Patient-practitioner communication in AMD

  • Research type

    Research Study

  • Full title

    Investigating the delivery and impact of patient-practitioner communication in modifying lifestyle of people with Age-Related Macular Degeneration (AMD).

  • IRAS ID

    298625

  • Contact name

    Tamsin Callaghan

  • Contact email

    Tamsin.callaghan@city.ac.uk

  • Sponsor organisation

    City, University of London

  • Duration of Study in the UK

    2 years, 9 months, 1 days

  • Research summary

    Research summary-
    Age related macular degeneration (AMD) is the leading cause of untreatable visual impairment in developed countries. Although there is currently no treatment for non-neovascular AMD, there are a number of studies showing that certain lifestyle changes such as smoking cessation, dietary changes and nutritional supplementation can reduce the risk of progression. Therefore, eye care professionals are recommended to provide lifestyle advice to patients with AMD and the Royal College of Ophthalmologists state that patients should be informed of modifiable factors that can reduce the progression risk through verbal and written communication. However, studies have shown that these recommendations are not consistently followed.

    Therefore, the overall aim of this research is to investigate the extent, nature and effectiveness of lifestyle modification advice currently given to patients with AMD. The ultimate objectives are i) to provide an implementation science based framework to increase the extent of the delivery of this information and ii) to provide guidance on optimising the effectiveness of communication between practitioners and patients with AMD. By using practice based evidence, important in developing translational research, this may lead to improved patient satisfaction, management and prognosis.

    Surveys will be used to collect self-reported outcome data, reflecting the patient experience. Survey 1, at the time of the consultation, will collect data about communication during the visit, patient understanding and preferred mode of advice provision. Patient demographic information, Eye care practitioner (ECP) type, and setting (practice vs. hospital) will also be recorded. After three months, survey 2 will be sent to consenting participants gathering information on any self-reported lifestyle changes made since the advice. A final survey will be provided to ECPs exploring factors that may have affected the provision of information. These data will be used to develop informed recommendations for overcoming barriers to the incorporation of lifestyle advice into eye examinations.

    Summary of results-
    Out of all of the participants, 60.6% could not recall being given any lifestyle advice before their most recent appointment and 73.5% could not recall being given any advice at their most recent appointment. Before their most recent appointment, the most common form of advice that participants could recall being given was dietary and vitamins and medication. Although the large majority of participants were not given any lifestyle advice at their more recent appointment, the most common advice given to participants was regarding increasing their intake of green leafy veg. At the end of survey one, participants were asked about their preferred way of receiving advice, more than half of the participants preferred to have a verbal discussion or written information. However, only 9% of the participants were given written information at their most recent appointment.
    One hundred and fifty three participants were included in the second survey. In total, 25 participants reported that they were given lifestyle advice, however, only 9 people went on to make lifestyle changes. Additionally, out of the 112 participants that reported not receiving any lifestyle advice, 17 participants made lifestyle changes. The main reasons for not making lifestyle changes were not receiving any advice and the belief that participants were already doing everything they were asked to. Finally, participants reported that more detailed advice and written information would help them keep the changes they have made to their lifestyle.
    Survey three (practitioner survey) is still under the process of analysis and updates can be provided upon request.

    How has this study helped patients and researchers?
    This study has given a voice to many patients that feel like they were not given lifestyle advice, it has also enabled us to understand that there is a gap between the guidelines given to eye care professionals and the implementation of the guidelines, even from the patient perspective.

  • REC name

    Yorkshire & The Humber - Bradford Leeds Research Ethics Committee

  • REC reference

    21/YH/0259

  • Date of REC Opinion

    11 Nov 2021

  • REC opinion

    Further Information Favourable Opinion