Aim

Utilizing patients’ experiences to improve health-service quality is well recognized. As young adults with Type 1 diabetes are at risk of poor health outcomes and high attrition rates from health-services, we explored their experiences of diabetes health-services delivery.

Methods

We designed a self-reported survey for Australian adults aged 18-35 years with Type 1 diabetes (n=150). Participants were recruited from advertisements in diabetes consumer-organization media. Respondents were asked about their experiences of diabetes education, shared decision-making and health service access. To complement the survey, we interviewed 36 respondents. Quantitative data were analysed using SPSS 20; qualitative data using NVivo 9.

Results

Of survey respondents, 96.7% sought further diabetes education: 73.3% sourced more diabetes education themselves than clinicians provided; 60% were satisfied with the level of diabetes education provision by clinicians; and most clinicians consulted were rated as participating in all surveyed facets of shared decision-making. Few respondents (1.3%) had consulted all recommended multi-disciplinary clinicians.

Those interviewed identified diabetes education issues related to: the pedagogy of diabetes education; the gap between theoretical diabetes education and the practical reality; and autonomous and peer-led diabetes education. Participants sought clinicians who practiced shared decision-making. Clinician failure to engage in shared decision-making was cited as a reason to terminate clinician services. Disincentives for recommended health-service uptake also included time constraints; receiving conflicting advice; health-service inaccessibility; variation in service standards; cost constraints; clinician failure to refer to other clinicians; and limited opportunity to develop a therapeutic relationship.

Conclusion

Our findings indicate there are opportunities to improve clinician-led diabetes education, to further enhance uptake of shared decision-making and to align health service access with the needs and preferences of this cohort. The results provide evidence for the potential value of patient engagement in quality improvement and health-service re-design.