Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

Abstract

Plain English summary ‘Digital patient reported outcomes’ refer to systems by which health professionals collect health information from patients between consultations, mostly via self-completed online questionnaires. This approach aims to support treatment and disease management, and reduce avoidable face-to-face consultations between doctor and patient. However, patients may have concerns about using digital systems to communicate with their clinicians, particularly regarding having fewer face-to-face consultations. To find out more, we interviewed sixteen patients at an Inflammatory Bowel Disease outpatient clinic in Denmark, where digital Patient Reported Outcomes have been used since 2017. We found out that patients needed to have enough familiarity with technology to be able to use these online systems. Patients were worried about how this new way of communicating with the clinic affected their care and their relationship with their doctors and nurses. People with Inflammatory Bowel Disease can have long periods of time with very little disease activity, and in these stable periods, a lot of patients found that a digital Patient Reported Outcomes system was a good way to stay in touch with the clinic and keep reporting their symptoms online– as long as they still had the possibility of contacting the clinic by telephone if needed. During disease flare-ups, patients believed that digital patient reported outcomes’ could be used to give broader insight into their health situation, and trusted their clinicians to use their self-reported data to improve their care.

Keywords

• Digital patient reported outcomes
• Digital health
• eHealth