The first year of a national-access adult Klinefelter's Syndrome multi-disciplinary team (KSMDT) clinic: patient and clinician reported outcomes

Abstract

ABSTRACT Introduction Klinefelter's syndrome is the most common chromosomal abnormality seen in men, affecting 1 in 650 men. It is a group of chromosomal disorders with at least one extra X chromosome (47, XXY) occurring due to non-disjunction at the time of gametogenesis. Most adult men are diagnosed at the time of fertility investigations. However, the syndrome has an array of clinical presentations which patients require input from numerous medical specialities during their lifetime. The setting up of a national-access Klinefelter Syndrome multidisciplinary clinic (KSMDT) approach comprising Urology, Endocrinology, Genetics, Reproductive medicine, Radiology, Psychosexual medicine, a specialist pharmacist as well as a patient representative has led to improvements in fertility and long- term management and waiting times. Here we describe the patient-reported outcomes and clinician perspectives of the clinic as it approached its 1st year. Method Between 2019 and 2020, 72 patients were seen in the adult KS MDT clinic. To assess the quality of care received in the clinic, an 8 -point feedback questionnaire was given to each patient attending the clinic to fill out at the end of the clinic. The form included a space for feedback for each speciality involved. The feedback forms were reviewed by 2 individual researchers and entries were assessed using an adapted Likert scale (0 – 5). Clinicians involved in the clinic were also encouraged to attend and rate the other specialties, the effectiveness of the pre and post clinic MDTs and to describe achievements derived from KSMDT clinic team-working. Results All the patients (n = 72) took the questionnaire reported that the clinic was beneficial to their understanding of KS & its management and had enough time during consultations. In terms of scoring 86% were very satisfied (score = 5) about genetic consultation compared to 92%, 82%, 82% and 88% in endocrine, fertility, psychosexual and urology consultation, respectively. Key factors influencing these positive results included the presence of an MDT, the access to a patient liaison and knowledge of support groups during the consult, digitized patient information sheets and a cohesive approach between endocrine and fertility teams. Clinician feedback was positive with all members agreeing that the pre and post clinic MDTs allowed effective pinpointing of often missed issues (e.g. hormone induction, social issues). Key milestones for the clinic included the reduction in waiting times by almost 80%, securing funding for costly hormone medication and assisted reproduction, improving sperm retrieval rates (from 11 – 29%) and a thrombo-embolism awareness programme. Conclusion The overall patient and clinician feedback for the adult KSMDT clinic was uniformly positive, with the multispecialty approach allowing communication with and between all relevant specialities on the same day, avoiding the need to come for multiple separate appointments across different sites (especially relevant during the COVID-19 era). The feedback has also been useful in developing patient information tools such as digital resources and has led to the development of a supportive community group for newly diagnosed KS men. More research is underway to investigate the complex issues affecting KS men long term, after fertility management. Disclosure Work supported by industry: no.