Assessment of Inflammatory bowel disease (IBD) is complicated by day-to-day variation in symptoms. Management is further challenged by incomplete symptom recall and lack of data about how patients are feeling between visits. We designed the Orchestra smartphone app and web interface to allow patients to work with their providers to track symptoms between visits and learn about what improves their symptoms. This pilot study assessed variation in symptoms and quality of life (QOL) and patient recall of symptoms.Methods:
We recruited pediatric patients with IBD to pilot-test the Orchestra app. Inclusion required symptoms that the patient felt were attributable to their IBD, and having a mobile smart phone. Patients self-identified symptoms most relevant to their experience and also collected standard Patient Reported Outcome Measurement Information System (PROMIS) fatigue and pain measures of QOL. Daily messages via app prompted patients to respond rating their symptom levels. Weekly PROMIS measures were assessed within the app. We assessed patient recall of symptoms and the association between daily symptoms and PROMIS QOL measures. Study duration was 90 days per patient. Patients were blinded to data. Adherence was measured as the proportion of days with any data reported.Results:
Sixteen patients have been enrolled to date, but 4 withdrew or were lost to follow-up before starting data collection. Twelve patients collected data over a total of 590 patient-days. In aggregate, 11 different symptoms were tracked (average 2 per patient). The most frequent symptoms selected for tracking by patients included: Daily stools (n = 7); abdominal pain (n = 7); sleep duration (n = 6); fatigue (n = 5); hunger (n = 5); early satiety (n = 4); stool consistency (n = 4); fecal urgency (n = 2) urgent stools (n = 2); bloody stools (n = 1); and nausea (n = 1). The daily adherence per question ranged from 7% to 68%. Adherence per patient ranged from 6% to 87%. Daily abdominal pain was associated with daily number of bowel movements (R = 0.71; P < 0.0001) and with fatigue (R = 0.49; P < 0.0001). Early satiety was associated with nausea (R = 0.46; P = 0.019) and with fatigue (R = 0.37; P = 0.054). Overall recall of tiredness (mean daily symptom score from prior week) correlated with PROMIS fatigue (R = 0.88; P < 0.0001) and daily abdominal pain recall correlated with PROMIS pain (R = 0.94; P < 0.0001). However there was great variation in recall among individuals, with intra-subject correlations ranging from R = −0.38 (P = 0.41) to R = 0.66 (P = 0.22).Conclusions:
For pediatric IBD patients, daily symptom tracking via mobile app messaging is feasible, though adherence was highly variable. Symptom recall was variable between individuals, with some having strong recall and others poor recall. Weekly PROMIS survey via app is an improvement over prior version with emailed web-link. Tracking symptoms via daily messaging helped to illustrate day-to-day symptom variation and revealed limitations of symptom recall.