Percepción de los pacientes con afección de retina sobre aspectos de la función visual y su manejo

Abstract

Background and objective

Age-related macular degeneration (AMD) and diabetic retinopathy (DR) are highly prevalent.

Objective

To explore perceptions of patients with AMD or DR about the impact of the disease and treatment on their daily living activities.

Materials and methods

Semi-structured interviews with a questionnaire developed from validated patient reported outcomes questionnaires. The questionnaire consisted of 19 questions about the disease and 9 about the treatment. The questions (items) were answered on a scale from 1 to 9. In addition, the patient interviewed was invited to make free comments on each question. Nine patients with AMD and 9 with DR were interviewed by videoconference or telephone call. A quantitative analysis of the responses and a qualitative analysis of the comments were carried out.

Results

The most relevant item for patients with AMD or DR is “Recognize people when they are nearby”, and “Read text in normal size font in a newspaper or book”, followed, in patients with AMD, by “Do things what you would like” and, in patients with DR, “Feeling frustrated by the vision problems”. Regarding the treatment, the most relevant aspects for both groups is that the treatment works and receiving appropriate information before and after the treatment. The qualitative comments were focused to the disease, the treatment, and to the role of doctors and the health system.

Conclusion

Quantitative responses and free comments can be useful to improve the care of patients with AMD or DR by physicians and the health system.