A self-guided curriculum on endocrinology standard of care for gender diverse youth, including ethical considerations.

Objective: While the field of pediatric endocrinology, and the American Board of Pediatrics, continues expanding training to include gender-affirming care, many pediatric endocrinology fellowship programs do not have formal curriculum for this patient population. Members of the Pediatric Endocrine Society (PES) that have a special interest in transgender health designed a curriculum based on Endocrine Society practice guidelines to expand the knowledge of gender affirming care for medical trainees' and faculty. Methods: PES members designed a 5-part self-guided educational module series with embedded knowledge questions. Uniquely, medical ethical reflections were included within each module. Participants completed baseline demographic and baseline and follow-up knowledge surveys. Results: Most participants were pediatric endocrinology fellows and 44 % percent (n = 21) completed all study components, including the follow up knowledge survey. Knowledge question data analysis demonstrated knowledge gained in medical management of pubertal youth and surgical interventions. Conclusion: This is the first medical education curriculum in gender-affirming care created by pediatric endocrinologists grounded in the Endocrine Society practice guidelines. This study demonstrates medical knowledge gained in caring for gender diverse youth and is the first to incorporate ethical considerations for this patient population. While initially designed for pediatric endocrinology trainees and faculty, this curriculum may be of great utility for any provider interested in caring for gender diverse youth.

Designing and implementing an outpatient management pathway for patients with newly diagnosed insulin-dependent diabetes mellitus.

OBJECTIVE: Recently, our team transitioned to an outpatient diabetes education model for patients with newly diagnosed insulin-dependent diabetes mellitus (IDDM) after concerns arose regarding inconsistent education provided in the hospital, as well as additional emotional stress attributed to hospitalization. To optimize this model, an improvement initiative was implemented to redesign the outpatient care processes, refine patient education content and identify ideal educational strategies. Specific aims were to (a) achieve family self-management, (b) reduce stress and (c) ensure family and provider satisfaction with the outpatient pathway. RESEARCH DESIGN AND METHODS: Using a multidisciplinary team and formal quality improvement (QI) methods, we redesigned content and format of the pathway based on results from key measures and Plan-Do-Study-Act (PDSA) cycles. Primary outcome measures included self-efficacy, stress and satisfaction. RESULTS: We achieved our goal self-management skills, while maintaining high satisfaction for patients and providers throughout the implementation and refinement of the pathway. Key pathway components include refined education content, interactive educational tools and close collaboration with social work. Multiple PDSA cycles and pathway modifications were completed, including early social work involvement and simplification of education resources; however, we found modifying the stress experienced by parents to be a challenge. The majority of the stress relates to factors that are difficult to modify, specifically emotional burden and interpersonal distress, and is rarely attributed to regimen- or physician-related distress. CONCLUSION: During the transition to an outpatient pathway, we achieved our satisfaction and self-management goals but were unsuccessful in achieving our goals for minimizing stress associated with a new diagnosis of a chronic illness.

Short Stature Homeobox-Containing Haploinsufficiency in Seven Siblings with Short Stature.

Deficiency of the short stature homeobox-containing (SHOX) gene is a frequent cause of short stature in children (2-15%). Here, we report 7 siblings with SHOX deficiency due to a point mutation in the SHOX gene. Index case was a 3-year-old male who presented for evaluation of short stature. His past medical history and birth history were unremarkable. Family history was notable for multiple individuals with short stature. Physical exam revealed short stature, with height standard deviation score (SDS) of -2.98, as well as arm span 3 cm less than his height. His laboratory workup was noncontributory for common etiologies of short stature. Due to significant familial short stature and shortened arm span, SHOX gene analysis was performed and revealed patient is heterozygous for a novel SHOX gene mutation at nucleotide position c.582. This mutation is predicted to cause termination of the SHOX protein at codon 194, effectively causing haploinsufficiency. Six out of nine other siblings were later found to also be heterozygous for the same mutation. Growth hormone was initiated in all seven siblings upon diagnosis and they have demonstrated improved height SDS.