COSMIN database

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

Authors:
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.
Abstract:
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.
DOI:
10.1111/jdv.14288
URL:
https://onlinelibrary.wiley.com/doi/pdf/10.1111/jdv.14288
Journal:
J Eur Acad Dermatol Venereol
issn:
0926-9959
Publication year:
2017
pages:
1429-1439
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Role functioning
Social functioning
Age:
Adults (18-65)
Disease:
Diseases of and symptoms related to the skin and subcutaneous tissue
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires