7816 Implementation And Evaluation Of Clinical Care Structures For People With Differences Of Sex Development (DSD) In Germany
Authors: Hiort S O , Schnoor M , Doehnert U , Juergensen M , Scherf J , Heidenreich A , Rapp M , Katalinic A 
Published: October 2024

Disclosure: S.O. Hiort: None. M. Schnoor: None. U. Doehnert: None. M. Juergensen: None. J. Scherf: None. A. Heidenreich: None. M. Rapp: None. A. Katalinic: None.

People with Differences of Sex Development (DSD) pose a challenge for healthcare. Lifelong holistic care requires a broad range of diagnostic approaches, qualified psychosocial, peer, fertility and sexual counselling, and structured therapeutic strategies including gonadal monitoring, hormone or surgical therapy. A quest has been taken to define centers of expertise for DSD and to substantiate and evaluate quality of care. Based on the criteria defined by the European Reference Network (ERN) for Rare Endocrine Conditions, 10 health care providers in Germany qualify for specialized DSD care. Quality indicators (QI) were developed through a Donabedian model to define structure, process and outcome quality mainly based on the German national guideline ”Differences of Sex Development”. Additionally, a consensus was reached though a structured process involving participating centers as well as patient organizations. Structural QIs are collected by an annual survey from the participating centers. Patient-related process and outcome data are recorded in a central registry. Patients and legal guardians receive questionnaires to collect patient-related outcome and experience measures after visits. These are measured by CHC-SUN/ YHC-SUN for treatment satisfaction and KIDDY KINDL, KIDSSCREEN 52, or WHOQOL-BREF for quality of life. An annual evaluation of all data results in a benchmarking of the participating centers. 24 indicators for structural quality were consented, 7 for process and 8 for outcome quality. Indicators of process quality comprise e.g. diagnostic procedures, case conferences, peer counseling or patient education. For structural quality there was an increase of centers fulfilling the QIs in 14 items including e.g. team composition and qualification during the study period from 2020 until 2022. Still very few centers had fixed standard operating procedures e.g. for gonadal monitoring or long-term follow up after surgery. 601 people with DSD were included into the registry from May 2021 until June 2023. In process quality there were considerable differences between centers both in QI compliance and data quality. The proportion of individuals with a genetic diagnosis varied by center from 44% to 96%. Information from questionnaires was available from 445 participants. Satisfaction with care was high. Parents reported in 86% to be very or highly satisfied with the visit, children and adolescents in 76%, and adults in 77%. Our approach allows for detailed evaluation of structural, process, and outcome quality. Health care insurers have secured appropriate funding for continuous evaluation of DSD care and the maintenance of the registry. This will allow for sustainability of the benchmarking and improvement of health care provision for people with DSD.

Presentation: 6/1/2024