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Table 1 Summary characteristics 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 measure/key references Country Disease/speciality Population Language/translation Completion time Origin Domains Number of items Scale Mode of administration
1. Family Dermatology Life Quality Index (FDLQI) Basra et al. [92]; Basra et al. [93] UK Speciality-specific (Dermatology) Family members of patients with skin disease English/Italian Persian and Ukrainian 2–3 min Semi-structured interviews with family members or partners of patients with a variety of skin diseases Emotional and physical wellbeing, relationships, social life, leisure activities, burden of care, impact on job study, housework and expenditure 10 4-point Likert Self-report
2. Dermatitis Family Index (DFI) Lawson et al. [94]; Beattie &, Lewis-Jones [95] UK Disease-specific (Dermatitis) Parents and other family members of children with Atopic Dermatitis English/Arabic, Chinese, Czech, Dutch, French, Greek, Italian, Japanese, Norwegian, Polish, Portuguese, Spanish, Swedish, Ukrainian 2–3 min Qualitative interviews with family members/focus group Housework, food preparation and feeding, sleep, family leisure activities, time spent on shopping for the family, expenditure, tiredness, emotional distress, relationships between the main carer and partner or between the main carer and other children and helping with treatment 10 4-point Likert Self-report
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) Caregiver of children with Atopic Dermatitis, aged 8 years or younger English/Dutch, Italian, French, German, Spanish 4–5 min Qualitative interviews with parents of children with Atopic dermatitis in the UK, Netherlands and Italy Needs that can be influenced by a child having atopic dermatitis (e.g., need for child to have a safe and successful future, need for rest and relaxation, need for Self-respect, need for independence) 28 Dichotomous Self-report
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) Primary caregivers of children with atopic dermatitis English 1–2 min Semi-structured interviews Four domains-Exhaustion, worry about atopic dermatitis, family cooperation, and achievement 19 5-point Likert Self-report, mail
5. Childhood Atopic Dermatitis Impact Scale (CADIS) Chamlin et al. [100] Chamlin et al. [101] USA Disease-specific (Atopic Dermatitis) Children with Atopic dermatitis younger than six years and their families English 6 min Focus groups with parents and expert & Lit review Five domains, three of whom refer to the impact on the family: family and social function, sleep, and emotions 45 5-point Likert Self-report
6. Psoriasis Family Index (PFI) Eghlileb et al. [102]; Basra et al. [103] UK Disease-specific (Psoriasis) Family members of psoriasis patients English 2–3 min Interviews with relatives of people with psoriasis Frustration, worry about the reaction of other people, worry about their future, relationships, housework due to psoriasis and to treatment, time spent on treatment, social life, sporting activities, leisure activities, type of clothes, routine shopping and sleep 14 4-point Likert Self-report
7. Atopic dermatitis Burden Scale (ABS)Méni et al. [104] France Disease- specific (Dermatology) Parents of children with Atopic dermatitis (AD) French, English US, German, Italian, Spanish, Danish, Romanian and Georgian NF Literature review; educational workshop/discussion groups with parents of children with AD; feedback from expert HCPs/Parent association AD Four domains-Family life, budget & work, daily life and treatment 14 4-point Likert Self -report
8. Haemangioma Family Burden (HFB) questionnaire Boccara et al. [105] France Disease- specific (Dermatology) Parents of children with Infantile haemangioma(IH) French/US and UK English, Spanish, Italian and German NF Literature review, interviews with healthcare professionals (paediatricians, dermatologists, nurses) and with the parents of children that have or have had IH of varying severity Five domains-Family life, relationship and work, emotions/feelings, psychological and disease management 20 3-point Likert Self-report
9. FamilyPso Mrowietz et al. [106] Germany Disease-specific Partners or family of psoriasis patient English NF Literature reviews and interviews with relatives of people with psoriasis Four domains -Emotional impact of the disease, impact on daily activities and work or school and treatment characteristic, and influence on leisure activities and personal relationships 15 5-point Likert Self-report
10. Epidermolysis Bullosa Burden of Disease (EBBoD) Dufresne et al. [107] France Disease-specific (Epidermolysis Bullosa) Families of children with epidermolysis bullosa (EB) French NF Verbatim report based literature review and data collection from parents of patients during a one‐to‐one session with the same social worker Four domains-Family life , child’s life , disease and treatment , and economic and social impact 20 7-point Likert Self-report
11. Family Burden Ichthyosis (FBI) Dufresne et al. [108] France Disease-specific (Ichthyosis) Families of children with Ichthyosis French NF Literature reviews and interviews with patients, parents and experts Five domains- Economic, daily life, , familial and personal relationship, work and psychological impact 25 4-point Likert Self-report
12. Family burden of Incontentia pigmenti (IP) F’BoIP questionnaire [109] France Disease- specific (Dermatology) Parents/family members of children with IP condition French/US English NF Interviews with dermatologists, patient-reported outcome (PRO) experts and IP parents Four domains -Social life and family life, Professional life and renunciation, Daily life and Economic impact 20 6-point Likert Self-report
13. Parents’diabetes QoL Questionnaire (PDQoL) Vandagriff et al. [110]; Faulkner et al. [111] USA Disease-specific (Diabete Type 1) Parents of children with type 1 diabetes English NF NF Three domains- Life satisfaction, impact of disease, and worries related to the disease 42 5-point Likert Self-report
14. Well-being and Satisfaction of CAREgivers of children with Diabetes Questionnaire (WE-CARE) Cappelleri et al. [112] USA Disease-specific (Diabetes Type 1) Primary caregivers and parents of children with Diabetes type 1 English/Portuguese/ Spanish/Swedish 10–15 min Interviews with children and caregivers/paediatricians Four domains- Psychosocial well-being, ease of Insulin use, treatment satisfaction, and acceptance of Insulin administrations 37 5-point Likert Self-report
15. Diabetes family impact scale (DFI-S) Katz et al. [113] USA Disease-specific (Diabetes Type 1) Parents of children and adolescents with type 1 diabetes English NF Interview with parents of children with diabetes and multidisciplinary expert panel Four domains- School, work, finances and family well-being 14 4-point Likert Self-report
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) Parents of children with ENT infections France, Italy, Germany, Czech, Portugal 5 min Interviews with families Three domains- an emotional score, a daily disturbance score, and a global score 14 5-point Likert mail
17. Food Allergy Quality of Life Parent Burden (FAQLQ-PB) Cohen et al. [115] USA Disease-specific (Food Allergy) Parents of children with Food allergy English/Chinese 5–7 min Interviews/focus groups with caregivers Three domains- Issues concerning going on vacation, social activities and worries and anxieties over the previous week 17 7-point Likert  mail
18. Caregiver Quality of Life Cystic Fibrosis (CQOLCF) Boling et al. [116] USA Disease-specific (Cystic Fibrosis) Caregivers Patients with Cystic Fibrosis English 7–8 min Expert review/care staff team Four domains-The physical well-being, emotional well-being, social/family well-being, and functional well-being 35 5-point Likert Telephone
19. OverActive Bladder Family Impact Measure OAB-FIM Coyne et al. [117] USA Disease-specific (Overactive Gall Bladder) Family members of a patient with Overactive bladder English Spanish Turkish NF Focus group with Family members of patients with Overactive bladder Six domains- (Irritation, activities, travel, concern) for all family members and sleep, sex for spouses and significant others 19 5-point Likert Self -report
20. ITP- Idiopathic thrombocytopenic purpura— Parental Burden QoL questionnaire (ITP—PB) Barnard et al. [118] Canada, USA Speciality specific (Hematologic disorder) Parents of children with a hematologic disorder English 5–7 min Interview with parents/health professionals Six domains: concerns related to diagnosis/investigation, treatment/disease monitoring, monitoring of child's activities, interference with daily life, disease outcome, and emotional impacts 26 5-point Likert  Self-report
21. Huntington’s disease quality-of-life battery for carers (HDQoL-C) Aubeeluck & Buchanan [119] UK Disease-specific (Huntington’s disease) Family caregivers of persons with Huntington’s Disease English 21 min Qualitative interview/Photovoice Four domains- Demographic and objective information; practical aspects of caregiving; satisfaction with life; feelings about living with Huntington’s 34 11-point Likert Self-report
22. Huntington’s disease quality-of-life battery for carers short form (HDQoL-C-SF) Aubeeluck et al. [120] France, Italy Disease-specific (Huntington’s disease) Family caregivers of persons with Huntington’s Disease English/French, Italian, German, Polish, Portuguese, Spanish and Swedish, NF 312 carers from France and Italy completed HDQoL-C to develop a shortened version of the HDQoL-C Two domains-Satisfaction with life; feelings about living with Huntington’s disease 20 11-point Likert Self-report
23. Alzheimer’s Carers Quality of Life Instrument (ACQLI) Doward [121] UK France Germany, Italy, Spain Disease-specific (Alzheimer’s) Carers of patients with Alzheimer’s disease English NF NF The single domain of carer QoL 30 Dichotomous (true/not true) Self-report
24. Care related Quality of care—Multiple Sclerosis (CAREQOL-MS) Benito-Leon et al. [122] Spain Disease-specific (Multiple Sclerosis) Caregivers of Multiple Sclerosis English/Spanish  NF Focus groups were organized with MS patients and caregivers. /MS expert Five domains-Physical burden and global health; social impact; emotional impact; need of support; emotional reactions to patient’s psychic status 24 5-point Likert Self-report
25. Parkinson Disease Questionnaire for Carers (PDQ-Carer) Jenkinson et al. [123] UK Disease-specific (Parkinson Disease) PD carers English NF Carer Survey s registered with local branches of Parkinson's UK Four domains- Social and personal activities; anxiety and depression; self-care; stress 29 5-point Likert Self-report
26. Parkinson Disease Questionnaire for Carers Summary Index (PDQ-Carer-SI) Morley et al. [124] UK Disease-specific (Parkinson Disease) PD carers English NF Carer Surveys registered with local branches of Parkinson's UK Single summary index score computed using the four subscales of the PDQ-Carer 29 5-point Likert Self-report
27. Parkinsonism Carers QoL (PQoL Carers) Pillas et al. [125] UK Disease-specific (Atypical Parkinsonism) Relatives/partner  of patients with atypical Parkinsonism (AP) English NF Qualitative interviews with relatives/partner of a person with  AP  and Consultation with AP experts Single domain of carer QOL 26 5-point Likert Self-report
28. Family Outcome Measure -40 (FOM-40) Migliorini et al. [126] Australia, New Zealand, Canada, UK Disease-specific (Traumatic brain injury) Families with relative having a traumatic brain injury English NF Social workers from 12 rehabilitation centres across Australia, New Zealand, Canada, and the UK Seven domains-Family member coping, family cohesion, support demands (burden), relative adjustment, adequacy of service, family member resilience, sustainability of family support 40 4-point Likert Self-report
29. Caregiver Quality of life (CGQOL) Vickrey et al. [127] USA Disease-specific (Dementia) Family caregivers of people with Dementia English 17 min Interviews with carers of Dementia Patients Ten Domains; Assistance with instrumental activities of daily living; assistance with activities of daily living; role limitations due to caregiving; personal time; family interaction; demands of caregiving; worry; spirituality and faith; benefits of caregiving; caregiver feelings 80 3-point and 5-point Likert Telephone interview
30. Caregiver Dementia Quality of Life (C-DEMQOL) Brown et al. [128] UK Disease-specific (Dementia) Family members of people with Dementia English 15 min Literature reviews/qualitative interviews with family carers and support staff, /Focus groups with carers and staff Five domains- Responsibilities and personal needs; wellbeing; carer role and relationships with the person with dementia; feelings about future and carer support 30 5-point Likert researcher administered/Self-report
31. Family Impact Scale-Oro-facial (FIS—OFD) Locker et al. [129] Canada Disease-specific (Oro-facial Disorder) Parents of children with Oro‐facial conditions English 5 min Review of existing child health status and family impact questionnaires, interviews with 41 parents/caregivers Four domains-Parental and family activity, parental emotions family conflict and financial burden 14  5-point Likert Self-report
32. Quality of Life in life-Threatening Illness–Family Carer Version (QoLLTI–F) Cohen et al. [130] Canada Speciality specific (Oncology) Caregivers of cancer patients receiving palliative care English/French  < 10 min Previous research and expert review Seven domains-Carer’s own state, relationships, carer outlook, quality of care, patient condition, finances, environment 16 11-point Likert Self-report
33. CareGiver Oncology Quality of Life questionnaire (CarGOQoL) Minaya et al. [131] USA Speciality specific (Oncology) Caregivers of cancer patients English/French 6 min Qualitative interviews with informal caregivers of cancer patients Ten domains-Psychological wellbeing, burden, relationship with healthcare, administration and finances, coping, physical well-being, Self-esteem, leisure time, social support and private life 29 5-point Likert Self-report
34. Caregiver Quality of Life Index–Cancer Weitzner et al. [132] USA Oncology Speciality- specific Primary caregiver of cancer patients English, Turkish, Korean, Chinese 10 min A semi-structured interview with family caregivers, physicians, nurses and social/Expert Review Four domains-Burden, disruptiveness, positive adaptation, and financial concern 35 5-point Likert Self- report
35. City of Hope QoL Scale–Family Version Ferrell et al. [133] City of Hope. [134] USA Speciality-specific (Oncology) Family caregivers of cancer patients English and Spanish  NF In-depth qualitative interviews with cancer survivors over five years Pilot Four domains-Physical, psychological, social, spiritual 37 11-point Likert Self- report, mail
36. Caregiver Impact Questionnaire (CIQ Survey Otitis media) Boruk et al. [135] USA Disease-specific (Acute Otitis Media) Parents of children with acute otitis media English NF Previous research/Expert Panel/parents/non-medical volunteer                    Four domains- Caregiver physical Functional health status (FHS), caregiver emotional FHS, & caregiver QoL rating and sibling impact score 10 Mix of 7 and 5-point Likert and visual-analog scale Self- report
37. Acute Otitis Media QoL questionnaire (AOM) Dube et al. [136] Canada Disease-specific (Otitis Media) Parents and children with Otitis media English/French 10 min Developed base on two already validated questionnaires Four domains (sleep deprivation, change of daily and social activities, emotional distress, cancelling family plans and trips)and two domains assessing adverse consequences for the siblings and Caregiver overall QOL 13 4-point Likert and 5-point Likert Telephone
38. Pediatric Asthma Caregivers’ Quality of Life Questionnaire (PACQLQ) Juniper et al. [137] Minard et al. [138] Canada Disease Specific (Asthma) Caregivers of children with asthma English/Spanish, Swedish, French, Portuguese, Bulgarian, Danish, Finnish, German, Chinese, Hungarian, Hebrew, Dutch, Norwegian, Persian, Polish, Russian, Serbian, Afrikaans, Arabic 3–5 min Unstructured interviews with parents of children with asthma, a literature review and discussion with health professionals Two domains-Activity limitations and emotional function 13 7-point Likert Self, internet, hardcopy
39. Influenza-like illness Quality of Life (Care-ILI-QoL) Chow et al. [139] Australia Speciality- specific (Respiratory and infection disease) Parents of Children With Influenza-Like Illness English NF Quantitative survey, qualitative interviews with parents, and meetings with paediatricians Four domains- Daily activities, perceived support, social life, and emotions 16 7-point Likert    Self-report
40. CAREGIVERS questionnaire Juvenile Idiopathic Arthritis (JIA) Torres-Made et al. [140] Mexico Disease-specific (Juvenile idiopathic arthritis) Caregivers of children with JIA Spanish/English NF Non-systematic Lit review/semi-structured interview with primary caregivers/multidisciplinary group input Eight domains- Disease impact, social impact, economic and working impact, family impact, impact on caregiver-patient relationship, impact on couple relationship, impact on spirituality/religion/  personal beliefs, impact on social networks 28 Mixed Likert/dichotomous Self -report
41. CD parent/caregiver QoL questionnaire (CDPC-QOL) Abreu Paiva [141] Brazil Disease-specific (Celiac Disease) Parents and caregivers of Children and adolescent with Celiac disease Brazilian-Portuguese 6 min Developed based on Literature review, researchers experience and reviewing other QoL questionnaires Three domains Emotions, worries, and social 30 5-point Likert Self- report
42. Family Caregiver Quality of Life (FAMQOL) Scale [142] USA Disease-specific (Heart Disease -Heart Failure) Caregivers of Heart Failure patients English/Turkish NF Developed through interview with caregivers/experts Four dimensions physical, psychological, social, and spiritual 16 5-point Likert Self -report