title: Transition of Patients with Esophageal Atresia to Adult Care: Results of a Transition-Specific Education Program.
abstract: Aim of the StudyA history of esophageal atresia (EA) may result in chronic morbidity. The transition of patients from pediatric to adult care has been recognized as an important factor to maintain disease-specific follow-up and prevent exacerbation of chronic disease. Patient education is recognized as a necessary part of transition programs for children with chronic diseases. Structured education programs for patients with EA have not yet been developed. We aimed to evaluate the efficacy of a transition-specific educational program in adolescents with a history of EA.MethodsAn ethical approval was obtained. Patients with a history of EA (age 14-21 years) and their parents were invited to participate in a 2-day transition-specific educational program. Overall, 29 patients and 25 parents were recruited out of whom 10/7 were allocated to the intervention group (program) and 19/18 to the control group (no program). Subjective satisfaction (ZUF-8) and expected effects of the program on the future course of the disease, transition-specific knowledge (standardized questionnaire addressing organizational and health-related aspects of transition), health-related quality of life (DISABKIDS), and confidence for self-management (Patient Activation Measure-13) were measured with appropriate psychological instruments. Nonparametric tests were used for statistical analysis.Main ResultsSubjects participating were highly satisfied with the program (patients 26/32 points, parents 25/32; ZUF-8). Overall, 90% of the patients and 67% of the parents anticipated a positive effect on the future course of the disease. Patient's transition-specific knowledge was low before the program (36% correct answers). It improved by 18% after the intervention (56% correct answers;p= 0.004). It did not change in the control group (54 vs. 52%; n.s.). Parent's transition-specific knowledge did not change after the intervention (66 vs. 67% correct answers; ns). In patients, there were no detectable effects on health-related quality of life (79.7 intervention vs. 81.5 controls; DISABKIDS general score) or self-management (44.4 intervention vs. 41.4 controls; PAM-13).ConclusionsWe identified a deficit of transition-specific knowledge in adolescents with a history of EA. These patients benefit from a transition-specific education program. Thus, the transition to adult care may be facilitated resulting in an improved long-term care of patients with EA.
authors: Center of Pediatric Surgery, Hannover Medical School and Bult Children's Hospital, Hannover, Germany.
authors: Jens
authors: J
authors: Dingemann
authors: Kinderhospital Osnabrueck, Kompetenznetz Patientenschulung e.V, Osnabrueck, Germany.
authors: Rüdiger
authors: R
authors: Szczepanski
authors: Department of Medical Psychology, Hannover Medical School, Hannover, Germany.
authors: Gundula
authors: G
authors: Ernst
authors: Department of Pediatrics, Children's University Hospital Luebeck, Luebeck, Germany.
authors: Ute
authors: U
authors: Thyen
authors: Center of Pediatric Surgery, Hannover Medical School and Bult Children's Hospital, Hannover, Germany.
authors: Benno
authors: B
authors: Ure
authors: Department of Pediatrics, Children's University Hospital Essen, Essen, Germany.
authors: Melanie
authors: M
authors: Goll
authors: Department of Pediatrics, Children's University Hospital Luebeck, Luebeck, Germany.
authors: Ingo
authors: I
authors: Menrath
mesh_terms: D000293:Adolescent; D004933:Esophageal Atresia / Q000628:therapy*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D010353:Patient Education as Topic / Q000379:methods*; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D011446:Prospective Studies; D011788:Quality of Life; D012648:Self Care; D060305:Transition to Adult Care; D055815:Young Adult