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Jérôme Ries 

Bundesverband Kleinwüchsige Menschen und ihre Familien e.V.

Deutsches Zentrum für Kleinwuchsfragen

Leinestr. 2

28199 Bremen

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Patient-oriented consulting in the case of rare diseases – A modularised concept for the improvement of quality of life of patients with achondroplasia

Project leader: Jérôme Ries, German Association for People of Short Stature and their Families e.V.

 

The complexity of chronic rare diseases frequently requires an interdisciplinary treatment and a care that is not only medical, but also psychosocial in nature. In particular, the access to the latter is frequently experienced as unsatisfactory by patients with chronic rare diseases in Germany (European Organisation for Rare Diseases, 2009).

 

The aim of the project is to improve the quality of life of patients with a rare disease (achondroplasia) through a self-help-based individualised consulting concept. In the study, the quality of life as well as psychosocial burdens and resources of affected children, adolescents and young adults will be measured. 100 children aged 8 years and over and adolescents (including their families) as well as patients up to the age of 28 years will be included in the study. The quantitative data collection will take place using validated questionnaires (T0) and with the help of focus groups, the consulting needs of those affected will be qualitatively determined. From this qualitative and quantitative material, age-adapted, needs-oriented consulting modules will be conceived, which will be offered to the patients for use in the framework of an intervention and longitudinally evaluated. Thematic complexes in this regard will be above all self-competence training, coping and behavioural strategies, physical self-awareness, overprotective parents, communication and self-assertion as well as health promotion and prevention. To this aim, all users will be surveyed before (T1) and at the end (T2) of the six-month intervention phase with the standardised instruments. A comparison with a control group consisting of patients who are interested in the intervention measures but have not utilised the self-help-based individualised consultations, will be implemented at identical time points with these instruments.

 

If this consulting concept shows a positive effect on the outcome variables, an establishment of corresponding training and consulting programs in the framework of specialist outpatient clinics according to §116b SGB V for malformations of the skeletal system incorporating self-help should be strived for.




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