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Prof. Dr. Silke Schmidt 

Ernst-Moritz-Arndt Universität Greifswald

Lehrstuhl Gesundheit und Prävention

Robert-Blum-Str. 13

17487 Greifswald  

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Transition_logoFostering the health care competence of adolescents with chronic diseases in the transition from the paediatric to the adult care systems

Prof. Dr. Silke Schmidt1, Prof. Dr. Ute Thyen2, Dipl.-Psych. Carsten Herrmann1, Dipl.-Psych. Franziska Bomba2

1 Lehrstuhl Gesundheit und Prävention, Ernst-Moritz-Arndt Universität Greifswald

2 Klinik für Kinder- und Jugendmedizin, Universitätsklinikum Schleswig-Holstein, Campus Lübeck

 

Background

For adolescents with chronic diseases, the transition from child-centred to adult-oriented care systems represents a particular challenge. It is known that after discharge from paediatric care, the number of regular physicians' visits and the course of illness can deteriorate.

 

Transition programs vary in quality, and transition consultation hours have so far only been introduced in Germany very sporadically. In child and adolescent medicine, quality-assured patient training programs do exist for relatively frequent diseases, but many questions of care are still clarified with the parents and not with the chronically ill adolescents affected. The aim of the project is to develop a cross-disease, patient-centred training program for adolescents to increase self-competence in dealing with questions of care which are particularly relevant for transition care.

 

Aim and research question

The transition care of chronically ill adolescents will be considered from their own perspective and from that of their physicians. The aim is to develop a transition training program for chronically ill adolescents and consequently an improved self-management of the illness, strengthening of motivation and autonomy, assuming self-responsibility in health care and a meaningful and efficient utilisation of the offers of the health system (empowerment).

 

Methods

For the preparation of the intervention study, focus groups and individual interviews with chronically ill adolescents (N=28) with type 1 diabetes, cystic fibrosis and chronic inflammatory bowel diseases and expert interviews with physicians/psychologists will be conducted and evaluated in a structured manner by means of qualitative content analysis. This will enable the needs and wishes of chronically ill adolescents to be taken into account in the transitional care from their own subjective perspective in the further course of the study and in the training module.

 

In parallel to this, a psychometric testing of questionnaires on satisfaction with medical care (CHC-SUN, adapted version for young adults) and on the self-perceived health competence of chronically ill adolescents will be conducted in various paediatric clinics and rehabilitation establishments as well as an online survey.

 

In cooperation with the ModuS project group of the competence network for patient training in childhood and adolescence e.V. (KomPaS), a transition training program will be developed which should support adolescents in the process of transition and make them competent for the transition. The transition training deals in thematic terms both with the transfer to adult medicine, i.e. the change of the care institutions and physicians providing treatment, and with growing up with a chronic disease in terms of practising a profession, living alone, partnership and the separation from parents. It is designed to be straightforward and resource-oriented and contains specialist input through the study leaders and the affected young adults as experts, small-group work (e.g. research exercises on the internet), exchanging experiences in the group, moderated discussions and self-reflection exercises.

 

In the framework of a controlled intervention study, the transition training will be evaluated in a sample of 240 adolescents (15-19 years old). The adolescents (with type 1 diabetes, cystic fibrosis and chronic inflammatory bowel diseases) will be recruited through specialist outpatient clinics in specialist hospitals, special consultation hours in registered physicians' practices (diabetology, pneumology, gastroenterology) as well as through cooperating paediatric and adolescent physicians working in GPs' practices and physicians for general medicine.

 

Dependent variables are, besides self-management, motivation and autonomy, also the patients' and physicians' satisfaction with care, the improvement of the clinical course of illnesses and the improvement of quality of life.

 

The project has a running time of three years (04/2011 - 04/2014). The project is led by Prof. Silke Schmidt from the Chair for Health and Prevention, Institute for Psychology of the University of Greifswald. The cooperation partners of the project are the Greifswald University Hospitals for Children and Adolescents, the University Hospital Schlweswig-Holstein, Campus Lübeck and Kiel in cooperation with registered specialist outpatient clinics; registered child and adolescent physicians in GP practices; adult-medical specialist physicians, the Competence Network Patient Training in Childhood and Adolescence (KomPaS) with the ModuS workgroup under the leadership of Dr. Rüdiger Szczepanski, the mobile diabetes training Schleswig-Holstein and the self-help group cystic fibrosis.



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