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BMC Health Serv Res. 2018 Jul 5;18(1):527. doi: 10.1186/s12913-018-3342-0.

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

Author information

1
Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, 23538, Lubeck, Germany. ute.thyen@uksh.de.
2
Institute for Community Medicine - SHIP-KEF, Ernst-Moritz-Arndt University Greifswald, Walther-Rathenau-Str. 48, 17487, Greifswald, Germany.
3
Department of Health Care Management, University of Greifswald, 17487, Greifswald, Germany.
4
Institute of Psychology, Department Health & Prevention, Ernst-Moritz-Arndt University Greifswald, Robert-Blum-Str. 13, 17487, Greifswald, Germany.
5
Klinik fur Kinder- und Jugendmedizin, Sektion Padiatrische Endokrinologie, Universitat zu Lubeck, Ratzeburger Allee 160, 23538, Lubeck, Germany.
6
Klinik fur Kinder- und Jugendmedizin, Universitat zu Lubeck, Ratzeburger Allee 160, 23538, Lubeck, Germany.
7
Department of Endocrinology and Diabetology, Children's Memorial Health Institute, Warsaw, Poland.
8
Endocrinologie pediatrique, Centre de reference des maladies rares du developpement sexuel, Hopital Bicetre, Universite Paris-Sud, 78 rue du General Leclerc, 94270, Paris, Le Kremlin Bicetre, France.
9
Medische Psychologie en Medisch Maatschappelijk Werk, VU Medisch Centrum, PO Box 7057, 1007, MB, Amsterdam, the Netherlands.
10
Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, 171 76, Stockholm, Sweden.
11
Koordinierungszentrum fur Klinische Studien (KKS) Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universitat Berlin, Humboldt-Universität zu Berlin, Berlin, Germany.
12
Klinik für Padiatrische Endokrinologie und Diabetologie, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin, Germany.

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).

KEYWORDS:

Disorders/differences of sex development; Multidisciplinary care; Patient satisfaction

PMID:
29976186
PMCID:
PMC6034291
DOI:
10.1186/s12913-018-3342-0
[Indexed for MEDLINE]
Free PMC Article

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