Low patient engagement is associated with reduced health-related quality of life in adults with cyclic vomiting syndrome

Abstract

Introduction

Patient engagement, adaptation and self-management play a critical role in improving Health Related Quality of Life (HRQOL) and reducing health care utilization in chronic disorders. There is no data on the level of patient engagement in patients with cyclic vomiting syndrome (CVS); we thus sought to determine their level of engagement and its association with clinical covariates.

Methods

The Patient Activation Measure (PAM-13), a validated tool that measures the degree of patient engagement in their health was administered prospectively to patients with CVS. Data on demographics, health care utilization, and HRQOL (using the NIH PROMIS 10) were obtained. Patients were stratified into low engagement (PAM 1 & 2) and high engagement (PAM 3 & 4). The Fisher’s exact test and Wilcoxon rank-sum tests were used to identifying significant differences between the groups.

Results

Of 96 patients, 45% of patients had low levels of patient engagement. On multivariate analysis, low patient engagement was significantly associated with an increased number of CVS hospitalizations in the past year (aOR 1.26 [1.07, 1.54] p = .010), lower mental HRQOL scores (aOR 0.88 [0.78, 0.97] p = .022), current tobacco use (aOR 4.85 [1.24, 22.74] p = .031), and patients who were newly established in a specialized CVS clinic (aOR 44.40 [5.38, 70.02] p = .002).

Conclusion

Almost half of CVS patients demonstrate poor patient engagement, which is associated with poor outcomes. Identifying these patients and treatment in a specialized CVS center can potentially improve HRQOL, reduce health care utilization and improve overall healthcare outcomes.

Keywords:

• Cyclic vomiting
• patient engagement
• quality of life
• patient centered outcomes

Acknowledgements

We would like to gratefully acknowledge Mark Oium for his assistance with the use of REDCap.

Ethics approval and consent to participate

Ethics approval was obtained from the Institutional Review Board at the Medical College of Wisconsin (protocol number: 00021051). Written informed consent was obtained from all individual participants included in the study.

Author contributions

TV, GDV and AS was involved in study concept and design, data collection, manuscript preparation, and submission. LR was involved in data collection, manuscript preparation, and submission and did the statistical analysis with AS. All authors have read and approved the final manuscript.

Disclosure statement

Thangam Venkatesan is a consultant for and receives funding for study support from Takeda Pharmaceuticals. Alnylam Pharmaceuticals and Alexza pharmaceuticals. The other authors do not have any competing interests or disclosures.

Data availability statement

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Additional information

Funding

This was partly funded by a grant from CTSI NIH, Grant/Award Number: 8UL1TR000055.