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The impact of diabetic retinopathy on quality of life: qualitative findings from an item bank development project

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An Erratum to this article was published on 31 March 2012

Abstract

Purpose

Assessing the efficacy of treatment modalities for diabetic retinopathy (DR) from the patient’s perspective is restricted due to a lack of a comprehensive patient-reported outcome measure. We are developing a DR-specific quality of life (QoL) item bank, and we report here on the qualitative results from the first phase of this project.

Methods

Eight focus groups and 18 semi-structured interviews were conducted with 57 patients with DR. The sessions were transcribed verbatim and iteratively analysed using the constant comparative method and NVIVO software.

Results

Participants had a median age of 58 years (range 27–83 years). Twenty-seven (47%) participants had proliferative DR in the better eye, and 14 (25%) had clinically significant macular oedema. Nine QoL domains were identified, namely visual symptoms, ocular surface symptoms, vision-related activity limitation, mobility, emotional well-being, health concerns, convenience, social, and economic. Participants described many vision-related activity limitations, particularly under challenging lighting conditions; however, socioemotional issues were equally important. Participants felt frustrated due to their visual restrictions, concerned about further vision loss and had difficulty coping with this uncertainty. Restrictions on driving were pervasive, affecting transport, social life, relationships, responsibilities, work and independence.

Conclusions

Patients with DR experience many socioemotional issues in addition to vision-related activity limitations. Data from this study will be used to generate data for a DR-specific QoL item bank.

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Abbreviations

DME:

Diabetic macular oedema

DR:

Diabetic retinopathy

PRO:

Patient-reported outcome measure

QoL:

Quality of life

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Acknowledgments

CERA receives Operational Infrastructure Support from the Victorian Government.

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Authors and Affiliations

  1. Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, University of Melbourne, 32 Gisborne St, East Melbourne, VIC, 3002, Australia

    Eva K. Fenwick, Mohamed Dirani, Gwyn Rees, Tien Y. Wong & Ecosse L. Lamoureux

  2. Discipline of Optometry and Vision Science, NH&MRC Centre for Clinical Eye Research, Flinders University and Flinders Medical Centre-Australia, Adelaide, Australia

    Konrad Pesudovs & Jyoti Khadka

  3. Singapore National Eye Centre, Singapore Eye Research Institute, Singapore, Singapore

    Tien Y. Wong & Ecosse L. Lamoureux

Authors
  1. Eva K. Fenwick
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  2. Konrad Pesudovs
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  4. Mohamed Dirani
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  5. Gwyn Rees
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  6. Tien Y. Wong
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  7. Ecosse L. Lamoureux
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Corresponding author

Correspondence to Ecosse L. Lamoureux.

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Supplementary material 1 (DOC 43 kb)

Appendix: moderator’s guide for the focus group and interview discussions

Appendix: moderator’s guide for the focus group and interview discussions

Warm up questions

Let’s start by getting to know each other. Let’s go around the group. Briefly, please let us know your name and how long you have had diabetes.

Questions and prompts

We are interested today in your diabetic eye problems and how they impact on your life.

Symptoms

First, what are some of the symptoms you experience as a result of your diabetic eye problems?

Can you describe your eyesight/vision?

How well can you see?

What factors influence your vision?

Impact on QoL

How do your eye problems impact on your QoL?

What areas of your life are affected by your diabetic eye problems?

How much would you say your diabetic eye problems impact on your QoL?

What things are harder to do because of vision loss from your diabetic eye problems?

Can you think of specific examples where your diabetic eye problem has caused you or someone else difficulty?

Do you need help from others for some things because of your eye problems?

Depending on responses so far

In other groups I have talked to many people about how their diabetic eye problems affect them emotionally. I’m interested in your experience of this.

Can you describe how your diabetic eye problems make you feel emotionally?

How do you feel about your eye problems?

Can you describe some of your emotional reactions to vision loss?

In what ways do your diabetic eye problems affect your social or family life?

What things are you missing out on because of your vision?

What social occasions or leisure activities are affected by your vision loss?

How has your eye problem affected your family and personal relationships?

Thinking about travelling and getting out and about, can you describe how your diabetes eye problems have affected this?

What things are most difficult when travelling outside or in crowded places?

What do you find difficult when moving about in your own home?

In what ways have your diabetic eye problems impacted on your work life?

What aspects of your work are harder to do?

How have your diabetic eye problems impacted on you financially?

What things have cost you money because of your diabetic eye problems?

How about managing your diabetes? In what ways do your diabetic eye problems affect this?

What things [e.g. insulin shots, glucose monitoring, exercise] are hard to do because of your vision loss?

Finally, what is the worst thing about having diabetic eye disease?

What do you find the most annoying about your vision loss from diabetes?

Thank you all very much for sharing your experiences. I know this can be a difficult area to discuss but your input has been really valuable. Before we move on, I will briefly summarise what we have discussed so far….

Is there anything else you’d like to add to this before we move on?

Treatment and impact

I’d now like to move on to talk about eye treatments.

Has anyone had any treatment for their diabetic eye problems? What was it?

What were your experiences with this treatment?

What side effects, if any, have you experienced?

In what ways has your treatment experience affected your QoL?

Useful prompts to use throughout the focus group:

Are there any other views on this?

Is there anything else?

Would you explain further?

Can you give me an example of what you mean?

Summary

We are reaching the end of our time now. I would like to summarise the key ideas that I have heard….

Is there anything I have missed or that you would like to add to my summary?

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Fenwick, E.K., Pesudovs, K., Khadka, J. et al. The impact of diabetic retinopathy on quality of life: qualitative findings from an item bank development project. Qual Life Res 21, 1771–1782 (2012). https://doi.org/10.1007/s11136-012-0110-1

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