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

Research output: Contribution to journalReview article

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.

Details

Authors
  • Francesca Sampogna
  • Andrew Y. Finlay
  • Sam S. Salek
  • P. Chernyshov
  • F.J Dahlgard
  • A W M Evers
  • D. Linder
  • L. Manolache
  • Servando E. Marron
  • Francoise Poot
  • S. Spillekom-van Koulil
  • Svensson
  • Jacek C. Szepietowski
  • Lucia Tomas-Aragones
  • D. Abeni
  • the European Academy of Dermatology and Venereology TaskForce on Quality of Life
Organisations
External organisations
  • Istituto Dermopatico dell'Immacolata (IDI)-IRCCS FLMM
  • Cardiff University
  • University of Hertfordshire
  • National Medical University
  • Skåne University Hospital
  • Leiden University
  • University of Oslo
  • Dali Medical
  • Aragon Health Sciences Institute
  • Free University of Brussels (ULB)
  • Radboud University Nijmegen
  • Wrocław Medical University
  • University of Zaragoza
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Dermatology and Venereal Diseases

Keywords

  • Dermatology, family, caregivers
Original languageEnglish
Pages (from-to)1429-1439
Number of pages11
JournalJournal of the European Academy of Dermatology and Venereology
Volume31
Issue number9
Publication statusPublished - 2017 Sep 1
Publication categoryResearch
Peer-reviewedYes