Jill M. Plevinsky

Self-management in patients with inflammatory bowel disease: strategies, outcomes, and integration into clinical care.

Self-management, including medication adherence, is associated with improved health and outcomes for patients with inflammatory bowel disease. The concept of self-management is complex, but can be divided into those aspects that involve the individual patient, those that involve the provider–patient relationship, and those that encompass the social environment. At the individual level, enhancing problem-solving skills and self-efficacy have both been shown to improve self-management tasks, particularly adherence to treatment. However, it is critical to consider these domains from a lifespan perspective because these processes by which self-management can be improved are distinct for children, adolescents, young adults, and adults. A particular emphasis is placed on strategies to improve self-management of older adolescents and young adults as they transition from pediatric to adult providers. The review concludes with recommendations for providers, including rationale and techniques for assessing and promoting patient self-efficacy, encouraging the development of problem-solving skills, improving the patient–provider relationship, and enhancing social support. Providers are encouraged to utilize elements of problem-solving skills training, engage in collaborative relationships with their patients, and offer their patients recommendations for how to increase the quality of their social support networks as ways of increasing overall self-management.

Can You Teach a Teen New Tricks? Problem Solving Skills Training Improves Oral Medication Adherence in Pediatric Patients with Inflammatory Bowel Disease Participating in a Randomized Trial.

Background:Medication nonadherence is associated with higher disease activity, greater health care utilization, and lower health-related quality of life in pediatric inflammatory bowel diseases (IBD). Problem solving skills training (PSST) is a useful tool to improve adherence in patients with chronic diseases but has not been fully investigated in IBD. This study assessed feasibility, acceptability, and preliminary efficacy of PSST in pediatric IBD. Methods:Recruitment occurred during outpatient clinic appointments. After completion of baseline questionnaires, families were randomized to a treatment group or wait-list comparison group. The treatment group received either 2 or 4 PSST sessions. Youth health-related quality of life was assessed at 3 time points, and electronic monitoring of oral medication adherence occurred for the study duration. Results:Seventy-six youth (ages 11–18 years) on an oral IBD maintenance medication participated. High retention (86%) and treatment fidelity rates (95%) supported feasibility. High satisfaction ratings (mean values ≥4.2 on 1–5 scale) supported intervention acceptability. Modest increases in adherence occurred after 2 PSST sessions among those with imperfect baseline adherence (d = 0.41, P < 0.10). Significant increases in adherence after 2 PSST sessions were documented for participants aged 16 to 18 years (d = 0.95, P < 0.05). Improvements in health-related quality of life occurred after 2 PSST sessions. No added benefit of 4 sessions on adherence was documented (d = 0.05, P > 0.05). Conclusions:Phone-delivered PSST was feasible and acceptable. Efficacy estimates were similar to those of lengthier interventions conducted in other chronic illness populations. Older adolescents benefited more from the intervention than their younger counterparts.

Exploring health-related quality of life and social functioning in adolescents with inflammatory bowel diseases after attending camp oasis and participating in a Facebook group.

Background:Youth with inflammatory bowel diseases are at risk for impaired health-related quality of life (HRQoL) and problems with social functioning. This study examined the impact of attending Camp Oasis (a disease-specific weeklong camp experience) on the HRQoL and social functioning of youth with inflammatory bowel diseases. Additionally, the study collected pilot data on whether a postcamp Facebook group contributed to maintenance or enhancement of these factors. Methods:Twenty-one youth ages 14 to 17 years who attended Camp Oasis and were Facebook users participated. HRQoL and social functioning (i.e., social support and social connectedness) were assessed through validated youth-report questionnaires at precamp, postcamp, and post-Facebook group. The Facebook group was 8 weeks in duration and encouraged campers to continue interacting in a private, protected setting. Results:Analyses of effect sizes (i.e., Cohens d) indicated medium and statistically significant increases in HRQoL from precamp to postcamp (d = 0.40) and small increases in social functioning (d = 0.15–0.24). Additional improvements in social functioning were seen from postcamp to post-Facebook group (d = 0.21–0.32), and overall improvements were observed in all domains (d = 0.17–0.52). Conclusions:Findings replicated those of previous research in documenting the value of Camp Oasis on enhancing HRQoL. Both the camp experience and the Facebook group contributed to improvements in youth social functioning. Thus, supplementing the camp experience with membership in an online community may enhance social functioning in adolescents with inflammatory bowel diseases.

What Teens Do Not Know Can Hurt Them: An Assessment of Disease Knowledge in Adolescents and Young Adults with IBD

Background: Although adequate disease-related knowledge is recognized as an important component of transition readiness, little empirical attention has been directed toward understanding the levels of disease knowledge of adolescents and young adults (AYAs) with inflammatory bowel diseases (IBDs) or factors associated with higher levels of knowledge. This study described disease knowledge in a sample of AYAs with IBDs and examined individual, family, and patient–provider relationship factors associated with higher knowledge. Methods: Seventy-five AYAs (ages 16–20) and their parents participated. AYAs and parents reported on demographics, parent autonomy granting behaviors, health care satisfaction, patient–provider transition-related communication, and disease knowledge. AYAs self-reported on disease self-efficacy. Disease information was abstracted from the medical record. Results: On average, AYAs answered 8.20 (SD = 1.75) of 12 knowledge questions correctly. Over 85% of AYAs correctly identified their type of IBD, number and type of IBD–related surgeries, and name of their current IBD medical provider. In contrast, knowledge about frequency of medication refills, effects of drugs and alcohol on IBD, and number to call to schedule medical appointments was suboptimal (i.e., 50% or fewer provided a correct response). Older AYA age, greater AYA health care satisfaction, higher AYA self-efficacy, and more frequent patient–provider transition-related communication were each associated with higher IBD-related knowledge. Conclusions: To promote disease knowledge, providers should foster AYA self-efficacy by encouraging age-appropriate involvement in IBD management and make discussion of transition-related issues a priority during clinical appointments. Moreover, fostering collaborative and positive relationships with patients will improve satisfaction and may also enhance knowledge.

Illness-related parenting stress among parents of adolescents and young adults with inflammatory bowel diseases

ABSTRACT Illness-related parenting stress in parents of adolescents/young adults (AYA) with inflammatory bowel diseases (n = 51) was compared with parents of younger youth (n = 48), using the Pediatric Inventory for Parents. Parents and AYA self-reported psychological functioning. Physicians rated disease activity. Parents of AYA and younger youth experienced comparable levels and types of parenting stress. Parents most commonly endorsed items within the emotional distress domain. Poorer parent psychological functioning explained additional variance in parenting stress beyond that of AYA disease activity and psychological functioning. Parents of AYA with greater disease activity and parents with poorer psychological functioning may benefit from behavioral health involvement.

Longitudinal Barriers to Thiopurine Adherence in Adolescents With Inflammatory Bowel Diseases

Objectives Cross-sectionally, more adherence barriers are associated with lower medication adherence. However, little is known about longitudinal associations between adherence barriers and adherence. Among adolescents with inflammatory bowel diseases (IBD), this study examined both (1) how time-varying self-reported adherence barriers affect daily thiopurine adherence and (2) how adherence barriers at baseline affect daily thiopurine adherence over a six-month period. Methods Eighty-one adolescents 11-18 years old prescribed a once-daily oral IBD maintenance medication participated in a six-month observational study. Adherence barriers were self-reported monthly via the Medication Adherence Measure (MAM): Medication Subscale. Daily adherence estimates were collected via Medication Event Monitoring System (MEMS) Track Caps. Results Generalized linear mixed modeling indicated that time alone did not significantly predict whether one was more likely to be adherent (p = .602). However, increasing adherence barriers lowered the likelihood that a participant would be adherent on a given day, and the interaction between time and barriers predicted likelihood of adherence on a given day (p < .01). Specifically, when participants reported no adherence barriers at baseline, adherence did not significantly change over time (p = .369). However, when barriers were endorsed, adherence decreased over time (p < .01). Conclusions Fewer adherence barriers over time predicted greater likelihood of adherence on a given day, which is consistent with previous cross-sectional research. Routine assessment of barriers to adherence over the course of adolescence is critical in addressing suboptimal adherence behavior in youth with IBD.

Moving On: Transition Readiness in Adolescents and Young Adults With IBD

Background Inflammatory bowel diseases (IBD) often begins early in life. Adolescents and young adults (AYA) with IBD have to acquire behaviors that support self-care, effective healthcare decision-making, and self-advocacy to successfully transition from pediatric to adult health care. Despite the importance of this critical time period, limited empirical study of factors associated with transition readiness in AYA exists. This study aimed to describe transition readiness in a sample of AYA with IBD and identify associated modifiable and nonmodifiable factors. Methods Seventy-five AYA (ages 16-20) and their parents participated. AYA and parents reported on demographics, patient-provider transition-related communication, and transition readiness. AYA self-reported on disease self-efficacy. Disease information was abstracted from the medical record. Results Deficits in AYA responsibility were found in knowledge of insurance coverage, scheduling appointments, and ordering medication refills. Older AYA age, higher AYA disease-management self-efficacy, and increased patient-provider transition communication were each associated with higher overall transition readiness and AYA responsibility scores. Regression analyses revealed that older AYA age and increased patient-provider transition-related communication were the most salient predictors of AYA responsibility for disease management and overall transition readiness across parent and AYA reports. Conclusions AYA with IBD show deficits in responsibility for their disease management that have the potential to affect their self-management skills. Findings suggest provider communication is particularly important in promoting transition readiness. Additionally, it may be beneficial to wait to transition patients until they are older to allow them more time to master skills necessary to responsibly manage their own healthcare.

Development and preliminary validation of a patient-reported measure of patient–provider communication about medication prescriptions for adolescents and young adults

ABSTRACT This investigation examined psychometric properties of a patient–provider communication measure developed for adolescents/young adults receiving medication prescriptions. Two independent samples of participants completed the measure; Study 1 included measures for preliminary validity analyses, while Study 2 included measures of adherence and adherence barriers. In Study 1, exploratory factor analyses revealed a 15-item, 2-factor structure and supported preliminary validity. In Study 2, Total and Factor 1 (“Clarifying Rationale for Medication”) scores were associated with adherence, and Total and Factor 2 (“Encouraging Patient Adherence Behavior”) scores were associated with adherence barriers. Preliminary evidence supported the measure as useful for assessing patient-provider communication.

A bitter pill to swallow: Medication adherence barriers in adolescents and young adults with inflammatory bowel diseases

ABSTRACT Adolescents and young adults (AYA) with inflammatory bowel diseases (IBD) are at risk for nonadherence. This study described AYA adherence barriers and correlates of barriers. 77 AYA–parent dyads completed measures of adherence barriers. Disease frustration barriers were the most commonly endorsed barriers among AYA and parents. Females, those with Crohn’s disease, and those with active disease displayed higher levels of selected variables. AYA with IBD experience unique adherence barriers. Routine screening for barriers, especially disease frustration barriers, is warranted. Adherence-promotion interventions should be tailored to AYA’s unique experience and should emphasize disease and regimen frustration.

Examining predictors of healthcare utilization in youth with inflammatory bowel disease.

Background and aims Traditional definitions of healthcare utilization (HCU) emphasize clinical visits and procedures. Clinic calls, an understudied form of HCU, occur with high frequency. Understanding and examining predictors of HCU, such as disease activity and parent distress, may help reduce overutilization. Methods A total of 68 adolescents with inflammatory bowel disease [IBD; mean (SD) =14.18 (1.92) years] and their parents participated. Parent distress was assessed through parent report on the PedsQL Family Impact Module, and physicians provided ratings of patient disease activity using the Physicians Global Assessment index. Medical record reviews yielded HCU and clinic call information for 12 months after enrollment. HCU was operationalized as the total number of routine and sick gastrointestinal clinic visits, Emergency room visits, and IBD-related hospitalizations. A call composite reflected the total number of calls related to IBD symptoms/illness. Results Disease activity and parent distress predicted 12% of the variance in calls and 12% of the variance in HCU. Disease activity was the only significant predictor of clinic calls after accounting for the impact of other predictors; however, parent distress was the only individual variable that contributed significant variance to the prediction of HCU after accounting for other predictors. Conclusion Greater parent distress and disease activity together predicted HCU and clinic calls. Disease activity was the most salient predictor of calls, whereas parent distress was the most salient predictor of in-person HCU. Clinic calls should not be overlooked as a form of HCU, as communication that takes place outside of scheduled appointments utilizes resources and may indicate poorer disease control.