Patient-reported symptoms are a more reliable predictor of the societal burden compared to established physician-reported activity indices in inflammatory bowel disease: a cross-sectional study

ABSTRACT

Background

The societal burden of inflammatory bowel diseases (IBD) is not well documented, and further studies are needed to quantify the costs of the disease state. Thus, the aim was to estimate the societal burden and identify its predictors.

Methods

A cross-sectional questionnaire-based study complemented by objective data from patient medical records was performed for patients with Crohn’s disease (CD) and ulcerative colitis (UC).

Results

We analyzed data from 161 patients (CD: 102, UC: 59). The overall work impairment reached 15.4%, 11.2% vs. 28.8% without/with self-reported symptoms (p = 0.006). Daily activity impairment was 19.3%, 14.1% vs. 35.6% (p < 0.001). The disability pension rate was 28%, 23% vs. 44% (p = 0.012). The total productivity loss due to absenteeism, presenteeism, and disability amounted to 7,673 €/patient/year, 6,018 vs. 12,354 €/patient/year (p = 0.000). Out-of-pocket costs amounted to 562 €/patient/year, 472 vs. 844 €/patient/year (p = 0.001). Self-reported symptoms were the strongest predictor of costs (p < 0.001).

Conclusion

We found a high societal burden for IBD and a significant association between patient-reported disease symptoms and work disability, daily activity impairment, disability pensions, and out-of-pocket costs. Physician-reported disease activity is not a reliable predictor of costs except for out-of-pocket expenses.

KEYWORDS:

• absenteeism
• Crohn’s disease
• out-of-pocket costs
• presenteeism
• productivity costs
• ulcerative colitis

Acknowledgments

The authors thank Thomas O. Secrest (Charles University in Prague, Czechia) for proofreading of the manuscript, and Michal Decker (Negativ s.r.o., Prague, Czechia) for graphical support.

Declaration of interest

B. Decker received the support of the Specific University Research (MUNI/A/1440/2021) provided by the Ministry of Education, Youth and Sport of the Czech Republic (MŠMT). K. Cerna received the support of the foundation IBD-COMFORT. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Author contributions

B.Decker: study conception and design, data analysis and interpretation, writing up of the first draft of the paper. J.Tuzil: study design, data analysis and interpretation. M.Lukas, K.Cerna, and M.Bortlik: patient recruitment, data collection. B.Velackova: data analysis, material preparation. B.Pilnackova: administrative back-up, material preparation, data collection. T.Dolezal: study conception and design, supervision of the study. All authors revised and approved the final manuscript.

Availability of data and material

The datasets generated and analyzed during the current study are available from the corresponding author upon request.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/17474124.2023.2161047

Additional information

Funding

The publication was written with the support of the Specific University Research (MUNI/A/1440/2021) provided by the Ministry of Education, Youth and Sport of the Czech Republic (MŠMT). The clinical work was supported by the foundation IBD-COMFORT.