49 Evaluation of a new multidisciplinary clinic for the endocrine assessment of patients with duchenne muscular dystrophy. (23rd February 2023)

• Record Type: Journal Article
• Authors: Malhotra, Neha; Sarkozy, Anna; Allgrove, Jeremy; Brain, Caroline; Manzur, Adnan; Chesover, Alexander
• Is Part Of: Archives of disease in childhood. Volume 108(2023)Supplement 1
• Page Start: A18
• Page End: A19
• Publication Date: 2023-02-23
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2023-gosh.49
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Introduction: An endocrine assessment is often necessary for children and young people with Duchenne muscular dystrophy (DMD).Metabolic Bone Clinic (MBC) referrals increased beyond capacity. A new patient pathway included referral criteria to a new Multidisciplinary Clinic (MDT). An outcome from the MDT included a telephone appointment to discuss initiating bisphosphonate treatment. We aimed to evaluate the new MDT, established to more effectively address these patients' needs. Methods: We identified children with DMD that attended the MDT and the MBC from September 2021 to September 2022 . Data were extracted prospectively from the electronic patient record. We primarily evaluated: (1) adherence to new referral pathway; (2) time from referral to assessment; and (3) MBC capacity. Results: 61 patients were seen in seven MDTs over one year: median 9 patients/clinic. New referrals totalled 51/61 (84%). The reason for referral aligned with the new pathway in 44/51 (86%); most frequently for bone mineral density deterioration (25/51; 49%) and asymptomatic vertebral fracture (15/51; 29%). 'Other' was the reason for referral for 12/51 (23%). MDT review was scheduled within a median of 4 weeks (range 0-15) from referral. Treatment was started in 16/61 (26%) patients, mostly Bisphosphonates (14/61; 23%). Of new referrals, 7/51 (14%) were referred to MBC; remainder were discharged to the Neuromuscular Clinic (24/51; 47%) or followed up in the MDT (20/51; 39%). 20 patients were seen in 15 MBCs over the same period, including two new referrals. Follow-up was requested for 6/20 (30%) and remainder were discharged (to MDT, Neuromuscular Clinic, or adult services). Conclusion: A new Multidisciplinary Clinic for the endocrine assessment of children with DMD successfully followed a new referral pathway, assessed patients within an acceptable timeframe, and increased Metabolic Bone Clinic capacity by creating 49 clinic slots since initiating the MDT.