Neuroendocrine Cancer UK is excited to announce that its publication “Patient Perspectives, from Diagnosis Through Treatments and Beyond”, co-authored by Catherine Bouvier and Nicola Jervis, has been published in Current Opinion in Endocrine and Metabolic Research – and is available online through ScienceDirect.
The purpose of this review is to reflect on the current patient experience of Neuroendocrine Cancer (NC) from the pre-diagnosis stage to identify recommendations that will provide quality care through patient centred decision-making.
Our review centres on the latest patient led research around the barriers causing delayed diagnosis, highlights clearly both on a global scale, and UK specific, that the faces of the patients may change, but the facts remain the same.
In the UK, there is a low suspicion of Neuroendocrine Cancer amongst both patients and healthcare professionals at both primary and secondary care level – particularly at initial presentation of symptoms. This finding is echoed globally.
Challenges continue even once diagnosed – around access to specialist care and many other factors, including the prospect of living with an incurable cancer, emotional and quality of life considerations should be of equal importance;
“I am not afraid of dying, but I am afraid of not living”.
We call for a truly collaborative approach, across all stakeholders that incorporates and prioritises . . .Patients as partners in care . . . an absolute requirement for improvements in both experience and outcomes.
You can read the full “Patient Perspectives, from Diagnosis Through Treatments and Beyond” publication here
But please note this is read only – the full article cannot be shared without explicit permission.
You can share the citation:
Bouvier and Jervis (2021) Patient perspectives, from diagnosis through treatments and beyond. Current Opinion in Endocrine and Metabolic Research 2021, 18:254–257