What Is Known
- Self-efficacy is an important component of effective disease self-management, but is highly specific to disease-specific tasks and therefore not easily transferable across patient groups.
What Is New
- This scale represents the first disease- and population-specific measure to assess self-efficacy toward disease management for adolescents and young adults with inflammatory bowel disease.
Successful management of inflammatory bowel disease (IBD) requires a patient to consciously acquire disease-specific skills that support his/her personalized treatment plan, and to update these skills as needed over time (1). This is perhaps most obvious during adolescence and early adulthood when disease self-management skills must switch from parent and gastroenterologist to the patient him/herself and in the setting of adult-centered care (2). Social-cognitive theory serves as a basis for most effective chronic disease self-management programs (3,4), and within this, self-efficacy (SE), a measurable and modifiable perception of one's ability to engage in skills required to master a new challenge despite obstacles (aka self-confidence), may be the most predictive of successful outcome (5). Interventions aimed at improving SE have resulted in better self-management and also improved health outcomes and quality of life across several pediatric disease groups (6–10), but have not previously been evaluated in pediatric IBD.
The main reason why it is hard to determine the true impact of SE on IBD outcomes is that there are no patient-centered tools in which SE can be measured or tracked over time. Existing generic measures (11,12) do not encompass the IBD-specific tasks that give providers, patients, and families the necessary confidence to ensure that their adolescent or young adult is capable of disease self-management. Nor do they allow for the measurement of change in SE as a key ingredient of effective behavioral interventions for this age group (13,14).
The primary goal of this study was to provide validity and reliability data for a recently developed measure of SE for adolescents and young adults with IBD (15). This measure was developed through standardized patient-reported outcome (PRO) guidelines (16), and data regarding item development are reported elsewhere (15). In this second phase of PRO development, our main hypothesis was that the IBD Self-Efficacy Scale for Adolescents and Young Adults (IBDSES-A) would provide adequate internal, construct, and concurrent validity and satisfactory test-retest reliability. Our long-term goal is to place this measure into the pathway of care for adolescents and young adults with IBD to determine readiness for independent IBD self-management and the best way to demonstrate change in outcomes as a result of improved SE.
MATERIALS AND METHODS
This study was approved by the institutional review boards at Ann & Robert H. Lurie Children's Hospital and Northwestern University.
Data were obtained from a consecutive sample of patients recruited from outpatient gastroenterology clinics associated with Lurie Children's and Northwestern Medical Group, and online. Diagnoses were confirmed by reviewing medical records and primary gastroenterologist's report or via clinical information provided. All participants consented using an institutional review board–approved online consent procedure and completed all the experimental and study measures online through the secured third-party survey provider, Adobe FormsCentral (San Jose, CA). Study measures assessing self-esteem, depression, anxiety, and quality of life were selected to compare with the experimental measure to ensure that SE was the main construct of the experimental measure and not a proxy for general distress. A subset of participants voluntarily completed the IBDSES-A a second time approximately 2 weeks later to evaluate the measure's test-retest reliability.
IBDSES-A is a 13-item measure generated through patient interviews, expert input, SE theory, and a previously validated SE questionnaire for adults with IBD (17). In keeping with the study measures used, responses were given on a 5-point Likert scale with 5 being “completely agree”; 3 being “I don’t agree or disagree”; and 1 being “completely disagree.” The overall score of the IBDSES-A ranges from 21 to 57, owing to reverse scoring on 2 of the items. A higher score indicates higher SE. See Supplemental Digital Content, Figure 1 (https://links.lww.com/MPG/A925), for the complete measure and scoring system.
Rosenberg Self-esteem Scale is a 10-item validated measure of self-esteem that addresses overall feelings of self-worth and acceptance. Items are rated on a 4-point Likert scale from “strongly agree” to “strongly disagree.” Lower scores suggest lower self-esteem (18).
Children's Depression Inventory: Short version is a validated modification of the longer Children's Depression Inventory; it includes 10 multiple choice items to rapidly screen for depressive symptoms in children and adolescents (19). The Children's Depression Inventory: Short version yields a total score and has excellent reliability and validity, including in chronic illness populations. Higher scores indicate greater depression.
Multidimensional Anxiety Scale for Children-10 item is a 10-item measure that combines the basic anxiety scales from the long version to produce one score that indicates the severity of anxiety problems. Items are rated on a 4-point Likert scale with 0 being “never true about me” to 3 being “often true about me.” Higher scores suggest more anxiety (20).
IMPACT III is a 35-item questionnaire that addresses 6 domains of quality of life: bowel symptoms, systemic symptoms, treatment/interventions, emotional functioning, social functioning, and body image. Items are rated on a 5-point Likert scale. Higher scores suggest higher quality of life (21). A symptom severity score was also derived from summation of the bowel and systemic symptom subscales of this measure and analyzed as a separate variable. Higher scores denote better physical functioning, or lower bowel and systemic symptom reporting.
Data from the online system were exported into SPSS version 22 for analyses (SPSS Inc, Chicago, IL). Descriptive statistics (percentages) evaluated the demographic and clinical variables of the sample. Internal consistency and reliability of the IBDSES-A were calculated using Cronbach α, interitem correlation, and Guttman split-half reliability statistics. Tests for normal distribution (skewness and kertosis between −2.0 and +2.0) and mean plus standard deviation were conducted to identify potential ceiling and floor effects for each item of the scale. Principle components factor analysis with varimax rotation defined the factor structure of the IBDSES-A, with eigen values set to >1.0 to identify potential subscales. Test-retest reliability was determined via Pearson correlations between baseline and 2-week follow-up points. Concurrent validity of the IBDSES-A was verified via Pearson correlations between the measure and depression, anxiety, health-related quality of life, and self-esteem, which are consistently shown to be related to SE. Independent samples t tests and 1-way analysis of variance with Tukey post-hoc test evaluated significant differences between demographic and clinical variables; statistical significance was set at P < 0.01 for these analyses to control for type 1 error owing to multiple comparisons.
A total of 103 participants consented to participate with 8 removed from the sample for missing data or withdrawal of responses from the study, for a total sample size of 95 (92% completion rate). A total of 16 original participants completed the test-retest reliability. Demographic and disease characteristics are outlined in Tables 1 and 2. The sample was mostly white and evenly divided by age group, sex, and IBD diagnosis. The majority of participants had IBD for at least 1 year and one-third reported a family history of IBD.
Factor Structure of the Inflammatory Bowel Disease Self-efficacy Scale for Adolescents and Young Adults
Principle components factor analysis revealed 3 potential subscales (eigen value >1.0) for the IBDSES-A (Table 3). Upon review of the factor structure, 3 possible themes exist for the items on each subscale—knowledge/information, emotional aspects, and adaptive skills.
Reliability of the Inflammatory Bowel Disease Self-efficacy Scale for Adolescents and Young Adults
The IBDSES-A demonstrated good internal consistency (Cronbach α = 0.78) and split-half reliability (Guttman = 0.74), both above the standard acceptable cutoff of 0.70 for scale development. Test-retest correlation was excellent (r = 0.82, P < 0.001), with the median time between test-retest points of 19.2 days (range: 8–50 days). Interitem correlations ranged from 0.3 to 0.7 with mean (SD) scores for each item ranging from 2.43 (1.31) to 4.50 (0.74). No significant ceiling or floor effects was noted.
Group comparisons by demographic and clinical variables yielded few significant differences, suggesting that the IBDSES-A is reliable across ages, IBD diagnoses, race, and sex. Participants in middle school reported significantly lower SE than those in high school (P = 0.01) and college (P = 0.007), but not those in graduate school (P = 0.02) or in the workforce (P = 0.76). Participants with a family history of IBD reported significantly higher SE than those without family members with IBD (P = 0.01).
Validity of the Inflammatory Bowel Disease Self-efficacy Scale for Adolescents and Young Adults
The IBDSES-A demonstrated adequate concurrent validity as exhibited by significant modest correlations with other outcome measures included in the study (Table 4). Higher scores on the IBDSES-A were moderately correlated with decreased depression and anxiety, lower IBD symptom severity, and increased health-related quality of life and self-esteem.
In this study, we successfully validated a PRO measure for the assessment of SE in adolescents and young adults with IBD, based on Food and Drug Administrations’ PRO guidelines. We report good internal reliability, test-retest reliability, and several indicators of validity.
Our measure is unique in that it is a disease-specific scale geared toward SE, a precursor to effective self-management. Because SE is dependent on an individual's previous experience with a given task, his or her perception of the steps needed to complete a task, and the context surrounding the task, it is nontransferable from other life domains.
As such, to assess SE for a certain disease, a scale must be designed specifically for that disease and capture the skills required to manage that specific condition. This measure was designed based on responses to a semistructured clinical interview regarding patients’ experiences with self-management of IBD, their mastery of disease-related skills, perception of confidence, ability to persist despite obstacles, and their disease-related concerns. To ensure that additional important aspects of SE around disease management were not neglected, a small subset of parents were also interviewed about their perceptions of their child's experiences with self-management of IBD, including SE, disease-related concerns and, when appropriate, their perceived ability to transition their child to adult care.
It was noted that middle school-aged participants had lower SE scores, suggesting that the youngest of patients are in most need of intervention. Therefore, it would be important for future intervention studies to focus on this age group. Additionally, it was noted that participants with a family history of IBD had higher SE scores, suggesting that a positive family history might confer better SE and/or self-management skills, perhaps through familiarity and exposure through a family member's experience. This could suggest that peer teaching or group-based learning could be a useful model for future intervention studies.
There are limitations to this study. One limitation of our study is that measures for depression and anxiety geared for children (17 years or younger) were used in the young adult population (18–25 years’ old). Although the wording is geared toward a younger reading level, the content still measures depression and anxiety. It is possible that participants may not have been as forthcoming in their responses because of the wording of the measures. Another limitation is the number of subjects completing the test-retest reliability. As such, we conducted test-retest reliability in an additional group of patients (n = 83) with confirmed IBD at Mount Sinai. Again, the test-retest correlation was excellent (r = 0.935, P < 0.001). Additionally, 3 potential subscales emerged in the factor analysis that should be tested in future studies to improve this measure.
Our measure could be used, along with measures of disease and medication knowledge and parents’ reports of their child's ability in managing their disease, as part of a global assessment of transition readiness. Surveys of adult and pediatric gastroenterologists have shown that SE was one of the most important factors to determine timing of transition (22). Our approach to assess pediatric IBD self-management through SE has important implications for pediatric IBD outcomes. If adolescent patients can improve and maintain self-management behaviors through improved SE, they could potentially improve medication adherence, have fewer disease flares, have fewer hospitalizations and surgeries, and experience better quality of life. This, in turn, could result in a smoother transition into adulthood with a better grasp of their disease and improved transition to adult gastrointestinal care as engaged patients.
The authors acknowledge the contributions of Drs Estella Alonso, Jeff Brown, Jennifer Strople, Suzanne Nelson, and Laura Yun as well as Kate Eident and Katie Amsden.
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