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.

Promoting equity, inclusion, and efficiency: A team science approach to the development of authorship guidelines for a multi-disciplinary research team.

Large research teams and consortia present challenges for authorship. The number of disciplines involved in the research can further complicate approaches to manuscript development and leadership. The CHARM team, representing a multi-disciplinary, multi-institutional genomics implementation study, participated in facilitated discussions inspired by team science methodologies. The discussions were centered on team members' past experiences with authorship and perspectives on authorship in a large research team context. Team members identified challenges and opportunities that were used to create guidelines and administrative tools to support manuscript development. The guidelines were organized by the three values of equity, inclusion, and efficiency and included eight principles. A visual dashboard was created to allow all team members to see who was leading or involved in each paper. Additional tools to promote equity, inclusion, and efficiency included providing standardized project management for each manuscript and making "concept sheets" for each manuscript accessible to all team members. The process used in CHARM can be used by other large research teams and consortia to equitably distribute lead authorship opportunities, foster coauthor inclusion, and efficiently work with large authorship groups.

"I didn't know you could do that": A Pilot Assessment of EHR Optimization Training.

BACKGROUND: Informatics tools within electronic health records (EHRs)-for example, data rosters and clinical reminders-can help disseminate care guidelines into clinical practice. Such tools' adoption varies widely, however, possibly because many primary care providers receive minimal training in even basic EHR functions. OBJECTIVES: This mixed-methods evaluation of a pilot training program sought to identify factors to consider when providing EHR use optimization training in community health centers (CHCs) as a step toward supporting CHC providers' adoption of EHR tools. METHODS: In spring 2018, we offered 10 CHCs a 2-day, 16-hour training in EHR use optimization, provided by clinician trainers, and customized to each CHC's needs. We surveyed trainees pre- and immediately post-training and again 3 months later. We conducted post-training interviews with selected clinic staff, and conducted a focus group with the trainers, to assess satisfaction with the training, and perceptions of how it impacted subsequent EHR use. RESULTS: Six CHCs accepted and received the training; 122 clinic staff members registered to attend, and most who completed the post-training survey reported high satisfaction. Three months post-training, 80% of survey respondents said the training had changed their daily EHR use somewhat or significantly. CONCLUSION: Factors to consider when planning EHR use optimization training in CHCs include: CHCs may face barriers to taking part in such training; it may be necessary to customize training to a given clinic's needs and to different trainees' clinic roles; identifying trainees' skill level a priori would help but is challenging; in-person training may be preferable; and inclusion of a practice coach may be helpful. Additional research is needed to identify how to provide such training most effectively.

The effect of multiple recruitment contacts on response rates and patterns of missing data in a survey of bladder cancer survivors 6 months after cystectomy.

PURPOSE: The Bladder Cancer Quality of Life Study collected detailed and sensitive patient-reported outcomes from bladder cancer survivors in the period after bladder removal surgery, when participation in survey research may present a burden. This paper describes the study recruitment methods and examines the response rates and patterns of missing data. METHODS: Detailed surveys focusing on quality of life, healthcare decision-making, and healthcare expenses were mailed to patients 5-7 months after cystectomy. We conducted up to 10 follow-up recruitment calls. We analyzed survey completion rates following each contact in relation to demographic and clinical characteristics, and patterns of missing data across survey content areas. RESULTS: The overall response rate was 71% (n = 269/379). This was consistent across patient clinical characteristics; response rates were significantly higher among patients over age 70 and significantly lower among racial and ethnic minority patients compared to non-Hispanic white patients. Each follow-up contact resulted in marginal survey completion rates of at least 10%. Rates of missing data were low across most content areas, even for potentially sensitive questions. Rates of missing data differed significantly by sex, age, and race/ethnicity. CONCLUSIONS: Despite the effort required to participate in research, this population of cancer survivors showed willingness to share detailed information about quality of life, health care decision-making, and expenses, soon after major cancer surgery. Additional contacts were effective at increasing participation. Response patterns differed by race/ethnicity and other demographic factors. Our data collection methods show that it is feasible to gather detailed patient-reported outcomes during this challenging period.

Participation in Activities Associated With Quality of Life for Long-Term Survivors of Rectal Cancer.

CONTEXT: Cancer patients' participation in social, recreational, and civic activities is strongly associated with quality of life (QOL), but these activities are not well integrated into cancer survivorship research or interventions. OBJECTIVE: Test the hypothesis that for long-term (≥ 5 years) survivors of rectal cancer, clinical factors (type of surgery and bowel function) are associated with long-term participation in activities and that participation in activities is associated with long-term QOL. DESIGN: Observational study with longitudinal and cross-sectional components. MAIN OUTCOME MEASURES: Participation in activities and QOL. Tumor registry records were used to identify patients and obtain clinical data; surveys assessed participation and QOL. Using general linear models, we analyzed participation in activities in relation to type of surgery and bowel function after adjustment for potential confounders. We analyzed overall QOL relative to participation in activities after adjustment. RESULTS: A total of 567 rectal cancer survivors completed a mailed questionnaire. Overall response rate was 61%. The type of operation (p < 0.0001), receipt of radiation therapy (p = 0.002), and bowel function (p < 0.0001) were associated with participation in activities. Participation in activities was the strongest predictor of QOL (p < 0.0001), explaining 20% of the variance (R2) in QOL, with all other variables together accounting for another 18% of the variance. CONCLUSION: The importance of participation in activities on rectal cancer survivors' QOL is underappreciated. We recommend revising QOL instruments used in cancer care and research to include questions about participation in activities. Interventions should address maintenance of preferred activities and adoption of new, fulfilling activities.

Self-reported depression and perceived financial burden among long-term rectal cancer survivors.

OBJECTIVES: Types of surgery for rectal cancer (RC), including permanent ostomy (PO) or temporary ostomy followed by anastomosis (TO) or initial anastomosis (AN), can affect psychological and financial well-being during active treatment. However, these relationships have not been well studied among long-term survivors (≥5 years post-diagnosis). METHODS: A mailed survey with 576 long-term RC survivors who were members of Kaiser Permanente was conducted in 2010-2011. Prevalence of current depression was ascertained using a score of ≤45.6 on the Short Form-12 version 2 mental component summary. Perceived financial burden was assessed using a Likert scale ranging from 0 (none) to 10 (severe). Regression analyses were used to measure associations after adjustment for covariates. RESULTS: The overall prevalence of depression was 24% among RC survivors with the highest prevalence among those with a history of PO (31%). The adjusted odds of depression among TO and AN survivors were lower than that among PO survivors, 0.42 (CI95% 0.20-0.89) and 0.59 (CI95% 0.37-0.93), respectively. Twenty-two percent perceived moderate-to-high current financial burden (≥4 points). PO survivors also reported higher mean financial burden than AN survivors (2.6 vs. 1.6, respectively; p = 0.002), but perceived burden comparably to TO survivors (2.3). Self-reported depression was associated with higher perceived financial burden (p < 0.001); surgical procedure history did not modify this relationship. CONCLUSIONS: Depression was reported frequently among these long-term RC survivors, particularly among PO survivors. Depression was associated with greater perception of financial burden. Screening for depression and assessing financial well-being might improve care among long-term RC survivors.Copyright © 2015 John Wiley & Sons, Ltd.

Health care utilization in the first year of life among small- and large- for-gestational age term infants.

The objective of the study was to assess if small- and large-for gestational age term infants have greater health care utilization during the first year of life. The sample included 28,215 singleton term infants (37-42 weeks) without major birth defects delivered from 1998 through 2007 and continuously enrolled at Kaiser Permanente Northwest for 12 months after delivery. Birth weight for gestational age was categorized into 3 levels: <10th percentile (SGA), 10-90th percentile (AGA), >90th percentile (LGA). Length of delivery hospitalization, re-hospitalizations and sick/emergency room visits were obtained from electronic records. Logistic regression models estimated associations between birth weight category and re-hospitalization. Generalized linear models estimated adjusted mean number of sick/emergency visits. Among term infants, 6.2 % were SGA and 13.9 % were LGA. Of infants born by cesarean section, SGA infants had 2.7 higher odds [95 % 1.9, 3.8] than AGA infants of staying ≥5 nights during the delivery hospitalization; of those born vaginally, SGA infants had 1.5 higher adjusted odds [95 % 1.1, 2.1] of staying ≥4 nights. LGA compared to AGA infants had higher odds of re-hospitalization within 2 weeks of delivery [OR 1.25, 95 % CI 0.99, 1.58] and of a length of stay ≥4 days during that hospitalization [OR 2.6, 95 % CI 1.3, 5.0]. The adjusted mean number of sick/emergency room visits was slightly higher in SGA (7.8) than AGA (7.5) infants (P < .05). Term infants born SGA or LGA had greater health care utilization than their counterparts, although the increase in utilization beyond the initial delivery hospitalization was small.

Extent of maternal morbidity in a managed care population in georgia.

BACKGROUND: Although maternal deaths are among the most tragic events related to pregnancy, they are uncommon in the US and, therefore, inadequate indicators of a woman's pregnancy-related health. Maternal morbidity has become a more useful measure for surveillance and research. Traditional attempts to monitor maternal morbidity have used hospital discharge data, which include data only on complications that resulted in hospitalisation, underestimating the frequency and scope of complications. METHODS: To obtain a more accurate assessment of morbidity, we applied a validated computerised algorithm to identify pregnancies and pregnancy-related complications in a defined population enrolled in a health maintenance organisation in the south-eastern US. We examined the most common morbidities by pregnancy outcome and maternal characteristics. RESULTS: We identified 37 741 pregnancies; in half (50.7%), at least one complication occurred. The five most common were urinary tract infections, anaemia, mental health conditions, pelvic and perineal complications, and obstetrical infections. Complications were more likely in women with low socio-economic status (SES), and among non-Hispanic Black women compared with non-Hispanic White women. Multivariable models stratified by race/ethnicity indicated that in pregnancies among non-Hispanic White women, low SES had a modest effect on the odds of having preexisting medical conditions [adjusted odd ratio (AOR) 1.3 [95% confidence interval (CI) 1.2, 1.5]] or having any morbidity (AOR 1.3 [95% CI 1.2, 1.4]). Low SES had little effect on complications among non-Hispanic Black women. CONCLUSION: Our findings suggest that comprehensive health insurance coverage may lessen the unfavourable impact of socio-economic disadvantage on the risk of maternal morbidity.