1. PATIENT ACTIVATION IN INFLAMMATORY BOWEL DISEASE PATIENTS
Kanu C1, Brown C1 , Barner J1 , Chapman C2 , Walker H2
1Health Outcomes & Pharmacy Practice Division, College of Pharmacy, The University of Texas at Austin, Austin, Texas, USA,
2Gastroenterology Associates, Baton Rouge, Louisiana, USA.
Background
Materials & Methods
Inflammatory bowel disease (IBD) is a chronic illness characterized by relapsing and remitting inflammation of the intestinal tissue. This inflammation gives rise to a myriad of physical, psychological and social disabilities in patients with this condition.1
Patient activation refers to the confidence, skill and knowledge that a patient possesses which determines the level of participation in managing his or her health and healthcare. Patients with a high activation level partner with their healthcare providers to manage their disease condition which results in better health outcomes.2,3
The knowledge of each patient’s activation stage at the point of care can enable healthcare providers to interact with IBD patients at their level of understanding and provide them with stage-appropriate information to promote participation in their healthcare management.
Convenience sampling was used to select adult IBD patients from medical records who had scheduled office visits from April to August 2016.
Inclusion criteria:
Adult IBD patients (> 18 years) who were patients of the study clinic site
Patients with moderate to severe Crohn’s disease/ulcerative colitis on immunomodulators (methotrexate or azathioprine) or biologic therapy (adalimumab, infliximab, certolizumab, or vedolizumab)
Patients who had office visits scheduled from April to August 2016
Patients who expressed willingness and gave their consent to participate
Exclusion criteria:
Children (17 years or younger) with IBD
Patients who did not have moderate to severe Crohn’s disease or ulcerative colitis; and
Patients with recent surgical intervention or hospitalization for a non-IBD related disease.
Patients who gave their consent to participate in the study were sent a mail paper survey or an electronic survey via the UT Austin Qualtrics portal
The survey consisted of the patient activation (PAM-13) instrument and demographic/clinical questions.
Responses to the PAM-13 items were converted to a PAM score using the PAM-13 score spreadsheet.
Patient activation scores were used to group patients into one of the four progressive patient activation stages (Figure 1)
Demographics were analyzed descriptively and compared per activation stage.
Objective
To describe the demographic characteristics of IBD patients in different patient activation stages.
Results
Respondent Demographics
Mean age - 48 years (±18years)
Caucasian - 88%
Female - 64%
College graduates - 56%
Crohn’s disease patients %
51% had an active inflammation
50% had been diagnosed >5 years
Patient Activation Scores
Majority were highly activated - Mean activation score of 65.0 (±10.3)
8%, 14%, 46%, and 32% in Stages 1, 2, 3, and 4, respectively.
Demographic and stage comparisons were not significant.
Table 1: Patient Activation Mean Scores by Demographics
Table 2: Patient Demographics by PAM Stage
Figure 1: Patient Activation Measure with Item Calibrations and the Four Stages Identified
Variable
Patient Activation Mean Score (SD)
Age
Below 40 years (n = 20)
64.5 (11.0)
Above 40 years (n = 30)
66.3 (15.9)
Gender
Male (n = 18)
60.4 (9.4)
Female (n = 32)
68.5 (15.5)
Race
Caucasian (n = 44)
65.4 (13.9)
African American (n = 5)
69.5 (17.1)
Hispanic (n = 1)
55.6 (0.0)
Education
Less than high school graduate (n = 2)
66.7 (15.6)
High school graduate (n = 19)
61.5 (15.0)
College graduate (n = 28)
68.7 (13.2)
IBD type
Ulcerative colitis(n = 18)
65.4 (14.7)
Crohn’s disease(n = 29)
66.4 (14.3)
Other(n = 2)
60.5 (10.3)
IBD state
Active inflammation (n = 24)
65.4 (13.1)
IBD in remission (n = 23)
65.0 (15.5)
Time since diagnosis
Less than 1 year (n = 8)
66.4 (11.9)
1 - 5 years (n = 16)
63.9 (11.1)
More than 5 years (n =25)
66.8 (16.7)
Variables
PAM stage
Chi square (P value)
Stage 1
Stage 2
Stage 3
Stage 4
Age
Below 40 years
(n = 20)
1 (5.0)
4 (20.0)
8 (40.0)
7 (35.0)
1.59 (0.67)
Above 40 years
(n = 30)
3 (10.0)
15 (50.0)
9 (30.0)
Gender
Male (n = 18)
2 (11.1)
3 (16.7)
11 (61.1)
5.71 (0.09)
Female (n = 32)
2 (6.3)
4 (12.5)
12 (37.5)
14 (43.7)
Race
Caucasian (n =44)
3 (6.8)
7 (15.9)
21 (47.7)
13 (29.6)
2.52 (0.42)
Other (n = 6)
1 (16.7)
0 (0.0)
2 (33.4)
3 (50.0)
Education
Less than college degree (n = 21)
3 (14.3)
4 (19.0)
9 (42.9)
5 (23.8)
3.91 (0.39)
College graduate
(n = 28)
1 (3.6)
3 (10.7)
13 (46.4)
11 (39.3)
IBD type
Ulcerative colitis
9 (45.0)
6 (30.0)
1.26 (0.78)
Crohn’s disease (n = 29)
3 (10.3)
13 (44.9)
10 (34.5)
IBD state
Active inflammation
(n = 24)
2 (8.4)
3 (12.5)
11 (45.8)
8 (33.3)
0.41 (0.94)
IBD in remission (n = 23)
2 (8.7)
4 (17.4)
11 (47.8)
6 (26.1)
Time since diagnosis
< 5 years (n = 24)
1 (4.1)
4 (16.7)
10 (41.7)
9 (37.5)
1.55 (0.67)
> 5 years (n = 25)
3 (12.0)
12 (48.0)
7 (28.0)
Four Stages of Activation
Believes Active Role Important
Confidence and Knowledge to Take Action
Taking Action
Staying the Course under Stress
Key: Item calibrations are the calibrated scale value of the item.
Figure 2: Patient Activation Staging Distribution
Discussion
Conclusions
The patient activation level of this study population was high. Over 50% of higher level stage 3 and 4 patients were female, Caucasian, college graduates, and over 40 years old.
Patients with such high activation levels are already participating in their IBD management to a reasonable extent and are more likely to have positive health outcomes.
The IBD patients in this study generally had high activation levels which remained unchanged across demographic and clinical characteristics. Patient activation could be utilized by healthcare providers to engage in customized information exchange with individual patients.
Future studies examining patient activation in IBD patients should focus on more diverse patient populations.
References
Limitations
Molodecky NA, Kaplan GG. Environmental Risk Factors for Inflammatory Bowel Disease. Gastroenterology & Hepatology. 2010;6(5):
Greene J, Hibbard JH. Why Does Patient Activation Matter? An Examination of the Relationships Between Patient Activation and Health-Related Outcomes. Journal of General Internal Medicine. 2012;27(5):
Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40(6 Pt 1):
Self-reported data
Low rate of survey completion
Selection bias arising from convenience sampling
Limited generalizability of findings because only one study site was used