Patients' experiences of treatment for nAMD
Research type
Research Study
Full title
Patients' experiences of treatment for neovascular Age-related Macular Degeneration (nAMD) - a project to develop a patient reported experience measure (PREM)
IRAS ID
353781
Contact name
Julie Hapeshi
Contact email
Sponsor organisation
Gloucestershire Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 8 months, 31 days
Research summary
Almost half the people with nAMD attend for treatment every month and many rely on family and friends for transport. The appointments can vary, with some lasting for less than 2 hours, others much longer. Injections can be painful and many patients experience anxiety before their next clinic visit. A prior Macular Society member survey highlighted the importance of getting appointment letters on time, avoiding delays and a personalised service. But for some patients, a poor experience and the burden of treatment lead to missed appointments and this contributes to poor treatment outcomes.
Understanding the factors associated with both negative and positive experiences of treatment can help change the way care is provided. Improving patient satisfaction, makes people more likely to attend appointments and receive the care needed to maintain their eyesight. To measure patients’ experiences, we need a short questionnaire called a PREM (patient reported experience measure). This would help us collect information regularly and from large numbers of patients treated at different clinics.
This project aims to design a PREM to collect data on the experiences of nAMD care across the UK, based on what is important to patients. The data collected will help improve the way that care is delivered, shifting the focus back onto the patient.
REC name
East of Scotland Research Ethics Service REC 2
REC reference
25/ES/0027
Date of REC Opinion
18 Apr 2025
REC opinion
Further Information Favourable Opinion