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BMC Health Services Research
Published in: BMC Health Services Research 1/2018

Open Access 01-12-2018 | Research article

Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE)

Authors: Ute Thyen, Till Ittermann, Steffen Flessa, Holger Muehlan, Wiebke Birnbaum, Marion Rapp, Louise Marshall, Maria Szarras-Capnik, Claire Bouvattier, Baudewijntje P. C. Kreukels, Anna Nordenstroem, Robert Roehle, Birgit Koehler, on behalf of the dsd-LIFE group

Published in: BMC Health Services Research | Issue 1/2018

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Abstract

Background

To investigate the association between the structural quality of care and patient satisfaction with care in individuals with disorders/ differences of sex development (DSD).

Methods

A multicenter cross-sectional comparative study was conducted in 14 clinics in six European countries. We assessed the level of structural quality of care in each center using a self-constructed measure (Center Score) and the level of participant satisfaction with care using the customer satisfaction questionnaire (CSQ-4) and an adopted version of the Youth Health Care – Satisfaction, Utilization & Needs (YHC-SUN-SF). Data were obtained from individuals with Turner Syndrome (261), Klinefelter Syndrome (173), 46, XX congenital adrenal hyperplasia (190) and XY-DSD (257).

Results

We found large variations between the scores for structural quality of care both within a diagnostic group and within a country; the overall association between participant satisfaction with the center score was significant.

Conclusions

Comparative effectiveness research across Europe can lead to more insight on beneficial structures and processes and the overall strategy to care for people with rare diseases in general and specific conditions such as disorders/ differences of sex development. Appreciation of higher levels of structural quality of the centers in this study supports the concept of comprehensive care.

Trial registration

German Clinical Trials Register: Registration identification number: DRKS00006072, date of registration April 17th, 2014.
DRKS00006072 (German Clinical Trials Register).
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Metadata
Title
Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE)
Authors
Ute Thyen
Till Ittermann
Steffen Flessa
Holger Muehlan
Wiebke Birnbaum
Marion Rapp
Louise Marshall
Maria Szarras-Capnik
Claire Bouvattier
Baudewijntje P. C. Kreukels
Anna Nordenstroem
Robert Roehle
Birgit Koehler
on behalf of the dsd-LIFE group
Publication date
01-12-2018
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2018
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-018-3342-0

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