Evidence map›Paper›PMID 35761280›Full record

ArticleBMC endocrine disorders2022

Development and evaluation of a patient education programme for children, adolescents, and young adults with differences of sex development (DSD) and their parents: study protocol of Empower-DSD.

Sabine Wiegmann, Martina Ernst, Loretta Ihme, Katja Wechsung, Ute Kalender, Barbara Stöckigt, Annette Richter-Unruh, Sander Vögler, Olaf Hiort, Martina Jürgensen and 17 more

Open access · goldAbstract read
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In one paragraph

Article in BMC endocrine disorders, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
1.6field-weighted citation impact, top 17% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed, 19 citations in OpenAlex.

  1. Trial
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  8. Long-term outcomes in non-CAH 46,XX DSD.Frontiers in endocrinology · 2024
    Review
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

27 authors at 8 institutions in 1 country.

Sabine WiegmannCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, and Berlin Institut of Health, SPZ Interdisziplinär, Kinderendokrinologie und -diabetologie, Augustenburger Platz 1, 13353, Berlin, Germany. sabine.wiegmann@charite.de.ORCID http://orcid.org/0000-0002-2668-4581
Martina ErnstCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, and Berlin Institut of Health, SPZ Interdisziplinär, Kinderendokrinologie und -diabetologie, Augustenburger Platz 1, 13353, Berlin, Germany.
Loretta IhmeCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, and Berlin Institut of Health, SPZ Interdisziplinär, Kinderendokrinologie und -diabetologie, Augustenburger Platz 1, 13353, Berlin, Germany.
Katja WechsungCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, and Berlin Institut of Health, SPZ Interdisziplinär, Kinderendokrinologie und -diabetologie, Augustenburger Platz 1, 13353, Berlin, Germany.
Ute KalenderCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Social Medicine, Epidemiology and Health Economics, Berlin, Germany.
Barbara StöckigtCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Social Medicine, Epidemiology and Health Economics, Berlin, Germany.
Annette Richter-UnruhPediatric Endocrinology & Diabetology, St. Josefs Hospital, Ruhr-University Bochum, Bochum, Germany.
Sander VöglerPediatric Endocrinology & Diabetology, St. Josefs Hospital, Ruhr-University Bochum, Bochum, Germany.
Olaf HiortDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Martina JürgensenDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Louise MarshallDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Ingo MenrathDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Julia SchneidewindDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Isabel WagnerDivision of Paediatric Endocrinology and Diabetes, Department of Paediatrics and Adolescent Medicine, University of Lübeck, Lübeck, Germany.
Julia RohayemCentre for Reproductive Medicine and Andrology, Clinical and Operative Andrology, University Hospital Münster, Münster, Germany.
Klaus-Peter LiesenkötterEndokrinologikum Berlin, Center for Hormonal and Metabolic Disorders, Berlin, Germany.
Martin WabitschUniversitätsklinikum Ulm, Klinik für Kinder- und Jugendmedizin, Sektion Pädiatrische Endokrinologie und Diabetologie, Hormonzentrum für Kinder und Jugendliche, Ulm, Germany.
Malaika FuchsUniversitätsklinikum Ulm, Klinik für Kinder- und Jugendmedizin, Sektion Pädiatrische Endokrinologie und Diabetologie, Hormonzentrum für Kinder und Jugendliche, Ulm, Germany.
Gloria HerrmannUniversitätsklinikum Ulm, Klinik für Kinder- und Jugendmedizin, Sektion Pädiatrische Endokrinologie und Diabetologie, Hormonzentrum für Kinder und Jugendliche, Ulm, Germany.
Henriette LutterUniversitätsklinikum Ulm, Klinik für Kinder- und Jugendmedizin, Sektion Pädiatrische Endokrinologie und Diabetologie, Hormonzentrum für Kinder und Jugendliche, Ulm, Germany.
Gundula ErnstDepartment of Medical Psychology, Hannover Medical School, Hannover, Germany.
Christine LehmannFörderkreis Schulung chronisch kranker Kinder und Jugendlicher e.V., Berlin, Germany.
Martina HaaseInstitute of Clinical Epidemiology and Biometry, Würzburg University, Würzburg, Germany.
Stephanie RollCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Social Medicine, Epidemiology and Health Economics, Berlin, Germany.
Ralph SchillingCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Social Medicine, Epidemiology and Health Economics, Berlin, Germany.
Thomas KeilCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Institute of Social Medicine, Epidemiology and Health Economics, Berlin, Germany.
Uta NeumannCharité - Universitätsmedizin Berlin, corporate member of Freie Universität Berlin and Humboldt Universität zu Berlin, and Berlin Institut of Health, SPZ Interdisziplinär, Kinderendokrinologie und -diabetologie, Augustenburger Platz 1, 13353, Berlin, Germany.
Humboldt-Universität zu Berlin · DEUniversity of Lübeck · DEKlinik und Poliklinik für Kinder- und Jugendmedizin · DESt. Josefs Hospital · DEUniversity of Würzburg · DEEndokrinologikum · DEMedizinische Hochschule Hannover · DEUniversity Hospital Münster · DE

Funding

G-BA Innovationsfonds (DE) 01VSF18022
6 · The paper itself

Abstract

backgroundDifferences in sexual development (DSD) are rare diseases, which affect the chromosomal, anatomical or gonadal sex differentiation. Although patient education is recommended as essential in a holistic care approach, standardised programmes are still lacking. The present protocol describes the aims, study design and methods of the Empower-DSD project, which developed an age-adapted multidisciplinary education programme to improve the diagnosis-specific knowledge, skills and empowerment of patients and their parents.

methodsThe new patient education programme was developed for children, adolescents and young adults with congenital adrenal hyperplasia, Turner syndrome, Klinefelter syndrome or XX-/or XY-DSD and their parents. The quantitative and qualitative evaluation methods include standardised questionnaires, semi-structured interviews, and participatory observation. The main outcomes (assessed three and six months after the end of the programme) are health-related quality of life, disease burden, coping, and diagnosis-specific knowledge. The qualitative evaluation examines individual expectations and perceptions of the programme. The results of the quantitative and qualitative evaluation will be triangulated. DISCUSSION: The study Empower-DSD was designed to reduce knowledge gaps regarding the feasibility, acceptance and effects of standardised patient education programmes for children and youth with DSD and their parents. A modular structured patient education programme with four generic and three diagnosis-specific modules based on the ModuS concept previously established for other chronic diseases was developed. The topics, learning objectives and recommended teaching methods are summarised in the structured curricula, one for each diagnosis and age group. At five study centres, 56 trainers were qualified for the implementation of the training programmes. A total of 336 subjects have been already enrolled in the study. The recruitment will go on until August 2022, the last follow-up survey is scheduled for February 2023. The results will help improve multidisciplinary and integrated care for children and youth with DSD and their families.

trial registrationGerman Clinical Trials Register, DRKS00023096 . Registered 8 October 2020 - Retrospectively registered.

Indexed as

Patient Education as TopicQuality of LifeAdolescentChildHumansParentsSexual DevelopmentSurveys and QuestionnairesYoung AdultAdolescentsChildrenDifferences of sexual developmentDSDEmpowermentModular educationParentsPatient educationTraining

Identifiers

PMID35761280
PMCPMC9235086
OpenAlexW4283709009

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.