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Table 2 Psychometric properties of family quality of life measures – disease/speciality specific

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

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)
Eghlileb et al. [102, 104]; Basra et al. [103]
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