Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE)
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).
| Medienart: |
E-Artikel |
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| Erscheinungsjahr: |
2018 |
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| Erschienen: |
2018 |
| Enthalten in: |
Zur Gesamtaufnahme - volume:18 |
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| Enthalten in: |
BMC health services research - 18(2018), 1 vom: 05. Juli, Seite 527 |
| Sprache: |
Englisch |
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| Beteiligte Personen: |
Thyen, Ute [VerfasserIn] |
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| Links: |
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| Themen: |
Comparative Study |
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| Anmerkungen: |
Date Completed 11.12.2018 Date Revised 26.04.2024 published: Electronic Citation Status MEDLINE |
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| doi: |
10.1186/s12913-018-3342-0 |
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| funding: |
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| Förderinstitution / Projekttitel: |
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| PPN (Katalog-ID): |
NLM286190117 |
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| 100 | 1 | |a Thyen, Ute |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE) |
| 264 | 1 | |c 2018 | |
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| 500 | |a Date Completed 11.12.2018 | ||
| 500 | |a Date Revised 26.04.2024 | ||
| 500 | |a published: Electronic | ||
| 500 | |a Citation Status MEDLINE | ||
| 520 | |a 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) | ||
| 520 | |a 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) | ||
| 520 | |a 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 | ||
| 520 | |a 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 | ||
| 520 | |a TRIAL REGISTRATION: German Clinical Trials Register: Registration identification number: DRKS00006072 , date of registration April 17th, 2014. DRKS00006072 (German Clinical Trials Register) | ||
| 650 | 4 | |a Comparative Study | |
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a Multicenter Study | |
| 650 | 4 | |a Research Support, Non-U.S. Gov't | |
| 650 | 4 | |a Disorders/differences of sex development | |
| 650 | 4 | |a Multidisciplinary care | |
| 650 | 4 | |a Patient satisfaction | |
| 700 | 1 | |a Ittermann, Till |e verfasserin |4 aut | |
| 700 | 1 | |a Flessa, Steffen |e verfasserin |4 aut | |
| 700 | 1 | |a Muehlan, Holger |e verfasserin |4 aut | |
| 700 | 1 | |a Birnbaum, Wiebke |e verfasserin |4 aut | |
| 700 | 1 | |a Rapp, Marion |e verfasserin |4 aut | |
| 700 | 1 | |a Marshall, Louise |e verfasserin |4 aut | |
| 700 | 1 | |a Szarras-Capnik, Maria |e verfasserin |4 aut | |
| 700 | 1 | |a Bouvattier, Claire |e verfasserin |4 aut | |
| 700 | 1 | |a Kreukels, Baudewijntje P C |e verfasserin |4 aut | |
| 700 | 1 | |a Nordenstroem, Anna |e verfasserin |4 aut | |
| 700 | 1 | |a Roehle, Robert |e verfasserin |4 aut | |
| 700 | 1 | |a Koehler, Birgit |e verfasserin |4 aut | |
| 700 | 0 | |a dsd-LIFE group |e verfasserin |4 aut | |
| 700 | 1 | |a Koehler, Birgit |e investigator |4 oth | |
| 700 | 1 | |a Cohen-Kettenis, Peggy |e investigator |4 oth | |
| 700 | 1 | |a de Vries, Annelou |e investigator |4 oth | |
| 700 | 1 | |a Arlt, Wiebke |e investigator |4 oth | |
| 700 | 1 | |a Wiesemann, Claudia |e investigator |4 oth | |
| 700 | 1 | |a Slowikowska-Hilczer, Jolanta |e investigator |4 oth | |
| 700 | 1 | |a de la Perriere, Aude Brac |e investigator |4 oth | |
| 700 | 1 | |a Sultan, Charles |e investigator |4 oth | |
| 700 | 1 | |a Paris, Francoise |e investigator |4 oth | |
| 700 | 1 | |a Bouvattier, Claire |e investigator |4 oth | |
| 700 | 1 | |a Thyen, Ute |e investigator |4 oth | |
| 700 | 1 | |a Reisch, Nicole |e investigator |4 oth | |
| 700 | 1 | |a Richter-Unruh, Annette |e investigator |4 oth | |
| 700 | 1 | |a der Grinten, Hedi Claahsen-van |e investigator |4 oth | |
| 700 | 1 | |a Nordenstrom, Anna |e investigator |4 oth | |
| 700 | 1 | |a Pienkowski, Catherine |e investigator |4 oth | |
| 700 | 1 | |a Szarras-Czapnik, Maria |e investigator |4 oth | |
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