Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
6
pubmed:dateCreated
2010-11-8
pubmed:abstractText
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.
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Nov
pubmed:issn
0001-5555
pubmed:author
pubmed:issnType
Print
pubmed:volume
90
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
607-11
pubmed:meshHeading
pubmed-meshheading:21057744-Adaptation, Psychological, pubmed-meshheading:21057744-Adult, pubmed-meshheading:21057744-Anxiety, pubmed-meshheading:21057744-Caregivers, pubmed-meshheading:21057744-Child, pubmed-meshheading:21057744-Child, Preschool, pubmed-meshheading:21057744-Cost of Illness, pubmed-meshheading:21057744-Cross-Sectional Studies, pubmed-meshheading:21057744-Depression, pubmed-meshheading:21057744-Epidermolysis Bullosa, pubmed-meshheading:21057744-Family Relations, pubmed-meshheading:21057744-Female, pubmed-meshheading:21057744-Health Knowledge, Attitudes, Practice, pubmed-meshheading:21057744-Humans, pubmed-meshheading:21057744-Infant, pubmed-meshheading:21057744-Infant, Newborn, pubmed-meshheading:21057744-Italy, pubmed-meshheading:21057744-Male, pubmed-meshheading:21057744-Parents, pubmed-meshheading:21057744-Perception, pubmed-meshheading:21057744-Questionnaires, pubmed-meshheading:21057744-Severity of Illness Index
pubmed:year
2010
pubmed:articleTitle
Family burden in epidermolysis bullosa is high independent of disease type/subtype.
pubmed:affiliation
Istituto Dermopatico Dell’Immacolata – Istituto di Ricovero e Cura a Carattere Scientifico, Rome, Italy. ste.tab@idi.it
pubmed:publicationType
Journal Article, Research Support, Non-U.S. Gov't