4.4 Article

Does patient engagement affect IBD patients' health-related quality of life? Findings from a cross-sectional study among people with inflammatory bowel diseases

Journal

HEALTH AND QUALITY OF LIFE OUTCOMES
Volume 19, Issue 1, Pages -

Publisher

BMC
DOI: 10.1186/s12955-021-01724-w

Keywords

Patient engagement; Health-related quality of life; Inflammatory bowel diseases; Healthcare; PHE-s®

Funding

  1. AMICI, a non-profit association of patients diagnosed with inflammatory bowel disease

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Patients diagnosed with inflammatory bowel disease often face unpredictability and poorer health-related quality of life. Patient engagement has been shown to be related to HRQoL among chronic patients. This study found that patient engagement significantly impacts HRQoL, particularly in systemic symptoms, bowel symptoms, social and psycho-emotional functioning.
Background Patients diagnosed with inflammatory bowel disease (IBD) are required to deal with the unpredictability of this clinical condition, which is associated with poorer health-related quality of life (HRQoL) compared to other clinical conditions. Patient engagement is currently demonstrated to relate with chronic patients' HRQoL, but few studies have been conducted among this population. Methods A cross-sectional study was conducted among 1176 IBD patients. Data were collected on participants' HRQoL (SIBD-Q) and patient engagement (PHE-s (R)). Regression analysis was used to examine the effects of patient engagement on HRQoL. Results About the half of the sample (47%) reported a low patient engagement level. 30% of the sample reported a low level of HRQoL. Psycho-emotional functioning resulted to be the aspect of HRQoL most impacted in the 37% of the sample. The regression model showed that PHE-s (R) is significantly related to the SIBD-Q total score (B = .585; p < .001; R squared = .343) and to the subscales' scores-systemic symptoms (B = .572; p < .001; R squared = .327), bowel symptoms (B = .482; p < .001; R squared = .232), social (B = .485; p < .001; R squared = .234) and psycho-emotional (B = .607; p < .001; R squared = .369) functioning. Conclusions Patients who are engaged in their IBD care pathway are more likely to report higher level of HRQoL, thus offering clues to potential therapeutic approaches to ameliorating IBD patients' wellbeing. As this is a modifiable factor, screening for patient health engagement levels, coupled with appropriate interventions, could improve care, and ultimately improve HRQoL outcomes among IBD patients.

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