Table 2 Psychometric properties of family quality of life measures – disease/speciality specific
Name of the measure/key references | Country | Disease/speciality | Internal consistency (Cronbach’s alpha) | Test–retest | Content | Construct/convergent | Construct/divergent/discriminant | Criterion | MID | Responsiveness/ sensitivity to change |
|---|---|---|---|---|---|---|---|---|---|---|
1. Family Dermatology Life Quality Index (FDLQI) Basra et al. [92] Basra et al. [93] | UK | Specialty Specific (Dermatology) | Yes, (α = 0.88) | Yes, r = 0.94 | Yes | Yes | NF | NF | NF | Yes |
2. Dermatitis Family Index (DFI) L Beattie &, Lewis-Jones, [95] | UK | Disease Specific (Dermatitis) | Yes, α = 0.85 to 0.90, | Yes, (r = ·95) | Yes | Yes | NF | NF | NF | Yes |
3. Parents’ Index QoL Atopic Dermatitis (PiQoL) McKenna et al. [96] Meads et al. [97] | UK, Netherlands, Germany, Italy, Spain, France, USA, Switzerland | Disease-Specific (Atopic Dermatitis) | Yes, α = 0.88 and 0.93 | Yes, > 0.85 | Yes | Yes | NF | NF | Yes | Yes |
4. QoL in primary caregivers of children with atopic dermatitis (QPCAD) Kondo-Endo et al. [98] Katsunuma et al. [99] | Japan | Disease Specific (Atopic dermatitis) | Yes,(α = 0.66–0.87) | Yes, (r = 0.80–0.87) | Yes | Yes | NF | NF | NF | Yes |
5. Childhood Atopic Dermatitis Impact Scale (CADIS) Chamlin et al. [100] Chamlin et al. [101] | USA | Disease-Specific (Atopic dermatitis) | Yes, (α = 0.76–0.93) | Yes, r = 0.96 | Yes | Yes | Yes, discriminant | NF | NF | Yes |
6. Psoriasis Family Index (PFI) | UK | Disease-Specific (Psoriasis) | Yes, α = 0.86 | Yes, r = 0.93 | Yes | NF | NF | NF | NF | NF |
7. Atopic dermatitis Burden Scale (ABS) [104] | France | Speciality- specific (Dermatology) | Yes, α = 0.78 | NF | Yes | Yes | Yes, concurrent and discriminant | NF | NF | NF |
8. Haemangioma Family Burden (HFB) questionnaire [105] | France | Speciality- specific (Dermatology) | Yes, α = 0.93 | NF | Yes | Yes | Yes, concurrent and discriminant | NF | NF | NF |
9. FamilyPso Mrowietz et al. [106] | Germany | Dermatology | Yes, α = 0.88 | NF | Yes | Yes | Yes, discriminant | NF | NF | NF |
10. Epidermolysis Bullosa Burden of Disease (EBBoD) Dufresne et al. [107] | France | Disease-Specific (Epidermolysis Bullosa) | Yes, α = 0.90 | Yes, r = 0.97 | Yes | Yes | Yes, discriminant | NF | NF | NF |
11. Family Burden Ichthyosis (FBI) Dufresne et al. [108] | France | Disease-Specific (Ichthyosis) | Yes, α = 0.89 | NF | Yes | Yes | Yes, discriminant | NF | NF | NF |
12. Family burden of Incontentia pigmenti F’BoIP questionnaire [109] | France | Speciality-specific (Dermatology) | Yes, α = 0.93 | Yes, ICC = 0·85 for each domain | Yes | Yes | Yes | NF | NF | NF |
13. Parents’Diabetes QoL Questionnaire (PDQoL) Vandagriff et al. [110]; Faulkner et al. [111] | USA | Disease-Specific (Diabetes Type 1) | Yes,α = 0.64–0.9 | NF | NF | NF | Yes, discriminant | NF | NF | NF |
14. (WE-CARE) Cappelleri et al. [112] | USA | Disease-Specific (Diabetes Type 1) | Yes, α = 0.84–0.95 | Yes, r = 0.80–0.88 | Yes | Yes | Yes | Yes | NF | NF |
15. Diabetes family impact scale (DFI-S) Katz et al. [113] | USA | Disease-specific (Diabetes Type 1) | Yes, α = 0.8 | NF | Yes | Yes | NF | NF | NF- | NF |
16. Parent Ear Nose and Throat QoL questionnaire (PAR-ENT-QoL) Berdeaux et al. [114] | France, Italy, Germany, Czech Republic, Portugal | Speciality Specific (Ear-nose-throat infection/pharyngitis) | Yes,α = 0.80–0.93 | NF | Yes | Yes | Yes | NF | NF | NF |
17. FAQLQ-PB Cohen et al. [115] | USA | Disease-specific (Food Allergy) | Yes, α = 0.95 | Yes, r = 0.93, | Yes | Yes | Yes | Yes | NF | NF |
18. Caregiver Quality of Life Cystic fibrosis (CQOLCF) Boling et al. [116] | USA | Disease-specific (Cystic fibrosis) | Yes, α = 0.91 | Yes, r = 0.862, | Yes | Yes | Yes, discriminant | Yes | NF | NF |
19. OverActive Bladder Family Impact Measure OAB-FIM Coyne et al. [117] | USA | Disease-specific (Overactive Gall Bladder) | Yes, α = 0.89 or greater for all sub-scales except for one 0.71 | Yes, r = 0.70–0.87 ICC = 0.73 to 0.87 | NF | Yes | Yes | NF | NF | NF |
20. ITP-Parental burden QoL questionnaire (ITP—PB) Barnard et al. 2003 [118] | Canada, USA | Speciality Specific (Hematologic disorder) | NF | NF | Yes | Yes | NF | NF | NF | NF |
21. HDQoL-C Aubeeluck and Buchanan [119] | UK | Disease-specific (Huntington’s disease) | Yes, only for sub-scales α = 0.80, 0.84, 0.89 | Yes, r = 0.78, 0.86, 0.90 for Subscales | Yes | Yes | NF | NF | NF | NF |
22. HDQoL-C-SF Aubeeluck et al. [120] | France, Italy | Disease-specific (Huntington’s disease) | Yes, only for sub-scales α = 0.88, 0.80 | NF | NF | Yes | NF | NF | NF | NF |
23. ACQL Doward, [121] | UK, France Germany, Italy, Spain | Disease-specific (Alzheimer’s) | Yes, α = 0.87 and 0.95 | Yes, r = 0.93, 0.92, 0.95, 0.94, 0.90 for UK, France, Germany, Italy and Spain version | Yes | Yes | NF | NF | NF | NF |
24. CAREQOL-MS Benito-Leon et al. [122] | Spain | Disease-specific (Multiple Sclerosis) | Yes, α = 0.90, 0.85, 0.81, 0.78, 0.75 for sub-scales | Yes, r = 0.96 | Yes | Yes | NF | NF | NF | NF |
25. PDQ-Carer Jenkinson et al. [123] | UK | Disease-specific (Parkinson’s Disease) | Yes, α = 0.92, 0.87, 0.86, 0.83 for Sub-scales | NF | Yes | Yes | NF | NF | NF | NF |
26. PDQ-Carer-SI Morley et al. [124] | UK | Disease-specific (Parkinson’s Disease) | Yes, α = 0.94 | NF | NF | Yes | NF | NF | NF | NF |
27. PQoLCarers Pillas et al. [125] | UK | Disease-specific (Atypical Parkinsonism) | Yes, α = 0.96 | NF | Yes | Yes | Yes, discriminant | NF | NF | NF |
28. FOM-40 Migliorini et al. [126] | UK Australia, New Zealand, Canada | Disease-specific (Traumatic brain injury) | NF | NF | NF | NF | NF | NF | NF | NF |
29. CGQOL Vickrey et al. [127] | USA | Disease-specific (Dementia) | Yes, Subscale α = 0.88, 0.93, 0.78, 0.83, 0.86, 0.86, 0.82, 0.94, 0.92, 0.89 | Yes, r = 0.53–0.89 | NF | Yes | NF | NF | NF | Yes |
30. C-DEMQOL Brown et al. [128] | UK | Disease-specific (Dementia) | Yes, α = 0.93 | NF | Yes | Yes | Yes | NF | NF | NF |
31. Family Impact Scale-oro-facial disorders (FIS—OFD) Locker et al. [129] | Canada | Disease-specific (Oro-facial disorder) | Yes, α = 0.83 | Yes, r = 0.80 | Yes | Yes | Yes, discriminant | NF | NF | NF |
32. Quality of Life in Life-Threatening Illness–Family Carer Version (QoLLTI–F) Cohen et al. [130] | Canada | Speciality Specific (Oncology) | Yes, α = 0.86 | Yes, r = 0.77–0.8 | Yes | Yes | NF | NF | NF | NF |
33. CareGiver Oncology Quality of Life questionnaire (CarGOQoL) Minaya et al. [131] | USA | Speciality Specific (Oncology) | Yes, (0.72–0.89 except private life 0.55) | Yes, r = 0.52–0.80 | Yes | Yes | Yes | NF | NF | Yes |
34. Caregiver Quality of Life Index–Cancer Weitzner et al. [132] | USA | Speciality Specific (Oncology) | Yes α = 0.91 | Yes, r = 0.95 | Yes | Yes | Yes, divergent | Yes | NF | Yes |
35. City of Hope QoL Scale–Family Version Ferrell et al. [133] City of Hope [134] | USA | Speciality Specific (Oncology) | Yes, α = 0.69 | Yes, r = 0.89 | NF | Factor analysis confirmed the 4 QOL domains as subscales for the instrument | NF | NF | NF | NF |
36. CIQ survey Ottis Boruk et al. [135] | English | Disease-specific (Acute Otitis Media) | Yes, α = 0.88 | Yes, r = 0.83, | NF | Yes | NF | NF | NF- | NF |
37. Acute Otitis Media QoL questionnaire AOM-QoL) Dube et al. [136] | Canada | Disease-specific (Otitis Media) | Yes, α = 0.81 | NF | Yes | Yes | Yes, discriminant | NF | NF- | NF |
38. Pediatric Asthma Caregivers’ Quality of Life Questionnaire PACQLQ Juniper et al. [137] | Canada | Disease-specific (Asthma) | NF | Yes, r = 0.84 | Yes | Yes | Yes, discriminant | NF | NF | Yes |
39. Influenza-like illness Quality of Life Care-ILI-QoL Chow et al. [139] | Australia | Speciality Specific (Respiratory and infection disease) | Yes, α = 0.72–0.92 | NF | NF | Yes | Yes, discriminant | NF | NF- | Yes |
40. CAREGIVERS questionnaire JIA Torres-Made et al. [140] | Mexico | Disease-specific (JIA) | Yes, α = 0.04–0.69 | Yes | Yes | Yes | Yes, divergent | NF | NF | NF |
41. CD parent/caregiver QoL questionnaire (CDPC-QOL) Abreu Paiva. [141] | Brazil | Disease-specific (Celiac Disease) | Yes, α = 0.913 | Yes, ICC = 0.88 | Yes | NF | NF | NF | NF | NF |
42. Family Caregiver Quality of Life (FAMQOL) Scale Nauser et al. [142] | USA | Disease-specific (Heart Disease-Heart Failure) | Yes,, α = 0.89 | Yes, ICC = 0.91 | Yes | Yes | NF | Yes | NF | NF |