Study participants – We’re looking for you wanted to answer questions about lifestyle habits and quality of life

About the study

Leber’s hereditary optic neuropathy (LHON) is a rare genetic disease caused by congenital mitochondrial mutations. In Finland and Denmark, the incidence has been calculated at about 2 per 100,000 inhabitants. It is not known how many people are infected with the disease in Sweden, but the corresponding numbers, as in the case of Denmark and Finland, mean about 200 infected people.

When mitochondria do not function as they should, the ability of cells to produce energy is affected. Any predisposed carrier who carries the mutations is at risk of developing the disease in a course that is often very rapid and can lead to severe and permanent visual impairment. Today, there is limited knowledge about carriers who are most at risk of developing the disease.

Well-functioning vision is important to quality of life. In a Swedish study, the relationship between vision-related quality of life and visual function among patients with another disease was investigated. The study showed that there is a relationship between this and that and central vision, that is, detail and color vision, which had the strongest impact on the quality of life. Visual impairment caused by LHON is strongly associated with central visual impairment.

Smoking has been shown to be a risk factor for vision loss in this group of patients, and there is a weaker but also possible link to excessive alcohol consumption. No study has been conducted regarding lifestyle habits and quality of life in LHON patients in Sweden. Since lifestyle habits are linked to the development of the disease, it would be useful to conduct a survey in Sweden to see if interventions are needed. It would also be useful to examine the potential psychological impact of, and what it means to know to be a waqf holder, in order to determine whether there is a widespread need for any support function for this group.

The increase in knowledge about the life habits and well-being of waqf-holders in Sweden has not been identified before. Living with the risk of severe vision impairment can lead to anxiety and depression. Today, there is no care program for how to treat people with this condition or inform them about care. Mapping can answer what a potential need looks like.

Who can participate?

The study is intended for everyone 16 years of age and older.

How does that happen?

You are answering a digital survey. It takes about 15 minutes to answer all questions. It is divided into sections and you can take a break between them if you like

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Click on the link below and you will be taken to the registration and you can then fill out the survey directly