Table 2

Quality of life (QoL) and carer questionnaires

DomainTestAge rangeCompleted by
Overall QoLICEpop CAPability measure for adults61≥18 yearsParent and other family members
Care-related QoLCarer Experience Scale (6 questions)62≥18 yearsPrimary caregiver
Health-related QoLHealth Utilities Index Mark 3−15Q31 domains: vision, hearing, speech, cognition, pain, emotion, ambulation and dexterity.≥15 yearsParticipant
Health status to calculate quality-adjusted life years lostFive level EQ-5D63 (EQ-5D-5L) domains: mobility, self-care, usual activities, pain/discomfort, anxiety/depression.≥15 yearsParticipant