A framework for measuring the cost to families of caring for children's health: the design, methodology, and study population of the r-Kids study.

BACKGROUND: All families experience financial and time costs related to caring for their children's health. Understanding the economic burden faced by families of children with chronic health conditions (CHC) is crucial for designing effective policies to support families. METHODS: In this prospective study we used electronic health records to identify children between 3 and 17 years old with autism spectrum disorder (ASD), asthma, or neither (control) from three Kaiser Permanente regions and several community health centers in the OCHIN network. We oversampled children from racial and ethnic minority groups. Parent/guardian respondents completed surveys three times, approximately four months apart. The surveys included the Family Economic Impact Inventory (measuring financial, time, and employment costs of caring for a child's health), and standardized measures of children's quality of life, behavioral problems, and symptom severity for children with ASD or asthma. We also assessed parenting stress and parent physical and mental health. All materials were provided in English and Spanish. RESULTS: Of the 1,461 families that enrolled (564 ASD, 468 asthma, 429 control), children were predominantly male (79%), with a mean age of 9.0 years, and racially and ethnically diverse (43% non-Hispanic white; 22% Hispanic; 35% Asian, Black, Native Hawaiian, or another race/ethnicity). The majority of survey respondents were female (86%), had a college degree (62%), and were married/partnered (79%). ASD group respondents were less likely to be employed (73%) than those in the asthma or control groups (both 80%; p = .023). Only 32% of the control group reported a household income ≤ $4,000/month compared with 41% of asthma and 38% of ASD families (p = .006). CONCLUSIONS: Utilizing a novel measure assessing family economic burden, we successfully collected survey responses from a large and diverse sample of families. Drawing upon the conceptual framework, survey measures, and self-report data described herein we will conduct future analyses to examine the economic burdens related to CHC and the incremental differences in these burdens between health groups. This information will help policy makers to design more equitable health and social policies that could reduce the burden on families.

Emotional and Behavioral Problems in Youth with Autism: High Prevalence and Impact on Functioning.

OBJECTIVE: Emotional and behavioral problems (EBPs) may co-occur with autism spectrum disorder (ASD) and impair children's functioning beyond autism symptomatology. We compared the prevalence of EBPs in youths with or without ASD and evaluated their unique contribution to impairment in ASD. METHODS: We surveyed 1267 children (79.4% boys, mean age: 9.2 years, range: 3-17) recruited at 3 sites in Kaiser Permanente and OCHIN primary care clinical networks, with confirmed International Classification of Diseases-10th ed. diagnosis of ASD (N = 564), asthma (N = 468), or neither (N = 429). Children from the 2 comparison groups were age-matched and sex-matched to the ASD group. EBPs and impairment were measured by the Strengths and Difficulties Questionnaire and autism symptomatology by the Social Responsiveness Scale in the ASD group only. RESULTS: EBPs and impairment mean scores were significantly (p < 0.001) higher in participants with ASD compared with children from the 2 comparison groups, across sexes and age groups, with no significant difference between the asthma and control groups. Among children with ASD, both EBPs and autistic symptoms were significantly correlated with impairment (r = 0.64 and r = 0.65, respectively) and explained a significant proportion of impairment variance (R2 = 0.525; p < 0.001) in multiple linear regression. In the relative importance analysis, EBPs and autistic symptoms explained comparable proportions of impairment variance (46% and 52%, respectively) with no significant difference between their relative weights (mean difference: 0.03; 95% confidence interval: -0.049 to 0.114). CONCLUSION: Among youth with ASD, high levels of EBPs impair daily functioning as much as autistic symptoms. Systematic detection and management of EBPs may improve functioning and outcomes in youth with ASD.

The social and economic toll of cancer survivorship: a complex web of financial sacrifice.

PURPOSE: To assess the financial outcomes and associated social and economic effects on cancer survivors and their families. METHODS: We assessed the responses of 1656 cancer survivors to a survey with both closed- and open-ended questions about cancer-related financial sacrifices they and their family experienced and evaluated differences in financial sacrifice by reported levels of cancer-related debt. RESULTS: The most commonly reported financial sacrifices included cutbacks on household budgets, challenges with health care insurance and costs, career/self-advancement constraints, reduction/depletion of assets, and inability to pay bills. Survivors who incurred $10,000 or more in debt were significantly more likely to report social and economic impacts, including housing concerns and strained relationships. CONCLUSIONS: Our analysis demonstrates both the frequency with which cancer survivors and families must make financial sacrifices as a result of their cancer, and the variety of forms that this sacrifice can take, even for individuals who have health insurance. The many types of financial hardship create challenges that are unique to each survivor and family. IMPLICATIONS FOR CANCER SURVIVORS: Interventions that allow for personalized assistance with the specific financial and social needs of cancer survivors and their families have the potential to address a critical aspect of the long-term wellbeing of this important population.

Feasibility of a pilot intervention to reduce pain and syncope during adolescent vaccination.

PURPOSE: Vaccines recommended for adolescents are considered safe and effective, however administration may occasionally result in acute pain at the injection site or syncope (fainting). These adverse effects pose a risk to patient safety and are potential barriers to adherence to future vaccinations. We assessed a novel intervention designed to help prevent acute pain and syncope associated with adolescent vaccinations. METHODS: We conducted a 3-month pilot study to assess the feasibility and acceptability of a vaccination comfort menu within two Kaiser Permanente Northwest pediatric clinics. The menu offered a variety of comfort items (e.g., cold packs, squeeze balls) that children could select prior to their vaccination. We surveyed parents of recently vaccinated adolescents and interviewed providers to assess the implementation and effectiveness of the intervention. RESULTS: Response rate for the parent survey was 33% (378/1136). Only 20% of the parents reported that their provider offered the comfort menu during the vaccination visit. Approximately 50% of the adolescents who were offered the menu selected a comfort item and most of these participants reported that the item was very (35%) or somewhat (38%) helpful in improving their vaccination experience. Per provider interviews, common barriers to implementing the intervention included lack of time and convenience, and the brevity of the pilot period. CONCLUSIONS: The comfort menu may improve the vaccination experience of youth and increase the likelihood of adherence with future vaccinations. However, only 20% of the parents reported that their provider offered the menu during the vaccination visit. Additional research is needed to determine the feasibility of implementing this intervention on a larger scale, as well as assessing whether the intervention has a significant impact on reducing adverse events.