Quality of life study in desmoid disease (Version 1)
Research type
Research Study
Full title
Quality of life in patients with familial adenomatous polyposis related desmoid disease
IRAS ID
132814
Contact name
Susan Clark
Contact email
Sponsor organisation
North West London Hospitals NHS Trust
Research summary
15% of people with familial adenomatous polyposis (FAP) develop benign desmoid tumours, the majority abdominal. After addressing the colorectal cancer risk associated with FAP, through prophylactic colectomy, desmoid tumours become, along with upper GI cancer, the most common cause of death in those with FAP. The majority of these rare tumours have a stable growth state and are a minor inconvenience. 10% grow aggressively leading to complications such as bowel or ureter obstruction, sometimes perforation and even death. Due to their rarity, research is limited and little is known about these tumours. Faced with this knowledge and sometimes with first-hand experience of family members suffering from the effects of desmoid disease, such a diagnosis can be a significant cause for concern and psychological stress in some patients.
We will explore the common themes that impact on the quality of life of people suffering with desmoid disease in association with FAP. The hypothesis is that those affected would have a poorer quality of life compared to the general UK population or those with FAP alone.
Eligible participants will be fully consenting adults who agree to take part in the study. Up to 15 people will attend a focus group discussion to identify the common issues affecting their quality of life. Quality of life questionnaires will then be mailed out to individuals with desmoid disease and/or FAP and professionals involved in their care. It is planned this will result in the preliminary development of specific tool to assess quality of life for those affected by desmoid disease.
A second part of the study will involve a review of FAP associated desmoid cases, looking at outcomes in those with the disease.
The study will be conducted primarily at St Mark’s Hospital, in part at Addenbrooke’s and John Radcliffe hospitals too and conclude within 12 months.
REC name
South Central - Berkshire B Research Ethics Committee
REC reference
13/SC/0429
Date of REC Opinion
26 Jul 2013
REC opinion
Favourable Opinion