TY - JOUR
T1 - Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE)
AU - Thyen, Ute
AU - Ittermann, Till
AU - Flessa, Steffen
AU - Muehlan, Holger
AU - Birnbaum, Wiebke
AU - Rapp, Marion
AU - Marshall, Louise
AU - Szarras-Capnik, Maria
AU - Bouvattier, Claire
AU - Kreukels, Baudewijntje P.C.
AU - Nordenstroem, Anna
AU - Roehle, Robert
AU - Koehler, Birgit
PY - 2018/7/5
Y1 - 2018/7/5
N2 - © 2018 The Author(s). 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.
AB - © 2018 The Author(s). 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.
KW - Disorders/differences of sex development
KW - Multidisciplinary care
KW - Patient satisfaction
UR - http://www.scopus.com/inward/record.url?scp=85049561873&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s12913-018-3342-0
DO - https://doi.org/10.1186/s12913-018-3342-0
M3 - Article
C2 - 29976186
SN - 1472-6963
VL - 18
JO - BMC Health Services Research
JF - BMC Health Services Research
IS - 1
ER -