Partnering with Parents of Children with Medical Complexity: A Framework for Engaging Families for Practice Improvement.

The role of patients and families has evolved over the years, from being viewed as entities who were told what to do, to consumers of health services, to being central to health system design and clinical decision-making. When designing health care practices and programs to be patient- and family-centered, we believe that parents of children with medical complexity (CMC) bring valuable viewpoints and experiences to the table. Good health and functional outcomes for CMC and their families are dependent on active family engagement with their health care partners. We apply the Patient Engagement in Redesigning Care Toolkit (PERCT) model to describe the experience of complex care programs with engaging families at various levels of program design and function, including strengths and pitfalls experienced with each PERCT category. Operationalizing the health care system to treat patients and families as equal stakeholders is necessary if we want to succeed in a patient-centered, value-based environment. [Pediatr Ann. 2020;49(11):e467-e472.].

Pediatric Hospitalists' Lessons Learned From an Innovation Award to Improve Care for Children With Medical Complexity.

Children with medical complexity experience frequent hospitalizations and pose a unique challenge for the pediatric hospitalist and their healthcare team. Pediatric hospitalists are ideally positioned to champion improved care coordination for CMC and to address the areas of need in clinical practice, quality improvement and research. Lessons learned from programs who were Healthcare Innovation Award recipients from Center for Medicare and Medicaid Innovation that were aimed at improving care for this population are presented. We focused on care coordination activities implemented during hospitalization. Through a series of meetings with the participating programs, we identified common themes across awarded programs. Programs described key aspects of care coordination during the hospital stay, beginning on admission (multidisciplinary team goal setting, family partnership and action planning), through hospitalization (integrating outpatient and inpatient care), as well as during and after discharge (linking to community-based systems and supports, expanding the transition concept). Finally, we present actionable steps for inpatient providers seeking to improve care for this patient population at the time of hospitalization.

Costs and Use for Children With Medical Complexity in a Care Management Program.

BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) comprise only 6% of the pediatric population, account for ∼40% of pediatric health care spending, and provide an important opportunity for cost saving. Savings in this group can have an important impact on pediatric health care costs. The objective of this study was to assess the impact of a multicenter care management program on spending and use in CMC. DESIGN AND METHODS: We conducted a prospective cohort analysis of a population of 4530 CMC enrolled in a learning collaborative designed to improve care for CMC ages 0 to 21 years identified using 3M Clinical Risk Group categories 5b through 9. The primary outcome was total per-member per-year standardized spending; secondary outcomes included inpatient and emergency department (ED) spending and use. We used a 1:1 propensity score match to compare enrolled patients to eligible nonenrolled patients and statistical process control methods to analyze spending and usage rates. RESULTS: Comparison with the matched group showed a 4.6% (95% confidence interval [CI]: 1.9%-7.3%) decrease in total per-member per-year spending (P < .001), a 7.7% (95% CI: 1.2%-13.5%) decrease in inpatient spending (P = .04), and an 11.6% (95% CI: 3.9%-18.4%) decrease in ED spending (P = .04). Statistical process control analysis showed a decrease in hospitalization rate and ED visits. CONCLUSIONS: CMC enrolled in a learning collaborative showed significant decreases in total spending and a significant decrease in the number of hospitalizations and ED visits. Additional research is needed to determine more specific causal factors for the results and if these results are sustainable over time and replicable in other settings.

Outcomes of a randomized controlled educational intervention to train pediatric residents on caring for children with special health care needs.

OBJECTIVE: To evaluate an innovative curriculum meeting new pediatric residency education guidelines, Special Care Optimization for Patients and Education (SCOPE). METHODS: Residents were randomized to intervention (n = 23) or control (n = 25) groups. Intervention residents participated in SCOPE, pairing them with a child with special health care needs (CSHCN) and faculty mentor to make a home visit, complete care coordination toolkits, and participate in case discussions. The primary outcome was resident self-efficacy in nine skills in caring for CSHCN. Secondary outcomes included curriculum feasibility/acceptance, resident attitudes, and family satisfaction. RESULTS: Response rates were ≥65%. Intervention residents improved in their self-efficacy for setting patient-centered goals compared with controls (mean change on 4-point Likert-type scale, 1.36 vs 0.56, P < .05). SCOPE was feasible/acceptable, residents had improved attitudes toward CSHCN, and families reported high satisfaction. CONCLUSION: SCOPE may serve as a model for efforts to increase residents' self-efficacy in their care of patients with chronic disease.

Continuing education needs of pediatricians across diverse specialties caring for children with medical complexity.

OBJECTIVE: Care for children with medical complexity (CMC) relies on pediatricians who often are ill equipped, but striving to provide high quality care. We performed a needs assessment of pediatricians across diverse subspecialties at a tertiary academic US children's hospital about their continuing education needs regarding the care of CMC. METHODS: Eighteen pediatricians from diverse subspecialties were asked to complete an online anonymous open-ended survey. Data were analyzed using modified grounded theory. RESULTS: The response rate was 89% (n = 16). Of participants, 31.2% (n = 5) were general pediatricians, 18.7% (n = 3) were hospitalists, and 50% (n = 8) were pediatric subspecialists. Pediatricians recognized the need for skills in care coordination, giving bad news, working in interprofessional teams, and setting goals of care with patients. CONCLUSIONS: Practicing pediatricians need skills to improve care for CMC. Strategically incorporating basic palliative care education may fill an important training need across diverse pediatric specialties.

Moving from research to large-scale change in child health care.

There is a large and persistent failure to achieve widespread dissemination of evidence-based practices in child health care. Too often studies demonstrating evidence for effective child health care practices are not brought to scale and across different settings and populations. This failure is not due to a lack of knowledge, but rather a failure to bring to bear proven methods in dissemination, diffusion, and implementation (DD&I) science that target the translation of evidence-based medicine to everyday practice. DD&I science offers a framework and a set of tools to identify innovations that are likely to be implemented, and provides methods to better understand the capabilities and preferences of individuals and organizations and the social networks within these organizations that help facilitate widespread adoption. Successful DD&I is dependent on making the intervention context sensitive without losing fidelity to the core components of the intervention. The achievement of these goals calls for new research methods such as pragmatic research trials that combine hypothesis testing with quality improvement, participatory research that engages the target community at the beginning of research design, and other quasi-experimental designs. With the advent of health care reform, it will be extremely important to ensure that the ensuing large demonstration projects that are designed to increase integrated care and better control costs can be rapidly brought to scale across different practices settings, and health plans and will be able to achieve effectiveness in diverse populations.

Using Implementation and Dissemination Concepts to Spread 21st-century Well-Child Care at a Health Maintenance Organization.

We describe here the use of a conceptual framework for implementing and disseminating in a Health Maintenance Organization an evidence-based model of well-child care (WCC) that includes developmental and preventive services recommended by the American Academy of Pediatrics. Twenty-first Century WCC is a parent-centered, team-based, primary care model that combines online previsit assessments-completed by parents and caregivers regarding clinic-based weight, growth, and development assessments-with vaccinations and anticipatory guidance. Nurses, nurse practitioners, developmental specialists, and pediatricians all play roles in the WCC model. Patient and clinician interaction, health records, and resources are all facilitated through a Web-based diagnostic, management, tracking, and resource information tool. Implementation and dissemination concepts and their attendant practices and tools can reliably be used to augment strategic decisions about how to best disseminate and implement innovations in health care delivery. Unlike innovations that are embedded only in technical systems, validated models of team-based health care have multiple components that must be made compatible with complex sociotechnical systems. Interpersonal communication, work, coordination, and judgment are key processes that affect implementation quality. Implementation can involve tailoring to a particular site and customizing either the model or the organizational context to accommodate it.

Teen use of a patient portal: a qualitative study of parent and teen attitudes.

We conducted a qualitative study of the attitudes of teens and parents toward the use of a patient portal. We conducted two teen and two parent focus groups, one teen electronic bulletin board, and one parent electronic bulletin board. Videotapes and transcripts from the groups were independently analyzed by two reviewers for significant themes, which were then validated by two other members of the research team. Twenty-eight teens and 23 parents participated in the groups. Significant themes included issues about teens' control of their own healthcare; enthusiasm about the use of a patient portal to access their providers, seek health information, and make appointments; and concerns about confidentiality. In summary, there was considerable support among teens and parents for a patient portal as well as concerns about confidentiality. The teen portal affords an opportunity to negotiate issues of confidentiality.

The use of telemedicine access to schools to facilitate expert assessment of children with asthma.

Research has shown that access to an asthma specialist improves asthma outcomes. We hypothesized that we could improve access to expert asthma care through a telemedicine link between an asthma specialist and a school-based asthma program. We conducted a prospective cohort study in 3 urban schools to ascertain the feasibility of using an asthma-focused telemedicine solution. Each subject was seen by an asthma expert at 0, 8, and 32 weeks. The assessment and recommendations for care were sent to the primary care physician (PCP) and parents were told to contact their physician for follow-up care. Eighty three subjects participated in the study. Subjects experienced improvement (P < .05) in family social activities and the number of asthma attacks. Ninety four percent of subjects rated the program as good or excellent. This study demonstrates the feasibility and acceptance of a school-based asthma program using a telemedicine link to an asthma specialist.

Does clinical presentation explain practice variability in the treatment of febrile infants?

BACKGROUND: Previous studies documented considerable variability in the treatment of febrile infants, despite the existence of practice guidelines for this condition. None of those studies documented the extent to which this variability is accounted for by differences in clinical severity. OBJECTIVE: To quantify the individual effects of the patient's clinical presentation, demographic, provider, and practice characteristics, and regional variables on practice variability in the evaluation and treatment of febrile infants. METHODS: With data collected through the Pediatric Research in Office Settings network, we analyzed data on the treatment of 2712 febrile infants examined by 484 pediatricians located in 194 practices. We analyzed hospitalization, lumbar puncture, urinalysis and/or urine culture, blood work, and initial antibiotic administration. We obtained a summary score for evaluation and treatment intensity (ranging from no tests or treatments to comprehensive testing, hospitalization, and antibiotic therapy) by performing principal-components analysis with these 5 variables. This summary score was regressed with respect to patients' clinical presentation, demographic and practice/practitioner features, and geographic region. Provider fixed effects were also included in the model. RESULTS: Although the overall model explained 46.5% of the variance, the clinical characteristics of the patient alone explained 29.7% of the overall variance. Practice site fixed effects explained nearly 15% of the overall variance. Provider and practitioner characteristics and geographic region had minimal explanatory power. CONCLUSIONS: Our results show that measures of the patient's clinical presentation account for nearly one third of the variability that our model explains. This suggests that differences in clinical presentation and severity of illness underlie much of the observed practice variability among pediatricians evaluating and treating febrile infants. These findings demonstrate that the management of this common and potentially serious condition depends more on the clinical presentation of the patient than on the characteristics of the provider/practice and the residential region.

Effectiveness of a multicomponent self-management program in at-risk, school-aged children with asthma.

BACKGROUND: Improving asthma knowledge and self-management is a common focus of asthma educational programs, but most programs have had little influence on morbidity outcomes. We developed a novel multiple-component intervention that included the use of an asthma education video game intended to promote adoption of asthma self-management behaviors and appropriate asthma care. OBJECTIVE: To determine the effectiveness of an asthma education video game in reducing morbidity among high-risk, school-aged children with asthma. METHODS: We enrolled 119 children aged 5 to 12 years from low-income, urban areas in and around San Francisco, CA, and San Jose, CA. Children with moderate-to-severe asthma and parental reports of significant asthma health care utilization were randomized to participate in the disease management intervention or to receive their usual care (control group). Patients were evaluated for clinical and quality-of-life outcomes at weeks 8, 32, and 52 of the study. RESULTS: Compared with controls, the intervention group had significant improvements in the physical domain (P = .04 and P = .01 at 32 and 52 weeks, respectively) and social activity domain (P = .02 and P = .05 at 32 and 52 weeks, respectively) of asthma quality of life on the Child Health Survey for Asthma and child (P = .02 at 8 weeks) and parent (P = .04 and .004 at 32 and 52 weeks, respectively) asthma self-management knowledge. There were no significant differences between groups on clinical outcome variables. CONCLUSIONS: A multicomponent educational, behavioral, and medical intervention targeted at high-risk, inner-city children with asthma can improve asthma knowledge and quality of life.

Management and outcomes of care of fever in early infancy.

CONTEXT: Fever in infants challenges clinicians in distinguishing between serious conditions, such as bacteremia or bacterial meningitis, and minor illnesses. To date, the practice patterns of office-based pediatricians in treating febrile infants and the clinical outcomes resulting from their care have not been systematically studied. OBJECTIVES: To characterize the management and clinical outcomes of fever in infants, develop a clinical prediction model for the identification of bacteremia/bacterial meningitis, and compare the accuracy of various strategies. DESIGN: Prospective cohort study. SETTING: Offices of 573 practitioners from the Pediatric Research in Office Settings (PROS) network of the American Academy of Pediatrics in 44 states, the District of Columbia, and Puerto Rico. PATIENTS: Consecutive sample of 3066 infants aged 3 months or younger with temperatures of at least 38 degrees C seen by PROS practitioners from February 28, 1995, through April 25, 1998. MAIN OUTCOME MEASURES: Management strategies, illness frequency, and rates and accuracy of treating bacteremia/bacterial meningitis. RESULTS: The PROS clinicians hospitalized 36% of the infants, performed laboratory testing in 75%, and initially treated 57% with antibiotics. The majority (64%) were treated exclusively outside of the hospital. Bacteremia was detected in 1.8% of infants (2.4% of those tested) and bacterial meningitis in 0.5%. Well-appearing infants aged 25 days or older with fever of less than 38.6 degrees C had a rate of 0.4% for bacteremia/bacterial meningitis. Frequency of other illnesses included urinary tract infection, 5.4%; otitis media, 12.2%; upper respiratory tract infection, 25.6%; bronchiolitis, 7.8%; and gastroenteritis, 7.2%. Practitioners followed current guidelines in 42% of episodes. However, in the initial visit, they treated 61 of the 63 cases of bacteremia/bacterial meningitis with antibiotics. Neither current guidelines nor the model developed in this study performed with greater accuracy than observed practitioner management. CONCLUSIONS: Pediatric clinicians in the United States use individualized clinical judgment in treating febrile infants. In this study, relying on current clinical guidelines would not have improved care but would have resulted in more hospitalizations and laboratory testing.

Effect of a clinical practice improvement intervention on Chlamydial screening among adolescent girls.

CONTEXT: Chlamydia trachomatis infection is a serious public health concern that disproportionately affects adolescent girls. Although annual C trachomatis screening of sexually active adolescent girls is recommended by health professional organizations and is a Health Employer Data and Information Set (HEDIS) performance measure, this goal is not being met. OBJECTIVE: To test the effectiveness of a system-level, clinical practice improvement intervention designed to increase C trachomatis screening by using urine-based tests for sexually active adolescent girls identified during their routine checkups at a pediatric clinic. DESIGN, SETTING, AND PARTICIPANTS: A randomized cluster of 10 pediatric clinics in the Kaiser Permanente of Northern California health maintenance organization, where adolescent girls aged 14 to 18 years had a total of 7920 routine checkup visits from April 2000 through March 2002. INTERVENTION: Five clinics were randomly assigned to provide usual care and 5 to provide the intervention, which required that leadership be engaged by showing the gap between best practice and current practice; a team be assembled to champion the project; barriers be identified and solutions developed through monthly meetings; and progress be monitored with site-specific screening proportions. MAIN OUTCOME MEASURE: Chlamydia trachomatis screening rate for sexually active 14- to 18-year-old girls during routine checkups at each participating clinic. RESULTS: The population of adolescents was ethnically diverse with an average age of 15.4 years. Twenty-four percent of girls in the experimental clinics and 23% in the control clinics were sexually active. Of the 1017 patients eligible for screening in the intervention clinic, 478 (47%) were screened; of 1194 eligible for screening in the control clinic, 203 (17%) were screened. At baseline, the proportion screened was 0.05 (95% confidence interval [CI], 0.00-0.17) in the intervention and 0.14 (95% CI, 0.01-0.26) in the control clinics. By months 16 to 18, screening rates were 0.65 (95% CI, 0.53-0.77) in the intervention and 0.21 (95% CI, 0.09-0.33) in the control clinics (time period by study group interaction, F(6,60) = 5.33; P<.001). The average infection rate for the experimental clinics was 5.8% (23 positive test results out of 393 total urine tests and a total of 3986 clinic visits) vs 7.6% in controls (12 positive test results out of 157 tests and 3934 clinic visits). CONCLUSIONS: Implementation of this clinical practice intervention in a large health maintenance organization system is feasible, and it significantly increased the C trachomatis screening rates for sexually active adolescent girls during routine checkups.

Agreement among measures of asthma status: a prospective study of low-income children with moderate to severe asthma.

BACKGROUND: Because no validated "gold standard" for measuring asthma outcomes exists, asthma interventions are often evaluated using a large number of disease status measures. Some of these measures may be redundant, whereas others may be complementary. Use of multiple outcomes may lead to ambiguous results, increased type I error rates, and be an inefficient use of resources including caregiver and patient/participant time and effort. Understanding the relationship between these measures may facilitate more parsimonious and valid evaluation strategies without loss of information. OBJECTIVE: To assess the relationships between multiple measures of asthma disease status over time. DESIGN/METHODS: We used data from a randomized, controlled trial of a comprehensive disease management program involving 119 disadvantaged inner-city children aged 5 to 12 years with moderate to severe asthma. Spearman correlations were calculated between the following asthma disease status measures: parent-reported disease symptoms, parent-reported health care utilization, functional health status using the American Academy of Pediatrics' validated Child Health Survey for Asthma (CHSA), diary data (symptom scores, night wakings, and bronchodilator use), and pulmonary function tests at baseline, 32 weeks, 52 weeks, and changes from baseline to 52 weeks. RESULTS: Ninety-four (79%) of randomized patients participated at baseline and 52 weeks. Completion rates for outcome measures ranged from 79% (CHSA, spirometry data) to 64% (diary data). At baseline, asthma symptoms, health care utilization, and individual domains from the CHSA were significantly correlated (r = 0.21-0.53). These correlations were stable over the 52-week follow-up. Forced expiratory volume in 1 second and diary data did not correlate to any other measures at baseline, and these measures correlated only inconsistently with other measures at 32 weeks and 52 weeks. Baseline to 52-week changes in asthma symptoms, utilization, and the CHSA domains were significantly correlated (0.22-0.56), as were baseline to 52-week changes in symptom days, night wakings, and the CHSA domains (r = 0.24-0.64). Baseline to 52-week changes in forced expiratory volume in 1 second and diary data did not correlate with other measures. CONCLUSIONS: These results suggest that asthma status and change in asthma status over time after introduction of a disease management intervention are best characterized by parent-reported symptoms, parent-reported utilization, and functional health status measures. Asthma diaries and pulmonary function tests did not seem to provide additional benefit, although they may play an important role in individual patient management. Our findings suggest a parsimonious evaluation strategy would include collection of key data elements regarding symptoms, utilization, and functional health status only, without loss of vital response information.

Effect of an evidence-based hand washing policy on hand washing rates and false-positive coagulase negative staphylococcus blood and cerebrospinal fluid culture rates in a level III NICU.

OBJECTIVE: To determine the effect of implementing an evidence-based hand washing policy on between-patient hand washing compliance and on blood and cerebrospinal fluid (CSF) culture rates in a level III neonatal intensive care unit (NICU). METHODS: An evidence-based hand washing policy, supported by an intensive education program, was introduced in a regional NICU. A total of 2009 preintervention neonates (16,168 patient days) over 17 months were compared to 676 postintervention neonates (5779 patient days) over 6 months. Hand washing compliance and rates of blood and CSF cultures yielding coagulase negative staphylococci (CONS) were compared before and after intervention. RESULTS: Compliance with appropriate between-patient hand washing improved (from 47.4% to 85.4%, p=0.001) after the hand washing policy was introduced. The rate of cultures positive for CONS declined from 6.1+/-2.3 to 3.2+/-1.6 per 1000 patient days (p=0.005). Most of this reduction was attributable to a reduction in false-positive cultures, from 4.2+/-2.4 to 1.9+/-1.8 per 1000 patient days (p=0.042), but there was a trend toward decreased true-positive cultures (from 2.1+/-1.2 to 1.2+/-1.0 per 1000 patient days, p=0.074) as well. Potential confounders and demographics factors were similar between the control and intervention subjects. CONCLUSION: Implementation of an evidence-based hand washing policy resulted in a significant increase in hand washing compliance and a significant decrease in false-positive coagulase negative staphylococcal blood and CSF culture rates. Exploratory data analysis revealed a possible effect on true-positive coagulase negative staphylococcal blood and CSF culture rates, but these results need to be confirmed in future studies.