Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases
المؤلفون المشاركون
Simoes, Elisabeth
Kronenthaler, Andrea
Emrich, Christine
Rieger, Monika A.
Rall, Kristin Katharina
Schäffeler, Norbert
Hiltner, Hanna
Ueding, Esther
Brucker, Sara Y.
المصدر
العدد
المجلد 2014، العدد 2014 (31 ديسمبر/كانون الأول 2014)، ص ص. 1-11، 11ص.
الناشر
Hindawi Publishing Corporation
تاريخ النشر
2014-12-03
دولة النشر
مصر
عدد الصفحات
11
التخصصات الرئيسية
الملخص EN
Deficits of care exist during the transitional period, when young people with ongoing needs of support to achieve their physical, social, and psychological potential are entering adulthood.
This study aims to develop a patient oriented, structured provisional model to improve transitional care for adolescents with Mayer-Rokitansky-Kuester-Hauser-Syndrome as an example for orphan diseases, where problems of access and continuity are even more complex.
The study is funded by the German Federal Ministry of Education and Research (BMBF-Funding Code 01GY1125).
The target patient group are young females with this disorder, treated at the Centre for Rare Genital Malformations in Women (ZSGF), University Hospital of Tuebingen.
The study comprises five phases: an appraisal of literature, assessment of patients ( n = 25 ), parents’, partners’, and health and social care providers’ ( n = 24 ) needs and experienced deficits in care and support in a qualitative approach, construction of a provisional model via scenario technique, followed by communicative validation (including interested public, n = 100 ), preference finding, and identification of patient-oriented quality aims for follow-up.
Quantitative data from questionnaires and chart review (as sociodemographic data, nonresponder analysis, and preference rating) are worked up for descriptive statistics.
The results provide a platform for the development of future multidisciplinary transitional intervention programs in orphan diseases.
نمط استشهاد جمعية علماء النفس الأمريكية (APA)
Simoes, Elisabeth& Kronenthaler, Andrea& Emrich, Christine& Rieger, Monika A.& Rall, Kristin Katharina& Schäffeler, Norbert…[et al.]. 2014. Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases. BioMed Research International،Vol. 2014, no. 2014, pp.1-11.
https://search.emarefa.net/detail/BIM-1016639
نمط استشهاد الجمعية الأمريكية للغات الحديثة (MLA)
Simoes, Elisabeth…[et al.]. Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases. BioMed Research International No. 2014 (2014), pp.1-11.
https://search.emarefa.net/detail/BIM-1016639
نمط استشهاد الجمعية الطبية الأمريكية (AMA)
Simoes, Elisabeth& Kronenthaler, Andrea& Emrich, Christine& Rieger, Monika A.& Rall, Kristin Katharina& Schäffeler, Norbert…[et al.]. Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases. BioMed Research International. 2014. Vol. 2014, no. 2014, pp.1-11.
https://search.emarefa.net/detail/BIM-1016639
نوع البيانات
مقالات
لغة النص
الإنجليزية
الملاحظات
Includes bibliographical references
رقم السجل
BIM-1016639
قاعدة معامل التأثير والاستشهادات المرجعية العربي "ارسيف Arcif"
أضخم قاعدة بيانات عربية للاستشهادات المرجعية للمجلات العلمية المحكمة الصادرة في العالم العربي
تقوم هذه الخدمة بالتحقق من التشابه أو الانتحال في الأبحاث والمقالات العلمية والأطروحات الجامعية والكتب والأبحاث باللغة العربية، وتحديد درجة التشابه أو أصالة الأعمال البحثية وحماية ملكيتها الفكرية. تعرف اكثر