Project data

Summary of the project

In addition to the implementation of a "social counselling/case management" consultation hour in the metabolic consultation hour at Bochum University Children's Hospital, the aim of the project is to conduct accompanying research (as a mixed-methods study) that focuses on the state of health of children and adolescents with metabolic diseases from the perspective of those affected and their families.

Based on the bio-psycho-social model of the ICF, patients and their families are interviewed about their state of health and therapy goals. The transcribed interviews are recorded using the ICF category and code system and then analysed using descriptive statistics. This makes it possible to show in which areas of life the patients and their families experience restrictions and which contextual factors promote their state of health (promoting factors) or have a negative influence (barriers).

In addition to this qualitative method, the parents and - where possible - the patients are interviewed using a standardised questionnaire to determine the frequency of mental health problems in the patients. The results recorded here are compared with the analyses from the KiGGS/BELLA study (as a representative German control group) (15). To date, there has been no current and systematic study of psychological abnormalities in children and adolescents with metabolic diseases in Germany. The relevance for patients lies in improved care (counselling/case management) and greater participation in the treatment process.

The "social counselling/case management" consultation hours are to be continued after the end of the project, based on the experience gained during the project period. This psychosocial counselling and case management are already being continuously developed at the clinic and adapted to the needs of patients and their families on an ongoing basis. The presentation and publication of the results of the research project and the continuation of research activities in this area will ensure the sustainability of the project content.

The project is being carried out in co-operation between the University Children's Hospital Bochum and Nordhausen University of Applied Sciences with the support of the German Phenylketonuria Interest Group and the Society for Mucopolysaccharidoses. The experiences and results are presented nationally and internationally at various working meetings and congresses and publicised in written form through publications.