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Psychological wellbeing of people living with Inherited retinal degenerations (IRDs) - International (Carers/Family Member)

Introduction

Inherited retinal degenerations (IRDs) are the leading cause of blindness in working age adults. IRDs not only affect individuals’ vision health but can also have detrimental effects on their mental health. Retina International and the University of Melbourne are working to understand the impact of the disease beyond vision. To help us better understand the impact of IRDs, we are inviting people living with an inherited retinal degeneration to take part in this survey.

The main purposes of this study are to:
  • find out what percentage of people living with IRDs experience mental health issues (anxiety, depression, suicidal thoughts)
  • identify factors associated with mental health issues

The survey is open to people who have any of the following conditions:
  • Retinitis pigmentosa (RP)
  • Leber congenital amaurosis (LCA) / early onset severe retinal dystrophy to LCA (LCA/EOSRD)
  • Usher syndrome
  • Stargardt disease
  • Choroideremia
  • X linked retinoschisis
  • Achromatopsia
  • Cone dystrophy
  • Cone rod dystrophy
  • Best disease
  • Refsum disease
  • Bardet Beidl Syndrome

Completing the survey

You are being invited to take part in a research study to be carried out on an online survey by Retina International and the University of Melbourne. This survey is composed of 59 questions and should take approximately 16 minutes to complete.
 
Before you decide whether or not you wish to take part, you should read the information provided below carefully and, if you wish, discuss it with your family, friends or GP (doctor).  Take time to ask questions – don’t feel rushed and don’t feel under pressure to make a quick decision. You can download a copy of the patient information leaflet here to review and return to the survey at a later stage.
 
You should clearly understand the risks and benefits of taking part in this study so that you can make a decision that is right for you. This process is known as ‘Informed Consent’.  
 
You don't have to take part in this study.  
 
You can change your mind about taking part in the study any time you like.  Even if the study has started, you can still opt out.  You don't have to give us a reason. 
 
Why is this study being done? 
 
We are conducting a survey to better understand the mental health impacts of inherited retinal degenerations. This is a part of a larger research programme examining the psychological and social well-being of people living with retinal degenerative diseases.   
 
The specific aims of this study are: 

- To explore psychological/mental health burden of people living with IRDs   
- To explore the rate of suicidal thoughts in patients with IRDs   
- To assess the relationship between self-reported visual status, demographic and socio-economic factors and psychological status in patients with IRDs.    

Information collected through this survey (IRD) will inform knowledge and understanding of the mental health needs of the people living with inherited retinal degenerations and the factors influencing mental wellbeing. The questions you answer today could lead to tomorrow's treatment.   
 
Who is organising and funding this study? 

Retina International, a global patient led membership organisation is organising this study. The work of Retina International is funded by member organisations and industry partners. The academic partner of this study is Prof Lauren Ayton, University of Melbourne Australia. This research study has been approved by the University of Melbourne Human Research Ethics Committee, #33148)
 
Why am I being asked to take part? 

You are being asked to take part as you are a person with family member or friend living with an Inherited retinal degeneration (IRD).
 
How will the study be carried out? 

This study will be carried out by an online questionnaire.  

What will happen to me if I agree to take part? 

As part of this study, you are invited to complete an online survey. This survey will collect personal information about your friend/relative living with IRD and includes demographic information (such as age and gender) and details about their work and education. It will also collect information about their condition and the impact their condition has on their wellbeing.  We will not collect identifying information about them, such as their name, address or contact details.

What are the benefits? 

The survey will assist us to better understand the mental health impacts of inherited retinal degenerations. This is a part of a larger research programme examining the psychological and social well-being of people living with retinal degenerative diseases.   Sharing your experiences could also improve how to identify and treat mental health issues for more people living with the same condition as yours.   The data will also be used to inform policy actions that reflect the need of people living with IRDs.
  
What are the risks? / What if something goes wrong when I’m taking part in this study? 
 
There are no anticipated risks in taking part. If you experience any unsettled feelings while completing this survey, there are support options available.
Please visit the following website, select “Find a Helpline”, and enter your country name. It will provide a list of support services available in your country.

Suicidal Crisis Support - IASP

We strongly suggest that you reach out to your support networks, such as family, friends and health professionals. In each country that participates in the study, there are also help lines and other psychological support services, which your GP or family doctor can connect you with.

If you have any concerns about your IRD care and management, please contact your general practitioner/preferred health provider.  Our research team are also available to discuss any concerns that you may have, or feelings of distress from the questions – you can contact us via email (info@retina-international.org) if needed. 

 
Will it cost me anything to take part? 

There are no costs to taking part in the survey.  

Is the study confidential? 

Yes.  Your contribution to the survey will be collected and data will be stored in a secured location. All data will be anonymized, and you will not be identifiable within any publications/reports/presentations made as a result of this study. 
 
Data Protection & Privacy Notice
 
This survey will collect personal information about you including demographic information (for example your age, gender, socioeconomic status, educational attainment). It will also collect personal information about your condition and experiences of vision-related anxiety, depression and suicidal thoughts.

 Your personal information collected as part of this survey will be kept strictly confidential. Your identity will not be revealed, and your confidentiality will be protected in any reviews and reports of this study which may be published. 

Data/information used in this research project may also be used in future projects that are closely related to this project, the same general area, or could make valuable use of this data.

The data collection will be via the SurveyMonkey website (www.surveymonkey.com), which is the largest online survey company in the world. We have chosen this platform as it works well with most screen readers, has very high data security and privacy and is GDPR compliant. The data servers of SurveyMonkey are in multiple countries, mainly Ireland, Canada and the USA. If you have queries about the data security, you can contact us for further information.
 
Your participation in this survey is voluntary; and you can withdraw at any time if you change your mind. If you decide to withdraw your consent by exiting the survey mid-way through, your responses will not be recorded. 

You also have the right to: 
 
-ask that we delete the personal information that you provide, or restrict the way in 
which we use your personal information. 
 
-withdraw consent to our processing of your personal information; and 
-obtain and/or move your personal information 
 
You can do so by emailing: info@retina-international.org  
 
Where can I get further information? 
 
If you have any further questions about the study or if you want to opt out of the study, you can rest assured it won't affect the quality of treatment you get in the future.   
 
If you need any further information now or at any time in the future, please see contact details below;

Co-PI: Professor Lauren Ayton, AM
Co-PI title: Professorial Fellow, University of Melbourne
Email: layton@unimelb.edu.au

Co-PI: Dr Nabin Paudel  
Co-PI title: Head of Research and Programmes, Retina International
Email: nabin.paudel@retina-international.org

Co-investigator’s name: Dr Ellen Moran  
Co-investigator’s title: Scientific Programme Manager  
Email: ellen.moran@retina-international.org
 
Data Controller: Retina International  
https://retina-international.org/
Email: info@retina-international.org

Data Protection Officer: Ms Avril Daly
Email: info@retina-international.org
 

Who can I contact if I have any concerns about the project?

This project has human research ethics approval from The University of Melbourne [Project ID 2025-33148-68601-2]. If you have any concerns or complaints about the conduct of this research project, which you do not wish to discuss with the research team, you should contact the Research Integrity Administrator, Office of Research Ethics and Integrity, University of Melbourne, VIC 3010. Tel: +61 3 8344 1376 or Email: research-integrity@unimelb.edu.au. All complaints will be treated confidentially. In any correspondence please provide the name of the research team and/or the name or ethics ID number of the research project.

If you are over eighteen years old and would like to proceed with this survey, please provide consent by clicking on the “start survey” link below.

If you would prefer a carer, friend or family member to complete this survey on your behalf, they can also do this. By clicking on the “start survey” link below, you are providing your consent for them to do so.

By clicking this link, you agree that you have read and understood the information above about this research project, and that you consent to take part in this research study having been fully informed of the risks, benefits and alternatives.

If you have any questions about the study and are not ready to continue, please email us at info@retina-international.org  




1.If you are over eighteen years old and would like to proceed with this survey, please provide consent (Please select all statements that apply to you):
2.In what country do you live?
3.What IRD is your family member/friend diagnosed with?
4.What form of retinitis pigmentosa (RP) are they diagnosed with?
5.How have they been diagnosed?
6.How would they describe their current level of vision?
7.Are you aware of their genetic diagnosis (mutation)?
8.When were they diagnosed with the condition?
9.How long did it take from them initially being aware of a problem with their vision and obtaining a genetic test?
10.What was their biological sex at birth?
11.What is their age in years?
12.Have they ever used any formal mental health related services? (For example, receiving counseling, guidance, or help with something in your life from a professional or semi-professional provider.)
13.Are they currently using any assistive technologies or rehabilitation tools (magnifiers, filters, braille, low vision glasses or any other low vision devices) for their visual impairment?
14.What is their Marital Status ?
15.What is their employment status ?
16.How often do you require assistance from other people to complete daily activities inside your home or normal workplace?
17.How often do you require assistance from other people to complete daily activities in unknown environments (ie. when going to a new shop, or travelling in the community)
18.Self-reported socioeconomic status (Please read out the following text to your family member/friend and record their response)

Think of this 10-rung-ladder, (numbered from 1-10 from bottom to top, bottom rung 1, the top rung 10) as showing where people stand in your country. At the top of the ladder (10th rung) are people who are best off – those who have the most money, best education, and the most respected jobs. At the bottom of the ladder (1st Rung) are the people who are worst off – who have the least money, least education and the least respected job or no job. The higher up you are on the ladder, the closer you are to the people at the top, the lower you are the closer you are to the people at the bottom.

Think of a 10-rung-ladder, (numbered from 1-10 from bottom to top, bottom rung 1, the top rung 10) as showing where people stand in your country. At the top of the ladder (10th rung) are people who are best off – those who have the most money, best education, and the most respected jobs. At the bottom of the ladder (1st Rung) are the people who are worst off – who have the least money, least education and the least respected job or no job.

The higher up you are on the ladder, the closer you are to the people at the top, the lower you are the closer you are to the people at the bottom.

Where would you place yourself on the ladder in relation to other people in your country?

Please choose a rung number where you think you stand at this time in your life relative to other people in your country.
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19.General Wellbeing and life satisfaction (Please read out the following text to your family member/friend and record their response as appropriate)

Think of this 10-rung-ladder, (numbered from 1-10 from bottom to top, bottom rung 1, the top rung 10) as showing where people stand in your country. At the top of the ladder (10th rung) are people who are best off – those who have the most money, best education, and the most respected jobs. At the bottom of the ladder (1st Rung) are the people who are worst off – who have the least money, least education and the least respected job or no job. The higher up you are on the ladder, the closer you are to the people at the top, the lower you are the closer you are to the people at the bottom.

Think of a 10-rung ladder (rungs numbered from 1-10 from bottom to top, bottom rung 1, the top rung 10). Suppose the top of the ladder (10) represents the best possible life for you and the bottom of the ladder the worst (1) possible life.

Where on the ladder do you feel you stand at the present time?

Please choose a rung number where you think you stand at this time in your life relative to other people in your country.
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20.Have they been diagnosed with any other medical conditions other than IRD? If yes, please specify
21.With 0 being complete blindness and 10 being excellent vision, please ask them how do you they rate their current vision status?

(Please consider your all vision domains such as central vision (eyesight while looking straight ahead, peripheral vision (vision sideways when looking ahead), visual field, contrast sensitivity (brightness and darkness) and depth perception (seeing in 3D) while providing the score)

Please insert a number.
22.What is their educational status?
The following questions are about your family member/friend's vision-related anxiety that they may have experienced specifically due to their vision condition. Please request them to answer these questions as if they are doing the tasks alone and without the assistance of another person, unless otherwise specified. Additionally, if they wear glasses or contact lenses, please answer all of the following questions as though they are using them.

If they do not perform any of the tasks or if that task is not relevant to their life for reasons other than vision, please select “not applicable (n/a)”. Please ask the following questions to your family member/friend and record as responded.
Reading - The following questions ask about their reading ability
23.How often do you worry when reading up close on your own (i.e. forms/documents)?
24.How often do you worry when reading at a distance on your own (i.e. directions or signs in an unfamiliar place?)
Colour and contrast – The following questions ask about your colour vision and contrast sensitivity. Contrast sensitivity is the ability to distinguish an object from a light or dark background or being able to see objects against the similarly coloured backgrounds.
25.How often do you worry when distinguishing colours/shades on your own?
26.How often do you worry when identifying objects against similarly coloured backdrops on your own?
27.How often do you worry about recognizing faces on your own?
Dark Adaptation, Mobility, Peripheral Vision – The following questions ask about your dark adaptation, mobility and peripheral vision during the day, night, or in poorly lit areas. Night questions should be answered assuming lighting from moonlight or street lighting.
28.How often do you worry about going to unfamiliar places on your own during the day?
29.How often do you worry about accidentally bumping into people/objects when you are alone during the night?
30.How often do you worry about accidentally bumping into people/objects when you are alone in poorly lit areas?
31.How often do you worry about seeing stairs or steps when you are alone during the night?
32.How often do you worry about seeing stairs or steps when you are alone in poorly lit areas?
33.How often do you worry about seeing curbs, sidewalks or uneven ground when you are alone during the night?
34.How often do you worry about seeing curbs, sidewalks or uneven ground when you are alone in poorly lit areas?
Light sensitivity – The following questions are related to your light sensitivity
35.How often do you worry about seeing in places with bright fluorescent lights when you are alone?
36.How often do you worry about going outside on a bright or sunny day when you are alone?
The following 14 statements will help us to determine the impact that your family member/friend's condition may have on their mental wellbeing. If you/they feel unsettled completing these questions, please refer to the further supports section at the start of the survey.

Please read out the following statements to them and tick the box beside the reply that is close to how they have been feeling in the past week. Ask them not to take too long over their replies: their immediate is best.
37.I feel tense or wound up:
38.I still enjoy the thing I used to enjoy:
39.I get a sort of frightened feeling as if something awful is about to happen:
40.I can laugh and see the funny side of things
41.Worrying thoughts go through my mind
42.I feel cheerful
43.I can sit at ease and feel relaxed
44.I feel as if I am slowed down
45.I get a sort of frightened feeling like 'butterflies' in the stomach
46.I have lost interest in my appearance
47.I feel restless as i have to be on the move:
48.I look forward with enjoyment to things
49.I get sudden feelings of panic
50.I can enjoy a good book or radio or TV programme:
The following 5 questions will help us determine if your family member/friend have had any suicidal thoughts in the past month due to their condition. If you/they feel unsettled completing these questions, please refer to the further supports section at the start of the survey.

Please read out the following questions to them and ask them to select a number from 0 to 10 that best describes their experience. If the answer to the first question is 0, you don't have to fill the rest of the survey questions.

Please note that these questions are not diagnostic, and the results are used for research purposes only.
51.In the past month, how often have you had thoughts about suicide? (0 = Never, 10 = Always)
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52.In the past month, how much control have you had over these thoughts? (0 = No control, 10 = Full control)
0
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53.In the past month, how close have you come to making a suicide attempt? (0 = Not close at all, 10 = Made an attempt)
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54.In the past month, to what extent have you felt tormented by thoughts about suicide? (0 = Not at all, 10 = Extremely)
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55.In the past month, how much have thoughts about suicide interfered with your ability to carry out daily activities, such as work, household tasks or social activities? (0 = Not at all, 10 = Extremely)
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Current Progress,
0 of 55 answered