Bristol and Region Neuroendocrine Tumour Patient Opinion survey
Research type
Research Study
Full title
Bristol and Region Neuroendocrine Tumour Patient Opinion survey
IRAS ID
162582
Contact name
Karin Bradley
Contact email
Sponsor organisation
Ipsen Limited
Clinicaltrials.gov Identifier
ME/2014/4615, UHBristol R&D
Research summary
Rare conditions such as neuroendocrine disease are to be commissioned centrally with a strong focus on specialist care. It is important that patients receive the ‘best care’ but definition of this may be different for different patients. National evidence suggests that patients will willingly travel for best quality care but anecdotally patients in the South West report not wanting to travel and have a relatively low engagement with patient support groups. Is this because patients are not offered these opportunities or rather that they would prefer not to seek help through that forum? Considerable progress has been made in this area since the conception of the UHBristol NET MDT in 2007 but there remain examples of fragmented and isolated clinical care for this patient group as well as delayed and costly diagnostic journeys. Formal cross Trust sign-up to clinically introduced pathways of care are critical and decisions urgently need to be taken regarding further centralising care or building a strong network of linked centres with named, experienced and engaged clinicians feeding into a central high quality MDT.
The objectives of the study are to gain an understanding of:
1) The historical diagnostic journeys and pathways of care experienced by patients currently under the Bristol neuroendocrine MDT/clinic.
2) patient perception regarding existing and preferable location(s) of care
3) how important their condition is in their lives
4) their engagement with patient groups and if not engaged the reasons whyREC name
South West - Frenchay Research Ethics Committee
REC reference
14/SW/1086
Date of REC Opinion
6 Oct 2014
REC opinion
Further Information Favourable Opinion