Discussion Groups

Title: Ocular Coherence Tomography (OCT) study.

Date PPI Involvement: February 2019

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People contributing: 6 research community members contributed.

Main aim of the activity: To review the patient information sheet for the Ocular Coherence Tomography (OCT) study.

Purpose and Outcome: Patients with known wet AMD were contacted to review the patient information sheet for the OCT study. They gave feedback on language, understanding, abbreviations, jargon and made recommendation on anything they felt would be helpful. Feedback was passed on to the researchers for alterations before being submitted to ethics.

Title: Discussion group on Assistive Technology

Date of Focus Group: 14th February 2019

Condition Addressing: Assistive Technology

Number of People in attendance: 7 people with visual impairment, 2 sighted supporters. There were also 2 healthcare professionals and 2 PPI facilitators.

Main aim of the project: To discuss the feasibility of a possible patient day on assistive technology targeted at people who have a lower level of awareness about what might be available to them..

Purpose and Outcome of Focus Group: A discussion group was held to discuss the feasibility of running an assistive technology day. Five of contributors had previously delivered assistive technology training. The aim of the discussion was to: increase our knowledge of the depth and breadth of different technologies already available/most commonly used, learn where people get their information on accessibility technology from and how to reach the target audience, understand what an event on assistive technology should be able to deliver for the target audience.

Feedback and recommendations were collated and passed to the healthcare professionals to look for funding opportunities.

Title: Discussion group on ocular prosthetics

Date of Focus Group: 6th December 2018

Condition Addressing: Ocular Prosthetics

Number of People in attendance: 3 people who wear ocular prosthetics. There were also 1 study researchers and 1 PPI facilitators and one notetaker present.

Main aim of the project: To discuss patient priorities when been fitted with a prosthetic eye and to review prototypes of 3D prosthetic eyes.

Purpose and Outcome of Focus Group: A discussion group was held with a ocular prosthetic users, to discuss what is important to them when being fitted with a prosthetic and what their concerns and priorities are. They were also given the opportunity to look at the 3D prosthetic eyes and give feedback on how they compare to the current process.

Feedback and recommendations were collated and have been incorporated into the study’s protocol for future funding applications.

Title: Current Understanding, treatment and management of Fuchs’ Disease:

Date of Focus Group: 27th September 2018

Condition Addressing: Fuchs

Number of People in attendance: 6 people with a diagnosis of Fuchs disease. There were also 2 study researchers and 2 PPI facilitators and one notetaker present.

Main aim of the activity: This was an exploration exercise to investigate patients views on gene therapy, Fuchs and future treatment options.

Purpose and Outcome of Focus Group: To look at what are the current challenges with Fuchs disease and treatment. What part does gene therapy play and what are the openings and opportunities for future research in early treatment.

Patients identified a need for early diagnosis and good patient information. They recognised the value gene therapy could have but also highlighted the need for more genetic counselling. One of the most important aspects for patients was the effect on the patient’s children in terms of passing on the disorder. For new treatments patients wanted to see clear benefits and well documented sort and long term side-effects.

Feedback was collated by the facilitators, reviewed by the participants and shared with the researchers.

Title: STOP AMD

Date of PPI Involvement: August 2018

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People contributing. 4 patients.

Main aim of the activity: Contributors from an earlier focus group were asked to complete a questionnaire around blood test for diabetes.

Purpose and Outcome: As a follow on to the discussion group regarding statins and AMD further input was requested. The study had reached the next stage for funding and a question had been raised by the funding body, regarding whether a blood test for diabetes is required. The questionnaire was completed by 4 contributors, collated and passed to the researchers who responded to the funding body.

Title: Wellbeing and AMD

Date of first Focus Group: 13th February 2018

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People in attendance: 8 patients or relatives. There were also 3 healthcare professionals and PPI facilitators present.

Main aim of the project: to set up a study to investigate the practicality of a follow-on Clinical Trial testing a new tailored intervention looking at psychological influences to promote well-being in people with age-related macular degeneration.

Purpose and Outcome of Focus Group: A focus group was held to obtain people’s perceptions of the proposed study design, discuss what data should be captured in the study, and gather their opinions on talking therapy as a treatment for AMD

The patients highlighted areas of patient experience that could be supported by the intervention and gave advice on how the intervention could be flexible to be better tailored to each individual. Questions were also discussed around the delivery of talking therapy in an NHS setting.

The feedback has been collated and has been incorporated into the study’s funding application.

Title: STOP AMD

Date of first Focus Group: 27th November 2017

Condition Addressing: Age Related Macular Degeneration (AMD)

Number of People in attendance: 4 patients. There were also 3 healthcare professionals and PPI facilitators present.

Purpose and Outcome of Focus Group:

Main aim of the project: The study is a clinical trial comparing atorvastatin (statins) to a control treatment to see what effect atorvastatin have in reducing the risk factors of age-related macular degeneration (AMD) and the development of sight threatening advanced AMD.

A focus group was held to obtain the patients’ experience of statins, their perception on the proposed study design and discuss the administration and data collection of quality of life questionnaires.

The patients shared their experiences of statins and gave advice on study arms, recruitment and appointment scheduling. Side effects were given careful consideration and quality of life questionnaire administration was reviewed. Recommendations were discussed with the researcher.

The feedback has been collated and has been incorporated into the study’s funding application.

Title: The acceptable use of anonymised patient data

Survey Open: 28th October 2017 to 13th November 2017

Condition Addressing: Survey on the acceptable use of anonymised patient data

Number of responses: Total number of responses: 102 (71 online; 31 by post); 21% response rate

Purpose and Outcome of survey:

Main aim of the project: To gather patients thoughts around using people’s anonymised data from hospital appointments for research purposes.

A survey was administered online and by post to patients to gather their views on the use of high quality eye scans collected for clinical purposes being anonymised and then used for research. The question of consent and whether it is required for this type of data usage was a particular focus. On the whole the response was positive. A couple of caveats were: Data leakages were a concern and the insurance of this not happening. People were more likely to prefer consent when data specifically referred to the individual rather than a population.

The results were collated and fed back to the researcher and have been incorporated into a permission request to the NHS.

Title: The FLAIR Study

Date of first meeting: 21st February 2017

Condition: Retinitis Pigmentosa (an inherited retinal condition)

Number of People in attendance: 8 patients or relatives. There were also 3 healthcare professionals and PPI representatives present.

Purpose and Outcome:

FLAIR is looking to determine whether Iluvien – a drug used to reduce inflammation of the eye in people with diabetic macular oedema – might be of benefit to people with Retinitis Pigmentosa who have inflammation, which may be a contributing factor to their retinal damage and vision loss.

A discussion group was held to obtain the patients’ perception on the proposed study design, discuss what data should be captured in the study, and gather their opinions on the risk of possible side effects of Iluvien.

The patients also contributed thoughts about what information should be given to patients when they are being recruited for the study to allow them to provide informed consent. Patients also discussed what care a patient will receive throughout their participation and whether they will receive the same standard of care if they chose to leave the study before the end of the study duration.

The feedback has been collated and will be incorporated into the study’s application for funding.

Title: The PUPIL Study

Date of first meeting: 23rd November 2016

Condition: Chronic eye conditions

Number of People in attendance: 7 patients or relatives. There were also 4 healthcare professionals and PPI representatives present.

Purpose and Outcome:

The PUPIL study is the second stage of Dr Pearse Keane’s 5-year clinician scientist award. We have previously held a similar discussion group to address the first stage of this award, called the EASE study. Information about the EASE discussion group can be found in a table below.

To recap - this prestigious clinician scientist award is hoping to develop a binocular OCT imaging device for people with chronic eye diseases such as retinal disease – in particular, age-related macular degeneration, glaucoma and strabismus. The first stage of the project, the EASE study, looked at the ‘usability’ of the device prototype. The second stage of the project, the PUPIL study, will look at whether the device can be used to detect pupil defects.

This discussion group covered both the EASE study and the upcoming PUPIL study. The discussions included:

EASE:

- The results and learnings from the EASE study. Was there anything else in the study that can benefit from additional patient involvement?

- What information should be disseminated, to whom and through what channels?

- How can the results/data from the device be made available?

PUPIL:

- Overview of the PUPIL study, its aims and objectives and where learnings from EASE can be incorporated

- Comments on the protocol and design of the study

The feedback from this discussion group will be used to help with the dissemination of the EASE study results and will also aid the study coordinator when the PUPIL study begins recruiting patients.

Title: Acanthamoeba Keratitis Group

Date of most recent meeting: 23rd September 2016 (5th meeting of the group)

Condition: Acanthamoeba Keratitis (AK) - this is a condition caused by an amoeba that can be transferred to the eye if contact lenses come into contact with water (e.g. by cleaning them with tap water, by wearing them in the shower or while swimming in a pool, etc.). The cornea can become irritated and it sometimes leads to blurred or double vision, pain and even loss of vision.

Number of People in attendance: Between 15-30 people who have AK, friends, relatives and carers at each of the meetings.

Purpose and Outcome:

Patients with the condition formed a group with researchers, clinicians and patient representatives. These meetings were the first to be organised on this scale attended by patients with this rare condition.

A number of outcomes have arisen so far from the groups:

1. A patient-friendly information leaflet was produced about the rare condition.

2. A patient who designed a “no water” sticker for use on boxes in which contact lenses are packaged brought this project to the group for further discussion.

3. Patients and researchers produced a series of information films about cleaning contact lenses that were distributed to new university students in the autumn of 2014.

4. A case study research project was initiated that is looking into patients' experiences of the condition.

Title: The ARIES Study

Date of first meeting: 18th May 2016

Condition: Age-related Macular Degeneration

Number of People in attendance: 6 patients in attendance. There were also 2 PPI representatives present.

Purpose and Outcome of:

We held a group discussion for patients with AMD to gather their feedback on the patient information sheet and consent form for a study looking at whether Eylea, a treatment already on the market for AMD, could be given to patients less frequently without further risk of their wet AMD progressing. If this study proved that Eylea could be given less frequently to patients, this would mean that it might be possible to reduce the number of injections and visits to the hospital some patients would otherwise need.

The opinions from patients are very valuable and we wanted to use them to help us ensure that the information given to the study participants is understandable, easy-to-read and clear. This feedback was obtained through discussions and asking the patients to annotate the patient information before they arrived on the day.

The comments and feedback from our patient meeting were collated and used as the basis for a redraft of the patient information sheet and consent form for the ARIES study, which has now been approved.

Title: The Glaucoma-Psychology Study

Date of first meeting: 11th May 2016

Condition Addressing: Mood and well-being in people with glaucoma (with a focus on narrow-angle closure glaucoma) and cataracts.

Number of People in attendance: 6 patients in attendance. There was also 1 healthcare professional and 2 PPI representatives present.

Purpose and Outcome:

We invited individuals who have been diagnosed with glaucoma or cataract to take part in a short research discussion regarding an upcoming study that is aiming to understand mood and wellbeing in glaucoma.

The study discussed is aiming to explore whether there are any differences in mood and wellbeing in people diagnosed with primary angle-closure glaucoma compared with those with open-angle glaucoma or cataract. This is an important area of research because although it is known that improving mental wellbeing can help with overall eye health, there is very little research being conducted in this area.

Discussions were primarily based around the study design and thoughts on the overall research. However, patients also gave their valued feedback on three verified questionnaires which would be used to capture data in the study; BDI-II, STICSA, Life Events Scale.

Comments and feedback from this discussion group were collated and is currently being analysed so that the project and it’s outcomes are relevant, clear and accessible to participating patients.

Title: Glaucoma Trial Testing The Effectiveness Of Current Eye Drop Treatments

Date of first meeting: 18th February 2016

Condition: Glaucoma (congenital glaucoma, hereditary glaucoma and normal tension glaucoma patients were represented)

Number of People in attendance: 9 patients or relatives. There were also 3 healthcare professionals and PPI representatives present.

Purpose and Outcome:

The aim of this discussion group was to discuss a potential future study which will test the effectiveness of three different treatments for glaucoma - brimonidine, latanoprost or timolol.

We welcomed the attendees views on:

- The study outline and how the aim of the study addressed a ‘real world’ need for glaucoma patients

- The study design and protocol, including the proposed follow-up assessment and how this varied from standard practice

- Any possible side effects of the drugs and how a change in treatment won’t preclude recruited patients in the study

- Eligibility criteria and recruitment plan for the study

- Whether training on eye-drop bottle use would be helpful to patients

- Discussion on proposed outcome measures

The study protocol is currently being drafted which will also take into account the patient feedback from this group.

Title: 100,000 Genome Project

Date of first meeting: 12th September 2015

Condition: Cancer, rare disorders and infectious diseases

Number of People in attendance: 13 patients, relatives, friends or carers. There were also over 10 healthcare professionals and PPI representatives present.

Purpose and Outcome:

The 100,000 Genomes Project is a national scheme that aims to sequence, or analyse, 100,000 genomes (complete DNA) from participants with cancer, rare disorders and infectious diseases. It has been set up to help gain a better understanding of the genetic causes of these conditions and so improve their diagnosis and treatment. We held a group discussion for patients with different eye conditions to comment on the patient information and consent form.

The comments and feedback from our patient meeting were collated with other centres across the UK who conducted similar feedback exercises. The feedback is currently being analysed so that the project’s documents are clear and accessible to patients.

More information on this national project can be found at www.genomicsengland.co.uk

Also, one of the discussion group attendees is a volunteer at 'Metro Blind Sport' which is a London sports charity that aims to open doors to sport for blind and partially sighted people of all ages and sporting abilities. The NIHR Moorfields BRC were able to introduce this volunteer to the nurse counsellors at Moorfields Eye Hospital, who now highlight any events or opportunities to patients through the Metro Blind Sport news bulletin.

Title: The EASE Study

Date of first meeting 30th April 2015

Condition: Chronic eye conditions (people who may not have an eye condition but are over the age of 60 were also invited)

Number of People in attendance: 12 patients relatives, friends or carers. There was also 1 healthcare professional and 3 PPI representatives present.

Purpose and Outcome:

The attendees were invited to the discussion group to take part in a short research discussion regarding a study that is developing new ways of testing vision. The purpose of this study is to test the ease of use (“usability”) of a prototype binocular OCT imaging device in people with chronic eye diseases such as retinal disease - in particular, age-related macular degeneration, glaucoma, and strabismus. After a presentation was given on the research study, we welcomed views on the proposed device and how it will be tested amongst patients.

The feedback gathered from the attendees on the device and the usability study covered:

1. Their impressions of the device and whether it might be improved.

2. What they thought about the logistics of the usability study and how individuals might be recruited to participate.

3. Comments were also gathered about the draft patient information sheet. The refined version of this document will be given out to patients who may be recruited to the study in the future. It is important to ensure this document accurately describes the study in a clear and understandable way.

The study has been funded for a 5-year period by the National Institute for Health Research (NIHR) through a prestigious clinician scientist award to Dr Pearse Keane.

Title: The PIMS Trial

Date of most recent meeting: 24th September 2014

Condition: Macular holes: A macular hole is a small gap that opens up at the centre of the retina, in an area called the macula. A macular hole can cause blurred and distorted vision.

Number of People in attendance: 2 people who had experience of macular hole surgery and "positioning" after surgery.

Purpose and Outcome:

The purpose of this trial is to determine whether positioning face down for a period of time following surgery for macular hole improves the likelihood of success compared with positioning face forward.

Patients who had surgery to repair macular holes advised on the information needed by patients who are asked to ‘posture’ or ‘position’ themselves face down or face forward after surgery for several days. This information will be given out to patients who are now being recruited to a research study.

Title: Corneal Limbal Stem Cell Deficiency

Most recent date of meeting: 28th February 2014

Condition: A focus group discussion was held for corneal limbal stem cell deficiency, which is a condition that sometimes arises in patients with Aniridia or Stevens-Johnson Syndrome. A deficiency of limbal stem cells caused by a condition can cause scarring and opacification of the cornea. This, in turn, can cause vision loss and some discomfort or pain. The severity of the symptoms can vary greatly and a proportion of cases can have healthy eyes with good vision.

Number of People in attendance: 6 people who had Aniridia, their friends, relatives and carers. The Aniridia Network UK patient group were also represented.

Purpose and Outcome:

The study is a qualitative research project which aims to develop a questionnaire that will help monitor people with corneal limbal stem cell deficiency.

At present, the outcome measures that are reported for limbal stem cell transplants are largely subjective and based upon the clinician's interpretation of physical signs, i.e. whether the cornea looks better or not. Few studies report the patient experience and there is no validated tool that can be used to collect qualitative data about the patient’s experience.

The discussion group brought together clinicians and patients to discuss experiences of the condition and to develop a series of questions about the condition and impact on quality of life they believe are relevant. After obtaining the views from this group and analysing the information, a questionnaire was drafted which is currently been tested further by patients with corneal stem cell deficiency.

Title: The FACT trial

Most recent date of meeting: 16th January 2014 (there is now a Trial Steering Group which includes patient representatives)

Condition Addressing: Cataract: cloudy patches that develop in the lens of your eye and can cause blurred or misty vision. They are very common.

Number of People in attendance: 5 people who had cataract and/or had experience of cataract surgery, their friends, relatives and carers.

Purpose and Outcome:

The aim of this trial is to evaluate the cost-effectiveness of laser-assisted cataract surgery compared to phacoemulsification. Cataract patients and researchers discussed the design of a trial to evaluate different ways of removing cataracts.

The feedback gathered from the attendees on the trial covered:

1. The key outcomes for measuring "success" of different treatments. Patients indicated the trial should measure visual acuity after treatment rather than the incidence of surgical complications.

2. Feedback was obtained about different questionnaires to be used throughout the trial to capture data.

3. Logistics and opinions on the current plan of having the Femto-laser treatment and the Phaco-surgical treatment being conducted at separate sites in London.

The research group was subsequently successful in gaining funding for the trial and will start to recruit patients in 2015.

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