Table 3.

Studies used as data for carers' health-related quality of life (HRQL)

Study	Population	Utility instrument	Country	Values reported	Used in case studies
Gani et al. (2008) [12]	Modelled carers of people with multiple sclerosis Values from Neumann et al (1999) study of 679 carers of Alzheimer’s patients [71]	Health Utilities Index: 2	USA	Gani et al (2008) report carer disutilities ranging from 0.00 to 0.14 Neumann et al (1999) report a minimum carer utility of 0.86	Elosulfase alfa: NICE elosulfase alfa: TLV Ocrelizumab: NICE patisiran: NICE Patisiran: TLV
Kuhlthau et al. (2010) [72]	2412 parents of children with an activity limitation, compared to 13,560 parents of children without an activity limitation	EQ-5D (US Value Set)	USA	Unadjusted utility scores: 0.82 where child has activity limitation, 0.9 otherwise. Regression-adjusted difference: − 0.07	Voretigene neparvovec: NICE (company) Voretigene neparvovec: TLV Voretigene neparvovec: ZiN
Al-Janabi et al. (2016) [73]	1053 family members close to a person with after-effects of meningitis, compared to 517 family members close to a person with no after-effects	EQ-5D-5L, scored using interim UK value set	UK	Mean difference in utility between family members of person with after effects and family members of person without: 0.041	Voretigene neparvovec: NICE (ERG)
Lopez-Bastida et al. (2017) [13]	81 caregivers of people with spinal muscular atrophy	EQ-5D-5L (value set unclear)	Spain	Mean utility: 0.484 (0.472 for 60 caregivers of Type II patients)	Nusinersen: NICE Nusinersen: ICER

ERG evidence review group, ICER Institute for Clinical and Economic Reviews, NICE National Institute for Health and Care Excellence, NR not reported, TLV Tandvårds- och läkemedelsförmånsverket, ZiN Zorginstituut Nederlands