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Development of a provisional model to improve transitional care for female adolescents with a rare genital malformation as an example for orphan diseases.

Simoes E, Kronenthaler A, Emrich C, Rieger MA, Rall KK, Schäffeler N, Hiltner H, Ueding E, Brucker SY - Biomed Res Int (2014)

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Centre of Women's Health, University Hospital Tuebingen, 72076 Tuebingen, Germany ; Women's Health Research Institute, 72076 Tuebingen, Germany ; Social Medicine Staff Unit, University Hospital Tuebingen, 72076 Tuebingen, Germany.

ABSTRACT
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.

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Related in: MedlinePlus

Phases of the study, overall view.
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fig1: Phases of the study, overall view.

Mentions: The study will consist of five phases: the first phase is dedicated to the search and appraisal of available knowledge and experience, the second assesses patients' and partners needs and experiences, and the third and fifth phases address persons involved in health care and (psycho-)social support for the target patient group and further interested parties. This triangulation will provide different perspectives to enhance validity. During the fourth phase, all results gathered will be used to construct scenarios for an improved provisional model (templates for centre and network), which, in the last phase, in a reflection loop, will be subject to final communicative validation (see below) and preference finding (Figure 1).


Development of a provisional model to improve transitional care for female adolescents with a rare genital malformation as an example for orphan diseases.

Simoes E, Kronenthaler A, Emrich C, Rieger MA, Rall KK, Schäffeler N, Hiltner H, Ueding E, Brucker SY - Biomed Res Int (2014)

Phases of the study, overall view.
© Copyright Policy - open-access
Related In: Results  -  Collection

Show All Figures
getmorefigures.php?uid=PMC4269155&req=5

fig1: Phases of the study, overall view.
Mentions: The study will consist of five phases: the first phase is dedicated to the search and appraisal of available knowledge and experience, the second assesses patients' and partners needs and experiences, and the third and fifth phases address persons involved in health care and (psycho-)social support for the target patient group and further interested parties. This triangulation will provide different perspectives to enhance validity. During the fourth phase, all results gathered will be used to construct scenarios for an improved provisional model (templates for centre and network), which, in the last phase, in a reflection loop, will be subject to final communicative validation (see below) and preference finding (Figure 1).

Bottom Line: 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.

View Article: PubMed Central - PubMed

Affiliation: Centre of Women's Health, University Hospital Tuebingen, 72076 Tuebingen, Germany ; Women's Health Research Institute, 72076 Tuebingen, Germany ; Social Medicine Staff Unit, University Hospital Tuebingen, 72076 Tuebingen, Germany.

ABSTRACT
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.

Show MeSH
Related in: MedlinePlus