impairment and related costs through an innovative health awareness programme in rural Japan.

This study examined the impact of the Center of Healthy Aging Program (CHAP) on the cognitive function and economic burden associated with dementia. This observational study utilised Iwaki cohort data. We included participants with mini-mental state examination (MMSE) scores and categorised them into pre- and post-CHAP groups based on their year of entry into the cohort (before 2013 or after) (index year). We defined participants with suspected severe cognitive impairment and suspected mild cognitive impairment using their MMSE scores, with their incidence being the first observation meeting these definitions during the follow-up period. We compared the incidence rates between the pre- and post-CHAP groups using Cox proportional hazard analysis. Medical and caregiving costs were estimated based on the projected number of residents in Iwaki area with suspected mild cognitive impairment and sSCI during hypothetical 10 years of the CHAP implemented or not and compared. Of the 2,569 participants, 1716 and 853 were included in the pre- and post-CHAP groups, respectively. The incidence rate of suspected mild cognitive impairment was significantly lower in the post-CHAP group even after adjusted known factors associated with cognitive disorders. No cases of suspected severe cognitive impairment occurred in the post-CHAP group during the follow-up period. Estimated costs of JPY 1,628,450 (USD 11562.00 or EUR 10259.24, JPY 100 = USD 0.71 or EUR 0.63) and JPY 789,560 (USD 5605.88 or EUR 4974.23) per person per year were projected after 10 years with and without the CHAP, respectively. We demonstrated a reduction in the incidence rate of suspected mild cognitive impairment among residents who participated in the CHAP and a decrease in the medical and caregiving costs associated with suspected severe cognitive impairment.

Systematic literature review of the humanistic and economic burden of focal epilepsy and primary generalized tonic-clonic seizures in adults.

This systematic literature review (SLR) assessed the humanistic and economic burden of focal epilepsy and primary generalized tonic-clonic seizures (PGTCS) in adults to evaluate these domains in both populations and identify evidence gaps to inform future research. A search was conducted on December 7, 2022, using MEDLINE and Embase to identify studies published from 2012 onwards reporting humanistic burden (patient-reported or caregiver-reported outcomes or utilities, qualitative evaluations), economic burden (productivity loss, caregiver and societal costs of epilepsy), and sleep-related outcomes. Of the 2830 citations identified, 136 were included. Most studies were in the focal epilepsy population; very few studies reported outcomes in the PGTCS population. The presence of epilepsy-specific instruments varied based on the domain evaluated. Epilepsy exerted considerable humanistic and economic burden. Indicators of poor disease control (e.g., high seizure frequency, resistance to anti-seizure medications, polypharmacy) increased epilepsy burden. Seizure frequency and type, disease severity, and polypharmacy also affected work productivity. Adults with epilepsy, particularly focal epilepsy, reported higher indirect costs, more sick days accrued, and early entry into retirement. Caregivers similarly reported high productivity loss and absenteeism related to caregiving duties. The results of this SLR highlight the high humanistic and economic burden of focal epilepsy and PGTCS, although limited data were available for the PGTCS population. The results include patient-reported outcome data specific to focal epilepsy and PGTCS, expanding the limited humanistic burden evidence identified in previous reviews, and show the effect of poor disease control on individuals' lives and as a driver of indirect costs. PLAIN LANGUAGE SUMMARY: Our systematic literature review identified studies that evaluated the impact of focal epilepsy and primary generalized tonic-clonic seizures on patients and their caregivers. We found that focal epilepsy negatively impacted patients' mental health and sleep and was associated with higher indirect costs and lower work productivity in people with more severe disease. The impact of primary generalized tonic-clonic seizures on patients was rarely reported, and future research is needed.

Economic Burden of Huntington's Disease: Analysis from a Brazilian Tertiary Care Perspective.

Huntington's disease (HD) exerts significant impacts on individuals and families worldwide. Nevertheless, data on its economic burden in Brazil are scarce, revealing a critical gap in understanding the associated healthcare costs. This study was conducted at a tertiary neurology outpatient clinic in Brazil with the aim of assessing annual healthcare service utilization and associated costs for HD patients. We conducted a cross-sectional observational study involving 34 HD patients. A structured questionnaire was applied to collect data on direct medical costs (outpatient services, medications), non-medical direct costs (complementary therapies, mobility aids, home adaptations), and indirect costs (lost productivity, caregiver costs, government benefits) over one year. Significant economic impacts were observed, with average annual direct medical costs of $4686.82 per HD patient. Non-medical direct and indirect costs increased the financial burden, highlighting extensive resource utilization beyond healthcare services. Thirty-three out of 34 HD patients were unemployed or retired, and 16 relied on government benefits, reflecting broader socioeconomic implications. Despite the dataset's limitations, it provides crucial insights into the economic impact of HD on patients and the Brazilian public health system. The findings underscore the urgent need for a more comprehensive evaluation of the costs to inform governmental policies related to HD. Future research is needed to expand the data pool and develop a nuanced understanding of the economic burdens of HD to help formulate effective healthcare strategies for patients.

The hidden costs of informal caregiving: a concept analysis

Background“The hidden costs of informal caregiving” is an interdisciplinary concept. While caregivers make a significant contribution to the process of caregiving, they sacrifice their leisure time, and incur risks of dropping out of the job, impaired mental and physical health, and decreased well-being within the context of caregiving. Those invisible sacrifices are often overlooked and described as hidden costs of informal caregiving. However, the conceptualisation of hidden costs of informal caregiving has not yet been clarified and scientifically assessed. The research aimed to clarify the concept of hidden costs of informal caregiving and develop an operational definition.MethodsWalker and Avant’s concept analysis was conducted. Databases of CBM, CNKI, WanFang, VIP, PubMed, Embase, CINAHL, Web of Science, MEDLINE, Cochrane Library, Econlit, CINAHL and ProQuest were searched with the term “hidden costs of informal caregiving”. Information about the uses of the concept, defining attributes, model cases, antecedents, consequences and empirical referents of hidden costs of informal caregiving was extracted and synthesized.ResultsA total of 25 articles were included. The six defining attributes of hidden costs of informal caregiving were identified as including “undertaken by informal caregivers”, “the time costs of caregiving”, “costs of career development” “physical well-being costs”, “mental well-being costs” and “social relationship costs”. Personal characteristics of the caregivers and care recipients, along with caregiving attributes, were among the antecedents. The consequences of hidden costs of informal caregiving resulted in negative influences which included poor quality of life, life-altering decisions, options for the type of care, some degree of economic hardship, decreased compliance with treatment plans and monetary value informal caregivers are willing to pay to be replaced.ConclusionThis concept analysis decisively illuminated the hitherto nebulous concept and expanded the contents of hidden costs of informal caregiving, which will foster a deeper appreciation of the invisible cost of caregivers. Moreover, it will provide a reference for the study of the hidden costs of informal caregiving in future, contribute to the development of assessment tools and theoretical models of hidden costs of informal caregiving, and create a basis for designing an evidence-based care program.

Can formal home and community-based care substitute informal care? Evidence from Chinese Longitudinal Healthy Longevity Survey

BackgroundFormal home and community-based care are often considered as the preferable option to institutional care, offering older individuals the convenience of receiving care in their homes. Although research has found that these services may alleviate the burden on informal caregivers, there is a lack of research on which specific types of formal home and community-based care influence informal care provision.MethodsEmploying fixed-effects and quantile regression models, this study seeks to explore the effects that various formal home and community-based care services have on reducing the burden of informal care. This study draws data from the Chinese Longitudinal Healthy Longevity Survey 2005, 2008, 2011, 2014, and 2018.ResultsOur findings indicate that two types of formal care substantially influence the provision of informal care. The availability of daily living assistance services correlates with reduced informal caregiving hours, especially for those with extensive care needs. The availability of community-based health care services is linked to a reduction in the direct expenses incurred from informal caregiving, especially for those incurring greater direct caregiving costs. These effects are more prominent among urban residents. Other services, such as mental health support and legal advice services, do not demonstrate significant effects on reducing informal care hours and costs.ConclusionsDaily living assistance and community-based health care services play a crucial role in benefiting informal caregivers. It is important to prioritize the expansion of these services, especially among those with greater care needs.

Health, economic and social burden of tobacco in Latin America and the expected gains of fully implementing taxes, plain packaging, advertising bans and smoke-free environments control measures: a modelling study

ObjectiveTo investigate the tobacco-attributable burden on disease, medical costs, productivity losses and informal caregiving; and to estimate the health and economic gains that can be achieved if the main tobacco...

Modeling multiple-criterion diagnoses by heterogeneous-instance logistic regression.

Mild cognitive impairment (MCI) is a prodromal stage of Alzheimer's disease (AD) that causes a significant burden in caregiving and medical costs. Clinically, the diagnosis of MCI is determined by the impairment statuses of five cognitive domains. If one of these cognitive domains is impaired, the patient is diagnosed with MCI, and if two out of the five domains are impaired, the patient is diagnosed with AD. In medical records, most of the time, the diagnosis of MCI/AD is given, but not the statuses of the five domains. We may treat the domain statuses as missing variables. This diagnostic procedure relates MCI/AD status modeling to multiple-instance learning, where each domain resembles an instance. However, traditional multiple-instance learning assumes common predictors among instances, but in our case, each domain is associated with different predictors. In this article, we generalized the multiple-instance logistic regression to accommodate the heterogeneity in predictors among different instances. The proposed model is dubbed heterogeneous-instance logistic regression and is estimated via the expectation-maximization algorithm because of the presence of the missing variables. We also derived two variants of the proposed model for the MCI and AD diagnoses. The proposed model is validated in terms of its estimation accuracy, latent status prediction, and robustness via extensive simulation studies. Finally, we analyzed the National Alzheimer's Coordinating Center-Uniform Data Set using the proposed model and demonstrated its potential.

Net costs of breast cancer in Colombia: a cost-of-illness study based on administrative claims databases

BackgroundBreast Cancer (BC) is associated with substantial costs of healthcare; however, real-world data regarding these costs in Colombia is scarce. The contributory regime provides healthcare services to formal workers and their dependents and covers almost half of the population in Colombia. This study aims to describe the net costs of healthcare in women with BC covered by the contributory regime in Colombia in 2019 from the perspective of the Colombian Health System.MethodsThe main data source was the Capitation Sufficiency Database, an administrative database that contains patient-level data on consumption of services included in the National Formulary (PBS, in Spanish Plan de Beneficios en Salud). Data on consumption of services not included in the PBS (non-PBS) were calculated using aggregated data from MIPRES database. All direct costs incurred by prevalent cases of BC, from January 1 to December 31, 2019, were included in the analysis. The net costs of the disease were estimated by multiplying the marginal cost and the expected number of cases with BC by region and age group. Marginal costs were defined as the costs of services delivered to patients with BC after subtracting the expected costs of health services due to age, comorbidity burden or region of residence. To calculate these costs, we used Propensity Score Matching in the main analysis. All costs were expressed in 2019 international dollars. Productivity losses, transportation expenses, and caregiving costs were not included.ResultsA total of 46,148 patients with BC were identified. Total net costs were $387 million (95% CI $377 to $396 million), 60% associated with non-PBS services. Marginal costs were $8,366 (95% Confidence Interval $8,170 to $8,573), with substantial variations between regions age groups (from $3,919 for older patients in the Amazonia region to $10,070 for younger patients in the Pacific region). The costs for PBS services were higher for ambulatory services and for patients who died during 2020.ConclusionsBC imposes a substantial economic burden for the Colombian Health System with important variations in net costs between regions and age groups. Patients near death and ambulatory services were associated with higher costs of healthcare.

The cost of providing care by family and friends (informal care) in the last year of life: A population observational study

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent’s last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. Setting/participants: Adult national survey respondents – England. Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing ‘other care services’ were related to higher costs for other help only. Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Racial and Ethnic Disparities in the Monetary Value of Informal Caregiving for Non-Institutionalized People Living With Dementia.

To examine racial and ethnic differences in costs of informal caregiving among older adults with dementia in the United States. We used data from the 2002 to 2018 Health and Retirement Survey to estimate annual informal care hours for adults with dementia (n = 10,015). We used regression models to examine racial and ethnic differences in hours of informal care for activities of daily living (ADL) and instrumental ADL, controlling for demographic characteristics, education, and level of disability. Our sample was 70% non-Hispanic White, 19% non-Hispanic Black, and 11% Hispanic. Hispanics received, on average, 35.8hours of informal care each week, compared to 30.1 for Blacks and 20.1 for Whites. Racial and ethnic differences persisted when controlling for covariates. Informal care is a greater cost to racial and ethnic minoritized families. Informal care was valued at a replacement cost of $44,656 for Hispanics, $37,508 for Blacks, and $25,121 for Whites.

The experience of caregiving for children with rare musculoskeletal conditions: a qualitative study in arthrogryposis multiplex congenita

BackgroundArthrogryposis multiplex congenita (AMC) is a group of rare musculoskeletal conditions that is associated with complex healthcare needs and long-term follow up. The literature reports significant direct, indirect, and psychosocial costs for caregivers of children with neuromuscular conditions. Due to mobility limitations and frequent hospital visits, caring for a child with AMC is complex. Other challenges experienced by caregivers include financial strain, job changes, changes in interpersonal relationships and abandonment. This study was aimed at exploring the lived experience of caregivers of children with AMC.MethodsThe present study is part of a larger global mixed methods study. In the initial quantitative aspect of the study, caregivers (n = 158) of children and youths with AMC (aged 0–21 years) responded to a cost of care survey on an electronic platform. Of the 158 participants, 13 caregivers then further consented to participate in the qualitative aspect of the study in which a 60-min semi-structured, individual interview was conducted remotely. Open-ended questions were developed to gain a deeper understanding of the direct and indirect costs of care, their impact on the caregivers' lives and the quality of the care-giving experience. Interviews were transcribed, and a coding scheme was developed drawing from both the existing literature and the content of the interviews. A deductive and inductive thematic analysis was used to analyze the qualitative data using the NVivo® qualitative data analysis software.Results and conclusionFive themes describing the experiences of caregivers of children with AMC emerged from the analysis of the qualitative data: 1. Impact of the caregiving experience; 2. Cost of childcare; 3. Support system for care; 4. Managing and navigating care; 5. Supporting the child’s growth and development. In addition to the results of the thematic analysis, specific recommendations shared by the caregivers included the need for support groups and provision of support to youths to prepare them for adolescence. These findings will inform resource allocation, policymaking, and support services for children with rare conditions, their caregivers and families.

Trends in hospice utilization and place of death preferences in multiple myeloma-related deaths from 2003 to 2020: Analysis of CDC Wonder database.

e24039 Background: Multiple myeloma (MM) is an incurable hematological malignancy of plasma cells with high disease-related morbidity and mortality. Modern treatment has revolutionized the care of MM patients. However, a significant proportion of patients will eventually succumb to the disease. Place of Death (POD) is an important determinant of patient and caregiver preference, access to home-based supportive care, and cost of caregiving at EOL. We evaluate trends in POD for patients and hospice utilization with MM in the U.S. from 2003 to 2020. Methods: We analyzed data using the Centers for Disease Control and Prevention WONDER (Wide-Ranging Online Data for Epidemiologic Research) database. The data for deaths due to MM was pooled using the International Classification of Diseases-10th Revision code C 90.0. We included adult patients (age &gt; 18 years), diagnosed with MM during 2003-2020. The demographic data was obtained to calculate descriptive statistics using age, gender, place of death, census region, and utilization of hospice mortality. Annual percentage change (APC) in mortality was calculated using the joinpoint model. Results: There were 205,472 deaths in MM patients in the era 2003-2020, of which 88,245 (42.95%) deaths were in the decedent home and hospice facility (H&amp;H) and107,275 (52.12%) deaths were reported in medical facilities and nursing homes. There was a significant increase in the trend of H&amp;H [29% to 58%, average annual percentage (AAPC) 4.6404, p &lt; 0.001] and a decline in medical facility/nursing home (M&amp;N) deaths [64.9% to 37.7%, AAPC-2.1059, p &lt; 0.001]. When stratified by census regions, all regions in the US depicted significantly increased utilization of H&amp;H (p &lt; 0.001), with the highest H&amp;H utilization in the West region (CENS-R4) of 47.97%, while the highest M&amp;N mortality of 60.4% was observed in North-East region. There is a significant increase in H&amp;H utilization reported in the age group 45-64 years (AAPC 3.544) and age group 65+ (AAPC 5.0277) with p &lt; 0.0001 for both groups. The younger patients (Age &lt; 45) tend to use hospice less, but the number of deaths in the group was small. Furthermore, we saw increased H&amp;H utilization in both genders, with female AAPC at 4.0951 and male AAPC at 5.1393, p &lt; 0.0001 With regards to race, the highest H&amp;H utilization was seen in whites (44.66%), then American Indian or Alaska Native (40.12%), Asian or Pacific Islander (36.76%), and African American (36.05%). However, the trend analysis from 2003-2020 depicts the highest AAPC change in AAPI (8.8409). Conclusions: Over the past two decades, there has been a trend in increased utilization of hospice facilities in end-of-life care among MM patients. However, there is still opportunities to expand its utility especially in the North-East and among African American patients to reduce the psychological and cost of end-of-life care.

Long-run consequences of informal elderly care and implications of public long-term care insurance

We estimate a dynamic structural model of labor supply, retirement, and informal caregiving to study short and long-term costs of informal caregiving in Germany. Incorporating labor market frictions and the German tax and benefit system, we find that in the absence of Germany’s public long-term insurance scheme, informal elderly care has adverse and persistent effects on labor market outcomes and, thus, negatively affects lifetime earnings and future pension benefits. These consequences of caregiving are heterogeneous and depend on age, previous earnings, and institutional regulations. Policy simulations suggest that while public long-term care insurance policies are fiscally costly and induce negative labor market effects, they can largely offset the personal costs of caregiving and increase welfare, especially for low-income individuals.

Healthcare use and out-of-pocket costs for rural family caregivers and care recipients in a randomized controlled trial.

Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs. TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self-reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g., deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. The study included 282 FCG-CR dyads across three U.S. states. Follow-up over the 6-month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56-0. 99). Total out-of-pocket spending was not significantly different for TPC versus control. Across both groups, mean out-of-pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out-of-pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. gov # is NCT03339271.

Cost-effectiveness of the FindMyApps eHealth intervention vs. digital care as usual: results from a randomised controlled trial

Objectives Despite growing interest, the cost-effectiveness of eHealth interventions for supporting quality of life of people with dementia and their caregivers remains unclear. This study evaluated the cost-effectiveness of the FindMyApps intervention, compared to digital care-as-usual. FindMyApps aims to help people with dementia and their caregivers find and learn to use tablet apps that may support social participation and self-management of people with dementia and sense of competence of caregivers. Method A randomised controlled trial (Netherlands Trial Register NL8157) was conducted, including people with mild cognitive impairment (MCI) or mild dementia and their informal caregivers (FindMyApps n = 76, digital care-as-usual n = 74). Outcomes for people with MCI/dementia were Quality-Adjusted Life-Years (QALYs), calculated from EQ-5D-5L data and the Dutch tariff for utility scores, social participation (Maastricht Social Participation Profile) and quality of life (Adult Social Care Outcomes Toolkit), and for caregivers, QALYs and sense of competence (Short Sense of Competence Questionnaire). Societal costs were calculated using data collected with the RUD-lite instrument and the Dutch costing guideline. Multiple imputation was employed to fill in missing cost and effect data. Bootstrapped multilevel models were used to estimate incremental total societal costs and incremental effects between groups which were then used to calculate Incremental Cost-Effectiveness Ratios (ICERs). Cost-effectiveness acceptability curves were estimated. Results In the FindMyApps group, caregiver SSCQ scores were significantly higher compared to care-as-usual, n = 150, mean difference = 0.75, 95% CI [0.14, 1.38]. Other outcomes did not significantly differ between groups. Total societal costs for people with dementia were not significantly different, n = 150, mean difference = €-774, 95%CI [–2.643, .,079]. Total societal costs for caregivers were significantly lower in the FindMyApps group compared to care-as-usual, n = 150, mean difference = € −392, 95% CI [−1.254, −26], largely due to lower supportive care costs, mean difference = €−252, 95% CI [−1.009, 42]. For all outcomes, the probability that FindMyApps was cost-effective at a willingness-to-pay threshold of €0 per point of improvement was 0.72 for people with dementia and 0.93 for caregivers. Conclusion FindMyApps is a cost-effective intervention for supporting caregivers’ sense of competence. Further implementation of FindMyApps is warranted.

Cost-consequence analysis of ambulatory clinic- and home-based multidrug-resistant tuberculosis management models in Eswatini.

We compared the cost-consequence of a home-based multidrug-resistant tuberculosis (MDR-TB) model of care, based on task-shifting of directly observed therapy (DOT) and MDR-TB injection administration to lay health workers, to a routine clinic-based strategy within an established national TB programme in Eswatini. Data on costs and effects of the two ambulatory models of MDR-TB care was collected using documentary data and interviews in the Lubombo and Shiselweni regions of Eswatini. Health system, patient and caregiver costs were assessed in 2014 in US$ using standard methods. Cost-consequence was calculated as the cost per patient successfully treated. In the clinic-based and home-based models of care, respectively, a total of 96 and 106 MDR-TB patients were enrolled in 2014, with treatment success rates of 67.8% and 82.1%. Health system costs per patient treated were slightly lower in the home-based strategy (US$19 598) compared to the clinic-based model (US$20 007). The largest costs in both models were for inpatient care, administration of DOT and injectable treatment, and drugs. Costs incurred by patients and caregivers were considerably higher in the clinic-based model of care due to the higher direct travel costs to the nearest clinic to receive DOT and injections daily. In total, MDR patients in the clinic-based strategy incurred average costs of US$670 compared to US$275 for MDR-TB patients in the home-based model. MDR-TB patients in the home-based programme, where DOT and injections was provided in their homes, only incurred out-of-pocket travel expenses for monthly outpatient treatment monitoring visits averaging US$100. The cost per successfully treated patient was US$31 106 and US$24 157 in the clinic-based and home-based models of care, respectively. The analysis showed that, in addition to the health benefits, direct and indirect costs for patients and their caregivers were lower in the home-based care model. The home-based strategy used less resources and generated substantial health and economic benefits, particularly for patients and their caregivers, and decision makers can consider this approach as an alternative to expand and optimise MDR-TB control in resource-limited settings. Further research to understand the appropriate mix of treatment support components that are most important for optimal clinical and public health outcomes in the ambulatory home-based model of MDR-TB care is necessary.

Health literacy and household financial loss on malaria treatment for children under five in Ghana: a patients' perspective.

Inadequate health literacy increases medical costs and leads to poor health outcomes. However, there is a paucity of empirical evidence of such associations in sub-Saharan Africa. This study investigates how the household cost of malaria in children under five in Ghana varies based on different levels of health literacy. A cross-sectional survey involving 1270 caregivers of children under five was conducted. The survey included health literacy questionnaire and several pieces of sociodemographic and behavioural variables. We created seven caregiver health literacy profiles by scoring nine dimensions. The mean total cost for managing malaria among respondents was US$20.29 per episode. The total household cost for caregivers with high health literacy (Profile 1) (US$24.77) was higher than all other profiles, with the lowest cost (US$17.93) among the low health literacy profile (Profile 6). Compared with Profile 4, caregivers with high health literacy (Profile 1) spent more on managing malaria in children, while those with the lowest health literacy (Profile 7) spent less. The current study presents a snapshot of malaria treatment costs, and argues that low health literacy may lead to increased costs due to possible reinfections from delayed healthcare use. There is a need for longitudinal studies to understand causal relationship between health literacy and household expenses on malaria treatment to inform policy development and interventions. This study explores the impact of caregiver health literacy levels on the cost of managing malaria incidents in children under five in Ghana. High health-literate caregivers incurred the highest total household cost at US$24.77, with US$17.93 incurred by lower health-literate caregivers per malaria episode.