To estimate the associations between autism spectrum disorder (ASD) diagnoses and service use, caregiver time, and cost outcomes.
We used national data from the Medical Expenditure Panel Survey ...linked to the National Health Interview Survey and a study-specific survey to estimate the annual utilization and costs for health care, school, ASD-related therapy, family-coordinated services, as well as caregiver time in children aged 3 to 17 years, with and without parent-reported ASD. Regression analyses estimated the association between ASD diagnosis and cost, controlling for child gender, age, race/ethnicity, insurance status, household income, country region and urban/rural classification, and non-ASD-related illnesses.
Children with parent-reported ASD had higher levels of health care office visits and prescription drug use compared with children without ASD (P < .05). A greater proportion of children in the ASD group used special educational services (76% vs. 7% in the control group, P < .05). After adjusting for child demographic characteristics and non-ASD-associated illnesses, ASD was associated with $3020 (95% confidence interval CI: $1017-$4259) higher health care costs and $14,061 (95% CI: $4390-$24,302) higher aggregate non-health care costs, including $8610 (95% CI: $6595-$10,421) higher school costs. In adjusted analyses, parents who reported that their child had ASD did not have significantly higher out-of-pocket costs or spend more time on caregiving activities compared with control parents.
The economic burden associated with ASD is substantial and can be measured across multiple sectors of our society. Previous analyses that focused on health care underestimated this economic burden, particularly for school systems.
Health as a Family Affair Wittenberg, Eve; Prosser, Lisa A
The New England journal of medicine,
05/2016, Letnik:
374, Številka:
19
Journal Article
Recenzirano
Despite the substantial burden borne by informal caregivers, our society has only recently recognized that our conception of illness as solely an individual experience is too narrow. Acknowledgment ...of illness’s effects on families suggests a better approach to care.
If your parents are in their 80s, you probably have a conditioned response to middle-of-the-night phone calls: “What happened?” The first time, it may be your father who’s in trouble, and your mother is calling from the hospital. When he returns home, she becomes the de facto caregiver, despite being equally elderly and hardly up for the responsibility. The next phone call may be about your mother — perhaps she’s had a fall, and your sibling is calling from the hospital. Now, care becomes more complicated: the siblings negotiate, one of your sisters volunteers to take primary responsibility, even move . . .
Background
A growing body of research has identified health-related quality-of-life effects for caregivers and family members of ill patients (i.e. ‘spillover effects’), yet these are rarely ...considered in cost-effectiveness analyses (CEAs).
Objective
The objective of this study was to catalog spillover-related health utilities to facilitate their consideration in CEAs.
Methods
We systematically reviewed the medical and economic literatures (MEDLINE, EMBASE, and EconLit, from inception through 3 April 2018) to identify articles that reported preference-based measures of spillover effects. We used keywords for utility measures combined with caregivers, family members, and burden.
Results
Of 3695 articles identified, 80 remained after screening: 8 (10%) reported spillover utility per se, as utility or disutility (i.e. utility loss); 25 (30%) reported a comparison group, either population values (
n =
9) or matched, non-caregiver/family member or unaffected individuals’ utilities (
n =
16; 3 reported both spillover and a comparison group); and 50 (63%) reported caregiver/family member utilities only. Alzheimer’s disease/dementia was the most commonly studied disease/condition, and the EQ-5D was the most commonly used measurement instrument.
Conclusions
This comprehensive catalog of utilities showcases the spectrum of diseases and conditions for which caregiver and family members’ spillover effects have been measured, and the variation in measurement methods used. In general, utilities indicated a loss in quality of life associated with being a caregiver or family member of an ill relative. Most studies reported caregiver/family member utility without any comparator, limiting the ability to infer spillover effects. Nevertheless, these values provide a starting point for considering spillover effects in the context of CEA, opening the door for more comprehensive analyses.
The arrival of the COVID-19 vaccine has been accompanied by increased discussion of vaccine hesitancy. However, it is unclear if there are shared patterns between general vaccine hesitancy and ...COVID-19 vaccine rejection, or if these are two different concepts. This study characterized rejection of a hypothetical COVID-19 vaccine, and compared patterns of association between general vaccine hesitancy and COVID-19 vaccine rejection. The survey was conducted online March 20-22, 2020. Participants answered questions on vaccine hesitancy and responded if they would accept the vaccine given different safety and effectiveness profiles. We assessed differences in COVID-19 rejection and general vaccine hesitancy through logistic regressions. Among 713 participants, 33.0% were vaccine hesitant, and 18.4% would reject a COVID-19 vaccine. Acceptance varied by effectiveness profile: 10.2% would reject a 95% effective COVID-19 vaccine, but 32.4% would reject a 50% effective vaccine. Those vaccine hesitant were significantly more likely to reject COVID-19 vaccination odds ratio (OR): 5.56, 95% confidence interval (CI): 3.39, 9.11. In multivariable logistic regression models, there were similar patterns for vaccine hesitancy and COVID-19 vaccine rejection by gender, race/ethnicity, family income, and political affiliation. But the direction of association flipped by urbanicity (P=0.0146, with rural dwellers less likely to be COVID-19 vaccine rejecters but more likely to be vaccine hesitant in general), and age (P=0.0037, with fewer pronounced differences across age for COVID-19 vaccine rejection, but a gradient of stronger vaccine hesitancy in general among younger ages). During the COVID-19 epidemic’s early phase, patterns of vaccine hesitancy and COVID-19 vaccine rejection were relatively similar. A significant minority would reject a COVID-19 vaccine, especially one with less-than-ideal effectiveness. Preparations for introducing the COVID-19 vaccine should anticipate substantial hesitation and target concerns, especially among younger adults.
Abstract Background The application of conjoint analysis (including discrete-choice experiments and other multiattribute stated-preference methods) in health has increased rapidly over the past ...decade. A wider acceptance of these methods is limited by an absence of consensus-based methodological standards. Objective The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) Good Research Practices for Conjoint Analysis Task Force was established to identify good research practices for conjoint-analysis applications in health. Methods The task force met regularly to identify the important steps in a conjoint analysis, to discuss good research practices for conjoint analysis, and to develop and refine the key criteria for identifying good research practices. ISPOR members contributed to this process through an extensive consultation process. A final consensus meeting was held to revise the article using these comments, and those of a number of international reviewers. Results Task force findings are presented as a 10-item checklist covering: 1) research question; 2) attributes and levels; 3) construction of tasks; 4) experimental design; 5) preference elicitation; 6) instrument design; 7) data-collection plan; 8) statistical analyses; 9) results and conclusions; and 10) study presentation. A primary question relating to each of the 10 items is posed, and three sub-questions examine finer issues within items. Conclusions Although the checklist should not be interpreted as endorsing any specific methodological approach to conjoint analysis, it can facilitate future training activities and discussions of good research practices for the application of conjoint-analysis methods in health care studies.
Whittington et al present a comprehensive analysis of the projected long-term outcomes and cost-effectiveness of a chimeric antigen receptor T-cell therapy, tisagenlecleucel, for relapsed or ...refractory leukemia in children; this is the first gene therapy approved by the US Food and Drug Administration. The study uses a modeling approach and highlights 2 critical issues in defining value for an innovative treatment with limited evidence: the methodological challenges of applying economic evaluation techniques to rare pediatric conditions and reliably assessing value and affordability for very costly new treatments. Here, Prosser discusses the value of treatments of rare pediatric conditions.
Rapidly urbanizing communities in middle-income countries could be sources of vaccine hesitancy, and may create hot spots of low vaccination coverage. This study characterizes vaccine hesitancy in ...Shanghai and identifies disparities in vaccine safety and efficacy concerns by residency status—a marker for recent migration into the city.
Parents of children aged ≤18 years from immunization clinics in Shanghai were enrolled in summer 2019, with the data analyzed during winter 2019–2020. The paper questionnaire used the Parental Attitudes towards Childhood Vaccines scale, which included questions about vaccine safety and efficacy concerns. The primary independent variable was residency—whether an individual was a Shanghai local or a recent migrant (i.e., non-local). Linear regression models assessed the relationship between residency and vaccine safety and efficacy concerns.
Among 1,021 participants, 65.4% had local residency, and the remainder were urban non-locals (13.1%) or rural non-locals (21.5%). A majority of parents expressed concerns about vaccine side effects (73.8%), vaccine safety (63.9%), and vaccine effectiveness (52.4%). Compared with locals, rural non-locals were more concerned about vaccine side effects (β=0.26, 95% CI=0.07, 0.46), vaccine safety (β=0.42, 95% CI=0.19, 0.65), and vaccine effectiveness (β=0.37, 95% CI=0.16, 0.58).
Differences in vaccine hesitancy by residency could lead to geographical and sociodemographic disparities in vaccination coverage and outbreaks of vaccine-preventable disease.
This article is part of a supplement entitled Global Vaccination Equity, which is sponsored by the Global Institute for Vaccine Equity at the University of Michigan School of Public Health.
The topics covered include (1) methods and applications of quantifying informal caregiving time, (2) effects on quality-adjusted life-years, (3) direct effects on caregiver activities such as ...healthcare utilization, employment, and schooling outcomes, (4) effects of the inclusion of spillover effects on cost-effectiveness ratios, and (5) commentaries on the field. Brown et al. and Lavelle et al. measure health spillover effects in caregivers or parents of children with autism; Brown et al. using indirect methods (EQ-5D and SF-6D) and Lavelle et al. using a direct assessment (time trade-off questions) 12, 13. An overview paper by Wittenberg et al. provides a comprehensive catalog of caregiver/ family member utilities in the literature organized into three groupings: health utilities that isolate the change in quality of life associated with spillover, health utilities of a caregiver/family member sample and a comparison or control group, and health utilities of caregivers/family members alone (no comparison group) 14. ...Canaway et al. present qualitative findings collected at end of life on who is considered "close" when assessing spillover in economic evaluations 15.
Background
Caring for an ill or disabled family member imposes a well-documented burden on the caregiver. The benefits of a health intervention may be underestimated if “spillover” effects on family ...members are not captured, resulting in inaccurate conclusions of economic evaluations.
Objective
To provide an estimate of, and to summarize measurement approaches for, the spillover disutility of illness on family members, relatives, and caregivers, through a systematic review of the literature.
Methods
The medical (PubMED), psychology (PsycINFO), and economics (EconLit) literatures were searched from inception through February 2012 for published studies measuring spillover disutility of illness on family members and caregivers. Inclusion criteria were (1) studies using preference-based measures of health-related quality of life, and (2) studies reporting spillover disutility, or (3) studies reporting data from which a spillover disutility could be inferred.
Results
Fifteen studies were included in this review: seven reported estimates of spillover disutility and eight reported data from which disutility could be inferred. Three studies found no disutility associated with spillover, whereas 12 found measurable effects as large as −0.718 (and two found evidence of positive spillover in subsets of their samples). Generic (indirect) utility instruments were primarily used to measure spillover, including the EQ-5D, QWB, and HUI (
n
= 13), though two studies used modified versions of the time trade-off technique. Illnesses studied included childhood disorders (e.g., spina bifida, congenital malformations), diseases of the elderly (e.g., Alzheimer’s disease and dementia), physically disabling conditions (e.g., arthritis, multiple sclerosis), and medical conditions such as cancer and stroke. The persons affected by spillover included parents, grandparents, spouses/partners, other family caregivers, and household members.
Conclusions
There is a limited literature on the spillover disutility of illness on family members and caregivers, providing some specific estimates of a generally small, negative effect for particular conditions and individuals. Measurement methods vary across studies and a consensus approach has not yet been reached. Evidence suggests that the inclusion of spillover effects in economic evaluations would increase the relative effectiveness of interventions that address conditions with spillover compared to those without, though such differential benefits may be limited to such specific circumstances.
PDF
