Conference Coverage

High patient activation linked to clinical remission in IBD



High levels of patient activation are associated with clinical remission in patients with inflammatory bowel disease, results from a longitudinal analysis suggest.

“Patient activation is defined as understanding one’s role in the health care process and having the knowledge, skills, and confidence to manage one’s health,” Edward L. Barnes, MD, MPH, said at the Crohn’s & Colitis Congress, a partnership of the Crohn’s & Colitis Foundation and the American Gastroenterological Association. “It emphasizes an individual’s willingness to take independent actions and manage their own health care. In many chronic conditions, higher levels of patient activation have been linked to improved health outcomes, better patient experiences related to health care, higher quality of life scores, and lower overall health care costs.”

Dr. Edward L. Barnes of the division of gastroenterology and hepatology at the University of North Carolina at Chapel Hill

Dr. Edward L. Barnes

According to Dr. Barnes, of the division of gastroenterology and hepatology at the University of North Carolina at Chapel Hill, patient activation has not been extensively investigated in patients with IBD. Patients with IBD have indicated an increasing desire to be involved in their care. In a cross-sectional mail survey of patients in the VA system, patient activation was highly correlated with health-related quality of life (J Gen Intern Med 2009;24[7]:809-15).

A 13-question survey known as the Patient Activation Measure from Insignia Health can be used to assess patient activation (Health Serv Res 2005;4096 Pt 1:1918-30). This measure is scored from zero to 100 and allows the categorization of individuals into four levels of activation. In level 1, the patient believes an active role is important. In level 2, the patient has the confidence and knowledge to take action. In level 3 the patient takes action, and in level 4, the patient stays the course during stress.

Dr. Barnes and his associates set out to evaluate the demographic and clinical characteristics associated with higher patient activation in patients with IBD. A secondary aim was to determine whether higher levels of patient care are associated with decreased frequency of relapse or flare. They performed a prospective cohort study of individuals who participated in the Crohn’s and Colitis Foundation’s Partners Internet cohort. Consecutive participants who completed a Partners survey between June 2, 2016, and Jan. 5, 2017, were asked to complete the Patient Activation Measure as an optional module. Clinical remission was defined via the short Crohn’s Disease Activity Index (a score of 150 or lower) and the Simple Clinical Colitis Activity Index (a score of 2 or less).

High patient activation was defined as level 3 or level 4 on the Patient Activation Measure, and multivariable logistic regression was used to evaluate predictors of patient activation level and the relationship between level of patient activation and clinical remission. All covariates included in the multivariable analyses were identified a priori based on prior association with patient activation or clinical disease activity in IBD.

The survey was administered to 1,486 participants. Of these, 1,082 (73%) completed follow-up surveys, including assessments of disease activity. The mean age of respondents was 44 years, 74% were female, 5% were nonwhite, and 77% reported their highest education level as college or graduate school. The mean disease duration was 14.4 years.

Patients with less than a 12th grade education were significantly associated with a decreased odds of having patient activation (adjusted odds ratio 0.25 [95% confidence interval, 0.07-0.94]). Although nonsignificant after adjustment for potential confounders, nonwhite race was also associated with decreased odds of high patient activation (aOR 0.64). Meanwhile, there was a trend among those who graduated from college or graduate school in predicting high patient activation level (aOR of 1.44 and 1.36, respectively).

After adjustment for race, educational status, time since diagnosis, smoking status, and history of IBD-related surgery among patients with Crohn’s disease, patients with higher patient activation were more likely to be in clinical remission at follow-up for both Crohn’s disease (71% vs. 62%; aOR of 1.60 [95% CI, 1.00-2.57], P = .05) and ulcerative colitis (54% vs. 34%; aOR 2.23, respectively; [95% CI, 1.15-4.19], P = .01).

Dr. Barnes acknowledged certain limitations of the study, including the fact that study participants comprised a voluntary, Internet-based cohort. “Participants may exhibit higher levels of patient activation than the general population of patients with IBD,” he said. “There may be an overrepresentation of college graduates in this sample, and the racial and ethnic makeup of this cohort may be different from that of a clinic-based population or the general population of patients with IBD.” He added that there might be unmeasured confounders in the relationship between patient activation and remission that the researchers could not assess.

“Patient activation appears to impact the disease course in patients with CD [Crohn’s disease] and UC [ulcerative colitis],” Dr. Barnes concluded. “The effect of patient activation on the disease course may be larger in UC than in CD. Efforts to improve patient activation in patients with IBD may have the ability to ultimately improve clinical outcomes.”

He reported having no financial disclosures.

*This story was updated on 3/26.

SOURCE: Barnes EL et al. Crohn’s & Colitis Congress, Clinical Abstract 12.

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