Deciding where to focus research efforts for health conditions and their treatment is an important part of conducting new research. One challenge of this is that the priorities for what research to carry out do not always align with the needs and priorities of patients.
In 2023, we shared an opportunity to be involved in research aimed at setting out future priorities for pituitary adenoma surgery. We are now happy to say that this research has been completed and the findings are ready to share with the community! We want to thank anyone who put themselves forward to be involved in this research; the findings will surely be of great importance in helping to address patient priorities and improve outcomes in the future.
Research overview and findings
A number of years ago, a group of researchers came together to carry out an international study called PitCOP (Pituitary Surgery Core Outcomes and Priorities). This study aimed to establish what the top 10 priorities should be for research around pituitary adenoma surgery. This study actively sought to include input from patients and healthcare workers, to ensure that the findings represent researchers and clinicians, as well as the patient community that they seek to support.
The study was led by:
- Hani Marcus, Consultant Neurosurgeon at University College London Hospitals (UCLH) and University College London (UCL)
- Angelos Kolias, Consultant Neurosurgeon at the University of Cambridge and Cambridge University Hospitals
- Stephanie Baldeweg, Consultant Endocrinologist at UCLH and UCL, Chair of our Medical Committee and member of our board of trustees
The researchers collected over 300 responses from people affected by pituitary tumours and healthcare professionals across 17 countries. The key themes emerging from the research include:
- Improving diagnosis and management to avoid delays
- Advancing surgical techniques and technologies
- Improving patient support and follow-up
- Optimising the prediction of outcomes and complications
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. I am convinced that our study will lead to more patient centred pituitary research. – Prof Stephanie Baldeweg
To know more, you can read the full research article. The researchers also created a visual infographic that outlines the key findings from the research and how they relate to each stage of the patient journey, from pre-surgery through to post-op and long-term endocrine management. You can view this below.
