title: Phenylketonuria patients' and their parents' acceptance of the disease: multi-centre study.
abstract: Phenylketonuria (PKU) still poses a therapeutic challenge for patients and medical professionals. The aim of the study was to assess both patients' and their parents' acceptance of the disease.
  
  
  
  The study included 218 PKU patients and 178 parents of PKU children who were enrolled in the study on the basis of questionnaire data.
  
  
  
  Regarding attitude towards the disease, our study demonstrated that 63 (28.9 %) PKU patients did not accept the disease. Patients who found accepting the disease difficult, more frequently perceived themselves as inferior/different in comparison with their peers. In total, 36 % of patients did not want their friends to be aware of their condition, while only 18 % of parents believed that their children's peers should not know about their disease. In total, 42 % of parents wanted to talk to other parents of PKU children and only 13 % to a doctor. Only 20 % of patients saw the need to discuss their condition with a doctor. In total, 8 % of children, regardless of age, and 14 % of parents preferred to talk to a psychologist.
  
  
  
  Our data demonstrated that disease acceptance played an essential role in patients' social integration. The study also indicated the need to overcome communication barriers between patients and their healthy peers and for patients to find the courage to be open about the disease. The importance of support groups for PKU families and the significance of strict cooperation between patients and their families with PKU treatment teams were also revealed.
authors.affiliation: Medical and Rehabilitation Centre in Gdansk, Gdansk, Poland.
authors.forename: Ewa
authors.initials: E
authors.lastname: Witalis
authors.affiliation: Department of Pediatrics and Developmental Disorders of Children and Adolescents, Medical University of Bialystok, ul. Waszyngtona 17, 15-274, Bialystok, Poland. bozenam@mp.pl.
authors.forename: Bożena
authors.initials: B
authors.lastname: Mikoluc
authors.affiliation: Department of Pediatrics and Developmental Disorders of Children and Adolescents, Medical University of Bialystok, ul. Waszyngtona 17, 15-274, Bialystok, Poland.
authors.forename: Radoslaw
authors.initials: R
authors.lastname: Motkowski
authors.affiliation: Department of Pediatrics and Developmental Disorders of Children and Adolescents, Medical University of Bialystok, ul. Waszyngtona 17, 15-274, Bialystok, Poland.
authors.forename: Justyna
authors.initials: J
authors.lastname: Szyszko
authors.affiliation: Brudzinski Children's Hospital in Bydgoszcz, Bydgoszcz, Poland.
authors.forename: Agnieszka
authors.initials: A
authors.lastname: Chrobot
authors.affiliation: Polish-American Institute of Pediatrics, Cracow, Poland.
authors.forename: Bozena
authors.initials: B
authors.lastname: Didycz
authors.affiliation: Polish Mother's Memorial Hospital, Lodz, Poland.
authors.forename: Agata
authors.initials: A
authors.lastname: Lange
authors.affiliation: Department of Pediatrics, Regional Specialist Hospital, Research and Development Centre, Wrocław, Poland.
authors.forename: Renata
authors.initials: R
authors.lastname: Mozrzymas
authors.affiliation: National Institute of Mother and Child, Warsaw, Poland.
authors.forename: Andrzej
authors.initials: A
authors.lastname: Milanowski
authors.affiliation: National Institute of Mother and Child, Warsaw, Poland.
authors.forename: Maria
authors.initials: M
authors.lastname: Nowacka
authors.affiliation: Department of Pediatrics and Developmental Disorders of Children and Adolescents, Medical University of Bialystok, ul. Waszyngtona 17, 15-274, Bialystok, Poland.
authors.forename: Mariola
authors.initials: M
authors.lastname: Piotrowska-Depta
authors.affiliation: Department of Pediatrics, Endocrinology, Diabetology, Metabolic Disorders and Cardiology, Pomeranian Medical University, Szczecin, Poland.
authors.forename: Hanna
authors.initials: H
authors.lastname: Romanowska
authors.affiliation: Polish Mother's Memorial Hospital, Lodz, Poland.
authors.forename: Ewa
authors.initials: E
authors.lastname: Starostecka
authors.affiliation: Department of Pediatrics, Hematology and Oncology, Medical University of Gdansk, Gdansk, Poland.
authors.forename: Jolanta
authors.initials: J
authors.lastname: Wierzba
authors.affiliation: Medical Department Nutricia, Warsaw, Poland.
authors.forename: Magdalena
authors.initials: M
authors.lastname: Skorniewska
authors.affiliation: Medical Department Nutricia, Warsaw, Poland.
authors.forename: Barbara Iwona
authors.initials: BI
authors.lastname: Wojcicka-Bartlomiejczyk
authors.affiliation: Department of Pediatrics, Endocrinology, Diabetology, Metabolic Disorders and Cardiology, Pomeranian Medical University, Szczecin, Poland.
authors.forename: Maria
authors.initials: M
authors.lastname: Gizewska
mesh_terms: D000293:Adolescent; D000328:Adult; D001290:Attitude; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D010661:Phenylketonurias / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Children; Disease acceptance; Parents; Phenylketonuria