Table 1 Summary characteristics of Family quality of life Measures—disease/speciality specific
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 | |
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 | |
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 |