Gundula Ernst

Cognitive functioning in allogeneic hematopoietic stem cell transplantation recipients and its medical correlates: a prospective multicenter study.

Owing to its neurotoxicity, allogeneic hematopoietic stem cell transplantation (HSCT) carries risks for cognitive impairment. In this multicenter study, we prospectively evaluated cognitive functioning and its medical and demographic correlates in patients undergoing allogeneic HSCT.

How to Train Families to Cope with Lifelong Health Problems

From the Department of Medical Psychology, Hannover Medical School, Hannover, 2 3 E P A A significant proportion of children and adolescents in industrialized countries suffer from chronic health problems requiring special care. The diagnosis of a long-term disease brings about a dramatic change in the life of families with increased requirements for disease management. This often leads to more stress, anxiety, and depression, as well as reduced health-related quality of life (hrQoL) and impaired everyday life for the whole family. The quality of medical and psychosocial care after diagnosis is crucial for the future course of disease. The main challenge of pediatric health education is transforming medical theory into daily practice. Standards of health care after the diagnosis of a long-term disease differs dramatically across Europe. Taking the example of children with type 1 diabetes, the time spent with a diabetes educator after the diagnosis during in-patient care varies widely. After the onset of diabetes, German children and adolescents together with their parents receive 2 weeks of individualized education and psychological treatment from a multidisciplinary diabetes team affiliated with the hospital. In the United Kingdom, families go home after 2 days of inpatient care and education, equipped with a pile of brochures and a telephone number that they can call with diabetes management queries. Testimonials from patients and their parents collected within the European-Certified Diabetes Educator Course project show that parents of children with type 1 diabetes in the United Kingdom gain knowledge mostly from other parents and from online parent forums. Both sources have great value for families. Whereas a multidisciplinary team provides a robust basis for diabetes management, there is no doubt that much can be learned from other parents. Recent comparison studies of national registries have shown clear differences in the quality of diabetes control across countries; for example, the average hemoglobin A1c value for children and adolescence with type 1 diabetes was 7.9 in Germany, 8.5 in the US, and 9 in the United Kingdom. The prevalence of diabetes ketoacidosis was lowest in the German and Austrian registry. It is known from the Diabetes Control and Complications Trial that a lower hemoglobin A1c value substantially reduces the risk of late complications. Standard diabetes care in Germany incorporates ongoing long-term health education. All children and adolescents with

Effectiveness of a generic transition-oriented patient education program in a multicenter, prospective and controlled study

Abstract Objectives For young people (YP) with a chronic condition growing up is a challenging process. This stage of life is associated with a higher risk for non-adherence, insufficient disease control, acute deteriorations and irregular consultations. Patient education programs can support YP cope with the independent disease management and the transition into adulthood. However, there is a lack of transition-oriented patient education programs for most chronic conditions. In this study, an existing generic transition-oriented education program was expanded by a module for parents and evaluated in a multicenter study all over Germany. Methods YP with chronic conditions and their parents were quasi-randomized into a control group (CG) and an intervention group (IG). The IG took part in the 1.5-day standardized education program ModuS-T while the CG received treatment as usual. The education program was designed as a compact workshop in a group setting for youth (15–24 years) and their parents. The education program contained youth specific topics such as the transfer to adult care, the influence of disease on the daily life of YP, and other important issues like detachment from parents, occupational career, intimate relationships and family planning. The parent module dealt with the topics transition from child-centered to adult health services, and supporting children to become adults. The program focused on improving competencies relevant for transition and self-management skills of the families. Satisfaction with the program, transition-specific knowledge, transition competencies, patient activation and health-related quality of life (HRQoL) were measured at baseline and after 4 weeks. Results A total of 300 YP (overall mean age 17.6 years; 47% female; IG = 166, CG = 134) with 12 different conditions and their parents participated in 37 transition programs. The participants were highly satisfied with the program. The program significantly affected transition-specific knowledge, transition competence and patient activation (p < 0.001). There were no effects on HRQoL. Conclusion The generic transition-oriented education program empowers YP with chronic conditions and their parents in the transition process. Due to a modular approach, the program is successful in a variety of chronic conditions.

Transition of Patients with Esophageal Atresia to Adult Care: Results of a Transition-Specific Education Program

Aim of the Study A 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. Methods An 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 Results Subjects 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. Patients 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.). Parents 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). Conclusions We 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.

Patientenschulungen in der Transition@@@Patient education in transition: Empowerment für Jugendliche mit chronischen Erkrankungen@@@Empowerment for young people with chronic illnesses

ZusammenfassungFür Jugendliche mit einer chronischen Erkrankung stellt das Erwachsenwerden und das selbstständige Krankheitsmanagement eine Herausforderung dar. Durch eine Patientenschulung kann der Übergang in die Erwachsenenmedizin vorbereitet und ein Empowerment der Zielgruppe erreicht werden.In der Kinderklinik Lübeck und dem Institut für Psychologie der Universität Greifswald wurde nun erstmals eine eigenständige Transitionsschulung entwickelt, die zunächst für Jugendliche mit Typ-1-Diabetes, Mukoviszidose und chronisch-entzündlichen Darmerkrankungen konzipiert wurde, um ihre Gesundheitskompetenz und ihre Selbstständigkeit bezüglich ihrer Erkrankung zu fördern.Auf Basis qualitativer Interviews wurde ein Curriculum entwickelt; Themen sind die Organisation des Krankheitsmanagements, Perspektiven der Weiterbehandlung, Kennenlernen krankheitsspezifischer Unterstützungsangebote, Ablösung von den Eltern, Berufsfindung/-ausbildung und Partnerschaft. Die Schulung wurde anschließend auf alle Jugendliche mit chronischen Erkrankungen erweitert und um eine Elternschulungskomponente und eine interaktive Internetseite ergänzt.AbstractFor young people with a chronic disease growing up and independent disease management are challenging. Through patient education, the transition into adult medicine and an empowerment of the target group will be reached.At the Children’s Hospital Luebeck and the Department of Psychology at the University of Greifswald independent transition training has now been developed for the first time; this was initially designed for young people with type 1 diabetes, cystic fibrosis and inflammatory bowel disease, to promote their health literacy and their autonomy with regard to their disease.Based on qualitative interviews, a curriculum was developed, which includes the topics of the organization of disease management, prospects of further treatment, getting to know disease-specific support services, detachment from family, career choice/education and partnership. The training was then extended to all young people with chronic diseases and supplemented by a parent training component and an interactive website.