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Patients’ experiences before starting anti-VEGF treatment for sight-threatening diabetic macular oedema: A qualitative interview study
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala University.ORCID iD: 0000-0001-7721-8794
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.ORCID iD: 0000-0002-5892-9897
Uppsala University; Karolinska Institute and Hospital.ORCID iD: 0000-0002-8136-6340
Uppsala University/County Council of Västmanland; Västmanland County Hospital.
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2018 (English)In: Nordic journal of nursing research, ISSN 2057-1585, E-ISSN 2057-1593, Vol. 38, no 1, p. 11-17Article in journal (Refereed) Published
Abstract [en]

The diabetic complication macular oedema (DME) is a growing problem worldwide because of the increasing number of patients suffering from diabetes mellitus (DM). DME is treated with injections of anti-vascular endothelial growth factor (anti-VEGF) in the eye. This real-world study aimed to describe patients’ experiences before they received their first injection in the eye. Twenty-one men and women aged 49 to 86 years were interviewed. The interviews were analysed using qualitative content analysis. Two categories and an overall theme ‘to be at a crossroads and a crucial phase in life with an uncertain outcome’ were found. The participants expressed thoughts and concerns at different levels, practical concerns about the treatment procedure, and other existential thoughts regarding hope for improved visual acuity or fear of deterioration. Cooperation between eye clinics and diabetes clinics should be strengthened to clarify who is responsible for providing the information and support required by patients.

Place, publisher, year, edition, pages
2018. Vol. 38, no 1, p. 11-17
Keywords [en]
anti-VEGF treatment, diabetic macular oedema, qualitative research, visual impairment
National Category
Nursing
Research subject
Health and Welfare
Identifiers
URN: urn:nbn:se:du-25211DOI: 10.1177/2057158517709409OAI: oai:DiVA.org:du-25211DiVA, id: diva2:1110853
Available from: 2017-06-16 Created: 2017-06-16 Last updated: 2020-05-11Bibliographically approved
In thesis
1. Patient-reported and medical outcomes in patients treated for diabetic macular edema: A real-world longitudinal study
Open this publication in new window or tab >>Patient-reported and medical outcomes in patients treated for diabetic macular edema: A real-world longitudinal study
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background Diabetes mellitus can lead to complications, when the complication affects the eyes it is called retinopathy. This can affect the macula and lead to severe loss of vision, diabetic macular edema (DME). This condition has traditionally been treated with laser. However, in 2011, anti-vascular endothelial growth factor (anti-VEGF) injections in the eye were approved as a treatment for diabetic macular edema, and started to be used in eye clinics.

Aim The overall aim of this thesis was to describe patient-reported outcomes and medical outcomes (PRO) in people treated for diabetic macular edema in a real-world setting in a long-time follow-up study in Sweden.

Methods Participants were enrolled at two eye clinics at two county hospitals in Sweden between 2012 and 2014. Patient-reported outcomes were measured using a vision-specific questionnaire, the 25-question National Eye Institute Visual Function Questionnaire (NEI-VFQ-25) and a generic questionnaire, the Short Form-36 Health Survey (SF-36). Completed questionnaires, medical data such as visual acuity (EDRS), macula swelling (OCT) and social background characteristics were collected before treatment start, at one-year and four-year follow up points. The data was analyzed, descriptive statistics developed and comparative analyses were performed. Interviews were performed before treatment start and were analyzed using qualitative content analysis.

Results A total of 59 participants were included at baseline. The mean age was 69 years, with an equal gender distribution. At baseline, the participants scored a low general health with the vision-specific questionnaire. In total, 21 participants were interviewed, and a theme emerged of ‘being at a crossroads and a crucial phase in life with an uncertain outcome’. The participants expressed thoughts and concerns at different levels, including practical concerns about the treatment procedure and more existential thoughts about hope for improved visual acuity or fear of deterioration. The results at the one-year follow up showed that 30 patients had improved visual acuity and reported an improvement in several subscales in the NEI VFQ-25. The remaining 27 participants had no improvement in visual acuity or in the vision specific questionnaire. The four-year follow-up involved 37 people, and the result showed significant improvement in subjective near-vision activities and improved distance visual acuity.

Conclusion: Before treatment, the participants reported low general health and expressed concerns about the injection treatment and their vision. One year after treatment started, the results showed significant improvement in several NEI VFQ-25 subscales, decreased macula swelling and improved visual acuity. These positive results remained at the four-year follow-up point.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2020. p. 68
Keywords
Diabetes mellitus, Patient-reported outcomes, Retinopathy, Macular edema, Anti-VEGF treatment
National Category
Endocrinology and Diabetes
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-32652 (URN)978-91-513-0896-8 (ISBN)
Public defence
2020-04-28, Aula Gunnesalen, Ingång 10, Psykiatrins hus. Akademiska sjukhuset Uppsala., 13:00 (Swedish)
Opponent
Supervisors
Available from: 2020-05-11 Created: 2020-05-11 Last updated: 2020-05-11Bibliographically approved

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Granström, ThereseForsman, HenriettaBrorsson, Anna LenaLeksell, Janeth

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