Poor Knowledge of Personal and Familial Colorectal Cancer Risk and Screening Recommendations Associated with Advanced Colorectal Polyps.

BACKGROUND AND AIMS: Advanced colorectal polyps (adenoma or sessile serrated polyp ≥ 1 cm, adenoma with villous features, adenoma with high-grade dysplasia, or any sessile serrated polyps with dysplasia) are associated with an increased risk of future advanced colorectal neoplasia and confer an increased risk of advanced neoplasia to first-degree family members. Professional societies therefore recommend more intensive surveillance of these polyps and earlier screening for first-degree relatives. The aim of this study was to assess knowledge of personal and familial risk and recommendations among patients with advanced colorectal polyps and identify predictors of knowledge. METHODS: An online survey was designed to assess the domains of knowledge and risk perception regarding personal and familial colorectal cancer risk and screening recommendations. After expert review and pilot testing, the 37-item survey was electronically sent to all patients diagnosed with an advanced colon or rectal polyp under the age of 60. Patient report of polyp findings was compared to documented findings in the medical record. Univariable and multivariable regressions were performed to evaluate predictors of knowledge. RESULTS: One hundred thirty-seven out of 344 (39.8%) eligible patients responded to the survey. 28.5% of participants reported that the polyp they had removed was precancerous. 54.8% of participants reported that they have a higher risk of CRC, and 65.2% reported that they should be undergoing colonoscopy surveillance in 3 years or less. 40.1% reported that their first-degree family members are at increased CRC risk, and 38.0% reported that first-degree family members should get earlier screening. Participants reported their endoscopists as their top source of information about risk and recommendations, though only 7.3% of endoscopists made recommendations for family members. Female gender and higher income were predictors of accurate knowledge, as endoscopist was the main source of knowledge. CONCLUSIONS: Patients with advanced colorectal polyps have poor knowledge of personal and familial CRC risk and recommendations. Endoscopists who remove advanced polyps are in an ideal position to educate their patients about their personal risk and the risk and recommendations for first-degree family members.

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.

Reliability and validity of the Beliefs About Medication Scale in pediatric inflammatory bowel disease.

Low adherence is a pervasive issue among youth with inflammatory bowel diseases (IBD), yet our understanding of perceived adherence barriers is hampered by a lack of validated instruments. This study sought to address this by evaluating the reliability and predictive validity of the Beliefs About Medication Scale (BAMS) among youth with IBD. Seventy-six youth (ages 11-18) with IBD who were prescribed a daily oral IBD medication completed baseline ratings of perceived adherence barriers via the BAMS. Parents provided information about patient demographic and disease factors. Subjective medication adherence was assessed via the medication adherence measure. Objective medication adherence was assessed via Medication Event Monitoring System (MEMS) Track Caps. BAMS subscales demonstrated adequate internal consistency ( αs = .78-.90) and test-retest reliability ( rs = .64-.79). BAMS subscales reliably distinguished between adherent and low adherent groups, though intent to adhere (IA) was the only independent predictor of adherence status. The BAMS holds promise as a tool for assessing adherence barriers among adolescents with IBD. IA may be of particular value in identifying adolescents at risk for low adherence.

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.

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.

Trajectories of oral medication adherence in youth with inflammatory bowel disease.

OBJECTIVE: To examine longitudinal trajectories of oral thiopurine adherence over a 180-day interval in a sample of youth with inflammatory bowel disease (IBD) and to identify the role of disease activity, length of time since diagnosis, and regimen complexity in predicting adherence trajectory class membership. METHOD: Participants included 96 adolescents (M age = 14.32 years) with IBD. Oral medication adherence was assessed via MEMS Track Caps (i.e., an electronic monitor that allows for real-time assessment of adherence) for 6 months, after which time devices were collected and data were downloaded. Medical record reviews provided information about participants' disease activity, length of time since diagnosis, and regimen complexity (including both medications and supplements) at the time of study enrollment. RESULTS: Two distinct adherence trajectory classes emerged: Group 1 represented those with consistently near-perfect adherence, whereas Group 2 represented those with mild nonadherence that increased with time. Complexity of medication regimen emerged as the only predictor of trajectory class, with adolescents whose regimen involved more than 1 daily medication administration time being more likely to be classified in Group 2 (i.e., the consistently near-perfect adherence group) than those whose regimen involved only 1 daily medication administration time. CONCLUSIONS: Distinct classes of adherence trajectories in pediatric IBD can be identified with longitudinal data collection approaches; however, disease and regimen factors offered limited value in predicting adherence trajectory class. Future research should utilize longitudinal conceptualizations of adherence and examine alternative predictors of declining adherence over time.

Pain severity and pain catastrophizing predict functional disability in youth with inflammatory bowel disease.

BACKGROUND: Abdominal pain is commonly reported by youth with IBD. In a significant subset of youth, pain severity and pain catastrophizing (i.e., unhelpful thoughts related to the pain) may contribute to more negative outcomes and greater impairment in functioning. This study aimed to examine relationships of pain severity and pain catastrophizing with functional disability among a sample of youth with inflammatory bowel disease (IBD). METHODS: Seventy-five youth aged 11 to 18 years completed ratings of abdominal pain severity, pain catastrophizing, and functional disability using validated measures. Disease activity was rated by treating physicians. RESULTS: Over half of participants reported abdominal pain in the past two weeks, and pain was present among those with and without clinical disease activity. Nearly one-third of youth reported mild to moderate functional disability. After controlling for gender, pain severity accounted for 15% of the variance in patient functional disability. Moreover, pain catastrophizing contributed significant variance to the prediction of functional disability (approximately 7%) beyond the role of pain severity. CONCLUSIONS: Greater attention to the role of pain catastrophizing in contributing to functional disability in youth with IBD may be important given that pain-related cognitions are modifiable via intervention.

Correlates of health-related quality of life in pediatric inflammatory bowel disease: a cumulative risk model approach.

OBJECTIVE: To examine associations between disease-related, individual, and contextual risk factors and health-related quality of life (HRQoL) in a sample of youth with inflammatory bowel disease using a cumulative risk model framework. METHODS: Participants were 50 youth (58% male; M age = 15 years). Youth and parents completed measures of HRQoL, psychological functioning, and family functioning. Disease information was collected from medical record reviews. Medication adherence was electronically monitored via MEMS cap bottles. A cumulative risk index (CRI) was constructed based on disease activity, disease type, gender, anxiety/depression, medication adherence, general family functioning, disease-specific family functioning, and socioeconomic status. RESULTS: The CRI was associated with all youth- and mother-reported HRQoL domains. Furthermore, contextual domain factors were most consistently associated with youth and maternal reports of HRQoL. CONCLUSION: These results show promise in supporting the value of the CRI in identifying potential risk factors for lower HRQoL in a cross-sectional sample.