ECE2018 Symposia Endo-ERN: concrete examples of added value for patient care (3 abstracts)
Germany.
Introduction: The presentation is based on experiences and opinions of CAH patients represented by German AGS parents and patient initiatives.
Meaning of patient and family perspectives: The aim is to provide an overview about wishes and expectations of German CAH patients. A special view will be given to quality of live and influencing factors of treatment.
Examples of family perspectives: The importance and meaning of patient and family perspectives will be discussed using some concrete examples. The examples relate to both male and female patients.
Conclusion: Factors of influence on patient quality of life. Family perspectives are depending on good medical treatment and education from childhood to adulthood and beyond.
Requirements of good family perspectives: Requirements of good family perspectives are for instance education of the patient and availability of specialized physicians.
Next Steps and To Dos: Finally, the presentation will discuss the endeavours faced and which steps should be prioritized to ensure optimal patient way of life.