Adherence to diabetic retinopathy care and barriers to service utilization in Nepal.

Background: Diabetes is an emerging public health problem in low- and middle-income countries. Diabetic Retinopathy (DR) is one of the leading causes of blindness in Nepal. Blindness due to DR can be avoided with timely treatment and regular follow up. This study aimed to assess adherence to DR care, and barriers for DR care service utilization among the patients with DR.

Methods: A mixed method study with a retrospective prospective design was conducted. In quantitative part, patients having DR were recruited retrospectively, follow up assessment done for one year to assess the adherence. In qualitative part, the focus group discussion among the patients with DR presented to the hospital from seven provinces of Nepal and national level Key Informant interview (KII) from eye care services and policy level was enrolled. Information regarding the DR care pathway, barriers, enablers, and possible solution for the DR adherence to care were collected. The details of qualitative part will be dealt separately. Patients with DR presented at primary, secondary and tertiary eye care center were enrolled from July 2020 to June 2021. Estimated sample size was 151 patients with DR. Patients were enrolled retrospectively, their one year follow up was assessed and they were also invited for detailed history and evaluation. Data was entered into Open Data Kit (ODK) software, then transferred to IBM SPSS version 20 for analysis.

Results: Total of 140 (92.7%) participants were available for detailed evaluation. Mean age was 59.5 years (SD: 10.0; range: 36 to 82 years). Two thirds (68%) were males. Two thirds (67.1%) were from tertiary eye care center. Mild and moderate non-proliferative DR (NPDR) accounted for 65.7%. Proliferative DR (PDR) (14.3%), and severe NPDR with clinically significant macular edema (CSME) comprised of 12.2%. Overall, 62 patients with DR (44.3%) adhered to DR care. Mild NPDR and PDR without CSME had the highest adherence to DR care each of 60%. DR adherence to care was 42.9% at primary, 40.6% at secondary and 45.7% at tertiary eye care center. Paid employment was statistically significant association with DR adherence (p = 0.011). Major barriers for DR adherence to care were lack of knowledge and awareness (62.8%), lack of accompanying person (28.2%), limited time (21.8%) and financial problem (15.4%).

Conclusions: DR adherence to care was found in less than half (44.3%) of the patients with DR. Paid employment was significantly associated with higher DR care adherence. Main barriers for DR adherence were lack of knowledge and awareness on DR, lack of accompanying person, and cost of the treatment. Community awareness campaigns on DR and enhance access to treatment is recommended to reduce blindness from DR.