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

Abstract

Background

Digital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up consultations and increased patient self-management. However, implementation issues occur and studies indicate patients may have concerns, particularly regarding having fewer face-to-face consultations. This study aims to explore patients’ perspectives of use and non-use of digital patient reported outcomes and to understand the mechanisms underpinning patient reluctance to engage with this health technology.

Results

Sixteen patients with inflammatory bowel disease at a regional hospital in Denmark were interviewed about their experiences of, and perspectives on, digital patient reported outcomes. A certain level of eHealth literacy was found to be a fundamental condition for use, while other factors were barriers or facilitators for use of digital PROs. Patients’ main concerns were about potential consequences for their care and relationship with the clinic. Most patients in stable remission were satisfied with the hospital being a “life-line” if their symptoms worsened, and perceived digital patient reported outcomes to be an efficient tool to establish that “life-line”. Patients with severe symptoms and a high degree of emotional distress related to their disease valued the potential for digital patient reported outcomes to increase their clinicians’ focus on mental health and extra-intestinal symptoms.

Conclusion

This study found that if patients had sufficient digital literacy, they perceived digital patient reported outcomes to be a useful replacement for face-to-face consultations. However, they were concerned about digital patient reported outcomes’ effect on the patient–clinician relationship and its ability to detect worsening of symptoms. These concerns may be mitigated by good patient–clinician relationships, and the option for patients to maintain direct telephone contact with their gastroenterology specialist.

Supplementary Information

The online version contains supplementary material available at 10.1186/s41687-021-00366-2.

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.

Supplementary Information

The online version contains supplementary material available at 10.1186/s41687-021-00366-2.