Family burden in epidermolysis bullosa is high independent of disease type/subtype

Stefano Tabolli, Calogero Pagliarello, Claudia Uras, Cristina di Pietro, Giovanna Zambruno, Daniele Castiglia, Francesca Sampogna, Damiano Abeni

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

Epidermolysis bullosa is a rare, inherited group of disorders characterized by blistering of the skin following friction or mechanical trauma. The aim of this study was to assess the family burden of epidermolysis bullosa in children aged 0-7 years. A postal survey was conducted. The perceived severity of the disease was evaluated by the caregivers, using the Patient Global Assessment 5-point scale. The caregiver received the Family Strain Questionnaire and the 12-item General Health Questionnaire to assess the probable presence of depression/anxiety. A single-item analysis was also performed for questions related to the burden of disease. Forty-two families were invited to participate. Data from 28 young patients and their caregivers were analysed (response rate 66.7%). The family burden increased with increasing caregiver's perceived disease severity, with increasing patient's body surface involved, and if parents had depression/anxiety, reaching statistical significance in several Family Strain Questionnaire scales. The family burden due to epidermolysis bullosa is very high independent of disease type/ subtype.

Original languageEnglish
Pages (from-to)607-611
Number of pages5
JournalActa Dermato-Venereologica
Volume90
Issue number6
DOIs
Publication statusPublished - 2010

Fingerprint

Epidermolysis Bullosa
Caregivers
Disease
caregiver
Anxiety
questionnaire
Depression
Friction
anxiety
item analysis
statistical significance
Parents
trauma
Burden
parents
Skin
Surveys and Questionnaires
Health
Wounds and Injuries
health

Keywords

  • Caregivers
  • Epidermolysis bullosa
  • Family burden

ASJC Scopus subject areas

  • Dermatology

Cite this

Family burden in epidermolysis bullosa is high independent of disease type/subtype. / Tabolli, Stefano; Pagliarello, Calogero; Uras, Claudia; di Pietro, Cristina; Zambruno, Giovanna; Castiglia, Daniele; Sampogna, Francesca; Abeni, Damiano.

In: Acta Dermato-Venereologica, Vol. 90, No. 6, 2010, p. 607-611.

Research output: Contribution to journalArticle

Tabolli, Stefano ; Pagliarello, Calogero ; Uras, Claudia ; di Pietro, Cristina ; Zambruno, Giovanna ; Castiglia, Daniele ; Sampogna, Francesca ; Abeni, Damiano. / Family burden in epidermolysis bullosa is high independent of disease type/subtype. In: Acta Dermato-Venereologica. 2010 ; Vol. 90, No. 6. pp. 607-611.
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