COSMIN database

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology-specific instruments

Sampogna, F., Finlay, A. Y., Salek, S. S., Chernyshov, P., Dalgard, F. J., Evers, A. W. M., Linder, D., Manolache, L., Marron, S. E., Poot, F., Spillekom-van Koulil, S., Svensson, A., Szepietowski, J. C., Tomas-Aragones, L., and Abeni, D.
The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents' Index QoL Atopic Dermatitis, PiQoL-AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB-BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.
J Eur Acad Dermatol Venereol
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Adults (18-65)
Diseases of and symptoms related to the skin and subcutaneous tissue
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
CADIS - Childhood Atopic Dermatitis Impact Scale
DFI - Dermatitis Family Impact Questionnaire
EB-BoD - Epidermolysis Bullosa Burden of Disease
Family Burden Ichthyosis/Incontentia pigmenti Questionnaire (FBI/FBIP)
FDLQI - Family Dermatology Life Quality Index
PFI - Psoriasis Family Index
PIQoL-AD - Parents’ Index of Quality of Life in Atopic Dermatitis
QPCAD - Quality of life in primary caregivers of children with atopic dermatitis