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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