{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T19:33:03Z","timestamp":1787772783232,"version":"build-2784847793"},"reference-count":10,"publisher":"Ovid Technologies (Wolters Kluwer Health)","issue":"2","content-domain":{"domain":["lww.com","ovid.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2021,3]]},"abstract":"\n Background:<\/jats:title>\n Epidermolysis bullosa (EB) has profound effect on the subjective distress, family burden, and quality of life (QOL) of the primary caregivers (PCG). Knowledgeable PCG can efficiently manage children with these skin diseases and also improve their QOL.<\/jats:p>\n <\/jats:sec>\n \n Objectives:<\/jats:title>\n To assess the subjective distress, family burden, and QOL, to develop and assess the short-term effectiveness of a psycho-dermatological education package (PDEP) for the PCG of children with EB.<\/jats:p>\n <\/jats:sec>\n \n Methods:<\/jats:title>\n In this interventional study, 30 PCG of EB were assessed for subjective distress, family burden, and QOL. PDEP, a structured educational tool explaining the disease and its care and stress management, was developed by the authors for the PCG and administered to them after one month of enrolment. They were reassessed after three months and compared with the baseline assessment scores. For comparison, 37 PCG of CI were also studied.<\/jats:p>\n <\/jats:sec>\n \n Results:<\/jats:title>\n \n The mean age (years) of the subjects was 28.7 \u00b1 6.7 for EB and 30.5 \u00b1 4.6 for CI. The mean or median (range) baseline scores for subjective distress, family burden and QOL of PCG (\n n<\/jats:italic>\n = 20) of EB were 8.4 \u00b1 7.9, 6.5 (0-30); 28.5 \u00b1 17.5, 24 (7-77) and 12.6 \u00b1 6.7, 11.5 (4-28) and for PCG (\n n<\/jats:italic>\n = 14) of CI were 12 \u00b1 4.3, 38.9 \u00b1 16.2 and 17.7 \u00b1 3.6 respectively. The PDEP improved the QOL (p = 0.01), knowledge (p < 0.01) and practices (p < 0.001) for PCG of EB and it improved subjective distress (p < 0.001), QOL (p < 0.01) and knowledge (p < 0.01) for PCG of CI.\n <\/jats:p>\n <\/jats:sec>\n \n Conclusions:<\/jats:title>\n PDEP is an effective educational tool in improving the QOL and knowledge of PCG, which in turn provides efficient management and psychological support to children affected with EB and CI. It should, therefore, be routinely used for educating the PCG of children with EB and CI.<\/jats:p>\n <\/jats:sec>","DOI":"10.4103\/idoj.idoj_658_19","type":"journal-article","created":{"date-parts":[[2021,11,16]],"date-time":"2021-11-16T09:17:55Z","timestamp":1637054275000},"page":"276-280","update-policy":"https:\/\/doi.org\/10.1097\/lww.0000000000001000","source":"Crossref","is-referenced-by-count":6,"title":["Impact of a Psychodermatological Education Package on the Subjective Distress, Family Burden, and Quality of Life among the Primary Caregivers of Children Affected with Epidermolysis Bullosa"],"prefix":"10.4103","volume":"12","author":[{"given":"P. A.","family":"Manomy","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vamsi K.","family":"Yenamandra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Garima","family":"Dabas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Poonam","family":"Joshi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Atul","family":"Ambekar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vishnubhatla","family":"Sreenivas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vinod K.","family":"Sharma","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Manju","family":"Vatsa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Surya","family":"Ravindran","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gomathy","family":"Sethuraman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"276","reference":[{"key":"R1-8-20240828","doi-asserted-by":"crossref","first-page":"904","DOI":"10.1016\/j.jaad.2012.01.016","article-title":"A consensus approach to wound care in epidermolysis bullosa","volume":"67","author":"Pope","year":"2012","journal-title":"J Am Acad Dermatol"},{"key":"R3-8-20240828","doi-asserted-by":"crossref","first-page":"251","DOI":"10.1111\/j.1365-2214.1986.tb00504.x","article-title":"Practical and psychological problems for parents of children with epidermolysis bullosa","volume":"12","author":"Lansdown","year":"1986","journal-title":"Child Care Health Dev"},{"key":"R4-8-20240828","doi-asserted-by":"crossref","first-page":"545","DOI":"10.1177\/1049732308315110","article-title":"The main problems of parents of a child with epidermolysis bullosa","volume":"18","author":"Van Scheppingen","year":"2008","journal-title":"Qual Health Res"},{"key":"R5-8-20240828","first-page":"80","article-title":"PGI health questionnaire N-l: A simple neuroticism scale in India","volume":"15","author":"Wig","year":"1913","journal-title":"Indian J Psychiatry"},{"key":"R6-8-20240828","doi-asserted-by":"crossref","first-page":"798","DOI":"10.1093\/geront\/29.6.798","article-title":"Application of a multidimensional caregiver burden inventory","volume":"29","author":"Novak","year":"1989","journal-title":"Gerontologist"},{"key":"R7-8-20240828","doi-asserted-by":"crossref","first-page":"528","DOI":"10.1111\/j.1365-2133.2006.07617.x","article-title":"The family dermatology life quality index: Measuring the secondary impact of skin disease","volume":"156","author":"Basra","year":"2007","journal-title":"Br J Dermatol"},{"key":"R8-8-20240828","first-page":"105","article-title":"Epidermolysis bullosa: Medical and psycho-social aspects","volume":"7","author":"Lin","year":"1996","journal-title":"Loss Grief Care"},{"key":"R9-8-20240828","doi-asserted-by":"crossref","first-page":"1009","DOI":"10.1111\/j.1365-2133.2004.06339.x","article-title":"Impact of inherited epidermolysis bullosa on parental interpersonal relationships, marital status and family size","volume":"152","author":"Fine","year":"2005","journal-title":"Br J Dermatol"},{"key":"R10-8-20240828","doi-asserted-by":"crossref","first-page":"1151","DOI":"10.1111\/j.1468-3083.2012.04682.x","article-title":"The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index","volume":"27","author":"Sampogna","year":"2013","journal-title":"J Eur Acad Dermatol Venereol"},{"key":"R11-8-20240828","doi-asserted-by":"crossref","first-page":"607","DOI":"10.2340\/00015555-0947","article-title":"Family burden in epidermolysis bullosa is high independent of disease type\/subtype","volume":"90","author":"Tabolli","year":"2010","journal-title":"Acta Derm Venereol"}],"container-title":["Indian Dermatology Online Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.ovid.com\/10.4103\/idoj.IDOJ_658_19","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,26]],"date-time":"2026-08-26T19:12:26Z","timestamp":1787771546000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.ovid.com\/10.4103\/idoj.IDOJ_658_19"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,3]]},"references-count":10,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2021]]}},"URL":"https:\/\/doi.org\/10.4103\/idoj.idoj_658_19","relation":{},"ISSN":["2229-5178"],"issn-type":[{"value":"2229-5178","type":"print"}],"subject":[],"published":{"date-parts":[[2021,3]]}}}