title: Parents and children's perceptions of distress related to oral mucositis during haematopoietic stem cell transplantation.
abstract: OBJECTIVE
  Oral mucositis is a common and debilitating side effect of haematopoietic stem cell transplantation. Our study investigated parents' and children's experiences of oral mucositis treatment and whether the parents' perceptions accurately reflected the children's views.
  
  
  METHODS
  We analysed 71 questionnaires completed by the parents of children who had undergone haematopoietic stem cell transplantation, together with 38 questionnaires completed by children who were 7 years of age or over.
  
  
  RESULTS
  The parent proxy and child self-reports showed good to excellent agreement. For example, 86% of the parents and 83% of the children reported oral pain and 44% of the parents and 47% of the children reported difficulty swallowing often or very often. The majority of the parents (61%) were satisfied with the pain treatment that had been given to their child. However, the treatment provided for oral mucositis was not altogether consistent.
  
  
  CONCLUSIONS
  Oral mucositis affected the majority of the children undergoing haematopoietic stem cell transplantation, causing considerable pain and discomfort. The parent proxy reports proved to be reliable and are an important supplement to child self-reports on symptoms related to oral mucositis. But there is a clear need to establish more evidence-based care for children suffering from oral mucositis.
authors.affiliation: Department of Women's and Children's Health, Paediatrics oncology, Uppsala University, Uppsala, Sweden.
authors.forename: Tove
authors.initials: T
authors.lastname: Kamsvåg-Magnusson
authors.forename: Jenny
authors.initials: J
authors.lastname: Thorsell-Cederberg
authors.forename: Anncarin
authors.initials: A
authors.lastname: Svanberg
authors.forename: Louise
authors.initials: L
authors.lastname: von Essen
authors.forename: Johan
authors.initials: J
authors.lastname: Arvidson
authors.forename: Karin
authors.initials: K
authors.lastname: Mellgren
authors.forename: Jacek
authors.initials: J
authors.lastname: Toporski
authors.forename: Gustaf
authors.initials: G
authors.lastname: Ljungman
mesh_terms: D000293:Adolescent; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003680:Deglutition Disorders / Q000209:etiology / Q000628:therapy; D005157:Facial Pain / Q000209:etiology; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation / Q000009:adverse effects* / Q000523:psychology; D006801:Humans; D007223:Infant; D008297:Male; D059408:Pain Management / Q000379:methods*; D010147:Pain Measurement / Q000379:methods / Q000523:psychology*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D010465:Perception; D019727:Proxy / Q000523:psychology; D016032:Randomized Controlled Trials as Topic / Q000379:methods; D057566:Self Report; D018434:Sickness Impact Profile; D013280:Stomatitis / Q000150:complications / Q000209:etiology* / Q000523:psychology; D011795:Surveys and Questionnaires; D013548:Sweden
keywords: Haematopoietic stem cell transplantation; Oral mucositis; Pain; Parent proxy; Questionnaire