Development and Assessment of a Low Literacy, Pictographic Cyclic Vomiting Syndrome Action Plan.

OBJECTIVE: To develop and assess an evidence-based, individualized Cyclic Vomiting Syndrome Action Plan (CVSAP) to optimize both preventative and acute care. STUDY DESIGN: This implementation science project synthesized a combination of clinical practice guidelines, published literature, and clinical experience by a team of CVS clinicians to develop the CVSAP. The tool was developed to include validated pictograms and an automatic, embedded, weight-based dosing calculator to output acute management recommendations. The final version of the CVSAP was tested by patients/caregivers, readability calculators, medical librarians, and clinicians using validated metrics. RESULTS: All pictograms met the criteria for inclusion in the CVSAP. A composite readability score of 5.32 was consistent with a fifth-grade level. Patients/caregivers (n = 70) judged the CVSAP to be of high quality with consumer information rating form rating of 84.2%. Six medical librarians rated the CVSAP to have 93% understandability and 100% actionability, and 33 clinicians completing the SAM generated a suitability rating of 87.5%. CONCLUSIONS: The CVSAP visually highlights individualized care plan components to facilitate optimized preventative and acute CVS care. Further investigation will determine if CVSAP increases caregiver confidence and compliance in home management and improves quality of life and clinical outcomes for patients with CVS.

Family Health-related Quality of Life in Pediatric Cyclic Vomiting Syndrome.

OBJECTIVE: The aim of the study was to evaluate the relationship of disease characteristics and child anxiety symptoms to family health-related quality of life (FHRQoL) in youth with cyclic vomiting syndrome (CVS). METHODS: Forty-two parents of youth ages 8 to 18 years diagnosed with CVS completed the Family Impact Module of the PedsQL, a measure of the impact of the child's illness on the family. We evaluated the relationship of disease characteristics and child and parent proxy reports of anxiety symptoms on the Screen for Childhood Anxiety and Related Emotional Disorders to FHRQoL. RESULTS: Parent report of child anxiety symptoms and missed school days (mean = 11.93, standard deviation = 14.62) were the strongest predictors of FHRQoL (r = 0.33, df = 1.39, F = 8.51, P = 0.006). Other disease characteristics, including frequency, duration, chronicity of CVS episodes, and delay in initial CVS diagnosis were not significantly associated with the FHRQoL total score. Child anxiety symptoms by either parent and/or child report were associated with subscales of the FHRQoL, including family physical functioning, family communication, and family daily activities. CONCLUSIONS: HRQoL for the families assessed in this study was associated with anxiety symptoms to a greater extent than disease characteristics, indexing the importance of a biopsychosocial approach to CVS management. Screening for anxiety symptoms and support for school absences due to illness are indicated to help lessen the impact of CVS on the family as a whole.

Anxiety Measures Predict Health-Related Quality of Life in Children and Adolescents with Cyclic Vomiting Syndrome.

OBJECTIVE: To evaluate the relationship between anxiety and health-related quality of life (HRQoL) in children and adolescents with cyclic vomiting syndrome (CVS). STUDY DESIGN: Forty children aged 8-18 years diagnosed with CVS and 40 parents completed the Screen for Child Anxiety Related Emotional Disorders (SCARED) and the child and parent forms of the Pediatric Quality of Life Generic Core Scale, a measure of HRQoL. RESULTS: Eleven of the 40 children (27%) by self-report and 6 of 40 (15%) by parent-proxy report met the clinical cutoff for an anxiety disorder on the SCARED. Parent and child SCARED ratings were moderately correlated (intraclass correlation coefficient 0.68; P < .001). Child-rated HRQoL (mean ± SD, 74.3 ± 15.2) and parent-rated HRQoL (mean, 72.1 ± 14.6) were lower than healthy norms (P < .001). Disease severity (mean duration of CVS episodes, 3 ± 2.4 days), annual frequency of CVS episodes (mean, 8.2 ± 15.3), chronicity of CVS (mean, 5.8 ± 3.4 years), and delay in diagnosis (mean, 2.4 ± 1.9 years) were not associated with child-reported HRQoL; however, child SCARED scores accounted for approximately 50% of the variance in child-reported HRQoL (adjusted R(2) = 0.49; df = 1, 38; P < .001). CONCLUSION: Children and adolescents with CVS appear to be at increased risk for anxiety. Anxiety symptoms are a stronger predictor of HRQoL than disease characteristics in children and adolescents with CVS. Assessment and treatment of anxiety in children and adolescents with CVS may have a positive impact on HRQoL.

Chronic idiopathic nausea of childhood.

OBJECTIVES: To compare children with primary, chronic idiopathic nausea to those with secondary nausea associated with functional abdominal pain. STUDY DESIGN: Retrospective chart review of 45 children with a primary complaint of chronic nausea several times per week. Comparisons were made to prospectively collected data on 49 children with functional abdominal pain and comorbid nausea. RESULTS: The majority of those affected were adolescent Caucasian females. Subjects with chronic nausea had a more severe presentation with daily 88% (vs 26%) and constant 60% (vs 10%) nausea (P < .001), one-half with peak morning intensity. In the chronic nausea group, 62% had migraines, and 71% (vs 22%) had familial migraines (P < .001), 36% had postural tachycardia syndrome and 27% cyclic vomiting syndrome. Both groups suffered comorbid symptoms (anxiety, dizziness, fatigue, and sleep problems). The chronic nausea cohort underwent extensive, negative medical evaluations. CONCLUSIONS: Chronic idiopathic nausea of childhood is a poorly described symptom. Patients with primary (vs secondary) chronic nausea were more likely Caucasian, older adolescent females with severe, daily nausea and comorbid conditions such as anxiety, dizziness, and fatigue as well as significantly more migraine features. Chronic nausea is a major, disabling symptom that requires increased recognition as a separate functional entity. Future studies may need to focus on comorbid conditions including migraine and dysautonomia.

Health-related quality of life in children and adolescents with cyclic vomiting syndrome: a comparison with published data on youth with irritable bowel syndrome and organic gastrointestinal disorders.

OBJECTIVE: To evaluate health-related quality of life (HRQoL) in children with cyclic vomiting syndrome (CVS) and to compare child self-reports with those of their parents and with published reports of children with irritable bowel syndrome (IBS), children with organic gastrointestinal disorders, and a healthy control group. STUDY DESIGN: Sixty-eight children aged 5-18 years with CVS confirmed in a gastroenterology clinic completed the Pediatric Quality of Life Inventory (PedsQL). Eighty-two parents completed the parent-proxy PedsQL for children aged 2-18 years. These results were compared with published data for children with IBS, organic gastrointestinal disorders, and a healthy control group using ANOVA. Intraclass correlation was used to evaluate concordance between child and parent reports of HRQoL. RESULTS: HRQoL reported on the PedsQL by children with CVS was lower than that reported by children with IBS (P < .01) and healthy controls (P < .001), but did not differ from that reported by children with organic gastrointestinal disorders. Children with CVS also had lower HRQoL compared with healthy controls by parent-proxy report on the PedsQL (P < .001). Correlations between HRQoL reports by parents and children were moderate to good (intraclass correlation coefficients, 0.504-0.805; P < .01). Duration of CVS episodes, delay in CVS diagnosis, and number of school days missed due to CVS were associated with lower parent-rated HRQoL (P = .01). CONCLUSION: Children with CVS reported lower HRQoL compared with those with IBS, and both parents and children reported lower HRQoL compared with healthy controls. Parent and child ratings of HRQoL converged. Improved recognition of CVS and school support might help mitigate the impact of CVS on HRQoL.

The diagnostic evaluation of children with cyclic vomiting: a cost-effectiveness assessment.

Because patients with cyclic vomiting often (82%) have a family history of migraines and often (60%) respond to antimigraine therapy, we investigated whether an initial therapeutic trial could precede diagnostic testing. We used a decision analysis program to compare the cost and benefit of three initial treatment strategies. The costs of the three strategies were extensive diagnostic evaluation, $3020; empiric treatment alone, $1830, and upper GI series with small-bowel follow-through (UGI-SBFT) plus empiric treatment, $1600, respectively. When compared with the extensive evaluation strategy, initial antimigraine treatment avoided 65% of the esophagogastroduodenoscopys. On the basis of this decision analysis, a UGI-SBFT plus empiric migraine therapy was the most cost-effective initial strategy to treat cyclic vomiting syndrome. The cost of complications of a missed malrotation with volvulus was higher than that of adding a UGI-SBFT to each evaluation.