MP44-04 IDENTIFYING PATHWAY DELAYS AND PATIENT NEEDS TO OPTIMIZE THE MANAGEMENT OF MEN WITH ADULT KLINFELTER SYNDROME

Abstract

INTRODUCTION AND OBJECTIVE: Men with Klinefelter Syndrome (KS) often present with infertility. However, the optimal management of this condition can involve many different specialties. Unfortunately, this often results in major gaps and delays to the patient pathway, often with a lack of coordination in areas such as genetic & psychosexual counselling. Based on this, a national survey was carried out to assess the needs of adult Klinefelter Syndrome patients with the aim of setting up a one-stop multidisciplinary team (MDT) clinic model for KS. METHODS: Men with KS over age 18 who were members of the Klinefelter Association of the UK as well as current KS patients in three large teaching hospitals were invited to participate in the study. A detailed, anonymised online questionnaire was used to collect data on initial presentation, delays and gaps in management and outcomes. Separately, an expert panel involving 7 specialties (Urology, Endocrinology, Genetics, Radiology, Reproductive Medicine, Embryology, Psychosexual Medicine), patient representatives and allied specialties (pharmacy & nursing) was set up to identify the feasibility and benefits of an MDT clinic. Ethics approval was obtained from our local NHS board. RESULTS: 92 patients in total completed the online questionnaire. 65% presented with infertility. Almost half had noticed signs of KS by the age of 16 but the median age of diagnosis was 26-30 with more than 20% diagnosed after 35. 45% waited a year or more in primary care before eventually being referred to a urologist, with definitive fertility management starting 1-2 years after. Only 39% had formal genetic counselling, and 35% had no long-term endocrine input. Although 87% were aware of surgical sperm retrieval, only 30% were offered MicroTESE. 89% felt they would have benefited from seeing an endocrinologist (and 61% for psychology) at diagnosis, with 86% strongly supporting an MDT clinic approach. The MDT clinic would also decrease visits, ensure a standard of care and potentially reduce delays to definitive fertility management from 18 to 3 months. CONCLUSIONS: The valuable information gathered about the delays and issues faced by adult men with Klinefelter Syndrome have led to the setting up of a one-stop MDT clinic encompassing 7 specialties with pharmacy & patient liaison services. The clinic itself and its positive clinician and patient feedback are presented separately. The need for more awareness of KS in the community remains a widespread issue. Source of Funding: None