Family Dermatology Life Quality Index FDLQI

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Development and evaluation of the Family Dermatology Life Quality Index (FDLQI) M.K.A. Basra and A.Y. Finlay Department of Dermatology Cardiff University Wales College of Medicine Cardiff, United Kingdom

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Family Quality of Life “ ……a concept where the family needs are met and family members enjoy their life together as a family and have the chance to do things that are important to them.” Turnbull AP et al (2000). Enhancing Quality of Life of Families of Children and Youth with Disabilities in the United States. A Paper Presented at Family Quality of Life Symposium, Seattle, WA. Beach Center on Families and Disability, Lawrence, KS.

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Why Family QoL is important? QoL of family caregivers is closely related to the QoL of patient Families may experience major impact on their lives e.g. physical and mental exhaustion, social disruption, marital problems, and financial implications. Efforts to improve patient’s QoL should also address the QoL of family. It should be analysed independently and additionally to QoL of the patient. In some specialties family QoL is considered an important outcome of services and policies.

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Dermatology and Family QoL Mostly focused on parents of children with atopic eczema e.g. - Dermatitis Family Impact (DFI) questionnaire Lawson V et al. BJD 1998; 138: 107-13 - Childhood Atopic Dermatitis Impact Scale (CADIS) Chamlin SL et al. JID 2005; 125: 1106-11 - Parents’ Index of Quality of Life in Atopic Dermatitis (PIQoL-AD) McKenna SP et al. Qual Life Res 2005;14: 231-41 No generic instrument to measure family impact across different skin diseases

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Aims Develop a generic dermatology-specific instrument for the family members of dermatological patients Evaluate the instrument to test its technical properties: Factor analysis Internal consistency Test-retest reliability Responsiveness to change Construct validity

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Stages of Questionnaire development Formulation of the questionnaire - Semi-structured interviews - Formulation of draft questionnaire - Pilot test - Finalisation of questionnaire Validation - Factor analysis - Internal consistency - Test-retest reliability - Responsiveness to change - Construct validity

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Formulation of the questionnaire Semi-structured interviews: 50 family members 59 aspects of family member’s QoL affected identified Categorisation of 59 aspects into main topic areas Initial version of questionnaire based on main topic areas

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Pilot test To assess: 1. Content validity (20 family members) 2. Face validity (14 dermatology staff members)

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Finalisation of the questionnaire Results of pilot test: - comments from family members - feed back from dermatology staff Initial statistical analysis (item reduction): - item endorsed by very few subjects - item-total correlation < 0.20

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Family Dermatology Life Quality Index (FDLQI) 10 items Self-administered Family impact over last month 4-point response format Individual item score (0-3) Total scale score (0-30) Higher the FDLQI score; greater the QoL impairment

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FDLQI Emotional impact Physical well-being Relationships People’s reaction Social life Leisure activities Burden of care Extra housework load Job/study Financial burden

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Psychometric evaluation Factor analysis Internal consistency Construct validity Test-retest reliability - 64 family members (FDLQI): 1-2 weeks later Responsiveness to change - 30 family members (FDLQI): 3-6 months later A self-assessed global question (1-10) about patient’s disease severity added to FDLQI/DLQI 132 family members (FDLQI) 109 patients (DLQI) (= 16 yr)

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Results

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Factor analysis

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Internal consistency Shows the degree of consistency of the items Assessed by Cronbach’s a coefficient a for FDLQI: 0.88 (recommended: 0.70-0.90) All items contributed to the total score

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Test-retest reliability Shows the stability of the instrument on repeat measurement Determined by Intra-class correlation coefficient (ICC) FDLQI re-administered to 64 subjects 1-2 weeks later ICC for FDLQI: 0.94 (recommended: > 0.70) Shows scale’s ability to give reproducible results in stable subjects

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Responsiveness to change Improved Mean FDLQI change= - 6.0 Worsened Mean FDLQI change= +7.5

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Construct validity Assessed by testing 3 hypotheses: 1. QoL of family members strongly related to patients’ QoL 2. Inflammatory skin diseases cause greater impairment of family QoL than non-inflammatory diseases 3. Family impact related to patient’s disease severity

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1. Family QoL is related to patient’s QoL

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2. Family QoL more impaired in Inflammatory skin diseases than in non-inflammatory p<0.0001

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3. Family QoL is related to patient’s disease severity

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Limitations and future recommendations Relatively small sample size Recruitment from out-patients only Further studies with larger sample and different clinical setting Further validation Define the meaning of FDLQI scores

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Conclusions FDLQI is a simple and practical measure for general clinical use It can be used across different skin diseases Initial results of validity are promising FDLQI can be used as an additional outcome measure in clinical research Thank you

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