Living with nystagmus: a qualitative study.

Area of Science:

• Ophthalmology
• Quality of Life Research
• Patient Experience Studies

Background:

• Nystagmus is an involuntary eye movement condition.
• The daily life impacts of nystagmus are not fully understood.
• Previous research has not extensively explored patient-reported outcomes.

Purpose of the Study:

• To identify specific aspects of daily living affected by nystagmus.
• To understand the lived experiences of individuals with nystagmus.
• To gather qualitative data on the challenges faced by nystagmus patients.

Main Methods:

• Conducted semistructured interviews with 21 participants diagnosed with acquired or infantile nystagmus.
• Employed purposive sampling for participant recruitment.
• Utilized constant comparative technique based on grounded theory for transcript analysis.

Main Results:

• Identified six domains adversely affected: visual function, movement, social integration, self-perception, future outlook, and relationships.
• Participants reported distress related to cosmetic appearance, driving restrictions, occupational limitations, and reliance on others.
• Nystagmus universally impacted all aspects of everyday life, causing significant distress.

Conclusions:

• Nystagmus profoundly and universally negatively impacts quality of life.
• Findings highlight the need for a nystagmus-specific quality of life assessment tool.
• Experiences share similarities with strabismus, particularly regarding cosmetic concerns.