Background
Improvements in care for inflammatory bowel diseases (IBD) could utilize the Chronic Care Model (CCM), 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 IBD cohort, (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 CCFA 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 CCM on a scale of 1–5, with 5 being highest perception of care. We used descriptive and bivariate statistics to assess relationships.
Results
945 participants completed the PACIC [576 Crohn’s disease, 339 ulcerative colitis, 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 correlation=0.12, p=0.003) but not medication adherence or disease activity.
Conclusions
Reports of chronic illness care in this IBD cohort are in the same range as other illnesses. PACIC is positively associated with quality of life, so efforts to align care with the CCM may benefit this population. Subjects who had more sub-specialty interactions reported an increased perception of care, indicating the important role of direct patient contact.