Measuring the impact of dermatological conditions on family and caregivers

a review of dermatology-specific instruments

the European Academy of Dermatology and Venereology TaskForce on Quality of Life

Research output: Contribution to journalReview article

14 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)1429-1439
Number of pages11
JournalJournal of the European Academy of Dermatology and Venereology
Volume31
Issue number9
DOIs
Publication statusPublished - Sep 1 2017

Fingerprint

Dermatology
Caregivers
Atopic Dermatitis
Quality of Life
Epidermolysis Bullosa
Ichthyosis
Psoriasis
Venereology
Dermatitis
Skin Diseases
Parents
Guidelines

ASJC Scopus subject areas

  • Dermatology
  • Infectious Diseases

Cite this

Measuring the impact of dermatological conditions on family and caregivers : a review of dermatology-specific instruments. / the European Academy of Dermatology and Venereology TaskForce on Quality of Life.

In: Journal of the European Academy of Dermatology and Venereology, Vol. 31, No. 9, 01.09.2017, p. 1429-1439.

Research output: Contribution to journalReview article

the European Academy of Dermatology and Venereology TaskForce on Quality of Life. / Measuring the impact of dermatological conditions on family and caregivers : a review of dermatology-specific instruments. In: Journal of the European Academy of Dermatology and Venereology. 2017 ; Vol. 31, No. 9. pp. 1429-1439.
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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.",
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