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.
Adrenal crisis is a life-threatening situation where a person’s cortisol level has significantly dropped. It requires urgent medical treatment. For patient's who may be at risk of experiencing adrenal crisis, there can be lots of worry around whether healthcare professionals will recognise and know how to properly treat your condition.
At The Pituitary Foundation, we aim to provide educational and supportive resources to help you feel empowered to receive the medical care you need. As part of this, we recently delivered a talk on patient self-advocacy, with a particular focus on adrenal insufficiency and adrenal crisis.
In this talk, Professor John Wass (Professor of Endocrinology) provides his practical tips for preparing for healthcare appointments, to ensure you get the most out of them. He also discusses what to do if you feel you are not receiving, or have not received, adequate care while attending A&E with signs of adrenal crisis.
You can Prof Wass' full talk below.
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In his talk, Prof Wass also mentions a research paper that he continually refers to when discussing adrenal crisis and how this should be handled by healthcare professionals. This paper can be a useful tool for educating healthcare professionals on what adrenal crisis is and how they should manage patients who present with symptoms.
You may wish to download and print this paper and bring it with you to future healthcare appointments or visits to A&E.