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Background: Nonadherence to treatment recommendations is associated with poorer outcomes in inflammatory bowel disease and may increase the cost of care. We examined the longitudinal relationship between nonadherence and health care costs and hypothesized that at least 3 distinct trajectories of nonadherence would be observed and that increasing nonadherence would account for significantly greater health care costs after controlling for disease activity. Methods: Ninety-nine patients aged 2 to 21 years with inflammatory bowel disease were recruited into this 2-year longitudinal study. Medication possession ratios were calculated from pharmacy refill data, disease activity ratings were obtained from medical charts, and hospital and physician charges associated with an International Classification of Diseases, Ninth Revision code for ulcerative colitis or Crohn's disease were obtained from the hospital's accounting database. Results: An average total cost effect size of d = 0.68 was observed between the increasing severity and stable low severity groups, but the confidence intervals overlap. Conversely, patients with increasing nonadherence demonstrated significantly higher health care costs than patients with stable ≤10%, stable 11% to 20%, or decreasing nonadherence. Conclusions: Medication nonadherence is related to increased health care costs after controlling for disease severity. Patients with increasing nonadherence over time demonstrate more than a 3-fold increase in costs compared with adherent patients. In addition, patients whose adherence improves over time incur approximately the same costs as those who are consistently adherent. This suggests that, in addition to leveraging prevention efforts to keep patients from becoming more nonadherent as treatment continues, efforts aimed at modifying adherence behavior may result in significant cost savings over time.

Inflammatory bowel disease (IBD) is a chronic idiopathic disease characterized by an unpredictable course that includes intermittent periods of symptom exacerbation and remission. In addition to coping with the uncertainties of their disease, youth with IBD are responsible for managing a complex and potentially burdensome treatment regimen that is sometimes associated with negative side effects.1,2 Collectively, these factors place youth with IBD at increased risk for emotional and behavioral problems,3,4 which in turn have been associated with medication nonadherence in adolescents5 and poor disease outcomes, including increased relapses and disease activity, in adults with IBD.6,7 Thus, identifying patients at risk for experiencing psychosocial difficulties is critical in preventing adverse outcomes; yet the implementation of screening measures into standard clinical practice remains a challenge. One measure of psychosocial adjustment to chronic illness that has traditionally been conceptualized as an important outcome in adult and pediatric health is health related quality of life (HRQOL), defined as a patient's current perception of functioning across several areas. In addition to its responsiveness to treatment intervention8 and association with disease severity9,10 and barriers to care,11 to name a few, HRQOL has demonstrated its clinical utility in several adult chronic illness populations. For instance, HRQOL predicted mortality and hospitalizations independent of several demographic (e.g., age, gender, socioeconomic status) and comorbid factors (e.g., medication dose, time on dialysis, and body mass index) in a large sample of adults with end-stage renal disease.12 In adults with myocardial infarction, lower physical HRQOL was related to poorer treatment adherence, using both cross-sectional and prospective approaches, even after controlling for depression.13 In one study of pediatric patients on managed care health plans, parent proxy-reported HRQOL predicted healthcare costs over 6, 12, and 24 months.14 Although youth perspective on how their illness impacts daily functioning and HRQOL is the preferred method, parent proxy-reported HRQOL is a vital and valid estimate of youth HRQOL when the child is either unable to participate in the evaluation or the validity of his responses is in question.15 In addition to its predictive utility which has seldom been examined, HRQOL is an advantageous clinical tool because a large proportion of youth with chronic illness present with sub-clinical levels of depression but significant functional impairment in important life domains.16,17 This is particularly concerning given that poor HRQOL is related to increased school/work absenteeism, lower standardized achievement and intelligence testing scores, and work productivity loss.18-21 Without HRQOL screening, a subgroup of patients may be overlooked and not receive the necessary resources or referrals for additional services (e.g., psychological, education specialists, social services). Taken together, these findings support the need for screening youth HRQOL during clinic visits in order to identify those at risk for further psychosocial difficulties and poor disease outcomes. To our knowledge, few studies have examined the relationship between HRQOL and clinical outcomes,12,13,22 and only one included a pediatric sample14; however, that study did not evaluate youth-reported HRQOL and included costs accrued as the sole measure of healthcare utilization. The current study advances the existing literature by examining the clinical utility of youth and parent proxy-reported HRQOL in predicting disease severity and healthcare utilization in a sample of youth with IBD. Specifically, lower HRQOL was hypothesized to predict higher physician-rated disease severity at baseline and increased healthcare utilization, including more IBD-related hospital admissions, Emergency Department (ED) visits, phone calls to the provider, psychological services, GI clinic visits, and referrals for pain management over the next 12 months.

Crohn’s disease and ulcerative colitis (collectively known as inflammatory bowel disease; IBD) are chronic conditions characterized by uncontrolled intestinal inflammation and periods of disease activity and remission.1 An estimated 20-25% of all IBD cases have an onset in childhood or adolescence,2-3 with a median age at diagnosis of 15 years and an incidence of 71 per 100,000.4 Children and adolescents with IBD must often deal with unpredictable, unpleasant, and potentially embarrassing gastrointestinal symptoms (e.g., abdominal pain, diarrhea, rectal bleeding) in addition to treatment-related side-effects and burden.1 Though treatment of IBD varies by individual case presentation, regimens are often complex and may consist of multiple medication doses per day, dietary modifications, and, in some cases, surgical intervention.5 Though the goal of medical treatment is to minimize symptom activity and disease-related complications, it is clear that IBD and its treatment impact many areas of patient functioning beyond physical health. As such, there is an increasing need to conceptualize patient health more broadly by incorporating assessments of patient emotional and social well-being into treatment decision making and estimates of health outcome. This is especially true given increased focus on improving long-term patient outcomes.6 Health-related quality of life (HRQOL) measures a patient’s perception of their health status and the impact of their illness on their physical, social, and emotional functioning.3 Though HRQOL research in the adult IBD literature has been examined extensively,7-8 there is considerably less inferential research on HRQOL in pediatric IBD. In particular, there is scant evidence regarding predictors of HRQOL in pediatric IBD. Thus, little is known about patient factors that are associated with better or worse quality of life outcome in children and adolescents with IBD. Among the extant research, disease activity has emerged as a consistent predictor of HRQOL in pediatric IBD. Compared to individuals whose symptoms are quiescent or in remission, children/adolescents with greater disease activity report lower levels of HRQOL.3, 6 Though this relationship makes intuitive sense as lowered HRQOL may be due in part to the functional impairment of increased gastrointestinal symptoms and perhaps side-effects of more aggressive treatment to control symptoms, this is a unidimensional conceptualization of HRQOL, which is a multidimensional construct. Disease severity accounts for a relatively small proportion of variance in HRQOL in this population3, suggesting that other factors may contribute to HRQOL. Moreover, research examining the mechanisms through which disease activity impacts HRQOL is greatly needed as this is a poorly understood yet important area of research and clinical care. Indeed, because,other factors that either improve or worsen HRQOL have not yet been identified,9 our ability to design interventions to improve HRQOL and maximize health outcome is limited. Thus, it is imperative that research articulates the relationship between disease activity and HRQOL by examining a broader range of factors related to patient’s quality of life. Because social and emotional factors are significant aspects of overall HRQOL, behavioral dysfunction may explain a portion of the variance in HRQOL. Behavioral dysfunction refers to both internalizing symptoms (e.g., anxiety, depression) and externalizing symptoms (e.g., aggression, disruptive behavior). Several studies have examined rates of behavioral dysfunction in children with IBD and healthy controls. In general, children with IBD are at greater risk of having problems in emotional and behavioral functioning (Mackner et al., 2006) and are rated by their parents as displaying greater levels of internalizing symptoms (e.g., anxiety, depression) than healthy controls.10-11 Although the relationship between behavioral dysfunction and HRQOL has been documented in other chronic illness groups, 12-13 this has not been examined in the pediatric IBD population. Currently, many gaps exist in the research literature with regard to HRQOL in adolescents with IBD. Disease severity only explains a small portion of the variance in HRQOL and little is known regarding other factors that may impact HRQOL or the mechanisms through which disease activity impacts HRQOL. Based on research in other pediatric populations, one potential factor that may increase our understanding of HRQOL outcome in IBD is behavioral dysfunction. To this end, the current study was designed to examine the relationship among behavioral dysfunction and disease activity with HRQOL in a sample of adolescents with IBD. Greater behavioral dysfunction and greater disease severity were hypothesized to predict poorer HRQOL. Furthermore, behavioral dysfunction was expected to mediate the relationship between disease activity and HRQOL.

Background: This study compared youth and parent-proxy reports of health-related quality of life (HRQoL) among youth with inflammatory bowel disease (IBD) to published comparison group data and examined concordance between youth and parent-proxy reports of HRQoL. Methods: One hundred thirty-six youth and parent-proxy reports on the PedsQL 4.0 Generic Core Scales were compared to published data from chronically ill, acutely ill, and healthy comparison groups using independent samples t-tests. Reporter agreement was examined using paired samples t-tests and intraclass correlations (ICCs). Results: Youth with IBD reported lower psychosocial functioning than the healthy comparison group, higher physical and social functioning than the chronically ill group, and lower school functioning than all published comparison groups. Parent-proxy reports of youth HRQoL were higher than the chronically ill group, but lower than the healthy group on all scales except psychosocial functioning. Youth with active IBD reported lower physical health domain scores than youth with inactive disease. Concordance between youth and parent-proxy reports was moderate, with the lowest agreement in school and social functioning. Conclusions: Youth with IBD and their parents rate HRQoL as lower than healthy youth but do not perceive the impact of IBD to be as limiting as in other chronic conditions. Youth report suggests that IBD may be particularly detrimental to HRQoL in the school functioning domain. Moderate agreement between parent and youth reports substantiates continued use of multiple informants in studies of pediatric HRQoL. Inflamm Bowel Dis 2010

BACKGROUND The current transition literature is a fragmented assortment of studies examining select subsections of transition stakeholders. METHODS Adolescent/young adult patients with IBD (40% transferred to adult care), parents, and health providers (53.8% adult providers) participated in 1 of 6 focus group interviews focused on concerns and needs surrounding transition to adult care. Data were analyzed through directed content analysis. RESULTS Transition needs/concerns focused on (1) losing relationships with pediatric providers, (2) perceptions of poorer quality care from adult providers, (3) high parent involvement preventing the development of youth self-management skills, and (4) finances and insurance. Suggestions to improve transition to adult care included the following: (1) meeting alone with adolescents during appointments, (2) providing concrete guidance on how/when to transition responsibility, and (3) increasing accountability for adolescents. Recommendations to improve transfer included the following: (1) providing more information about the transfer process and adult providers, (2) obtaining peer support and mentoring, and (3) setting goals and deadlines for transfer. CONCLUSIONS Inclusion of several stakeholder groups allowed for the identification of commonalities across groups as well as their unique needs and concerns surrounding transition to adult care. Concerns and recommendations by participants should be targeted in future transition program efforts.

BACKGROUND Almost 80% of adult gastroenterologists report inadequacies in the preparation of patients transferred from pediatrics. To improve transition to adult care, it is important to identify the specific deficits that patients are demonstrating before transfer. We present data from a clinic-wide assessment of transition readiness skill acquisition in adolescents/young adults with IBD. METHODS A total of 195 patients (age, 16-25 yr) with IBD completed the Transition Readiness Assessment Questionnaire. Patient age, diagnosis, time since diagnosis, physician global assessment, and patient and parent disease management confidence ratings were extracted from the medical record. Transition Readiness Assessment Questionnaire scores were compared with a benchmark established by an interdisciplinary, multi-institutional Transition Task Force. RESULTS Only 5.6% of older adolescents/young adults on the verge of transfer to adult care met our institutional benchmark (3.5% of adolescents, 7.3% of young adults). Patients reported mastery of 9.10 ± 4.68 out of 20 Transition Readiness Assessment Questionnaire items. Transition readiness was associated with older age (r = 0.27, P < 0.001) and female gender (F(1,192) = 13.81, P < 0.001) but not time since diagnosis, physician global assessment, or confidence ratings. Deficits in health care utilization/self-advocacy (e.g., understanding insurance, scheduling appointments/following up on referrals), and self-management (e.g., filling/reordering prescriptions) were observed. CONCLUSIONS Most patients on the verge of transferring to adult care are not demonstrating transition readiness. Deficits observed represent modifiable behaviors. Using data-driven assessments to guide interventions to enhance transition readiness may minimize the retention of young adult patients in pediatrics and result in patients who are better prepared for adult care.

Background: The objective was to examine the prevalence and frequency of oral medication nonadherence using a multimethod assessment approach consisting of objective, subjective, and biological data in adolescents with inflammatory bowel disease (IBD). Methods: Medication adherence was assessed via pill counts, patient/parent interview, and 6-thioguanine nucleotide (6-TGN)/6-methylmercaptopurine nucleotide (6-MMPN) metabolite bioassay in 42 adolescents with IBD. Pediatric gastroenterologists provided disease severity assessments. Results: The objective nonadherence prevalence was 64% for 6-MP/azathioprine (AZA) and 88% for 5-aminosalicylate (5-ASA) medications, whereas subjective nonadherence prevalence was 10% for 6-MP/AZA and 2% for 5-ASA. The objective nonadherence frequency was 38% for 6-MP/AZA and 49% for 5-ASA medications, and subjective nonadherence frequency was 6% for 6-MP/AZA and 3% for 5-ASA. The bioassay data revealed that only 14% of patients had therapeutic 6-TGN levels. Conclusions: The results indicate that objectively measured medication nonadherence prevalence is consistent with that observed in other pediatric chronic illness populations, and that objective nonadherence frequency is considerable, with 40%–50% of doses missed by patients. Subjective assessments appeared to overestimate adherence. Bioassay adherence data, while compromised by pharmacokinetic variation, might be useful as a cursory screener for nonadherence with follow-up objective assessment. Nonadherence in 1 medication might also indicate nonadherence in other medications. Clinical implications and future research directions are provided. (Inflamm Bowel Dis 2008)