Brain surgeons and researchers from Cambridge and London are calling on colleagues worldwide to adopt the first ever consistent way of recording outcomes following pituitary gland tumour removal.
They say different studies make measurements in different ways, which is a huge stumbling block in the global battle to help patients.
Consultant neurosurgeon at Cambridge University Hospitals NHS Foundation Trust (CUH) and the University of Cambridge Mr Angelos Kolias explained:
Despite increased research within pituitary surgery, many questions about the condition remain unanswered.
One key barrier is that information recorded in pituitary surgery research is inconsistent because different studies measure different outcomes. This makes it difficult to compare or combine results and draw meaningful conclusions.
Mr Angelos Kolias
Pituitary adenomas are benign tumours of the pituitary gland, which sits at the base of the brain. They can cause symptoms by pressing on the nerves that control vision or by lowering other pituitary hormone levels (hypopituitarism).
Some types lead to syndromes like Cushing's with increased fat deposited around the stomach, neck or shoulders and a red puffy face. They can also cause acromegaly, which is associated with abnormal growth of the hands, feet, and face. Higher rates of cardiovascular disease and diabetes are often seen with these conditions.
The most common type of treatment is surgery, which is usually performed through the nose. The technique allows for tumour removal with minimal tissue disruption, but in more complex cases, a craniotomy (opening the skull) may be necessary
Now a paper in the international journal Pituitary advocates that clinicians worldwide adopt a newly created Core Outcome Set (COS), which is an agreed list of outcomes that should be measured in all research studies on a particular health condition.
It follows latest findings of the Pituitary Surgery Core Outcomes and Priorities (PitCOP) study across 14 countries led by Mr Kolias, Mr Hani Marcus, consultant neurosurgeon at University College London Hospital NHS Foundation Trust (UCLH) and UCL, Professor Stephanie Baldeweg, consultant endocrinologist at UCLH and UCL and Mark Gurnell, Professor of Endocrinology at the University of Cambridge and CUH.
The new COS includes 22 clinical and patient-centred outcomes, divided into seven key domains: short-term surgical; nasal; ophthalmic; endocrine; quality of life and psychological; other short-term; and disease control.
Mr Kolias said:
We are delighted to share this finalised Core Outcome Set since it can be used by researchers worldwide who can be confident in the knowledge they are contributing to something that will help now, and in the future.
Mr Angelos Kolias
Mr Marcus added:
We advocate for use of this COS in all future pituitary adenoma surgery research to enable more consistent outcome reporting, allowing direct comparison of key outcomes. This will, in turn, help to identify research gaps as well as inform the adoption of new treatments and interventions.
Mr Hani Marcus
Professor Baldeweg explained:
The study incorporated the perspectives of healthcare professionals, patients, and caregivers to ensure individuals with experience of the condition were actively involved, collating responses from participants across 14 different countries.
Professor Stephanie Baldeweg
Professor Mark Gurnell said:
The final COS includes a comprehensive list of 22 clinical and patient-centred outcomes, divided into seven key domains. It is recommended that future pituitary surgery research includes measures of these outcomes as a minimum. To our knowledge, this is the first attempt at developing a COS for pituitary surgery research.
Professor Mark Gurnell
The study is supported by the National Brain Appeal, the Hawkes Institute, Department of Computer Science, University College London, University College London Hospitals, University of Cambridge, Cambridge University Hospitals, the Pituitary Foundation, and the Pituitary Society.
Earlier the study, the first of its kind in the world gave patients an important voice in the prioritising of research. 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. Resad more about it here.
- Brain listing picture by Gerd Altman from Pixabay.