Supporting teenagers to overcome macular problems (STOMP)
Research type
Research Study
Full title
Supporting Teenagers to Overcome Macular Problems (STOMP): User-led rehabilitation for young people with inherited macular disease
IRAS ID
326182
Contact name
Michael Crossland
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2023/03/80 medical research, Data protection number
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
Inherited macular disease (IMD) affects about 6,000 young people in the UK. The impact of vision impairment on wellbeing is enormous: recent studies show more than 40% of adults with low vision have signs of depression. Less is known about wellbeing and mental health in young adults with visual impairment, although research has identified anxiety, frustration, anger and reduced quality of life in children with low vision. Isolation, educational challenges and mental health difficulties are likely to have increased further during the COVID-19 pandemic.
In this study we will use qualitative research techniques to to explore the impact of vision impairment on wellbeing and mental health for young people with inherited macular disease. We will explore the relationships between participation, social connectedness, level of functioning and vision-related quality of life, wellbeing, depression and anxiety.
Aims of the study
1. To quantify the impact of IMD on vision-related quality of life, wellbeing and mental health.
2. To collect the views of young people with established IMD, their carers, and experts in vision rehabilitation, on the optimal design of support services for people with new IMD.
3. To pilot an integrated support package for people developing IMD and evaluate its impact on vision-related quality of life, wellbeing and mental health.REC name
London - City & East Research Ethics Committee
REC reference
23/LO/0591
Date of REC Opinion
12 Jul 2023
REC opinion
Favourable Opinion