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

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.