Establishing peer support groups for diabetic retinopathy in India: Lessons learned and way ahead.

Purpose: Complications of diabetes mellitus (DM) are a public health problem globally. DM management entails medication and self-management. Peer support groups (PSGs) can improve self-management and promote healthy behavior. The objectives of this study were to design, establish, and evaluate two PSG models for people who had been screened for diabetic retinopathy to assess self-reported lifestyle changes, satisfaction with meetings and barriers to attendance. Methods: Peer groups were established using a pre-tested facilitator's guide in 11 locations in 3 states. Group members were oriented on diabetes management and lifestyle changes to improve control. Attendees' experiences were ascertained through semi-structured interviews and self-report. Data were analyzed using MS Excel 2017. Results: Eleven PSGs were established in 3 states, in 10 community health centers and one eye hospital. 53 sessions were held and 195 people attended on 740 occasions. Lifestyle changes most frequently reported between first and second visits were taking medication regularly and dietary modification. Attendance declined in the eye hospital group. 83% of CHCs members were satisfied or very satisfied compared with 37% of eye hospital (EH) members. The barriers included distance and lack of family support. Conclusion: PSGs held in CHCs were more sustainable than those in an eye hospital, and group members were more satisfied and more likely to report positive lifestyle changes. Findings were self-reported and hence a major limitation for the study. Further studies should focus on obtaining objective measures of control of diabetes and risk factors for diabetic retinopathy from members attending peer support groups in CHCs.

1800 121 2096 Diabeteshelp - A toll free helpline for people with diabetes.

People with diabetes mellitus require long-term care that is timely, patient-centered, community-based and sustainable. Any deficiency in care increases the risk of developing complications like Diabetic Retinopathy. Patients or their carers also have numerous questions and doubts during this long-period of care. This increases the pressure on health systems that are struggling with a lack of skilled human resources. One option is to provide counseling support using a dedicated helpline. Over the last five years a major initiative to tackle visual impairment due to diabetes was rolled out in India by the Public Health Foundation of India supported by the Queen Elizabeth Diamond Jubilee Trust, UK. One component of the initiative was establishing a toll-free helpline (1800 121 2096) to address the lack of awareness and to empower people with diabetes in Telangana and Andhra Pradesh states in India. Over a 1-year period, the helpline received 4406 calls, making a case for a national service for people with diabetes.