Centres of excellence in parathyroid surgery Survey

What should be expected from a centre of excellence in parathyroid surgery ?

I would be very grateful if you can respond to the following questions based on your personal journey from reaching a diagnosis to having treatment for primary hyperparathyroidism (PHPT).

In an effort to improve the delivery of surgical care for primary hyperparathyroidism, there is a debate about criteria that would define a centre of excellence. No such centres have been recognised so far as there is no mechanism in place for such a process.

The following questions explore the views of patients affected by this condition. The aim is to reach patients from many countries - please forward a link to this survey to anybody else you know to be suffering form this condition.

A summary of the information collected will be discussed with members of the European Society of Endocrine Surgeons during the plenary meeting in May 2024.

1.Please name the country where you live

2.Please name the patients’ group to whom you belong (if any)

4.Please choose what would describe best your current situation

I was diagnosed with PHPT, I had an operation and I was cured

I was diagnosed with PHPT, I had an operation but have persistent disease

I was diagnosed with PHPT and I am awaiting to have an operation

I was diagnosed with PHPT but I am yet to have a management plan

I think I have normocalcaemic hyperparathyroidism and I am yet to be offered treatment

Other (please specify)

5.In your experience with this condition, your decisions have been based primarily on

· Information from the doctors

· Information found online (e.g. google search)

· Advice from patients’ groups

Other (please specify)

6.BEFORE having parathyroid surgery, what factors are important ?

Possibility to choose the surgeon who will do my operation

Easy access to information about the annual workload of the surgeon who performs my operation

Published data regarding the success rate for cure after the operation for the surgeon who performs my operation

Other (please specify)

7.What you believe to be the most important role of such a centre of excellence?

Ensure a rapid diagnostic pathway

Provide a short waiting time before surgery

Demonstrate high success rate in operations for PHPT

Other (please specify)

8.In an ideal world, centres of excellence should treat

Only complex patients with familial disease

All patients who failed previous parathyroid surgery

All patients

Other (please specify)

9.From your personal perspective, what would be important for a surgeon working in a centre of excellence

a high-volume practice

involvement in clinical research

record of publications in peer-reviewed journals

a multidisciplinary environment with endocrinologists, radiologists and pathologists

Other (please specify)

None of the above

10.I expect that the surgeon who operates me should perform each year at least

10 cases

20 cases

50 cases

I have no view on this topic

11.What you consider to be the most important changes/improvements that should be made to the care of patients with primary hyperparathyroidism ?

12.Please use this section to leave any comments/views about surgery for primary hyperparathyroidism