Transition to Adult IBD Care: A Pilot Multi-Site, Telehealth Hybrid Intervention.

OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.

Barriers to Transition From Pediatric to Adult Care: A Systematic Review.

Objective: Transition research in each disease group is developing in its own "silo." A comprehensive review of barriers to transition within and across chronic illness groups is needed to facilitate information sharing and larger-scale efforts to overcome barriers and improve patient care. This study systematically reviews and identifies the barriers to transition from pediatric to adult care across pediatric illness populations. Methods: Medline, CINAHL, PsychINFO, Social Services Abstracts, Web of Science, and the Cochrane library databases were searched. Peer-reviewed English articles presenting original data on barriers to transition to adult care, focused on a specific pediatric chronic illness population, and conducted in the United States were included. Study design, population, and barriers were extracted. Barriers were categorized according to the Socioecological Model of Adolescent/Young Adult Readiness to Transition. Articles were evaluated for study quality. Results: Fifty-seven articles were included. The most common barriers to transition fell within the "Relationships" domain (e.g., difficulties letting go of long-standing relationships with pediatric providers) followed by "Access/Insurance" (e.g., difficulty accessing/finding qualified practitioners, insurance issues), and "Beliefs/Expectations" (e.g., negative beliefs about adult care). Barriers related to "Knowledge" (e.g., limited patient/caregiver knowledge about medication/illness and the transition process) and "Skills/Efficacy" (e.g., lack of self-management skills) were also common. While relationship barriers were commonly reported by all, some barriers varied by transfer status (pre- vs. posttransfer). Conclusions: Each chronic illness group experiences illness-specific challenges but certain barriers transcend chronic illness populations. Suggestions to overcome these barriers are provided.

Healing the Hearts of Bereaved Parents: Impact of Legacy Artwork on Grief in Pediatric Oncology.

CONTEXT: Approximately 12% of children with cancer will not survive, representing a devastating loss for parents. Strategies to improve parental coping and grief have been understudied. Although legacy-making is frequently offered as standard care to children with terminal illness and their families, these interventions have received little empirical attention. OBJECTIVES: This study qualitatively explores the legacy-making and grief experiences of bereaved parents who participated in legacy artwork with their child before his or her death from cancer. METHODS: Twelve bereaved parents and 12 healthcare providers participated in individual semistructured interviews guided by the Dual Process Model of Grief and Continuing Bonds theory. Qualitative data were analyzed via conventional content analysis. RESULTS: Five themes emerged. Legacy artwork allows for family bonding and opens communication regarding the child's impending death; provides opportunities for parents to engage in life review and meaning-making; is often displayed in the parents' home after the child's death, and parents take comfort in using these projects to continue their bond with their deceased child; can ameliorate parents' grief after their child's death; and may reduce healthcare providers' compassion fatigue and provide them an outlet for coping with their patients' deaths. CONCLUSION: Participating in legacy artwork may result in self-reported positive outcomes for bereaved parents before and after their child's death, including family bonding, enhanced communication, meaning-making, and improvements in grief. As a result of these benefits, children's hospitals may consider offering legacy artwork for children with cancer and their families.

Barriers to Treatment Adherence Among College Students with Attention-Deficit/Hyperactivity Disorder.

OBJECTIVE: The current study sought to obtain a longitudinal perspective of and quantitatively assess barriers to medication adherence experienced by college students with attention-deficit/hyperactivity disorder (ADHD). Thus, we examined semester-long trends in barriers to adherence in addition to the relationships between barriers and medication adherence and barriers and quality of life. METHODS: Participants were college students diagnosed with ADHD. Throughout a Fall semester, participants completed 4 sets of online questionnaires and attended 4 in-person visits, which included pill counts and written questionnaires. Participants completed measures assessing barriers to adherence and health-related quality of life, and adherence was measured via pill counts. Mean values of barriers, adherence rate, and quality of life were used for all analyses. RESULTS: Of the 45 students surveyed, mean adherence rate was 56.70%, and 84.45% of participants reported at least 1 barrier. Across the semester, participants reported experiencing an average of 3.07 barriers, and a consistent barrier reported was not realizing when pills run out. Although reported barriers were unrelated to adherence, the results showed that barriers were associated with lowered quality of life, specifically lower overall quality of life in addition to lower emotional functioning, psychosocial health, school functioning, and physical functioning. CONCLUSION: Barriers to adherence appear to be common in college students with ADHD, and certain barriers are consistent with the planning difficulties observed in individuals with ADHD. Because students experiencing more barriers had lower quality of life, interventions are needed to improve students' overall illness management experience.

Subjective Versus Objective Measures of Medication Adherence in Adolescents/Young Adults with Attention-Deficit Hyperactivity Disorder.

OBJECTIVE: To examine the frequency of medication nonadherence using both objective and subjective data and to compare the differences between these measures in adolescents and young adults (AYAs) with attention-deficit hyperactivity disorder (ADHD). METHOD: Fifty-four participants enrolled. Frequency (mean percent of prescribed doses not taken) of nonadherence was measured using subjective (visual analog scale) and objective (pill count and electronic monitoring) methods. Differences between measures were compared using t tests and analysis of variances. RESULTS: Objective measures showed that participants missed 40% to 43% of their prescribed doses. Contrastingly, subjective measures indicated that participants missed 25% of their prescribed doses. Frequency of nonadherence was significantly higher when relying on objective measures rather than on subjective measures (t[46] = -4.51, p < 0.01 for pill counts, and t[47] = -4.81, p < 0.01 for electronic monitoring). CONCLUSION: Nonadherence is high in AYAs with ADHD. These individuals tend to overestimate their adherence when self-reporting. Physicians should exercise caution when prescribing based on patient report of adherence and use objective measures when possible.

Parent Perceptions of Their College Students' Self-Management of Attention-Deficit/Hyperactivity Disorder.

PURPOSE: The present study examines parents' perspectives of the experiences and challenges surrounding self-management of Attention-Deficit/Hyperactivity Disorder (ADHD) in their college students. METHODS: Participants were parents of emerging young adults with ADHD prescribed daily medication for their condition. Thirteen individual interviews were conducted using a semistructured interview script guided by the Health Belief Model. The qualitative data were analyzed via directed content analysis. RESULTS: Five themes emerged from the interviews: (1) parents are heavily involved in their child's self-management prior to college, and the abrupt transition of responsibilities is difficult for parents; (2) parents' worries about their child's self-management and functioning are exacerbated by privacy laws and poor communication from child and university; (3) volitional nonadherence is high; (4) obtaining academic accommodations is difficult; and (5) parents recommend a gradual transition, desire enhanced communication from the college, and wish for social support resources in the college setting for their children. CONCLUSIONS: Parents of college students with ADHD are distressed and frustrated by the transition to college. They express the desire to remain continually involved in their child's self-management of ADHD, but several barriers hinder their ability to do so, resulting in fear of the potential consequences on their child's functioning. This collateral information from parents regarding the challenges associated with ADHD self-management experiences in college should result in the development of comprehensive interventions to improve the quality of life in college students with ADHD.

Medication adherence in pediatric asthma: A systematic review of the literature.

OBJECTIVE: To provide a systematic review of correlates of adherence to inhaled corticosteroids (ICS) in pediatric asthma across the individual, family, community, and healthcare system domains. METHODS: Articles assessing medication adherence in pediatric asthma published from 1997 to 2016 were identified using PsychINFO, Medline, and CINAHL. Search terms included asthma, compliance, self-management, adherence, child, and youth. Search results were limited to articles: 1) published in the US; 2) using a pediatric population (0-25 years old); and 3) presenting original data related to ICS adherence. Correlates of adherence were categorized according to the domains of the Pediatric Self-Management Model. Each article was evaluated for study quality. RESULTS: Seventy-nine articles were included in the review. Family-level correlates were most commonly reported (N = 51) and included socioeconomic status, race/ethnicity, health behaviors, and asthma knowledge. Individual-level correlates were second-most common (N = 37), with age being the most frequently identified negative correlate of adherence. Health care system correlates (N = 24) included enhanced asthma care and patient-provider communication. Few studies (N = 10) examined community correlates of adherence. Overall study quality was moderate, with few quantitative articles (26.38%) and qualitative articles (21.4%) referencing a theoretical basis for their studies. CONCLUSIONS: All Pediatric Self-Management Model domains were correlated with youth adherence, which suggests medication adherence is influenced across multiple systems; however, most studies assessed adherence correlates within a single domain. Future research is needed that cuts across multiple domains to advance understanding of determinants of adherence.

Transition to College and Adherence to Prescribed Attention Deficit Hyperactivity Disorder Medication.

OBJECTIVE: As youth with attention deficit hyperactivity disorder (ADHD) transition to adulthood, they must learn how to manage their ADHD treatment independently. This may be challenging because many of the skills necessary to adhere to treatment (e.g., organization, planning) are impaired in those with ADHD. Using electronic monitoring, we examine trajectories of adherence to medication in a cohort of college students with ADHD. Further, we examine the effect of transitioning to college and executive functioning on adherence. METHODS: Electronic monitors tracked adherence for 51 undergraduate students with ADHD across an academic semester. Multilevel modeling examined individual trajectories in monthly adherence and the role of transition status and self-reported executive functioning on these trajectories. RESULTS: Overall, participants adhered to 53.53% of prescribed doses. Transition status predicted the linear slope in adherence (ß = -8.95, standard error [SE] = 3.61, p < .05), with lower initial adherence among undergraduates transitioning to independence (34.17%) compared with post-transition undergraduates (67.63%; ß = 33.46, SE = 8.00, p < .001). Adherence demonstrated a curvilinear change (ß = -7.23, SE = 1.25, p < .001). It increased from the beginning of the semester to midterms before subsequently declining through the rest of the semester, including during final exams. Executive functioning did not predict adherence (ß = -.10, SE = .02, p = .54). CONCLUSION: Only half of all doses were taken as prescribed. Adolescents transitioning to independence demonstrated the lowest levels of adherence, suggesting that the transition to independence is a high-risk period for poor self-management of ADHD.

The Influence of Motivational Interviewing on Patients With Inflammatory Bowel Disease: A Systematic Review of the Literature.

Inflammatory bowel disease (IBD) is a condition accompanied by several physical and often psychological symptoms (e.g., depression). Treatments generally involve dietary modifications and prescription medications. Of concern, non-adherence rates with prescription medications for this population have been reported to be between 30% and 45%. In order to examine an intervention that has shown promise in improving adherence, researchers systematically reviewed the literature in order to determine the impact of a motivational interviewing (MI) intervention on outcomes for individuals diagnosed with IBD. The outcomes assessed were broad and included, among others, the target behaviors of medication adherence and advice-seeking, and also patient-perceived provider empathy. Results suggest that MI can be effective in improving outcomes for individuals with IBD since patients experienced improved adherence rates, displayed greater advice-seeking behavior, and perceived providers as having more empathy and better communication skills. Further research is required since the pool of retained studies is small, evidencing a paucity of literature focusing on this evidence-based health behavior intervention for the behaviors needed to optimally manage IBD. Further, only adults were examined in these studies, so generalizations to children and adolescents are limited.

Adherence to Attention-Deficit/Hyperactivity Disorder Medication During the Transition to College.

PURPOSE: The present study explores the medication self-management experiences of adolescents with attention-deficit/hyperactivity disorder (ADHD) during their transition to young adulthood in college. METHODS: Participants were college freshmen with ADHD prescribed daily medication for their condition. Ten individual interviews were conducted using a semistructured interview script. Measures related to ADHD medication management were also completed. Qualitative data were analyzed via directed content analysis and quantitative data via descriptive statistics. RESULTS: Five themes emerged from interviews: (1) transitions to independence are often abrupt, and many adolescents lack critical self-management skills; (2) volitional nonadherence is high due to inaccurate disease beliefs, perceived academic demands, and medication side effects; (3) poor self-management negatively impacts school performance; (4) peer pressure to share medication affects social functioning and adherence; and (5) social support is greatly needed. Common barriers to adherence included "don't feel like taking medication" (90%) and "difficulties in sticking to a fixed medication schedule" (80%). CONCLUSIONS: Participants with ADHD were not prepared to manage their chronic illness independently in context of increased demands and newfound freedom, resulting in negative academic consequences. Social factors also play an influential role in ADHD self-management, particularly related to the isolation associated with sharing the medication and its side effects. Intervention programs targeting medication self-management during the transition to independence are greatly needed for young adults with ADHD as high academic performance in college is critical for future success.