Endocrine Abstracts

Background: Lifelong surveillance should be offered to people with hereditary phaeochromocytoma and paraganglioma (PPGL), including asymptomatic carriers of pathogenic gene variants. Regular biochemical and radiological surveillance aims to improve disease detection and prognosis. During the COVID-19 pandemic, outpatient appointments were cancelled or postponed. Departments continue to face large backlogs of work. Clinicians in the USA reported 15% PPGL patients missing at least one element of their care. Anecdotally, in our centre, PPGL surveillance has been markedly disrupted.

Methods: We set up a twice-yearly multidisciplinary team (MDT) meeting, comprising consultants in Endocrinology and Clinical Genetics, specialist nurses, and trainees. At each meeting, the electronic records of PPGL patients are reviewed. We agree surveillance plans, based on consensus statements and assessment of individual risk. We assign ‘red’ surveillance status to those overdue investigations or follow-up, ‘amber’ to those awaiting results, and ‘green’ to those whose surveillance is up-to-date.

Results: Between meetings in November 2021 and June 2022, the PPGL cohort under our care increased from 30 to 34 patients. Of these, SDHB mutation carriers comprise the largest proportion. People with MEN are discussed in a separate MDT. The number of people up-to-date with surveillance increased from 60% to 65% between meetings. In November 2021, 23% were overdue surveillance; by June 2022, all of these bar one were up-to-date. 18% patients had ‘red’ status in June 2022, however, with the majority not offered appointments within the timeframe specified in their surveillance plan.

Conclusions: Coincident with service disruption, surveillance has been delayed for people with PPGL conditions. In our experience, MDT meetings have produced a small improvement in rates of patients up-to-date with care. A joint approach to surveillance planning is welcomed by the clinical team. Plans to run cohorted clinics and assess patient satisfaction will help to improve and refine service provision further.