Abstract
Background:
The effective management of inflammatory bowel disease (IBD) requires complex self-management behaviors. Both patient activation (the degree to which patients are willing and able to engage in care) and self-efficacy (one’s confidence in performing certain behaviors) are thought to play an important role in chronic disease self-management, but patient activation is a broad concept that can be more difficult to precisely target than self-efficacy We aimed to describe the relationship between patient activation, self-efficacy, and the burden of IBD on patient’s daily lives.
Methods:
Patients with IBD were recruited from a single center to complete a survey including the Patient Activation Measure (PAM-13®), the IBD Self-Efficacy Scale (IBD-SES), and an IBD-specific patient-reported outcome measure. Using multivariable linear regression, we examined the relationship between IBD burden, self-efficacy, and patient activation, adjusting a priori for age, gender, IBD type, IBD medications, and active corticosteroid use. We performed a post-hoc mediation analysis to examine self-efficacy as a potential mediator in the relationship between patient activation and the burden of IBD on patient’s daily lives.
Results:
A total of 134 patients with IBD completed the survey (60% Crohn’s disease, 40% ulcerative colitis, 51% female). Higher levels of patient activation and higher levels of self-efficacy were each associated with lower IBD burden (patient activation: ß = −0.19, p=0.002, self-efficacy: ß = −0.11, p<0.001). Post hoc mediation analysis confirmed that the relationship between patient activation and daily IBD burden was mediated by self-efficacy (Average Causal Mediation Effect = −0.12, p<0.001, proportion mediated = 0.83, p<0.001).
Discussion:
The relationship between patient activation and IBD burden is highly mediated by self-efficacy, suggesting that self-efficacy could be a more precise target for intervention. Future studies could focus on targeting self-efficacy to build individuals’ confidence in IBD self-management and testing of IBD-tailored self-management programs to ultimately improve disease outcomes.
Keywords: self-management, Crohn’s disease, ulcerative colitis, patient reported outcomes
INTRODUCTION
High-quality chronic illness care requires that patients play an active role in their care and treatment, a concept known as self-management.[1], [2] However, for patients to successfully engage in their care, they must possess the proper knowledge, confidence, motivation, and skillset. This concept can be understood as patient activation, which is the degree to which a patient is ready, willing, and able to engage in disease management.[3] Higher levels of patient activation have been associated with improved outcomes for patients with chronic conditions and have been the target for self-management intervention for other chronic disease models, such as heart failure and diabetes.[4], [5] In 2019, Barnes, et al., were the first to demonstrate an association between high levels of patient activation and clinical remission rates in patients with inflammatory bowel disease (IBD), identifying patient activation as a potential target for IBD self-management interventions.[6]
The challenge with developing IBD self-management interventions that target patient activation is that the definition of patient activation is quite broad and relies on several inter-related concepts (i.e., motivation, knowledge, confidence, skills). Alternatively, self-efficacy, which refers to a patient’s confidence in their ability to perform certain behaviors, may be a more precise target for supporting patients in self-management.[7], [8] Self-efficacy has been an important target for successful self-management programs such as the Stanford Chronic Disease Self-Management Program, which showed decreased emergency visits, outpatient visits, and health distress across a broad spectrum of chronic illnesses.[9], [10] Higher levels of self-efficacy have also been associated with lower symptom burden in patients with IBD.[11]
Our primary aim was to understand the relationship between patient activation, self-efficacy, and daily IBD burden, hypothesizing that the relationship between patient activation and daily IBD burden would be mediated through self-efficacy. Secondarily, we aimed to better understand the individual components of patient activation (i.e., confidence, knowledge, motivation, and skills) and their potential relationship to daily IBD burden. Using this data, we aimed to determine whether self-efficacy, patient activation, or the individual components of patient activation should be considered as future targets for IBD self-management intervention.
METHODS
Study Design
We conducted an observational survey study of adult patients with IBD. Patients with an established diagnosis of IBD based on International Classification of Diseases, Tenth Revision (ICD-10) codes were recruited from a single quaternary referral center to complete a survey. Additional inclusion criteria were age 18 or older, proficiency in English, and mental competency to complete the survey. We selected a random sample of 631 patients with IBD and invited them via email to participate in a one-time survey. Using a modified Dillman approach,[12] patients were sent two reminder emails at two-week intervals with information regarding the study purpose and a link to participate or opt-out. Patients who did not respond were contacted by phone up to three times. These patients were given the opportunity to complete the survey over the phone or receive a new email link. The survey was conducted using the REDCap platform.
Survey Instruments
The survey was comprised of several validated survey instruments. The primary independent variables of interest were patient activation measured using the Patient Activation Measure (PAM-13®)[3] and self-efficacy measured using the IBD Self-Efficacy Scale (IBD-SES).[13] The primary outcome measure was daily IBD burden measured using the daily life impact domain of the Crohn’s Disease/Ulcerative Colitis Patient-Reported Outcomes Measure (CD-PRO/UC-PRO).[14], [15]
Patient Activation Measure-13®:
The PAM-13® (licensed to Insignia) is a validated 13-item scale for measuring patient activation. Each item includes a 4-point Likert scale ranging from “strongly disagree” to “strongly agree” with an additional “not applicable” option. The PAM-13® is measured on a 0 to 100 scale, and categorized into 4 levels with higher levels representing higher degrees of activation.[3]
IBD Self-Efficacy Scale:
The IBD-SES is a 29-item questionnaire that measures patients’ confidence in managing their IBD across 4 domains: (1) managing stress and emotions, (2) managing medical care, (3) managing symptoms and disease, and (4) maintaining remission.[13] The scale ranges from 29 to 290 with higher scores indicating a greater level of self-efficacy for managing IBD. The scale has been externally validated with high reliability (Cronbach’s alpha = 0.97).[16]
Crohn’s Disease and Ulcerative Colitis Patient-Reported Outcome Measures:
The CD-PRO and UC-PRO measures assess IBD-related symptoms across several distinct domains, including bowel signs and symptoms, abdominal symptoms, systemic symptoms, required coping strategies, daily life impact, and emotional impact.[14], [17] For the purposes of this study, we determined daily IBD burden based on the daily life impact domain, which assesses the impact of IBD on patients’ ability to perform in work, school, home life, travel, and leisure/social activities over the prior 7 days. The daily life impact scores range from 0–36, with higher scores indicating a greater daily life impact of IBD.
Statistical Analysis
We collected demographic and disease-specific data including gender, age, current IBD medications, and active corticosteroid use. Continuous and categorical variables were described using means (standard deviation [SD]) and counts (percentages), respectively. We examined the associations between patient activation and self-efficacy, and daily IBD burden using separate multivariable linear regressions and adjusting a priori for age, gender, IBD type, IBD medications, and active corticosteroid use. A separate multivariable linear regression also explored the association between patient activation and self-efficacy. Structural equation modeling was used to conduct a mediation analysis with 500 non-parametric bootstrap simulations to test the hypothesis that the association between patient activation and IBD burden was mediated through self-efficacy. Mediation analysis was conducted using R package “mediation” version 4.5.0.
To better understand the individual components of patient activation and their association with daily IBD burden, we created a variable for four patient activation concepts including confidence, knowledge, motivation, and skill. The confidence variable averaged PAM-13® questions 3,5,6,7,12, and 13. The knowledge averaged PAM-13® questions 4,8,9, and 11. The motivation variable averaged oPAM-13® questions 1 and 2. Finaly, the skills variable consisted of the PAM-13® question 10. Pearson’s r was used to calculate the degree of correlation between each variable and IBD-SES. Finally, we examined the association between each of these patient activation concepts and IBD burden using separate multivariable linear regressions and adjusting a priori for age, gender, IBD type, IBD medications, and active corticosteroid use. All analysis was performed in R statistical software version 4.2.2. This study was approved by the institutional review board (HUM#00194000).
RESULTS
Study Population
Overall, 160 patients met the inclusion criteria and agreed to complete the survey. In total, 134 participants were included after excluding 26 (16.3%) participants for incomplete responses for a survey response rate of 21%. Most participants (51%, n=51) were between 50 and 69 years old and 69 (51%) were female. A total of 80 (60%) participants had Crohn’s disease (CD) and 54 (40%) had ulcerative colitis (UC). A majority, 103 (77%) participants were taking an immunomodulator or biologic medication and 15 (11%) reported active corticosteroid use. The mean PAM-13® score was 66 (SD 11) on a range from 1–100. The mean IBD-SES score was 217 (SD 39) on a range from 29–290. The mean UC-PRO and CD-PRO score for IBD symptom burden was 7 (SD 9) on a 0–36 scale (Table 1).
Table 1:
Patient Demographics
| Characteristic | N = 1341 |
|---|---|
| Age (years) | |
| <30 | 25 (19%) |
| 30–49 | 41 (31%) |
| 50–69 | 51 (38%) |
| 70+ | 17 (13%) |
| Female | 69 (51%) |
| IBD Diagnosis | |
| CD | 80 (60%) |
| UC | 54 (40%) |
| Biologic or Immunomodulator | 103 (77%) |
| Active Corticosteroid Use | 15 (11%) |
| PAM-13® Score | 66 (11) |
| IBD-SES Score | 217 (39) |
| Daily IBD Burden Score | 7 (9) |
n (%); Mean (SD)
PAM-13® = Patient activation measure 13
IBD-SES = inflammatory bowel disease self-efficacy scale
Patient Activation, Self-Efficacy, and IBD Burden
In a multivariable model, higher patient activation was associated with lower daily IBD burden (ß = −0.19, 95% CI −0.30, −0.07, p = 0.002) after adjusting for age, gender, IBD type, IBD medications, and active corticosteroid use. In a separate multivariable model, higher self-efficacy was similarly associated with lower daily IBD burden (ß = −0.11, 95% CI −0.14, −0.08, p < 0.001). However, when both self-efficacy and patient activation were jointly considered in the same model, higher self-efficacy (ß = −0.10, 95%CI −0.14, −0.07, p < 0.001) but not patient activation (ß = −0.02, 95% CI −0.14, 0.09, p = 0.7) was significantly associated with lower daily IBD burden. In these models, female gender and active corticosteroid use were each associated with greater daily IBD burden, while UC (compared to CD) was associated with a lower daily IBD burden (Table 2).
Table 2.
Multivariable models showing the association between patient activation, self-efficacy, and daily IBD burden
| Characteristic | Patient Activation | Self-Efficacy | Patient Activation + Self-Efficacy | ||||||
|---|---|---|---|---|---|---|---|---|---|
| Beta | 95% CI | p-value | Beta | 95% CI | p-value | Beta | 95% CI | p-value | |
| Age (years) | |||||||||
| <30 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| 30–49 | 1.5 | −2.3, 5.3 | 0.4 | 1.3 | −2.0, 4.6 | 0.4 | 1.3 | −2.1, 4.6 | 0.5 |
| 50–69 | 3.5 | −0.14, 7.2 | 0.059 | 2.4 | −0.79, 5.7 | 0.14 | 2.4 | −0.85, 5.6 | 0.15 |
| 70+ | −2.3 | −7.1, 2.5 | 0.3 | −0.69 | −4.8, 3.5 | 0.7 | −0.84 | −5.1, 3.4 | 0.7 |
| Female | 2.6 | 0.04, 5.1 | 0.046 | 2.3 | 0.10, 4.5 | 0.041 | 2.3 | 0.10, 4.5 | 0.040 |
| IBD Diagnosis | |||||||||
| CD | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| UC | −4.6 | −7.4, −1.8 | 0.002 | −3.8 | −6.3, −1.3 | 0.003 | −3.8 | −6.3, −1.4 | 0.003 |
| Biologic or Immunomodulator | 0.13 | −3.3, 3.5 | >0.9 | −0.67 | −3.6, 2.3 | 0.7 | −0.69 | −3.7, 2.3 | 0.6 |
| Corticosteroid Use | 6.3 | 2.3, 10 | 0.002 | 4.8 | 1.3, 8.3 | 0.008 | 4.8 | 1.2, 8.3 | 0.009 |
| PAM-13® | −0.19 | −0.30, −0.07 | 0.002 | − | − | − | −0.02 | −0.14, 0.09 | 0.7 |
| IBD-SES | − | − | − | −0.11 | −0.14, −0.08 | <0.001 | −0.10 | −0.14, −0.07 | <0.001 |
CI = Confidence Interval, Ref. = reference value, PAM-13® = Patient Activation Measure 13,
IBD-SES = Inflammatory bowel disease self-efficacy scale
Post hoc mediation analysis showed a small, non-significant average direct effect of patient activation on daily IBD burden (average direct effect = −0.02, 95% CI −0.12, 0.06, p = 0.57) while the indirect effect of patient activation on daily IBD burden mediated through self-efficacy showed a larger and statistically significant effect (average causal mediation effect = −0.12, 95% CI −0.17, −0.06, p<0.001). The total proportion of patient-activation mediated through self-efficacy was estimated to be 83% (95% CI 0.40, 1.76, p < 0.001) (Figure 1).
Figure 1:
Mediation analysis showing the relationship between patient activation, self-efficacy, and daily IBD burden
*The mediation analysis was performed using non-parametric bootstrapping. Therefore, there is a small difference in effect size for the association between patient activation and IBD burden in the mediation model (ß = −0.14, p < 0.001) compared to the standard linear regression model (ß = −0.19, p = 0.002) in Table 2.
All analyses were adjusted for age, gender, IBD type, IBD medications, and active corticosteroid use.
PAM-13® Variables: Confidence, Knowledge, Motivation, and Skills
Using an average of PAM-13® questions 3,5,6,7,12, and 13, patients had a mean confidence score of 3.29 (range 2.33–4.0, SD 0.36). This confidence score was moderately correlated with self-efficacy (r = 0.5, p < 0.001). On multivariable analysis controlling a priori for age, gender, IBD type, IBD medications, and active corticosteroid use, higher confidence scores were associated with lower daily IBD burden (ß = −6.6, 95% CI −10.0, −3.1, p < 0.001) (Table 3).
Table 3.
Multivariable models showing the association between confidence, knowledge, motivation, and skills and daily IBD burden
| Characteristic | Confidence | Knowledge | Motivation | Skills | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Beta | 95% CI | p-value | Beta | 95% CI | p-value | Beta | 95% CI | p-value | Beta | 95% CI | p-value | |
| Age (years) | ||||||||||||
| <30 | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| 30–49 | 1.7 | −2.1, 5.4 | 0.4 | 1.9 | −2.1, 5.9 | 0.3 | 2.1 | −1.8, 5.9 | 0.3 | 2.0 | −1.8, 5.8 | 0.3 |
| 50–69 | 3.3 | −0.30, 7.0 | 0.071 | 4.2 | 0.37, 8.1 | 0.032 | 4.5 | 0.81, 8.2 | 0.017 | 3.6 | −0.09, 7.3 | 0.056 |
| 70+ | −2.0 | −6.7, 2.7 | 0.4 | −1.4 | −6.4, 3.7 | 0.6 | −1.7 | −6.5, 3.2 | 0.5 | −1.4 | −6.2, 3.3 | 0.6 |
| Female | 2.3 | −0.19, 4.8 | 0.070 | 2.5 | −0.10, 5.2 | 0.059 | 2.6 | 0.07, 5.2 | 0.045 | 2.2 | −0.37, 4.7 | 0.094 |
| IBD Diagnosis | ||||||||||||
| CD | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. | Ref. |
| UC | −4.6 | −7.4, −1.8 | 0.001 | −4.6 | −7.5, −1.6 | 0.003 | −4.3 | −7.2, −1.4 | 0.004 | −4.1 | −6.9, −1.3 | 0.005 |
| Biologic or Immunomodulator | 0.21 | −3.1, 3.5 | >0.9 | 0.52 | −3.0, 4.0 | 0.8 | 0.55 | −2.9, 4.0 | 0.8 | 0.27 | −3.1, 3.6 | 0.9 |
| Active Steroid Use | 6.0 | 2.0, 10 | 0.004 | 7.1 | 2.9, 11 | 0.001 | 6.9 | 2.9, 11 | 0.001 | 7.0 | 3.1, 11 | <0.001 |
| Confidence | −6.6 | −10, −3.1 | <0.001 | - | - | - | - | - | - | - | - | - |
| Knowledge | - | - | - | -0.50 | -3.4, 2.4 | 0.7 | - | - | - | - | - | - |
| Motivation | - | - | - | - | - | - | −3.6 | −6.6, −0.56 | 0.021 | - | - | - |
| Skills | - | - | - | - | - | - | - | - | - | −4.0 | −6.4, −1.5 | 0.002 |
CI = Confidence Interval, Ref. = reference value
Using an average of PAM-13® questions 4,8,9, and 11, patients had a mean knowledge score of 3.17 (range 2.0–4.0, SD 0.45). This knowledge score was weakly correlated with self-efficacy (r = 0.27, p = 0.01). On multivariable analysis controlling a priori for age, gender, IBD type, IBD medications, and active corticosteroid use, higher knowledge scores were not associated with lower daily IBD burden (ß = −0.50, 95% CI −3.4, 2.4, p = 0.7) (Table 3).
Using an average of PAM-13® questions 1 and 2, patients had a mean motivation score of 3.69 (range 2.5–4.0, SD 0.43). This motivation score was not correlated with self-efficacy (r = 0.13, p = 0.14). On multivariable analysis controlling a priori for age, gender, IBD type, IBD medications, and active corticosteroid use, higher motivation scores were associated with lower daily IBD burden (ß = −3.6, 95% CI −6.6, −0.56, p = 0.02) (Table 3).
Using an average of PAM-13® question 10, patients had a mean skills score of 3.27 (range 1.0–4.0, SD 0.59). This skills score was moderately correlated with self-efficacy (r = 0.51, p < 0.001). On multivariable analysis controlling a priori for age, gender, IBD type, IBD medications, and active corticosteroid use, higher PAM-13® skills scores were associated with lower daily IBD burden (ß = −4.0, 95% CI −6.4, −1.5, p = 0.002) (Table 3).
DISCUSSION
Our study findings showed that higher levels of patient activation were significantly associated with decreased daily IBD burden; mainly through the role of self-efficacy, or one’s confidence in managing IBD. These findings are corroborated by the similar association between patient activation concepts of confidence and skills, which were each moderately correlated with IBD self-efficacy and independently associated with decreased daily IBD burden. Meanwhile, patient activation concepts of motivation and knowledge were distinct from self-efficacy. Higher motivation levels were associated with lower daily IBD burden, while greater knowledge was not associated with daily IBD burden. Overall, these findings suggest that (1) IBD self-efficacy may be a more precise target for self-management intervention than patient activation, (2) motivation may be another important concept in IBD management and a promising target for intervention, and (3) while knowledge of disease is necessary, knowledge alone is not sufficient for promoting IBD self-management to reduce daily IBD burden. These findings advance our understanding of patient activation as it relates to living with IBD and will inform development of interventions to support self-management and improving patients’ experience living with IBD.
The PAM-13® was developed as a rigorous method of quantifying activation beyond a single self-management behavior and can be used to tailor intervention to participants based on their baseline level of need.[3],[18] However, while this scale may help identify a patient’s readiness for activation, its heterogeneity and theory-agnostic approach makes it difficult for direct identification of specific targets for intervention. For example, a systematic review of 21 patient activation-based interventions identified a broad range of intervention types, including motivational interviewing, health coaching, goal setting, self-management plans, provision of health information, care coordination, and hospital to home transition plans.[19] Identifying specific IBD-tailored intervention components requires a more precise approach.
The strong mediating role of self-efficacy in the relationship between patient activation and IBD burden suggest that interventions that focus on improving self-efficacy are appropriate for supporting IBD self-management. Self-efficacy-based interventions are rooted in Bandura’s social cognitive theory and emphasize the cognitive, behavioral, and environmental factors influencing human actions and decision-making.[20] Perhaps the best studied social cognitive theory-based intervention is Stanford’s Chronic Disease Self-Management Program, which aims to improve self-efficacy for chronic disease management through techniques such as cognitive behavioral therapy, problem-solving skills building, and peer support groups. Such interventions have been shown to improve self-management and disease outcomes for many conditions including asthma, arthritis, diabetes, hypertension, and heart failure.[9], [10], [21], [22], [23], [24], [25], [26] Similar interventions in which participants are instructed to set goals, devise an action plan, communicate with providers, and learn coping skills, could be applied to patients with IBD with the potential to improve self-efficacy, self-management, and ultimately disease outcomes.
Secondarily, we explored the individual PAM-13® concepts of confidence, knowledge, motivation, and skill. We found that higher levels of confidence, motivation, and skill were associated with lower daily IBD burden, while increased knowledge alone was not sufficient for reducing daily IBD burden. The limited effect of IBD knowledge alone on daily IBD burden is supported by systematic review data from 14 randomized trials demonstrating that educational interventions did not improve symptom burden or health-related quality of life when added to standard IBD care.[27] However, when sessions on coping and self-management were added to the disease education component, participants did experience improvement in psychological distress, coping, and self-management.[28]
While the notion of confidence in disease management is similar to of the theory of self-efficacy, the concepts of motivation and lifestyle skills could play a complementary role to self-efficacy and be targeted to improve IBD self-management. For example, motivational interviewing, a psychological technique used by clinicians to identify discrepancies between patients’ beliefs and desired outcomes to promote intrinsic motivation, has been used in a variety of chronic illnesses.[29], [30] However, the role of motivational interviewing in IBD has been understudied. One systematic review of the use of this technique in patients with IBD showed improvement in medication adherence rates, but only four studies were included.[31] The role of skill-building techniques, for example, decision making, problem-solving, and patient-provider communication in IBD, is also unclear.[32], [33], [34] However, a few limited studies on skill-building have shown promise for improving health-related quality of life and reducing symptom burden in IBD.[35]
The results of this study should be considered within the context of its inherent limitations. As with any survey study, there is potential for selection bias, in which case our study findings may only be generalizable for some patients. For example, this study represents a population of patients with IBD who are voluntarily completed a survey, and may not represent patients who do not have the time, willingness, or capacity to participate in a survey study. Additionally, we were unable to measure self-management behaviors, such as medication adherence or symptom monitoring, which may drive IBD outcomes. Instead, we relied on the surrogate patient-reported outcome of daily IBD burden, as higher levels of self-management have been associated with improved symptom burden and health outcomes.[36] Validated measures of IBD self-management skills remain sorely needed to study the impact of self-management interventions on behavioral change.
In summary, IBD self-efficacy plays an essential mediating role in the relationship between patient activation and daily IBD burden. Future IBD-tailored self-management programs should focus on improving self-efficacy through techniques such as cognitive behavioral therapy, goal setting, problem solving, and peer support. Additional concepts of motivation and skill also have potential to be complementary to self-efficacy interventions and can be promoted using motivational interviewing techniques and skill-building programs. Ultimately, systematic approaches for developing multicomponent theory-driven self-management interventions are needed to develop and implement effective programs grounded in self-efficacy, motivation, and skill-building, to support patients with IBD and improve disease outcomes.
Grant Support:
JLS is supported by T32 DK062708
This research was supported by Clinical and Translational Science Award UM1TR004404 through the Michigan Institute for Clinical and Health Research from the National Institutes of Health
Abbreviations:
- CD-PRO
Crohn’s disease patient-reported outcome
- IBD
Inflammatory bowel disease
- IBD-SES
IBD Self-Efficacy Scale
- PAM-13®
Patient Activation Measure
- UC-PRO
ulcerative colitis patient-reported outcome
Footnotes
Disclosures: All authors report no relevant disclosures.
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