Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort

Background:Improvements in care for inflammatory bowel diseases could use the Chronic Care Model, an evidence-based approach that has improved patient outcomes and reduced costs in other illnesses. Specific aims include (1) to explore patient perception of chronic illness care in a large inflammatory bowel disease cohort and (2) to determine whether demographic factors, medication adherence, quality of life, disease type, and activity were associated with perception of chronic illness care. Methods:We randomly selected 1000 participants from the Crohn’s and Colitis Foundation of America Partners Internet cohort to receive the validated Patient Assessment of Chronic Illness Care (PACIC) instrument, which measures patient experience with specific aspects of care congruent with the Chronic Care Model on a scale of 1 to 5, with 5 being highest perception of care. We used descriptive and bivariate statistics to assess relationships. Results:Nine hundred and forty-five participants completed the PACIC (576 Crohn’s disease, 339 ulcerative colitis, and 30 indeterminate or other; 74% female, mean age 45 [SD = 15.1], mean PACIC 2.4 [SD = 0.93]). Recent gastroenterologist visit, hospitalization, surgery, and current pouch/ostomy were all associated with significantly higher PACIC (P < 0.05). PACIC correlated positively with quality of life (Pearson's correlation = 0.12, P = 0.003) but not medication adherence or disease activity. Conclusions:Reports of chronic illness care in this inflammatory bowel disease cohort are in the same range as other illnesses. PACIC is positively associated with quality of life, so efforts to align care with the Chronic Care Model may benefit this population. Subjects who had more subspecialty interactions reported an increased perception of care, indicating the important role of direct patient contact.