Optimising the delivery of Diabetes Distress informed care for its prevention, detection, and management in adults with type 1 diabetes: a hybrid effectiveness – implementation programme (D-stress study)

Almost half of adults with type 1 diabetes (T1D) experience high levels of diabetes distress. Diabetes distress is experienced when a person feels burdened or overwhelmed by living with diabetes. Diabetes distress makes it more difficult to deal with diabetes and reduces quality of life. Currently no effective treatments are available by the UK National Health Service (NHS). Researchers in the USA and Denmark have developed and evaluated treatments for detecting, managing, and preventing diabetes distress. Although these are proving effective, they are not used in the UK. These international treatments will combine to form the ‘D-stress’ programme within the UK, NHS. The main aim will be to reduce diabetes distress, improve blood sugar levels, management of diabetes and quality of life of those with T1D. Research questions What is the best way to deliver diabetes distress care for the detection, prevention, and management in adults with T1D within the NHS? Design and method To answer this, we propose four linked studies: Study 1 develops and adapts D-stress from the existing diabetes distress international treatments. This will include reviewing the relevant literature, and consulting people with diabetes and healthcare teams through co-design workshops. Study 2 tests if D-stress works as planned in practice and if our methods for data collection are acceptable. Sixty adults with T1D using or willing to use continuous blood sugar monitors will participate in a mini version of the full study. Adults with T1D and healthcare professionals will be interviewed about their experiences of D-stress and how it can be improved. PGfAR Competition 40 Stage 1 Study 3 tests whether D-stress reduces diabetes distress, improves blood sugar levels and self-management, and whether this is achieved in an economical way. By using a full-scale study of 20 diabetes services across the UK, and recruiting 600 adults with T1D using or willing to use continuous blood sugar monitors. Study 4 examines how D-stress benefits adults with T1D, when they benefit or do not benefit, and if they do not, why. Interviews and observations will be taken with study participants (adults with T1D, healthcare professionals). Patient and Public Involvement (PPI) Our PPI co-applicant has provided input in the D-stress programme and will have a lead role in involvement activities. Seven PPI group members will participate across all studies to advise and support the research delivery, plus a dissemination plan. A PPI members’ workshop resulted in including an online diabetes distress questionnaire for the main study, and an NHS clinical psychologist has been included as co-applicant. Dissemination We will inform the public and patients through Diabetes UK newsletters, webpages, videos and social networking, visit diabetes clinics to introduce study findings to support D-stress continuation in practice, and publish five manuscripts.