Introduction and Objectives

Following a prolonged and unstable diagnosis experience with Klinefelter Syndrome (KS), including missed opportunities for fertility counselling and a missed diagnosis of deep vein thrombosis, the patient, Raj Baksi, became an advocate for better diagnosis and care in KS. It was in his role as an advocate, and chair of the United Kingdom Klinefelter Association charity at the time, that he was approached by a group of clinicians interested in setting up a multidisciplinary team (MDT) for a more coordinated, evidence-based care of patients with KS. This patient perspective abstract explores his care during his KS diagnosis, its shortcomings and how he and the clinicians he worked with helped canvas opinion from other KS sufferers to improve patient and clinician engagement in KS care, which ultimately resulted in the setting up of an expert multidisciplinary clinic with a true patient focus.

Methods

In 2018, Raj Baksi joined a team of clinicians that included a urologist, reproductive medicine specialist, endocrinologist, geneticist and psychologists as part of a focus group to help develop a multidisciplinary clinic for patients with KS. Baksi had been a strong advocate for better KS care, and he recognized issues such as the need for personalized care—setting up referral only Facebook^® support groups nationally and internationally to ensure privacy for those wanting to discuss their condition (especially useful for considering the stigma of KS and infertility). Using access to his networks and with personal experiences of his own, he set up numerous advisory rounds prior to the clinic being set up in 2019.

Results

The national access KS MDT clinic started running in March 2019 and has now seen over 120 patients from across the UK. Baksi had emphasized the need for clear information sheets, clear decision pathways, signposting to fertility and psychosexual counseling, and access to a nurse practitioner, and helped spearhead more research into areas such as thromboembolism and COVID effects in KS. It remains consistently one of the highest patient- and clinician-rated clinics in the Trust and continues to have Baksi as a patient liaison in clinic. Waiting times to see the clinicians have reduced significantly (by 16 months), and improvements in outcomes such as surgical sperm retrieval have been made.

Conclusions

Raj Baksi’s invaluable input in the introduction of the MDT KS clinic approach has had a significant benefit in patients’ involvement of care, advising patients of services that can aid them holistically and patients’ fertility and health outcomes. Baksi continues to be closely involved in supporting KS patients in the clinic.