Skip to main content

Table 3 Summary characteristics of family quality of life measures—population specific/generic

From: Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Name of measure/ key references Country Population Language/translation Completion time Origin Domains Number of items Scale (response options) Mode of administration
1. PedsQL™ Family Impact Module Varni et al. [143] USA Parents and the family members of children with Pediatric chronic health conditions English NF Developed and initially field-tested in families with medically fragile children with complex chronic medical conditions Two domains—Parent functioning with 6 subscales measuring parents’ Self-reported functioning (physical, emotional, social, cognitive, communication worry); and family functioning with 2 subscales (daily, activities, family relationships) 36 5-point Likert Self-report
2. Impact on-Family Scale Stein et al. [144]; Williams et al. [145]; Jalil et al. [146] USA Parents of children with chronic illness English and Spanish 10 min Family members interview Four domains—financial, Social, personal strain and Mastery 27 (update to 15 items in 2003) 4-point Likert Self-report, interviewer administered
3. Beach centre Family Quality of life Posten et al. [6]; Park et [147]; Hoffman et al USA Family members of children with disability English, Spanish, French and Chinese 15 min Interview with family members/focus group Five domains-Family interaction, Parenting, Emotional Well-being, Physical/Material Well-being 25 5-point Likert   Self-report
4. Care related Quality of Life (CareQoL) Brouwer et al. [148] Netherlands Informal caregivers of Long term Care recipients English/Dutch German Norwegian Swedish, Italian, Spanish and Portuguese NF Based on EQ-5D and evaluation of caregiver burden scales Seven general quality of life question domains -five negative and two positive dimensions of providing informal care and VAS scale 7 and VAS question 3-point Likert Self-report
5. Family Quality of life survey-2006, Isaac et al. [149], Perry and Isaac [150], Samuel et al. [151] Canada Family members of people with intellectual and developmental disabilities English, Bosnian, Chinese, Dutch, Farsi, Flemish, French, German, Italian, Japanese, Malaysian, Polish, Romanian, Slovene, Spanish, Telugu 60 min Expert opinion and previous research Nine domains—health, financial well-being, family relationships, support from others, support from services, influence of values, careers, leisure and recreation, and community integration 54 5-point Likert  self-report. Interviewer administered
6. Family Reported Outcome Measure (FROM-16) Golics et al. [152] UK Family members of people with any health condition English/Turkish, Thai, French and German 2 min Qualitative interviews with family members of patients with chronic disease, Focus group and Expert panel Two domains- Emotional, personal and social 16 3-point Likert Self-report