PMID- 22882670 OWN - NLM STAT- MEDLINE DCOM- 20131028 LR - 20191210 IS - 1468-3083 (Electronic) IS - 0926-9959 (Linking) VI - 27 IP - 9 DP - 2013 Sep TI - The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index. PG - 1151-5 LID - 10.1111/j.1468-3083.2012.04682.x [doi] AB - BACKGROUND: Severe skin diseases, such as epidermolysis bullosa (EB), may have a strong impact not only on patients but also on caregivers. A specific questionnaire evaluating the family impact of dermatological conditions has been created, the Family Dermatology Life Quality Index (FDLQI), but it has not yet been translated in Italian and validated. OBJECTIVE: To evaluate the burden of recessive dystrophic EB on family caregivers, using for the first time the Italian version of the FDLQI, and to validate the instrument. METHODS: Patients with recessive dystrophic EB participated in a postal survey enquiring about the burden of EB on family caregivers. They completed the Family Strain Questionnaire and the FDLQI and they marked on a silhouette of the human body the skin lesion distribution. RESULTS: Data on 62 family caregivers were collected. The overall mean FDLQI score was 9.8. The most frequently reported problems were the time spent on looking after the patient, emotional distress, physical well-being, and increased household expenditure. FDLQI scores were higher in family caregivers of patients between 10 and 20 years. The Italian FDLQI showed high internal consistency, construct and convergent validity. Factor analysis revealed the presence of one factor structure underlying the items of the FDLQI, which explained 51.5% of the total variance, very similar to the original questionnaire (55.8%). CONCLUSION: The Italian version of the FDLQI seems to be a useful tool to evaluate the impact of EB on family caregivers. Further studies are necessary to test this instrument in other dermatological conditions. CI - (c) 2012 The Authors. Journal of the European Academy of Dermatology and Venereology (c) 2012 European Academy of Dermatology and Venereology. FAU - Sampogna, F AU - Sampogna F AD - Health Services Research Unit, Istituto Dermopatico dell'Immacolata-IRCCS, Rome, Italy. f.sampogna@idi.it FAU - Tabolli, S AU - Tabolli S FAU - Di Pietro, C AU - Di Pietro C FAU - Castiglia, D AU - Castiglia D FAU - Zambruno, G AU - Zambruno G FAU - Abeni, D AU - Abeni D LA - eng PT - Journal Article PT - Research Support, Non-U.S. Gov't PT - Validation Study DEP - 20120811 PL - England TA - J Eur Acad Dermatol Venereol JT - Journal of the European Academy of Dermatology and Venereology : JEADV JID - 9216037 SB - IM MH - Adolescent MH - Adult MH - *Caregivers MH - Child MH - Child, Preschool MH - *Cost of Illness MH - *Epidermolysis Bullosa Dystrophica MH - *Family MH - Female MH - Humans MH - Italy MH - Language MH - Male MH - *Quality of Life MH - *Surveys and Questionnaires MH - Young Adult EDAT- 2012/08/14 06:00 MHDA- 2013/10/29 06:00 CRDT- 2012/08/14 06:00 PHST- 2012/08/14 06:00 [entrez] PHST- 2012/08/14 06:00 [pubmed] PHST- 2013/10/29 06:00 [medline] AID - 10.1111/j.1468-3083.2012.04682.x [doi] PST - ppublish SO - J Eur Acad Dermatol Venereol. 2013 Sep;27(9):1151-5. doi: 10.1111/j.1468-3083.2012.04682.x. Epub 2012 Aug 11.