TY - JOUR
T1 - Measuring the impact of dermatological conditions on family and caregivers
T2 - a review of dermatology-specific instruments
AU - Sampogna, Francesca
AU - Finlay, Andrew Y.
AU - Salek, Sam S.
AU - Chernyshov, P.
AU - Dahlgard, F.J
AU - Evers, A W M
AU - Linder, D.
AU - Manolache, L.
AU - Marron, Servando E.
AU - Poot, Francoise
AU - Spillekom-van Koulil, S.
AU - Svensson, null
AU - Szepietowski, Jacek C.
AU - Tomas-Aragones, Lucia
AU - Abeni, D.
AU - the European Academy of Dermatology and Venereology TaskForce on Quality of Life
PY - 2017/9/1
Y1 - 2017/9/1
N2 - 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.
AB - 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.
KW - Dermatology
KW - family
KW - caregivers
UR - http://www.scopus.com/inward/record.url?scp=85029370705&partnerID=8YFLogxK
U2 - 10.1111/jdv.14288
DO - 10.1111/jdv.14288
M3 - Review article
C2 - 28426906
AN - SCOPUS:85029370705
VL - 31
SP - 1429
EP - 1439
JO - Journal of the European Academy of Dermatology and Venereology
JF - Journal of the European Academy of Dermatology and Venereology
SN - 1468-3083
IS - 9
ER -