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SKY-0515

Huntington's disease

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211 sources

Product information and disease descriptionPlace of product in therapyDisease descriptionBurden of Huntington's disease

Economic impact of Huntington's disease on families

9 evidence topics · 11 sources

Informal care and caregiver productivity costs: HDBOI study (2020 euros)

“Indirect costs for informal care were calculated as the total number of hours per week of informal care multiplied by the number of weeks per year. Total number of hours per year was multiplied by the country average salary per hour.” (opens the source at this quote in a new tab)

“Caregiver state support accounted for 58%–75% of all direct nonmedical costs. Indirect costs were driven by lost productivity for PwHD (34%–42%) and costs of informal care requirements (40%–42%; Appendix Table A2).” (opens the source at this quote in a new tab)

Cost componentEarly stage, mean (SD) and nMid stage, mean (SD) and nAdvanced stage, mean (SD) and n
Informal care“€27,760 (€37,790) n = 121”“€30,243 (€37,046) n = 120”“€37,758 (€45,515) n = 83”
Lost productivity, caregiver“€18,225 (€19,864) n = 33”“€12,988 (€15,621) n = 46”“€17,280 (€19,266) n = 49”
State support, caregiver“€5134 (€5834) n = 22”“€5897 (€5098) n = 36”“€4778 (€3359) n = 43”
Informal caregiver time and objective burden: France

“We included 80 ICs (mean [SD] age 57 [12.9] years, 60% women) in charge of 80 individuals with early to advanced stage HD” (opens the source at this quote in a new tab)

“The mean hours of informal care time was high: 7.3 (7.9) h/day (range 0-24); the mean professional home care was 2.8 (2.8) h/day (range 0.1-12.3).” (opens the source at this quote in a new tab)

“The burden was partially related to the multiplex caregiving status (19%). Protective factors lowering the IC burden included the absence of financial hardship (57%), a strong social network (16%) and keeping active on the job market outside home (46%).” (opens the source at this quote in a new tab)

Caregiver employment and work productivity: HDBOI caregivers

“A total of 37 (7%) respondents had to stop working because of their caregiving duties and 206 (41%) reported that their duties have impacted their career.” (opens the source at this quote in a new tab)

“Of the 206, approximately 59% were prevented from working more hours, 54% prevented from career progression, and 19% were required to choose an alternative career (See Table 3).” (opens the source at this quote in a new tab)

“High levels of informal care were reported, with an average of 34 hours of informal care per week.” (opens the source at this quote in a new tab)

“Overall impairment in caregiver daily activities increased with participant’s disease severity: 42% in ES, 48% in MS, and 52% in AS.” (opens the source at this quote in a new tab)

Caregivers of people with advanced HD in North America: systematic literature review
Caregiver outcomeQuoted value
Mean time spent as primary carer (years)“10.2 years”
Total hours of formal care per week“43 hours”
Total hours of informal care per week“41 hours”
Prevented career progression“51%”
Prevented from working more hours“70%”
Overall work productivity loss“54%”

“Caregivers often give up their job, change careers, or reduce their hours to accommodate the long hours required to provide LTC.” (opens the source at this quote in a new tab)

Informal care as a share of societal cost: United Kingdom and Norway

“Informal care was the largest driver of costs across all stages of HD; thus there is a need to also consider the needs of carers when planning services for people with HD.” (opens the source at this quote in a new tab)

“Our results highlight the crucial role the informal caregivers play in the care provided to HD patients in all disease phases. Future research should focus on the estimation of productivity loss among informal caregivers.” (opens the source at this quote in a new tab)

Out-of-pocket financing by families: Peru

“Direct non-healthcare costs represented 78.3% of total cost, indirect costs 14.4% and direct healthcare costs the remaining 7.3%.” (opens the source at this quote in a new tab)

“Direct costs were primarily financed by patients and their families.” (opens the source at this quote in a new tab)

Juvenile-onset HD: costs to the NHS and to families (England and Wales, 2020 pounds)

“The overall mean JoHD cost to the NHS per year (2020) was £126,966 which varied according to disease severity, costing just under £11,000 in mild disease, £132,419 in moderate disease, and £221,797 in advanced JoHD.” (opens the source at this quote in a new tab)

“The proportion of indirect costs to families and carers was 64% for mild disease and 17% for advanced disease.” (opens the source at this quote in a new tab)

Severity“No. accessing”Costs to family, “Mean (SD)”
Mild“9 (90%)”“£19,269 (£17,995)”
Moderate“7 (100%)”“£33,118 (£45,657)”
Advanced“14 (100%)”“£48,696 (£55,825)”
All“32 (97.0%)”“£35,993 (£43,918)”
Family financial and care needs: ICER stakeholder input

“Many people with HD require care in a long-term care facility because of the heavy caregiving needs, and caregivers often need to change their career or work less to accommodate the needs of the individual with HD” (opens the source at this quote in a new tab)

“clinicians emphasized the importance of multidisciplinary care, including neurologists, psychiatrists, therapists, social workers, and geneticists, as families need assistance not only with medical issues but also with financial issues such as long-term care and life insurance, and testing for family members.” (opens the source at this quote in a new tab)

At-risk family members: genetic discrimination in insurance

“Discrimination was reported by 93 respondents (39.9%). Reported experiences occurred most often in insurance (29.2%), family (15.5%), and social (12.4%) settings.” (opens the source at this quote in a new tab)

“Family history of Huntington's disease, rather than the result of genetic testing, was the main reason given for experiences of genetic discrimination.” (opens the source at this quote in a new tab)

“Across all three countries, a total of 46.2% of respondents report genetic discrimination or stigma based on either their family history of HD or genetic testing for the HD gene mutation.” (opens the source at this quote in a new tab)

“We report on the overall incidence of discrimination and stigma in the domains of insurance (25.9%), employment (6.5%), relationships (32.9%), and other transactions (4.6%) in the United States, Canada, and Australia combined.” (opens the source at this quote in a new tab)