By 2015, 30.3 million American people or 9.4% of the US population had diabetes. Diabetes management can be challenging as patients experience evolving information needs around complex lifestyle and medical decisions. As patients’ condition progresses, they make day-to-day self-care decisions by identifying or evaluating choices. These choice inquiries along the decision-making process present a valuable research opportunity to uncover and support their decisional needs. As an increasing number of patients visit online health communities (OHCs) to seek answers and exchange information, OHC data provide a platform to study patient decisional needs through choice inquiries. To identify decisional needs and their context, I first conducted a qualitative content analysis of 1000 diabetes OHC posts and found choice inquiries occurred in approximately 20% of member-initiated posts. Medication and treatment, blood sugar control, and food were the most popular topics members made decisions upon. The top list of triggers for posting choice inquiries included having blood sugar problems, filling information gaps, forming specific goals, and resolving information conflict. These results contributed in filling the research gap in understanding chronic illness self-care decision-making.
Second, to understand how choice inquiries are supported, I examined response metrics and found choice inquiries received fewer responses than non-choice inquiries. This finding helped us understand that those wishing to make decisions might have not received adequate information. Thus there is an opportunity to provide appropriate help, such as clinical expertise, to inform such choice inquiries.
Though OHCs provide informational and emotional support coming from peer patients, such support can be limiting for choice inquiries in terms of lacking input from clinical experts. Thus, my last aim was to enhance and diversify information in the patient decision-making context. To this end, I developed an intervention to incorporate clinical expertise into peer patient conversations, and tested the impact of the intervention through psychosocial measures, clinical indicators, and perceived usefulness. Psychosocial outcomes showed significant improvement for all participants in the study, but the intervention did not produce a significant improvement for the test group, compared to the control group. The scarcity of compatible clinical data prevented clinical evaluation of the study. The test group favored the information received compared to the control group, with statistical significance detected in 8 out of 10 information assessment metrics.
The results of the research deepened our understanding of patient self-care decision-making and provided insight into the day-to-day context and challenges experienced by patients. The findings generated directions to improve information quality to better support the decisional needs of chronic illness patients.