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

Sampogna, Francesca; Finlay, Andrew Y.; Salek, Sam S.; Chernyshov, P.; Dahlgard, F.J; Evers, A W M; Linder, D.; Manolache, L.; Marron, Servando E. and Poot, Francoise, et al. (2017) In Journal of the European Academy of Dermatology and Venereology 31(9). p.1429-1439
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... (More)

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.

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Contribution to journal
publication status
published
subject
keywords
Dermatology, family, caregivers
in
Journal of the European Academy of Dermatology and Venereology
volume
31
issue
9
pages
11 pages
publisher
Elsevier
external identifiers
  • scopus:85029370705
  • pmid:28426906
  • wos:000417421400037
ISSN
0926-9959
DOI
10.1111/jdv.14288
language
English
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yes
id
4932b6fe-21c7-4b2e-bf4a-0312fbed68b8
date added to LUP
2017-10-09 17:16:07
date last changed
2018-04-29 04:42:50
@article{4932b6fe-21c7-4b2e-bf4a-0312fbed68b8,
  abstract     = {<p>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.</p>},
  author       = {Sampogna, Francesca and Finlay, Andrew Y. and Salek, Sam S. and Chernyshov, P. and Dahlgard, F.J and Evers, A W M and Linder, D. and Manolache, L. and Marron, Servando E. and Poot, Francoise and Spillekom-van Koulil, S. and Svensson,  and Szepietowski, Jacek C. and Tomas-Aragones, Lucia and Abeni, D. and , },
  issn         = {0926-9959},
  keyword      = {Dermatology,family,caregivers},
  language     = {eng},
  month        = {09},
  number       = {9},
  pages        = {1429--1439},
  publisher    = {Elsevier},
  series       = {Journal of the European Academy of Dermatology and Venereology},
  title        = {Measuring the impact of dermatological conditions on family and caregivers : a review of dermatology-specific instruments},
  url          = {http://dx.doi.org/10.1111/jdv.14288},
  volume       = {31},
  year         = {2017},
}