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

• Published in: Health and quality of life outcomes Vol. 19; no. 1; pp. 77 - 9
• Main Authors: Barello, Serena, Guida, Elena, Leone, Salvatore, Previtali, Enrica, Graffigna, Guendalina
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 07-03-2021; BioMed Central; BMC
• Subjects: Adult; Age; Care and treatment; Chronic illnesses; Cross-Sectional Studies; Demographic aspects; Diagnosis; Disease management; Emotions; Employment; Female; Health aspects; Health-related quality of life; Healthcare; Humans; Inflammatory bowel disease; Inflammatory bowel diseases; Inflammatory Bowel Diseases - psychology; Influence; Intestine; Likert scale; Low level; Male; Middle Aged; Patient compliance; Patient engagement; Patient outcomes; Patient Participation - psychology; Patients; Personality traits; PHE-s; Population studies; Quality of Life; Quantitative psychology; Questionnaires; Regression analysis; Regression models; Signs and symptoms; Sociodemographics; Statistical analysis; Surveys and Questionnaires; Variables; Italy; Health-related quality of life; Healthcare; Inflammatory bowel diseases; PHE-s; Patient engagement
• ISSN: 1477-7525; 1477-7525
• DOI: 10.1186/s12955-021-01724-w

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.
A cross-sectional study was conducted among 1176 IBD patients. Data were collected on participants' HRQoL (SIBD-Q) and patient engagement (PHE-s®). Regression analysis was used to examine the effects of patient engagement on HRQoL.
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® 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.
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.