Meet Professor Susan Webb, expert on pituitary disease & ECE 2019 award lecturer
Meet Professor Susan Webb, who has been awarded the 2019 Clinical Endocrinology Trust Award. She is head of the neuroendocrinology clinic at Sant Pau Hospital in Barcelona and leader of a clinical research group on pituitary diseases at Autonomous University of Barcelona. Her research focuses on persistent morbidity in endocrinologically “cured” patients, and patient perception of having been diagnosed with pituitary disease, and she will be delivering her Award Lecture at ECE 2019, 18-21 May in Lyon.
Tell us about your career in endocrinology?
In 1975 I finished medical school in Barcelona and decided to specialise in endocrinology, a subject I find truly fascinating and wonderfully challenging. After finishing my endocrinology training in 1979, I spent a year at St Bartholomew’s Hospital in London under Professor Michael Besser and worked in closely with Professor John Wass, who I’ve remained friends with. I then returned to Barcelona and spent a year doing basic research. Since 1982 I have been in my current hospital, the San Pau hospital in Barcelona, where I now run the neuroendocrinology clinic and conduct neuroendocrine research on pituitary disease.
My research has always been patient orientated and aims to look at persistent health problems in so-called endocrinologically “cured” subjects, and how patients perceive their disease and its consequences. Apart from diagnosing and treating patients, I think it’s incredibly important to understand the patient’s point of view because they don’t always coincide with that of the health care provider. If we are aware of the patient’s problems we can try to improve their quality of life.
What are you presenting at ECE 2019?
A background to my work on the importance of asking patients how they perceive their disease. Back in 1999 I was attending a consensus meeting on acromegaly that concluded that we should take our patient’s point of view and quality of life into consideration; however, at that time there was no disease-specific questionnaire to evaluate this. I knew an expert in health outcomes research and we developed a quality of life questionnaire for patients with acromegaly (AcroQol) that was published in 2002. A few years later we also developed one for Cushing’s syndrome (CushingQoL). Both questionnaires have been rather successful and are included in many clinical trials where a new drug is being used, or in studies looking at the impact of the disease on the patients.
I will be talking about how the questionnaires have raised interest in patient orientated aspects of diseases, and how they have made us realise that despite “curing” our patients, they are often still not what one would consider healthy. By asking questions we have become more aware of morbidities patients suffer with. How patients feel is something that we should always consider if we want to optimise their therapies, and helping patients to overcome or adapt to changes caused by their disease will help them live happier lives.
What has been your most surprising finding?
Our research has really shown us how blind we were to many things that patients really care about. For the patient, whether their hormone levels go up and down is secondary, what they are really interested in is feeling well.
What are you looking forward to at ECE 2019 and what would you recommend to other delegates?
ECE is the conference that I always look forward to attending. It’s a great place to meet up with colleagues and to hear about new research. Be prepared, as ECE has a busy programme with lots of different sessions. Apart from hearing about new science, it’s a great opportunity to meet up with delegates you want to engage with, to discuss ideas and research.
What has been your proudest professional experience so far?
It’s so enriching that we can now get the patient perspective on their disease. Having contributed to this process with the quality of life questionnaires, as well as learning and listening to patients on how their disease has affected them, has been very enlightening. I am also immensely proud of helping to set up and coordinate the European Registry on Cushing's syndrome (ERCUSYN), which is now owned by ESE. The registry includes over 1600 patients and has allowed us to learn so much about the disease.
What do you think are the biggest challenges in your research area right now?
Once a patient is referred to an endocrinologist they usually have had symptoms of a disease for months or even years. This is especially true in patients suffering from pituitary diseases. A definite challenge is to make earlier diagnoses for these patients, especially as we now know that exposure to hormone dysregulation for a long time causes considerable problems in the long term. This can be achieved by increasing the awareness of symptoms associated with these rare endocrine diseases in primary care.
What do you think will be the next major breakthrough in your field?
In the last few years new drugs and neurosurgical techniques have been helping to treat patients but we still haven’t solved everything. I hope the next breakthroughs will be in oral drugs that are more easily accessible and affordable for patients.
Any words of wisdom for young endocrinologists attending ECE 2019?
See endocrinology for the fascinating subject that it is! The first day I was doing an optional rotation in endocrinology I was confronted with a patient with complete pituitary function testing showing all of their hormone levels going up and down. At the time my colleagues all nodded, apparently knowing whether levels were normal or not. That really made me worry how I was ever going to learn about all these values. But endocrinology is really true physiology and being confronted with a patient with endocrine dysfunction, and working out what is going wrong is a wonderful and rewarding challenge.
Who do you admire most and why?
There have been several people who have been really important in my career but two people really stand out. Firstly, Professor John Wass, who helped me a lot when I was at St Bartholomew’s Hospital. Secondly, Professor Steven Lamberts, who was president of European Federation of Endocrine Societies before the European Society of Endocrinology was formed, and whose knowledge together with his sense of humour and ability to make firm decisions in a gentle way, made him a great role model.
You can hear Professor Susan Webb’s Clinical Endocrinology Trust Award Lecture, “How can patient’s perception of outcome be improved after controlling pituitary disease?” on Monday 20 May at 16:50. Find out more about the ECE 2019 scientific programme.