Background: Anecdotal evidence suggests that access to surgical care for primary hyperparathyroidism (PHPT) varies significantly across the UK.
Method: A web-based survey was emailed to all members of Parathyroid UK patients group.
Results: Replies were received from 119 patients (108F: 11M, median age 57) who have had a diagnosis of PHPT for a median for 5 years (3 months10 years). Majority were diagnosed by their GP (63%) and 64% were initially offered no active treatment. 76% of respondents already had parathyroid surgery after a median of 2 years (range 6 monthsover 5 years) after diagnosis. Vast majority (81%) described symptomatic improvement after parathyroidectomy but 32 patients reported unfavourable outcomes: failure to cure (n=5), anxiety/low mood (n=3), voice changes, hypocalcaemia, bone pain and muscle spasms, fatigue (n=2). Overall 84% of respondents would recommend surgery to another patient. 41 respondents didnt have parathyroid surgery either because they were still deciding (n=9), or as a result of advice form their own GP/Specialist (n=15) or their own decision (n=4) or because they were on a waiting list (n=13). The median Pasiekas Parathyroid Symptom Score did not differ between these subgroups. Responders made the following suggestions for improvements to current service provision: increasing the educational awareness for GPs and endocrine specialists on the diagnosis of PHPT, implementing a better communication system for patients to liaise with specialists regarding questions and worries they may have, increasing awareness of management of patients with normocalcaemic PHPT and increasing the availability of after-surgery care for patients.
Conclusion: Based on comments from a self-selected group of patients motivated to join a patients support group, there is evidence that the current provision of care for PHPT needs to be improved. Recent NICE guidelines should facilitate this process but the responsibility has to be shared by all care providers.