Patient, Parent, and Provider Perceptions of Barriers to Pediatric Inflammatory Bowel Disease Care.

Objectives: Children with inflammatory bowel disease (IBD) have a significant life-long burden as a result of disease, impacted by environmental and individual barriers. Successful health system interventions require a comprehensive approach, informed by various stakeholders. The main objective was to identify health system barriers and potential solutions from existing patients, families, and providers via focus groups. Methods: Participants for the focus groups were existing English-speaking patients (ages 9-18) with IBD, their caregiver(s), and providers including multiple professions (eg, physician, nurse, pediatrician, social worker, care coordinator, scheduler, and psychologist). Separate focus groups were led by experienced personnel for parents, children, and providers, using a standardized interview guide. Sessions were recorded, transcribed, and verified. Using content analysis, we systematically classified data through coding and identified themes. Results: Focus groups comprised (a) 3 patient groups (n = 20, 50% female, including 2 younger; mean age = 11.4 ± 1.5 years) and 1 older group (mean age = 15.6 ± 1.3 years), (b) 3 parent groups (n = 24, 83% female), and (c) 2 multidisciplinary provider groups (n = 19). Families shared several common concerns with providers (eg, school, care delay, psychosocial, and financial) but varied on specifics. Some barriers may be addressable through family or staff education, improved communication (eg, care delay/ access, transition), or training (eg, labs and diet), while others may require change at an institutional or policy level (eg, insurance). Conclusions: This qualitative analysis identified several barriers to IBD care, some shared, some unique to patients, parents, and providers, highlighting the importance of obtaining multiple stakeholder perspectives when exploring barriers to care.

Practice Survey: Depression Screening in Pediatric Inflammatory Bowel Disease.

BACKGROUND: Little is known about depression screening practices in pediatric inflammatory bowel disease (IBD) care. This study summarizes depression screening within IBD centers in the ImproveCareNow Collaborative Network. METHODS: Pediatric IBD providers across 79 IBD centers completed an online survey on current practices surrounding depression screening. RESULTS: Half of centers report doing annual depression screening, largely for patients 12-14 years. The Patient Health Questionnaire (PHQ-9) is most often used. For positive depression screens, most centers refer for evidence-based psychotherapy and/or a psychosocial provider meets with the patient during that visit. Suicidal ideation is addressed by calling a psychosocial provider to clinic or sending a patient to the emergency department. Barriers to routine screening include lack of personnel/resources, billing, and lack of clinic time. CONCLUSIONS: Pediatric IBD centers conducting depression screening provide targeted intervention based on screening and include psychosocial providers in the process. Greater understanding of screening efforts can inform future clinical efforts.

Depression Screening in Pediatric Inflammatory Bowel Disease Clinics: Recommendations and a Toolkit for Implementation.

OBJECTIVE: Rates of youth depression are increasing, and approximately 75% of adolescents with depression go unrecognized. Research in pediatric IBD documents increased depression risk, with rates up to 25%, as well as worse adherence and treatment outcomes associated with depressive symptoms. Evidence-based psychological interventions improve the physical and emotional health of these patients, highlighting the importance of detection and treatment. Psychosocial screening has been shown to increase the accurate identification of psychosocial problems and facilitate timely psychosocial intervention. The objective of this article is to establish clinical guidelines for depression screening in youth diagnosed with IBD and to provide resources for implementation. METHODS: The psychosocial screening task force group constituted of psychologists and social workers in the ImproveCareNow (ICN) learning health system reviewed research and clinical guidelines in other fields, and consulted with physicians, nurses, other psychosocial professionals, patients with IBD, and parents of children with IBD in ICN. RESULTS/CONCLUSIONS: It is recommended that adolescents with IBD ages 12 and older be screened for depression annually. Additional practical recommendations for implementation, triage, and treatment within the pediatric gastroenterology clinic are also provided.

Fecal microbiota and metabolites are distinct in a pilot study of pediatric Crohn's disease patients with higher levels of perceived stress.

Stress is associated with increased Crohn's Disease (CD) activity. This pilot study tested whether pediatric patients with CD reporting higher levels of perceived stress exhibited differences in the fecal microbiome and metabolome. The perceived stress scale (PSS) questionnaire was administered within 2 days of collecting a stool sample for microbiome (using 16S rRNA gene sequencing) and metabolome (using NMR metabolomics) analyses. Higher levels of perceived stress were correlated with increased disease activity on the short Pediatric Crohn's Disease Activity Index (sPCDAI). Patients with High PSS scores vs. Low PSS scores based on a median split had significantly lower relative abundances of Firmicutes and Anaerostipes, as well as higher relative abundances of Parabacteroides. Fecal alanine and nicotinate were also significantly different in patients with High vs. Low PSS Scores. This pilot study suggests that the fecal microbiome and metabolome differs in pediatric patients with CD and high perceived stress.

Focus groups for developing a peer mentoring program to improve self-management in pediatric inflammatory bowel disease.

OBJECTIVES: Inflammatory bowel disease (IBD) presents challenges for self-management in many areas. A peer mentoring program may offer advantages over other forms of self-management interventions because youth may be more receptive to learning self-management skills from a peer than from a parent or professional. The purpose of the present study was to identify themes from focus groups to inform development of a peer mentoring program for improving self-management in pediatric IBD. METHODS: Focus groups were conducted for youth ages 12 to 17, stratified by age (3 groups; n = 14), young adults ages 18 to 20 (1 group; n = 5), and parents of the youth (3 groups; n = 17). Broad questions covered program goals, general program characteristics, mentor/mentee characteristics, and family involvement, and transcriptions were analyzed via directed content analysis, with the a priori codes specified as the broad questions above. RESULTS: Participants identified the primary goals of a program as support, role model, information/education, and fun. They described a program that would include a year-long, 1-on-1 mentor relationship with a peer who has had IBD for at least a year, educational group activities, fun activities that are not focused on IBD, expectations for in-person contact 1 to 2 times per month, and mentor-to-mentor and parent support. CONCLUSIONS: Many of the suggestions from the focus groups correspond with research findings associated with successful mentoring programs. Using participants' suggestions and empirically based best practices for mentoring may result in an effective peer mentoring program for improving self-management in youth with IBD.

Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

This clinical report aims to review key self-management and adherence issues in pediatric inflammatory bowel disease (IBD) and to provide recommendations for health care providers regarding evidence-based assessment and treatment approaches to promote optimal self-management. Self-management difficulties in the form of nonadherence to treatment regimens are common in pediatric IBD and are influenced by various disease-related, individual, family, and health professional relationship factors. To promote adaptive self-management, health care providers are encouraged to adopt a long-term preventive orientation, which includes routine screening of barriers to self-management and nonadherence in the context of routine clinic appointments. The use of a multimethod approach to assessment that incorporates objective measures (eg, pill counts or bioassays) may be particularly advantageous. Individualized treatment approaches that incorporate evidence-based practices, such as providing written treatment plans and offering opportunities to practice and receive feedback on skills, may help to ameliorate minor self-management concerns; however, more severe or chronic self-management problems may require a referral for behavioral health intervention. Additional research to broaden our understanding of self-management in domains beyond medication adherence and to evaluate the effect of clinic-based interventions is imperative.

Psychosocial issues in pediatric inflammatory bowel disease: report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

Pediatric inflammatory bowel disease (IBD) can affect many areas of psychosocial functioning, and comprehensive medical care includes consideration of psychosocial issues as well as disease factors. The purpose of this clinical report is to review research on psychosocial functioning in pediatric IBD and to provide recommendations for care providers in the areas of psychopathology, health-related quality of life, and social, family, and school functioning. Youth with IBD are at increased risk for difficulty in all areas reviewed, and many psychosocial factors are associated with disease activity, which highlights the importance of monitoring psychosocial functioning as part of clinical care. Several interventions have empirical support or show promise for addressing psychosocial difficulty, and recommendations for monitoring and treating these issues are provided.

Gender differences in the social functioning of adolescents with inflammatory bowel disease.

Inflammatory bowel disease (IBD) has been associated with social difficulties. Boys with IBD may have increased risk for social problems due to delayed growth and puberty, but gender differences in social functioning have not been investigated. This study examined gender differences in multiple areas of social functioning for adolescents with IBD compared to healthy adolescents. Participants were 92 adolescents 11-17 years (50 with IBD, 42 healthy) and parents who completed questionnaires assessing social functioning. IBD was associated with poorer social functioning in the areas of social competence and social problems. Boys with IBD had worse social competence, with no gender differences for social problems. Gender predicted the use of social contact as a coping strategy, but no significant group differences were found for other areas of social functioning. Adolescents with IBD experience significant social difficulties in some areas, and boys are at risk for poor social competence. However, previously reported social difficulties may not extend to all areas of social functioning.

Academic achievement, attendance, and school-related quality of life in pediatric inflammatory bowel disease.

OBJECTIVE: Inflammatory bowel disease (IBD) and its treatment have the potential to disrupt school functioning. Some research suggests that youth with IBD may have increased absences, but little is known about other areas of school functioning or related factors. This study examined school functioning (absences, achievement, grade retention, special education, and school-related quality of life) in adolescents with IBD compared with healthy adolescents and investigated demographic, disease, and psychosocial variables as predictors. METHODS: Participants were 92 adolescents 11 to 17 years (50 with IBD and 42 healthy) and parents who completed questionnaires assessing psychosocial and school functioning. Report cards and school absence information were obtained from schools. RESULTS: Youth with IBD had poorer school functioning in all areas, although only absences were significantly different between groups. Among those with IBD, internalizing problems predicted absences, income and externalizing problems predicted grade point average, and parent marital status and somatic complaints predicted school quality of life. Disease factors, including but not limited disease activity, were not significant predictors. CONCLUSIONS: Adolescents with IBD are at risk for school difficulty, and demographic and psychosocial factors are better predictors than disease factors. Interventions aimed at improving behavioral/emotional problems may improve school functioning.

Psychoneuroimmunologic factors in inflammatory bowel disease.

BACKGROUND: Bidirectional relationships between the immune system, nervous system, and psychological processes likely exist in inflammatory bowel disease (IBD) because stress can affect IBD, and IBD is associated with an increased risk of psychological difficulty. The field of psychoneuroimmunology (PNI) sheds light on specific mechanisms that are involved in these relationships, and this research can be applied specifically to IBD. The purpose of this article is to review research on PNI processes in IBD and provide recommendations for future research. METHODS: A literature search was conducted using the PubMed and PsychInfo computerized databases and bibliographies of relevant articles. RESULTS: The hypothalamic-pituitary-adrenal axis, sympathetic-adrenomedullary system, proinflammatory cytokines, substance P, and mast cells play roles in inflammatory processes in IBD. These processes also respond to stress, and they have been implicated in psychological problems in otherwise healthy individuals. These overlapping processes in inflammation and psychological function have received limited attention in IBD, but preliminary evidence suggests that these mechanisms may play a role in the psychological difficulty experienced by those with IBD. CONCLUSIONS: Several bidirectional PNI mechanisms overlap in IBD, suggesting ways that stress and psychological function can affect disease activity and, conversely, avenues by which the inflammation in IBD may contribute to psychological difficulty. More research on specific PNI processes is needed to fully understand these factors in IBD.

Treatment regimen adherence in pediatric gastroenterology.

OBJECTIVE: To review and critically evaluate the extant research pertaining to adherence in pediatric gastroenterological diseases, particularly inflammatory bowel disease and celiac disease, and to provide recommendations for future research development. MATERIALS AND METHODS: A literature search with no date restriction was conducted using PubMed and PsychInfo electronic databases and bibliographies of relevant articles. RESULTS: Adherence rates in inflammatory bowel disease and celiac disease range considerably from 16% to 62% and 5% to 70%, respectively, across treatments and assessment method; nonadherence frequency was generally not reported. Measures used to assess adherence included self-report, interview, diet record, and bioassay methods, and each measure demonstrated strengths and limitations. Limited evidence suggests that adherence in both disease populations is related to patient and family behavioral factors and that nonadherence is related to poor disease outcome. Treatment outcome research for nonadherence is scant in the current literature. CONCLUSIONS: Future research should focus on refining assessment method, examining adherence and concomitant behavioral factors longitudinally, testing theoretical models of adherence, and developing efficacious treatments for nonadherence.

Behavioral Functioning and Treatment Adherence in Pediatric Inflammatory Bowel Disease: Review and Recommendations for Practice.

The purpose of this article is to review the existing research pertaining to behavioral functioning and treatment adherence in children and adolescents with inflammatory bowel disease (IBD), discuss potential effects of behavioral dysfunction on adherence, and provide clinical recommendations for assessment and treatment options. An updated literature review in pediatric IBD is presented, and research across chronic conditions supports the plausibility of negative consequences of patient and family behavioral problems on disease management. Clinical recommendations include use of multimethod assessment of treatment adherence, routine screening for behavioral difficulties, patient-provider discussion of behavioral issues and disease management during clinic visits, and increased attention to the process of gradually transitioning responsibility of disease management from parents to adolescents as patients approach adulthood.

Psychological factors affecting pediatric inflammatory bowel disease.

PURPOSE OF REVIEW: Psychological factors affecting pediatric inflammatory bowel disease, intervention and other therapeutic resources are reviewed. RECENT FINDINGS: Children with inflammatory bowel disease are at risk for more difficulties in psychosocial functioning than healthy children, particularly depression, anxiety and social difficulties. Psychosocial difficulties are generally similar to those found in other pediatric chronic illnesses and are clinically significant in only a subset of those with inflammatory bowel disease. Conflicting results have been reported for the areas of family dysfunction and body image, and few studies have been published in the areas of stress/coping and eating disorders. One pilot study suggests psychotherapy is effective for depressed adolescents with inflammatory bowel disease. SUMMARY: The scant existing research limits conclusions about which children are most at risk for experiencing problems. Future research should investigate a range of psychosocial outcomes and risk factors for developing problems. Prevention and intervention strategies aimed at improving psychosocial functioning in children with inflammatory bowel disease should be developed and evaluated.

Anxiety and pain symptoms in children with inflammatory bowel disease and functional gastrointestinal disorders undergoing colonoscopy.

OBJECTIVE: To compare pain and anxiety scores between children with inflammatory bowel disease (IBD) and those with functional gastrointestinal disorders (FGID) undergoing colonoscopy and to examine the role of anxiety and procedure length in predicting reports of pain. MATERIALS AND METHODS: Children ages 10 to 18 years undergoing colonoscopy (general anesthesia) for the first time completed pain and anxiety questionnaires immediately before the procedure and a pain questionnaire 48 hours after colonoscopy. The diagnosis was determined by chart review and physician interview. RESULTS: Children with FGID had a longer duration of pain than those with IBD. Children with FGID endorsed a greater total number of the pain descriptors. The FGID group reported higher usual pain severity and greater postprocedural pain. No differences in anxiety were reported. However, higher levels of anxiety were associated with higher pain scores at the time of colonoscopy in children with IBD. It required significantly more time to perform colonoscopy in the IBD group than in the FGID group. Longer procedure duration was positively correlated with pain in children with FGID but not in children with IBD. CONCLUSIONS: Children with FGID report more usual pain symptoms and may describe more pain after a colonoscopy when compared with children with IBD. Anxiety appears to play a role in pain severity after colonoscopy in children presenting with IBD, but not in children with FGID.

Parent perceptions of nutritional issues during their child's treatment for cancer.

To examine family mealtime interactions, parental concerns about nutrition, and body mass index (BMI) among children with cancer who did not have primary central nervous system involvement. Parents of 95 children receiving treatment for cancer and 95 comparisons completed the About Your Child's Eating-Revised (AYCE-R) measure. Anthropometric data for children with cancer were obtained from medical charts at diagnosis and again when the AYCE-R was administered. No differences in mealtime interactions were found between children with cancer and comparisons, but parents of children with cancer reported greater concern about their child's weight. Anthropometric measures for children with cancer were consistent with national norms. However, children with cancer were somewhat underweight at diagnosis and became heavier over time. Lower BMI was associated with mother and father report of greater resistance from the child at mealtime, father report of his own aversion to family meals, and more severe treatment. The impact of cancer on family mealtime interactions and BMI appeared minimal during treatment. However, further longitudinal research is needed given the risk for late effects, such as growth problems and obesity, among cancer survivors. Families also may benefit from ongoing education to optimize healthy lifestyles among survivors.

A randomized clinical trial of dietary calcium to improve bone accretion in children with juvenile rheumatoid arthritis.

OBJECTIVE: To examine a behavioral intervention (BI) to increase calcium intake in children with juvenile rheumatoid arthritis (JRA) on calcium intake and bone mass 6 and 12 months after treatment. STUDY DESIGN: A randomized trial compared a 6-session BI to a 3-session enhanced standard of care (ESC) with 49 children ages 4 to 10 years with JRA. Calcium intake was assessed via 3-day diet diaries. Total body bone mineral content (BMC), arms and legs BMC, and lumbar spine bone mineral density were assessed by dual energy x-ray absorptiometry. RESULTS: BI maintained an average calcium intake of 1500 mg/d at 6- and 12-month follow-up. This was greater than their baseline level of 972 mg/d, but not greater than the intake of 1300 mg/day maintained by ESC (P=.09). The BI had a 4% and 2.9% greater gain in total body bone mineral content than ESC at 6 and 12 months, respectively (P=.005), and a 7.1% and 5.3% greater gain in arms and legs BMC at 6 and 12 months than ESC (P=.0007). CONCLUSIONS: BI is effective in increasing calcium intake and BMC in children with JRA over a 12-month period.

Psychosocial functioning in pediatric inflammatory bowel disease.

BACKGROUND: The purpose of this article is to review research on psychosocial functioning in pediatric inflammatory bowel disease (IBD) and to provide recommendations for future research. METHODS: A literature search was conducted using the MEDLINE and PsychInfo computerized databases and bibliographies of relevant articles. RESULTS: Compared with healthy children, children with IBD are at greater risk of difficulties behavioral/emotional functioning, particularly depression and anxiety, social functioning, and self-esteem. Conflicting results have been reported for the areas of family dysfunction and body image, and few studies have been published in the areas of stress and coping and eating problems. Psychosocial difficulties are clinically significant in only a subset of those with IBD and are generally similar to those found in other pediatric chronic illnesses. CONCLUSIONS: The scant existing research limits conclusions about which children are most likely to experience problems. Future research should investigate a range of psychosocial outcomes, including developmentally appropriate outcomes for adolescents, and risk factors for developing problems. Prevention and intervention strategies aimed at improving psychosocial functioning in children with IBD should be developed and evaluated.

Brief report: psychosocial adjustment in adolescents with inflammatory bowel disease.

BACKGROUND: Inflammatory bowel disease (IBD) is an ideal disease for investigating adolescent adjustment to chronic illness, given its embarrassing, socially limiting, appearance-changing symptoms and adolescent onset. OBJECTIVE: To compare psychosocial adjustment among adolescents with a chronic illness to that of healthy adolescents and examine the role of adolescent disease onset. METHODS: Participants were 50 adolescents with IBD and their parents, and parents of 42 healthy comparison adolescents who completed questionnaires assessing behavioral, emotional, social, and family functioning. RESULTS: Adolescents with IBD were reported to have worse anxious and/or depressed and social problems than healthy adolescents. More adolescents with IBD were reported to have clinically significant social problems. Those diagnosed during adolescence were reported to have significantly worse social competence scores. CONCLUSIONS: Adolescents with a chronic illness such as IBD may be at higher risk for specific psychosocial difficulties than healthy adolescents. Diagnosis of a chronic illness during adolescence may have implications for social functioning.

Oral medication adherence in pediatric inflammatory bowel disease.

The purpose of this study was to examine reports of adherence to oral medications, parent-child concordance in reports of adherence, and factors associated with poor adherence in adolescents with inflammatory bowel disease (IBD). Participants were 50 children with IBD 11 to 17 years of age and their parents. Parents completed an adherence interview and the Child Behavior Checklist, Family Assessment Device, and demographics questionnaires. Separately, adolescents completed the adherence interview and the Piers Harris Self-Concept Scale, Children's Depression Inventory, and Coping Strategies Inventory questionnaires. The treating gastroenterologists of participating children completed the Pediatric Crohn's Disease Activity Index during a clinic visit within a week of completion of the questionnaires. Mean parent- and child-reported adherence scores fell between the "most of the time" and "always" categories, although perfect adherence was low. Among IBD-specific medications (5-ASAs, immunomodulators, steroids), 48% of children and 38% of parents reported being always adherent to all medications. Parent-child concordance was high. Family dysfunction and poor child coping strategies were associated with worse adherence. The correlation between more behavioral/emotional problems and lower adherence approached significance. Adherence should be monitored in families that lack appropriate child discipline and in children who cope by simply wishing stressors would go away. Because these issues are associated with poor adherence, it has been suggested that psychotherapy addressing these areas may contribute to improved adherence.