Researchers from Cambridge and London have completed a study that is a world first of its kind and gives patients an important voice on future priorities.
It was led by Angelos Kolias, Consultant Neurosurgeon at the University of Cambridge and Cambridge University Hospitals, and Hani Marcus, Consultant Neurosurgeon from University College London. They worked jointly with Consultant Endocrinologist, Professor Stephanie Baldeweg from University College London and Mark Gurnell, Professor of Endocrinology at the University of Cambridge.
They reached out to more than 155 patients, carers and healthcare professionals across 14 countries to identify their top 10 questions for researchers going forwards.
Key themes to emerge were diagnosis and management to avoid delays, advancing surgical techniques and technologies, patient support and follow-up, and prediction of outcomes and complications.
Findings from the Pituitary Surgery Core Outcomes and Priorities (PitCOP) study, which ran over five stages between March 2023 and July last year, have just been published on the academic platform Springer Nature (opens in a new tab).
Such studies bring together patients, caregivers, and healthcare professionals to identify and prioritise the research that matters most and aligns interests and objectives of all parties. They also act as a call to action to funders.
To date, there have been several research priority studies covering neurosurgical disease areas, but no studies focusing on the research priorities for pituitary surgery.
It was supported by the University of Cambridge, Cambridge University Hospitals, National Brain Appeal, Wellcome / EPSRC Centre for Interventional and Surgical Sciences, University College London, Pituitary Foundation, and Pituitary Society.
Pituitary adenomas are benign tumours of the pituitary gland, a small gland at the base of the brain. They affect approximately one in 1000 people and can cause a variety of symptoms due to pressure on the eyesight nerves or the pituitary gland. They can cause significant morbidity and even mortality if not treated in time.
Some adenomas may produce excessive levels of a pituitary hormone leading to conditions such as Cushing's syndrome, a condition caused by having too much of a hormone called cortisol, leading to more fat on the chest, stomach, neck or shoulders. The face may be red and puffy. It can also cause acromegaly, which is abnormal growth of the hands, feet, and face.
Surgery, typically undertaken through the nostrils, is the preferred treatment option for most patients.
Mr Kolias said:
We are immensely grateful to all patients who participated in the PitCOP study. The outcomes of pituitary surgery are very good, but we always strive to improve.
The participation of patients was critical, as it enabled us to also look outside the operating room. We are hoping that funding agencies will respond appropriately to this call for action.
Mr Angelos Kolias
Mr Marcus said:
The findings of the PitCOP study underscore the importance of involving patients directly in shaping the future of pituitary adenoma surgery. By prioritising research that reflects patient needs, we can ensure we are ultimately improving the most relevant outcomes for those affected by these complex conditions
Mr Hani Marcus
Professor Baldeweg added:
We are very proud of having completed the first ever international study on setting research priorities in pituitary surgery. In my role as Consultant Endocrinologist and as a trustee and chair of clinical committee of The Pituitary Foundation, the UK national pituitary charity, I am acutely aware that we can achieve most when patients and clinicians work closely together. This study should lead to more patient centred pituitary research.
Professor Stephanie Baldeweg
Professor Gurnell said:
In the last few years, we have developed cutting edge technologies - and are already working with patients, but the priority setting will enable us to systematically integrate the questions of patients in future research projects.
Professor Mark Gurnell
The top 10 questions, in detail, for researchers are:
- What is the impact of pituitary surgery on the long-term endocrine function and quality of life? (the endocrine system is in charge of creating and releasing hormones to maintain countless bodily functions)
- How can clinical, biochemical, histological, and radiological data, along with new molecular profiling methods, be used to better predict long-term outcomes and guide the management of pituitary adenomas after surgery?
- What are the causes of delayed diagnosis for patients with pituitary adenomas, and how can we address these factors to enhance prompt diagnosis and treatment
- How can new surgical techniques and technologies, such as advanced imaging, robotics, and artificial intelligence, improve outcomes in pituitary surgery?
- What information and support, both psychological and physical, do patients and carers need during the patient journey, and can this improve outcomes after pituitary surgery
- How does surgical expertise, including number of operations, multidisciplinary team experience, and improved diagnostic access, affect the management and outcomes?
- How do pituitary adenomas affect cognition and mental health, and what are the best ways to support patients in addressing these issues?
- What is the natural history of incidentally discovered pituitary adenomas, and which ophthalmic, biochemical, and radiological factors are important in determining the need for surgery?
- How can we predict early inpatient complications, such as sodium disturbances, after pituitary surgery, and can these be better managed or even prevented with empirical therapy?
- How can we optimise ophthalmic, biochemical, and radiological follow-up for patients after pituitary surgery?
Note to Editors:
The Cambridge Pituitary Unit comprises 15 Consultants based in Addenbrooke's Hospital: three Neurosurgeons (Richard Mannion, Thomas Santarius, Angelos Kolias), four ENT surgeons (Neil Donnelly, James Tysome, Rishi Sharma, Daniele Borsetto), three endocrinologists (Mark Gurnell, Andrew Powlson, Ruth Ronneberger), two neuro-ophthalmologists (Brinda Muthusamy, Patrick Yu Wai Man), two neuro-radiologists (Daniel Scoffings, Jonathan Jones) and one oncologist (Sarah Jefferies). The Unit is supported by a large number of specialist nurses, nurse practitioners, orthoptists, trainee doctors, and Cambridge University researchers. It works closely with endocrinologists, ophthalmologists and neurologists based at hospitals in the East of England region to serve a population of around five million.
The Pituitary and Central Skull Base Unit at UCLH is a clinical and academic unit within the department of neurosurgery at the UCLH National Hospital for Neurology and Neurosurgery and UCL Queen Square Institute of Neurology.
Its approach is interdisciplinary with neurosurgeons Mr Hani Marcus, Mr Neil Dorward, Ms Anouk Borg, and several neuroendocrinologists led by Professor Stephanie Baldeweg, as well as neuroophthalmologists, neuroradiologists,