Caregiver Costs Research Articles

The Economic Burden of Myasthenia Gravis (MG): A Survey of Affected People and Their Families.

Claims-based analyses have demonstrated high medical costs associated with myasthenia gravis (MG). We examined the economic burden of MG from the perspective of affected people and their families. The Muscular Dystrophy Association developed and conducted an online survey of people with MG and their caregivers between October 26 and December 6, 2021. Major themes were: MG-associated financial decisions, quality of life, employment and direct/indirect costs of diagnosis, healthcare insurance, medical visits, medications/treatments, medical equipment/devices, and caregiving. Eight hundred people with MG and 238 caregivers responding on behalf of a person with MG completed the survey. Most respondents were white (85%) and about half (55%) had received a 4 year college degree or higher education. Respondents indicated that MG impacted their health, recreation, and finances. 70% reported making financial adjustments or seeking financial assistance. Annual out-of-pocket costs (mean, $15,798; median, $7750) were primarily driven by medications, cost to receive a diagnosis, and healthcare insurance premiums. People receiving infusions paid significantly more across all care domains. Demographic disparities were observed, with people of color, women, and those on disability paying significantly more to receive a diagnosis than their counterparts. The economic burden on people with MG and their families is substantial, primarily driven by direct costs. There is a need to engage more broadly with the MG community for generalizable information. Respondents were self-selected, which may impact results. The results will be used to educate the public and inform advocacy work, with the goal of improving the lives of people with MG.

Care Partner Burden and Support Services in Dementia.

Informal care partners are essential to the care of people living with dementia, but they often experience significant burden and receive minimal training, support, and resources. This article provides an overview of care partner experiences, factors contributing to burden, and methods for reducing burden of caregiving in dementia. The US Department of Health and Human Services National Plan to Address Alzheimer's Disease and the World Health Organization Global Action Plan for dementia have identified support for dementia care partners as a top priority for research and policy in recognition of care partners' instrumental but underresourced role in dementia care. The psychological, financial, social, and physical costs of caregiving, particularly without necessary knowledge, skills, and resources, can lead to care partner burden. Reassuringly, multicomponent interventions can mitigate burden and other negative consequences of caregiving, especially when they are theoretically grounded, inclusive, and culturally relevant. Health care providers play a vital role in the early identification of care partner burden through brief, regular assessments. With earlier identification and subsequent intervention (eg, education, skills-based training, local and national resources), the experience of burden and negative health outcomes can be mitigated and quality of life for people living with dementia and their care partners can be improved.

The impact of caregiver and intended mode of birth on the public cost of care: Cost analysis of maternity and neonatal care in New Zealand

ProblemWomen who receive midwifery continuity-of-care require fewer interventions, generating significant cost savings for health services. Existing cost models were based on studies including low-risk pregnancies, limiting generalisability. BackgroundNew Zealand (NZ) is the only high-income country with a fully integrated midwifery continuity of care model facilitating study of real-world costs by model of care. AimTo compare healthcare utilisation and pregnancy-related public healthcare cost for private obstetricians and other community maternity caregivers (GPs, midwives), and planned caesarean compared to intended vaginal birth, within the NZ continuity-of-care maternity system. MethodsPopulation-based cohort study including singleton pregnancies under private obstetrician and community maternity care with live birth January 2016 - June 2020. Administrative data were used to identify healthcare utilisation and associated cost for mothers and their infant(s) until 1 year post birth, using generalised linear model techniques. Findings248,424 singleton pregnancies were included. Adjusted mean costs were significantly higher for private obstetricians than community maternity caregivers (mostly midwives) ($1,096, 95 % CI $813 – 1,378). Elective caesarean section was more costly than intended vaginal birth ($4,316, 95 % CI $4,105 – 4,527). Within each intended mode of birth, pregnancies cared for by private obstetricians were more costly than community maternity caregivers. DiscussionConsistent with existing literature, continuity of care by independently practicing midwives was less costly in NZ after adjustment for demographic and clinical differences. ConclusionsFunding structures and population pregnancy risk profile are important considerations in the implementation of midwifery-led continuity of care models. Statement of significanceProblem: Health systems seek to improve maternity care and contain healthcare budgets.What is already known: Women cared for by continuity-of-care midwives experience lower rates of preterm birth, obstetric intervention, and improved satisfaction compared to other models of care. It has been reported as cost-effective in a clinical trial setting among low-risk women.What this paper adds: This study uses real-world data from New Zealand, the only country with fully integrated midwifery continuity-of-care, to establish that midwifery care is cost-saving for public healthcare systems compared to maternity care provided by private obstetricians, when adjusted for obstetric risk factors.

Indirect Costs of Alzheimer’s Disease: Unpaid Caregiver Burden and Patient Productivity Loss

ObjectivesThe direct medical costs associated with Alzheimer’s disease (AD) in the United States have been estimated to be over US dollars $360 billion, but this value does not reflect the substantial financial burden on unpaid caregivers and society. We estimated the economic burden of unpaid caregivers and patient productivity loss because of AD across all disease severity stages to better understand the indirect impacts of AD. MethodsWe performed a narrative literature review to identify estimates of unpaid caregiver burden and market productivity loss. In addition, we leveraged a published algorithm to estimate non-market productivity loss because of AD. Patient-level estimates were scaled to the population on the basis of AD prevalence in the United States (approximately 12.5 million), weighted by disease severity. ResultsThe total annual indirect costs of unpaid caregiving and market and non-market productivity loss of AD increased with severity: $36 934 for mild cognitive impairment owing to AD, $65 565 for mild AD, $103 717 for moderate AD, and $145 250 for severe AD (2024 United States Dollars [USD]). Considering the current distribution of prevalent patients across severity stages, the total annual indirect cost was estimated at $832 billion, which includes $599 billion in unpaid caregiving costs and $233 billion in productivity losses. ConclusionsConventional cost estimates, which do not consider unpaid caregiver burden and patient productivity loss, significantly underestimate the total burden of AD. Both elements should be incorporated into cost estimates and value assessments to best capture the total indirect impact of AD and the value of new therapies.

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...

Family Caregivers' Experiences of Living with Hemodialysis Patients: A Descriptive Phenomenology.

Several challenges are experienced by caregivers of patients with chronic kidney disease undergoing hemodialysis treatment. These difficulties pertain to the patients, their hemodialysis treatment, and other caregiving responsibilities and concerns. Given the adverse effects of caring for individuals with such conditions on the lives of caregivers, this study aims to investigate the experiences of hemodialysis patients' family caregivers. A qualitative study with a descriptive, phenomenological approach was conducted in the hemodialysis department of a teaching hospital in Birjand, Iran, in 2022. Fourteen participants were selected through purposive sampling. The data were collected through semistructured interviews and analyzed using Colaizzi's method. The participants were caregivers of dialysis patients who had a 6-month history of caring for patients and were first-degree relatives of the patient. A total of 278 initial codes emerged, which were categorized into three overarching themes and eight subthemes based on the research purpose and question. The overarching themes comprised caregiver time and cost strain, social challenges faced by the caregiver, and life challenges faced by the caregiver. Caregivers of patients with chronic kidney disease face problems in multiple dimensions and are susceptible to developing new problems. The majority of caregivers in this study were extremely vulnerable women; if they experience difficulties, the family's foundation will be weakened. Therefore, caregivers should be included in patients' treatment plans. The expression of caregivers' experiences can help solve the problems they are facing and also helps hospital managers and health planners better plan to solve problems.

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.