Patient Perception of Chronic Illness Care Is Associated with Quality of Life in Inflammatory Bowel Diseases

Abstract

Purpose: Inflammatory bowel diseases (IBD) are chronic and costly illnesses. Improvements in care could build on the Chronic Care Model (CCM), an evidence-based approach that has improved patient outcomes in other illnesses. We sought to explore patient perception of care, as aligned with the CCM, in a large, internet-based IBD cohort (CCFA Partners). We also sought to determine whether demographic factors, medication adherence, quality of life, and disease type and activity were associated with perception of chronic illness care. Methods: CCFA Partners is an ongoing internet cohort study of over 10,000 patients with IBD. We randomly selected 1000 respondents to receive the validated Patients' Assessment of Chronic Illness Care (PACIC) instrument as part of a 6 month follow-up survey. PACIC measures patient experience with specific actions or aspects of care congruent with the CCM, and is scored from 1 to 5, with 1 being the lowest perception of CCM-congruent care, and 5 being the highest. We used descriptive statistics, bivariate comparisons and Pearson correlations to assess relationships between PACIC scores and other measures. Results: A total of 945 participants completed the PACIC [576 Crohn's disease (CD), 339 ulcerative colitis (UC) or indeterminate colitis, 74% female, mean age 45 (SD=15.1)]. The mean PACIC score was 2.4 (SD=0.93). Gastroenterologist visit, hospitalization, and surgery (within 6 months) and current pouch or ostomy were associated with significantly higher PACIC scores (p<0.05). There was no significant association between PACIC and demographic factors (gender, age, education), disease type (CD vs. UC), primary care visit within 6 months or health care setting (academic vs. private practice). PACIC positively correlated with quality of life, as measured by the Short IBD Questionnaire (Pearson correlation=0.119, p=0.003). PACIC was not correlated with medication adherence or disease activity. Conclusion: Overall, reports of chronic illness care in this cohort of IBD patients were in the same range of patients with other chronic illnesses. As PACIC scores are positively associated with quality of life, efforts to align care with the CCM may benefit this population. Frequency of health care subspecialty interactions, such as gastroenterologist visit, surgery, hospitalization and current pouch or ostomy increased perception of CCM care, indicating an important role for direct patient contact in chronic illness care.