Information Needs of Adults with Neurofibromatosis Type 1 (NF1)
Research type
Research Study
Full title
The information needs of adults with Neurofibromatosis Type 1 (NF1): a qualitative study
IRAS ID
212583
Contact name
Paul Marshall
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
0 years, 3 months, 26 days
Research summary
Neurofibromatosis Type 1 (NF1) is a genetic disorder, with a worldwide incidence of 1 in 2500 to 3000. Symptoms vary widely, even amongst members of the same family; those who are mildly affected may only have skin changes, whilst others may have more severe changes, including cognitive deficits (e.g. learning disorders) and scoliosis (curved spine). Neurofibromas, which are benign (non-harmful) skin growths, are a common symptom. NF1 is a life-long condition, and there is currently no way to predict what complications may arise throughout life, making it a complex condition to manage and provide information for.
The aim of this research is to explore the information needs of adults NF1. Though a small project, it could help to better understand their needs and if appropriate, identify how information for NF1 could be improved. Primarily, it could act as a pilot study which could inform future research, which could then inform service development, and help to better provide information for those with NF1.
Those eligible will be adults (aged over 18 years) with a diagnosis of NF1. Those who do not speak English will be excluded, as there is no funding available for an interpreter. The study will last four months. Data will be collected via in-depth, semi-structured interviews conducted at a local hospital (Chapel Allerton Hospital, Leeds) or at the University of Leeds in a pre-booked room. Interviews will be audio tape-recorded and transcribed verbatim (word-for-word).
This study is being conducted as part of an educational programme to obtain an MSc in Adult Nursing at the University of Leeds.
REC name
West of Scotland REC 4
REC reference
17/WS/0004
Date of REC Opinion
18 Jan 2017
REC opinion
Favourable Opinion