Vitamin and mineral supplement adherence in pediatric inflammatory bowel disease.

OBJECTIVE: Although vitamin and mineral supplementation for nutritional deficiencies is a common component of pediatric inflammatory bowel disease (IBD) management, little is known about supplement adherence in this group. This study described adherence to multivitamin, iron, and calcium supplements among 49 youth aged 11-18 years with IBD. Additionally, the study examined relationships between supplement knowledge and adherence. METHODS: Participants completed supplement adherence ratings using a validated interview. Knowledge was assessed using an open-ended question from the same interview; responses were later categorized into 1 of 3 knowledge sophistication categories (low, moderate, or high). RESULTS: Mean adherence rates ranged from 32 to 44% across supplements. Youth who did not know the reason for supplementation (approximately 25% of the sample) displayed substantially poorer adherence than did those with moderate or high levels of knowledge, across all supplements. CONCLUSIONS: Findings highlight the importance of evaluating and addressing nonadherence to vitamin and mineral supplements in youth with pediatric IBD.

Parental Psychological Control and Autonomy Granting: Distinctions and Associations with Child and Family Functioning.

OBJECTIVE: This study utilized an observational coding scheme to identify parenting behavior reflecting psychological control and autonomy granting and examined relations between these parenting dimensions and indices of child and family functioning. DESIGN: A community sample of 90 preadolescents (aged 10.5 to 12 years) and both of their parents engaged in a triadic interaction that was coded for parental psychological control and autonomy granting. Participants also completed measures of child adjustment, interparental conflict, and triangulation. RESULTS: Factor analyses indicated that a two-factor model better fit the data than a one-factor model, suggesting that psychological control and autonomy granting are best conceptualized as independent but related constructs. Parental psychological control and autonomy granting exhibited some shared and some unique correlates with indices of child and family functioning. Hierarchical regressions revealed significant interactions between these dimensions, suggesting that the strength of some associations between parents' use of psychological control and youth adjustment problems depends on the level of autonomy granting exhibited by the parent. CONCLUSIONS: By examining psychological control and autonomy granting simultaneously as unique constructs, this study identifies patterns of psychological control and autonomy granting that undermine youth adjustment. Findings inform targeted intervention efforts for families of preadolescent youth.

Abdominal pain and health related quality of life in pediatric inflammatory bowel disease.

OBJECTIVE: To summarize rates of abdominal pain in pediatric inflammatory bowel disease, and to examine associations of abdominal pain, disease activity, and health-related quality of life (HRQoL). METHODS: 44 youths aged 11-18 years completed ratings of abdominal pain, whereas youths and mothers provided ratings of HRQoL at Time 1 (T1) and Time 2 (T2; 6 months later). Disease activity was rated by physicians at T1. RESULTS: At T1, 55% of participants reported pain in the past week, with most in clinical remission. Approximately one-third reported abdominal pain at neither (absent), either (transient), or both (chronic) T1 and T2, respectively. T1 abdominal pain did not contribute significant variance to T1 HRQoL beyond disease activity. However, pain group uniquely predicted T2 HRQoL, with chronic abdominal pain associated with lower HRQoL. CONCLUSIONS: Abdominal pain is prevalent in pediatric inflammatory bowel disease, even during clinical remission. Interventions to address abdominal pain also may enhance HRQoL.

Identifying youth nonadherence in clinical settings: data-based recommendations for children and adolescents with inflammatory bowel disease.

BACKGROUND: To examine the validity of patient self-report of thiopurine adherence in pediatric inflammatory bowel disease (IBD) against an objective electronic monitoring adherence measure, and to investigate the role of youth and maternal involvement in remembering to take daily medications as predictors of medication adherence. METHODS: Fifty-one youths with IBD, ages 11-18 years, participated. Youths completed questionnaire assessments of their own and their maternal caregiver's involvement in remembering to take daily medications at baseline, completed monthly interviews assessing thiopurine adherence over the past week for a period of 6 months, and utilized a Medication Events Monitoring System (MEMS) electronic monitor for their thiopurine medication for 6 months. Participants were grouped into adherent (at least 80% of doses taken based on objective MEMS caps) or nonadherent for analyses. RESULTS: Youths who were nonadherent based on electronic monitoring overestimated their adherence by 23%, whereas adherent youths overestimated their adherence by only 2%, and as such patient self-report offered little utility in identifying youths who were nonadherent. Youths who reported high levels of involvement in remembering to take their medications were nearly eight times less likely to be nonadherent. CONCLUSIONS: The current findings provide evidence that clinicians who work with children and adolescents with IBD may benefit from modifying their approach to nonadherence screening. Asking about youth involvement in remembering daily medications may be more informative than asking them to recall their medication-taking behavior over the last week in identifying those at highest risk for nonadherence.

Maternal, paternal, and family health-related quality of life in the context of pediatric inflammatory bowel disease.

PURPOSE: The primary aim of this study was to examine the associations of disease activity and adolescent adjustment with parent and family health-related quality of life (HRQoL) among families of youths with inflammatory bowel disease (IBD). A secondary aim was to compare maternal and paternal perceptions of parent and family functioning. METHODS: Ninety-five primarily Caucasian families (92 mothers and 43 fathers) of youths with IBD ranging in age from 11 to 18 participated. Most adolescents were diagnosed with Crohn's disease and had been diagnosed with IBD for several years at the time of the study. Parents completed the PedsQL Family Impact Module, while youths completed the Pediatric Symptoms Checklist. Disease activity ratings were obtained from medical records. RESULTS: Multiple regression analyses suggested that disease activity was consistently associated with all father-reported outcomes and explained twice as much of the variance in father-reported parent and family HRQoL outcomes compared to mother-reported outcomes. In contrast, youth adjustment was consistently associated with all maternal outcomes but only one paternal outcome, and explained nearly twice as much variance in maternal-reported outcomes compared to paternal-reported outcomes. No significant differences between maternal and paternal reports of parent or family HRQoL were identified using independent samples t tests. CONCLUSIONS: Although mothers and fathers report similar individual and family HRQoL, the strength of associations between disease and youth adjustment factors with these outcomes differs somewhat by parent gender. Findings underscore the importance of examining maternal and paternal functioning separately and incorporating routine family assessment into the course of treatment.

Health-related quality of life of youth with inflammatory bowel disease: a comparison with published data using the PedsQL 4.0 generic core scales.

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.