Utilization of health care services and satisfaction with care in adults affected by XXXX ( @entity4998 ).

@entity1 @entity4998 @entity73 @entity1109 @entity74 @entity342 @entity774
BACKGROUND: @entity4998 ( @entity4998 ) are a heterogeneous group of rare @entity74 of sex determination or differentiation. Evidence-based guidelines concerning gender assignment and surgical and hormonal treatment are limited for many @entity4998 entities, and health care is highly fragmented across various sub-specialties and settings. A lack of informed consent, secrecy about the condition, shame, and @entity73 may affect satisfaction with care. OBJECTIVES: The main goal of this study was to describe satisfaction with care in individuals with @entity4998 and to identify factors associated with low satisfaction with care. METHODS/MAIN MEASURES: Using both biological (chromosomes) and social categories (sex of rearing), we classified @entity1 according to the nomenclature of the European Society for Pediatric Endocrinology/Lawson Wilkins Pediatric Endocrine Society (ESPE/LWPES) consensus statement. We used standardized measures to assess satisfaction with care (CSQ-8), health-related quality of life (SF-36), @entity1109 (BSI), and gender identity (FGI), in addition to self-constructed questionnaires probing experiences with health care and access to self-help groups. @entity1 : A total of 110 adults were recruited between January 2005 and December 2007 in four study centers in Germany, Austria, and German-speaking Switzerland. RESULTS: Reports of half the @entity1 scored below the cut-off indicating low quality of care. @entity1 with XX @entity4998 conditions and virilization (i.e., @entity774 ) reported the highest scores for satisfaction with care, and @entity1 with XY @entity4998 conditions and complete lack of @entity342 effects reported the lowest scores. Satisfaction with care was positively associated with indicators of psychological well-being. CONCLUSIONS: Satisfaction with care is lowest among @entity1 with the rarest conditions, highlighting the lack of evidence-based recommendations and the lack of coordination of care. Associations of satisfaction and well-being indicate the need to ensure access to mental health services.
