The impact of diabetic retinopathy: perspectives from patient focus groups.

Kleins Lab // Publications // Aug 01 2004

PubMed ID: 15249536

Author(s): Coyne KS, Margolis MK, Kennedy-Martin T, Baker TM, Klein R, Paul MD, Revicki DA. The impact of diabetic retinopathy: perspectives from patient focus groups. Fam Pract. 2004 Aug;21(4):447-53. PMID 15249536

Journal: Family Practice, Volume 21, Issue 4, Aug 2004

BACKGROUND Diabetic retinopathy (DR) affects 50-85% of people with diabetes and may result in visual impairment or blindness.

OBJECTIVE This exploratory qualitative research was conducted to evaluate the symptom experience of DR, its impact on daily activities and health-related quality of life (HRQL), and the applicability of two vision-specific questionnaires.

METHODS Four focus groups (n = 15) were conducted with people with DR to explore their symptom experience and the impact on functioning and HRQL. Adults with type I or II diabetes and mild, moderate or severe non-proliferative DR (NPDR) or proliferative DR (PDR) were recruited. Content analysis and descriptive statistics were used to analyse the data.

RESULTS Participants described a range of symptoms and impact. Difficulty driving, especially at night, and trouble reading were noted with all levels of severity. Participants with PDR and decreased visual acuity have foregone many other important life aspects such as work, reading and sports. For the severely affected, diabetic care activities (e.g. exercising, reading nutritional labels, preparing insulin injections and glucose testing) were difficult to accomplish. Loss of independence, especially mobility and increased fear of accidents, had a profound impact on social activities. For those patients who had not experienced other complications of diabetes, the threat of vision loss was the most devastating.

CONCLUSION The loss of independence and mobility associated with decreased visual functioning and visual loss were major concerns. Moderate, severe NPDR and PDR associated with visual impairment have a significant impact on HRQL, particularly in the areas of independence, mobility, leisure and self-care activities.