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.

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Crohn’s disease and ulcerative colitis patient-reported outcomes signs and symptoms for the remote management of inflammatory bowel disease during the COVID-19 pandemic

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-021-00323-z ◽

2021 ◽

Vol 5 (1) ◽

Author(s):

Sergio Pinto ◽

Erica Loddo ◽

Salvatore Paba ◽

Agnese Favale ◽

Fabio Chicco ◽

...

Keyword(s):

Ulcerative Colitis ◽

Inflammatory Bowel Disease ◽

Crohn’S Disease ◽

Bowel Disease ◽

Patient Reported Outcomes ◽

Signs And Symptoms ◽

Patient Reported ◽

Inflammatory Bowel ◽

Active Patients ◽

Active Disease

Abstract Background and aims The COVID-19 pandemic has led to a deep reorganization of hospital services including inflammatory bowel disease (IBD) units. In this situation, conversion of in-person routine follow-up visits into phone consultations might be necessary. Here we explored the feasibility of using the validated Crohn’s Disease (CD) or Ulcerative Colitis (UC) Patient-Reported Outcomes Signs and Symptoms (CD- and UC-PRO/SS) to collect data about abdominal symptoms (abdominal/S) and bowel signs and symptoms (bowel/SS) remotely. Methods CD- and UC-PRO/SS were collected during phone consultations and compared among patients with active and inactive disease. The effectiveness of therapeutic intervention in patients with active disease was assessed by PRO/SS variation. Results Twenty-one CD and 56 UC patients were evaluated by phone. Six (28.6%) CD and 15 (26.8%) UC patients were considered to have active disease. In CD the bowel/SS but not the abdominal/S module was significantly higher in active patients (mean bowel/SS 2.50 [SE ± 0.44] active vs 0.76 [SE ± 0.18] remission, p = 0.008, AUC 0.87; mean abdominal/S 1.11 [SE ± 0.38] active vs 0.24 [SE ± 0.13] remission, p = 0.066). UC-PRO/SS measures were significantly higher in active patients as compared to patients in remission (median bowel/SS 1.63 [SE ± 0.24] active vs 0.33 [SE ± 0.04] remission; p < 0.0001, AUC 0.91; mean abdominal/S 1.03 [SE ± 0.24] vs 0.37 [SE ± 0.12]; p = 0.009, AUC 0.71). Therapy was escalated in 12 patients (3 CD and 9 UC) due to disease relapse. Therapy escalation resulted in the reduction of PRO/SS as evaluated at the subsequent phone consultation. Conclusions PRO/SS might represent a feasible tool to evaluate disease activity and therapy outcome in IBD patients during periods of limited access to outpatient clinics.

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Limited Health Literacy Is Associated With Worse Patient-Reported Outcomes in Inflammatory Bowel Disease

Inflammatory Bowel Diseases ◽

10.1093/ibd/izy237 ◽

2018 ◽

Vol 25 (1) ◽

pp. 204-212 ◽

Cited By ~ 3

Author(s):

Lauren K Tormey ◽

Jason Reich ◽

Yu Sarah Chen ◽

Arush Singh ◽

Zachary Lipkin-Moore ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Health Literacy ◽

Bowel Disease ◽

Patient Reported Outcomes ◽

Limited Health Literacy ◽

Patient Reported ◽

Inflammatory Bowel ◽

Limited Health

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The Development and Initial Findings of A Study of a Prospective Adult Research Cohort with Inflammatory Bowel Disease (SPARC IBD)

Inflammatory Bowel Diseases ◽

10.1093/ibd/izab071 ◽

2021 ◽

Author(s):

Laura E Raffals ◽

Sumona Saha ◽

Meenakshi Bewtra ◽

Cecile Norris ◽

Angela Dobes ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Clinical Data ◽

Bowel Disease ◽

Patient Reported Outcomes ◽

Data Entry ◽

The United States ◽

Predictors Of Response ◽

Patient Reported ◽

Inflammatory Bowel ◽

Reported Data

Abstract Background Clinical and molecular subcategories of inflammatory bowel disease (IBD) are needed to discover mechanisms of disease and predictors of response and disease relapse. We aimed to develop a study of a prospective adult research cohort with IBD (SPARC IBD) including longitudinal clinical and patient-reported data and biosamples. Methods We established a cohort of adults with IBD from a geographically diverse sample of patients across the United States with standardized data and biosample collection methods and sample processing techniques. At enrollment and at time of lower endoscopy, patient-reported outcomes (PRO), clinical data, and endoscopy scoring indices are captured. Patient-reported outcomes are collected quarterly. The quality of clinical data entry after the first year of the study was assessed. Results Through January 2020, 3029 patients were enrolled in SPARC, of whom 66.1% have Crohn’s disease (CD), 32.2% have ulcerative colitis (UC), and 1.7% have IBD-unclassified. Among patients enrolled, 990 underwent colonoscopy. Remission rates were 63.9% in the CD group and 80.6% in the UC group. In the quality study of the cohort, there was 96% agreement on year of diagnosis and 97% agreement on IBD subtype. There was 91% overall agreement describing UC extent as left-sided vs extensive or pancolitis. The overall agreement for CD behavior was 83%. Conclusion The SPARC IBD is an ongoing large prospective cohort with longitudinal standardized collection of clinical data, biosamples, and PROs representing a unique resource aimed to drive discovery of clinical and molecular markers that will meet the needs of precision medicine in IBD.

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