Wendy N. Gray

Pediatric Self-management: A Framework for Research, Practice, and Policy

Self-management of chronic pediatric conditions is a formidable challenge for patients, families, and clinicians, with research demonstrating a high prevalence of poor self-management and nonadherence across pediatric conditions. Nevertheless, effective self-management is necessary to maximize treatment efficacy and clinical outcomes and to reduce unnecessary health care utilization and costs. However, this complex behavior is poorly understood as a result of insufficient definitions, reliance on condition-specific and/or adult models of self-management, failure to consider the multitude of factors that influence patient self-management behavior, and lack of synthesis of research, clinical practice, and policy implications. To address this need, we present a comprehensive conceptual model of pediatric self-management that articulates the individual, family, community, and health care system level influences that impact self-management behavior through cognitive, emotional, and social processes. This model further describes the relationship among self-management, adherence, and outcomes at both the patient and system level. Implications for research, clinical practice, and health care policy concerning pediatric chronic care are emphasized with a particular focus on modifiable influences, evidence-based targets for intervention, and the role of clinicians in the provision of self-management support. We anticipate that this unified conceptual approach will equip stakeholders in pediatric health care to (1) develop evidence-based interventions to improve self-management, (2) design programs aimed at preventing the development of poor self-management behaviors, and (3) inform health care policy that will ultimately improve the health and psychosocial outcomes of children with chronic conditions.

The Impact of Peer Victimization, Parent Distress and Child Depression on Barrier Formation and Physical Activity in Overweight Youth

Objective: With the prevalence of childhood overweight reaching epidemic proportions, there is an increased need to identify factors which may aid in the development of successful weight intervention programs. Given that lower levels of physical activity are inversely correlated with weight status in children, research has focused on identifying and addressing reported barriers to physically activity. A relationship exists between the number of reported barriers and weight status such that children who are overweight report more barriers to being physically active. However, important demographic and psychosocial correlates of barriers have not been examined. Methods: This study investigates the relationship among parent distress, peer victimization, childhood depression, barriers to physical activity, and physical activity among a sample of 95 clinically overweight children and adolescents. Higher levels of parent distress, peer victimization, and childhood depression are predictive of a variety of barriers to physical activity, with peer victimization emerging as the strongest predictor of barriers. Barriers to physical activity mediate the relationships between peer victimization, parent distress, child depression and physical activity. Results: These findings have significant implications for the development/design of weight intervention programs. Interventions targeting increases in physical activity should not only focus on the barriers children report, but should also include a psycho-emotional component to address factors such as parent distress, peer victimization and child mood that may contribute to barrier formation/maintenance. Conclusion: Future interventions may benefit from the identification of additional factors that impact barrier formation and physical activity levels among children.

Disease activity, behavioral dysfunction, and health‐related quality of life in adolescents with inflammatory bowel disease

Background: Approximately 20%‐25% of all inflammatory bowel disease (IBD) cases have an onset in childhood or adolescence. Beyond disease severity, little is known regarding determinants of health‐related quality of life (HRQOL) in this population. This study aimed to identify behavioral correlates of HRQOL and examine behavioral/emotional dysfunction (e.g., internalizing/externalizing symptoms) as the mechanism through which disease severity impacts HRQOL. Methods: In all, 62 adolescents (mean = 15.47 years, standard deviation [SD] = 1.42) with IBD (79% Crohns disease) and their parents were recruited from one of two pediatric IBD specialty clinics located in the Midwest or Northeast region of the United States. Participants completed a demographic questionnaire, the Youth Self‐Report version of the Child Behavior Checklist, and the IMPACT‐III. Disease severity was calculated for Crohns disease and ulcerative colitis using standardized measures. Results: Greater disease severity, externalizing symptoms, and internalizing symptoms were all independently associated with lower HRQOL. Furthermore, internalizing symptoms partially mediated the relationship between disease activity and HRQOL, reducing the effect of disease severity on HRQOL from 22% to 9% in the mediation model. A Sobel test examining the significance of the indirect effect of disease severity on HRQOL via behavioral dysfunction was marginally nonsignificant (P =.053). Conclusions: Nondisease‐specific variables (e.g., behavioral dysfunction) play an important role in impacting HRQOL. Behavioral dysfunction serves as the mechanism through which disease severity partially impacts HRQOL. Continued research to identify other predictors of HRQOL in pediatric IBD will greatly enhance our future ability to design interventions to improve HRQOL and maximize health outcomes. (Inflamm Bowel Dis 2010;)

Factors associated with parental use of restrictive feeding practices to control their children's food intake §

There is a critical need to identify risk factors that make parents more likely to restrict their childs food intake. Child weight and ethnicity, parent weight, parent body dissatisfaction, and parent concern of child weight were examined as correlates of parent use of restrictive feeding practices in a diverse sample of 191 youth (ages 7-17). Participants attending a pediatric outpatient visit completed the Child Feeding Questionnaire (parent feeding practices and beliefs), the Figure Rating Scale (body dissatisfaction) and a demographic form. Parent BMI and child degree of overweight were calculated. Parent use of restrictive feeding practices was positively associated with parent BMI and was moderated by parent body dissatisfaction. Parent concern of child weight mediated the relationship between increasing child degree of overweight and parent use of restrictive feeding practices. There were no differences by child gender or ethnicity in parent use of restrictive feeding practices. These preliminary findings highlight the importance of assessing for underlying parent motivations for utilizing restrictive feeding practices and may help to identify and intervene with families at-risk for engaging in counterproductive weight control strategies. Continued identification of correlates of parent use of restrictive feeding practices is needed across child development and among individuals from diverse backgrounds.

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.

Parenting stress in pediatric IBD: relations with child psychopathology, family functioning, and disease severity.

Objective: Parenting stress in pediatric inflammatory bowel disease (IBD) has been under-examined. Data validating use of the Pediatric Inventory for Parents (PIP), a measure of parenting stress associated with caring for a chronically ill child, in chronic diseases with intermittent, unpredictable disease courses, such as IBD, are needed. This study presents validity data in support of the PIP in pediatric IBD and examines relations between parenting stress and important psychosocial and medical outcomes. Methods: Adolescents (N = 130) with IBD and their caregivers across 3 sites completed measures of parenting stress, family functioning, and emotional/behavioral functioning. Disease severity was also assessed for each participant. Results: The PIP demonstrates excellent internal consistency. Parenting stress was significantly higher among those with unhealthy general family functioning and those with children with borderline or clinically elevated internalizing symptoms. Caregiving stress was greater among parents of youth with more active Crohns disease. Conclusion: Results supported the reliability and validity of the PIP for assessing caregiving stress in pediatric IBD. Routine assessment of parenting stress is recommended, particularly among parents reporting unhealthy family functioning and parents of youth with borderline or clinically elevated internalizing symptoms and more active disease.

Transition readiness skills acquisition in adolescents and young adults with inflammatory bowel disease: findings from integrating assessment into clinical practice.

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.

Moderators of Weight-Based Stigmatization Among Youth Who Are Overweight and Non-overweight: The Role of Gender, Race, and Body Dissatisfaction

Objective: To identify demographic correlates and moderators of weight-based stigmatization in a diverse sample of children and adolescents. Method: A total of 157 children/adolescents aged 7 to 17 years and their parents participated in this study, and the following measurements were used: demographic questionnaire, child weight and height, figure ranking weight-based stigmatization, and body dissatisfaction. Results: Weight-based stigmatization was greater among younger children and females. Gender moderated the relationship between age and weight-based stigmatization, with significant differences in endorsement of weight bias between child and adolescent females. Gender also moderated the relationship between race and weight-based stigmatization, with African-American females endorsing significantly lower levels of weight-based stigmatization than white females. Body dissatisfaction moderated the relationship between degree of overweight and weight-based stigmatization and served as a protective buffer from endorsement of weight-based stigmatization among children with greater degree of overweight but low body dissatisfaction. Conclusion: Weight-based stigmatization is prevalent, with certain age groups and populations at particular risk for its endorsement. Identification of correlates and moderators of weight-based stigmatization can inform the design of effective interventions to reduce its profound negative impact on children who are overweight or obese.

A pilot study comparing traumatic stress symptoms by child and parent report across pediatric chronic illness groups.

Objective: Researchers have recently used a framework of traumatic stress to describe the psychological functioning of children experiencing a chronic illness and their families; however, few studies are available directly comparing symptoms across disease groups. This study compared traumatic stress symptoms of youth being considered for solid organ and bone marrow transplantation, youth diagnosed with human immunodeficiency virus, youth diagnosed with sickle cell disease and their parents. Correlates of traumatic stress across these populations were also examined. Method: Participants included 64 youth and caregiver dyads with previously scheduled appointments at 1 of 3 specialty clinics. Parents completed measures of family demographics, traumatic stress symptoms, and child functional status. Youth (n = 45) and parents each completed self-report and parent-proxy measures of youth traumatic stress symptoms. Results: Ten percent of youth by self-report, 18% of youth by parent-proxy report, and 13% of caregivers described symptoms suggestive of posttraumatic stress disorder. Parents of pediatric transplant self-reported greater symptoms than caregivers of youth with human immunodeficiency virus and sickle cell disease (p < .05). Although child functional impairment did not predict child symptoms, a trend was found where parents experiencing more traumatic stress symptoms themselves reported their children experienced greater symptoms by parent-proxy report (p =.07). Conclusion: Findings suggest that although most children and parents across disease groups report subclinical levels of traumatic stress symptoms, traumatic stress symptoms may be especially salient for families of pediatric transplant candidates. Although interventions are currently available to treat posttraumatic stress disorder symptoms, they will likely need to be individualized to meet the needs of specific disease groups.

Concerns, Barriers, and Recommendations to Improve Transition from Pediatric to Adult IBD Care: Perspectives of Patients, Parents, and Health Professionals

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.