The NET Patient Foundation undertakes in-house research as well as supporting external clinical trials. We recognise the patient voice in research is vital. This voice is a hugely underused expertise in research and we thank every one who has contributed to any of the research that we have undertaken or supported.
Advocacy groups are working globally to increase the patient contribution in research.
Examples of NET Patient Foundation’s research projects:
1. We understand that being a NET patient often involves intermittent visits to hospital. But most of the time you are at home, managing your condition in the community. In 2017 we started a project looking at the support needs of NET patients and their families in the community, outside of the hospital setting. Several focus groups were held to discuss what the issues are and to give us an idea of what questions we should be asking. We presented these in a poster at UKINETs in December 2017 and won best poster in the category ‘Living With and Beyond NETs’. This year we invited NET patients to take part in an online survey about support, the feedback has been absolutely invaluable and we are very grateful to anyone who took the time to complete the survey or take part in the focus group.
2. ‘MIND the Gap’ – this is a 2 year project, undertaken with our psychotherapy service. The main aim is to raise awareness and to fill the gap (or huge void for some) in terms of the reality of cancer long term. This can be an anxiety ridden place, and we have to help patients carry, not only the physical, but also the psychological burden of disease. There are 9 major themes within this project, ranging from living with uncertainty to managing communication with your medical team.
3. Development of an EORTC Quality of Life questionnaire for patients with Pancreatic Neuroendocrine Tumours. This international study aims to create a Quality of Life questionnaire for patients with Pancreatic Neuroendocrine Tumours (pNETs). This study is funded by the EORTC, the NET Patient Foundation and Pfizer. The lead site for this project is Hampshire Hospitals, Professor John Ramage. There are 7 UK sites set up and 7 International sites.
4. PanDA | Pancreatic Cancer Dietary Assessment – Prospective study to assess the impact of embedding a dietician into the pancreatic cancer clinic; pro-active identification and treatment of pancreatic enzyme insufficiency to improve outcomes for patients with pancreatic malignancies.
The main aims of the study are:
- The early identification of those “at risk” of malnutrition
- Early and appropriate intervention
- Promotion of Quality of Life (QoL)
- Improve treatment tolerance and positively influence treatment outcomes.
This study is funded by the NET Patient Foundation and Pancreatic Cancer UK.
The lead site is the Christies Manchester, Professor Juan Valle.
5. PHE Partnership Project – this has been a huge project for us and work has finished on the initial interrogation of Public Health England Dataset on NET patients, along with registries in Northern Ireland, Wales and Scotland. We are hugely grateful to all the contributors from each registry, and to our medical working group for their commitment to this project. To date UK information about incidence, prevalence and survival of persons with Neuroendocrine Neoplasms (NENs) has been lacking. From our completed work, this information is now available for the first time and our finalised paper has been sent for publication.
Other 2018 collaborative publications are:
Delays and Routes to Diagnosis of Neuroendocrine Tumours – R Basuroy, C Bouvier, J Ramage, M Sissons and R Srirajaskanthan BMC Cancer (2018)18:1122
Prevalence of Self-Reported Side Effects in Neuroendocrine Tumour Patients Prescribed Somatostatin Analogues – T Whyand, C Bouvier, P Davies, Br J Nurs. (2018) Jul
The NCRI Clinical Studies Groups (CSGs) have been in existence for more than 10 years, and are a central part of the UK’s cancer research infrastructure. There are 18 CSGs that bring together clinicians, scientists, statisticians and lay representatives to coordinate development of a strategic portfolio of trials within their field. All CSGs interact with clinical research networks, funders and researchers to develop studies aimed at improving outcomes for patients. In addition to the 18 CSGs, there are also 3 Advisory Groups that provide ad hoc advice to the CSGs, and others, on developing clinical trials.
Lindsey, NPF’s Research Nurse, and Paul, a patient representative, sits on the NET NCRI Group. Lindsey also sits on the MCC NCRI Group.