Factors affecting response rates in patient-reported outcome measures in inflammatory bowel disease

Inflammatory bowel diseases, Crohn’s disease (CD) and ulcerative colitis (UC), are associated with reduced quality of life (QoL). By using questionnaire tools called patient-reported outcome measures (PROM), patients’ well-being and health-status can be measured. The aim of this study was to identify subgroups at risk of being missed in questionnaire monitoring and assess QoL and variability of responses over time. CD or UC, age ≥18 years, receiving biological treatment subcutaneously or intravenously, 01 August 2018 to 31 January 2020, at Karolinska University Hospital, were included. Patients completed standardised and validated questionnaires for QoL-measurements; Short Health Scale (SHS) and EuroQol 5-dimension-index (EQ5D). 412 patients, 287 (70%) Crohn’s disease, 125 (30%) ulcerative colitis, 267 (65%) males, median age: 33 (range 18–85). Patients receiving subcutaneous treatment completed PROM questionnaires significantly less frequently compared with intravenous treatment (multiplicative factor 6.5, 5.7–7.5 95% CI). Reduced QoL was seen for intravenous treatment (multiplicative factor 2.0, 0.5–3.5 95% CI) and active disease (multiplicative factor −4.0, −6.1 to −1.9 95% CI). Greater variability in responses was seen in active disease, anaemia, faecal calprotectin ≥ 250 mg/kg. Patients receiving subcutaneous treatment, equivalent to home-based treatment, completed significantly fewer PROM questionnaires and are therefore less monitored. It is therefore important to offer different modes of questionnaire administration when monitoring a heterogeneous patient population especially as we see a shift towards oral forms of therapy. Patients receiving subcutaneous treatment, equivalent to home-based treatment, completed significantly fewer patient-reported-outcome-measures (PROM) questionnaires and are therefore less monitored. This study highlights differences in PROM response rates between patients with subcutaneous (home-based) and intravenous (hospital-based) administration, indicating a potential lack of PROM data for home-based treatments. As subcutaneous and oral therapies become more common in inflammatory bowel diseases treatment, this has significant implications for future PROM monitoring. PROMs should be available in various modalities to ensure comprehensive coverage of all patient subgroups. Inflammatory bowel diseases, Crohn’s disease (CD) and ulcerative colitis (UC), are associated with reduced quality of life (QoL). Questionnaire tools, such as patient-reported outcome measures (PROM), are used to measure patients’ well-being and health-status.Patients receiving subcutaneous treatment completed significantly fewer PROM questionnaires and are therefore less monitored. Patients with active disease had lower QoL and more variability in PROM responses; indicating the need for intensified PROM monitoring for active disease.It is important to offer different modes of questionnaire-administration, such as electronic forms, when monitoring a heterogeneous patient population especially as we see a shift towards oral forms of therapy. Inflammatory bowel diseases, Crohn’s disease (CD) and ulcerative colitis (UC), are associated with reduced quality of life (QoL). Questionnaire tools, such as patient-reported outcome measures (PROM), are used to measure patients’ well-being and health-status. Patients receiving subcutaneous treatment completed significantly fewer PROM questionnaires and are therefore less monitored. Patients with active disease had lower QoL and more variability in PROM responses; indicating the need for intensified PROM monitoring for active disease. It is important to offer different modes of questionnaire-administration, such as electronic forms, when monitoring a heterogeneous patient population especially as we see a shift towards oral forms of therapy.