Disutility of Illness for Caregivers and Families: A Systematic Review of the Literature

Abstract

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: 7 reported estimates of spillover disutility and 8 reporting data from which disutility could be inferred. Three studies found no disutility associated with spillover while 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.

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE

“…The social burden of care is evident in strained marital relationships, marginalization of other siblings whose needs become overshadowed, and a restriction in social activities as families perceive their presence is unwanted or feared by others enjoying social occasions 70, 78. Psychologically, caregiving for those with complex needs is associated with impaired psychological health, emotional health, quality of life, and well‐being 79. Behavioral difficulties provide an additional source of stress 80…”

In focus: The everyday lives of families of adult individuals with epilepsy

“…Persons with epilepsy (PWEs) have a wide range of devastating medical, social, and economic disadvantages. These result in a significant burden to both patients and family members [2]. Studies on the psychological effects of epilepsy have focused primarily on PWEs.…”

Caring for a family member with intellectual disability and epilepsy: Practical, social and emotional perspectives

“…[9][10][11] Somatic and psychological health, emotional health, quality of life and well-being have all been demonstrated to deteriorate among caregivers of those with complex disabilities. [12][13][14] There is also a time-related burden for family members who provide round the clock direct care support or for those who spend considerable time coordinating homebased care while they remain in the workforce. [7][8][9] In addition to the considerable responsibilities of caregiving, some families report that they are excluded from family and neighborhood activities which can further isolate them from wider social networks and supports.…”

“…14 Despite these many challenges, and although less commonly reported, it is important to note the positive benefits of caregiving, which include feelings of altruism and fulfillment of family obligation. 12 As most children and a large proportion of adults with intellectual disability now live in the family home, 17 and given the increased prevalence and severity of epilepsy among this population, 3 it is timely to consider the impact of caring for someone who has epilepsy and an intellectual disability on the family.…”