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Title: | Epidermolysis Bullosa in Pediatric Palliative Care: A Case Series. | Authors: | Ball K.;Camilleri S.;Kiefel S.;Schulz I.;Weston L.;Sacks B. | Monash Health Department(s): | Supportive and Palliative Care | Institution: | (Ball) Department of Pediatrics, Women's and Children's Hospital, SA, Australia (Camilleri, Kiefel, Schulz, Sacks) Department of Paediatric Palliative Care, Royal Children's Hospital, Melbourne, VIC, Australia (Weston) Department of Dermatology, Royal Children's Hospital, Melbourne, VIC, Australia (Sacks) Murdoch Children's Research Institute, Monash Health, Parkville, VIC, Australia |
Issue Date: | 11-Sep-2023 | Copyright year: | 2023 | Publisher: | Mary Ann Liebert Inc. | Place of publication: | United States | Publication information: | Journal of Palliative Medicine. 26(8) (pp 1159-1164), 2023. Date of Publication: 01 Aug 2023. | Journal: | Journal of Palliative Medicine | Abstract: | Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs of children with severe EB are poorly described. Aim(s): The aim of this case series was to examine the contribution of a pediatric palliative care service to the complex health care needs of children with severe EB. Method(s): We present a case series of five children with severe forms of EB who were known to the state-wide Victorian Paediatric Palliative Care Service, with a discussion of our learnings in caring for these children and their families. Result(s): Medical treatment decision making in EB provokes complex ethical, psychological, personal, and professional dilemmas. This case series highlights the diversity of management approaches that may be considered, each tailored to the unique context of the child and family.Copyright © Mary Ann Liebert, Inc. | DOI: | http://monash.idm.oclc.org/login?url=https://dx.doi.org/10.1089/jpm.2022.0559 | PubMed URL: | 36888536 [https://www.ncbi.nlm.nih.gov/pubmed/?term=36888536] | URI: | https://repository.monashhealth.org/monashhealthjspui/handle/1/50249 | Type: | Article | Subjects: | analgesia blister distress syndrome epidermolysis bullosa gastrointestinal hemorrhage glomerulonephritis immunoglobulin A nephropathy music therapy nurse consultant nutritional intolerance pain palliative therapy pediatric patient pruritus sepsis sleep disorder teleconsultation wound analgesic agent bath |
Type of Clinical Study or Trial: | Case series or case report |
Appears in Collections: | Articles |
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