The Impact of the Patient-Centered Medical Home on Asthma-Related Visits to the Emergency Room: A Fixed Effects Regression Approach.

Objective To estimate the effect of a patient-centered medical home (PCMH) intervention on asthma-related emergency room (ER) visits of pediatric patients. Methods Patients receiving care at pediatric primary care practices participating in the Florida Pediatric Medical Home Demonstration Project as well as pediatric patients treated at non-participating clinics were identified from 4 years of claims and enrollment data. We estimate several fixed effects logistic regression models using one pre-treatment year and three post-treatment years to investigate whether asthma-related ER visits decreased because of the PCMH intervention. Results The estimation suggests that the intervention did have a negative effect on asthma-related ER visits in the earlier part of the intervention (OR 0.34; 95% CI 0.16-0.73). However, this effect was not detected in the later years. Because fixed effects models require repeated observations on the same individual, we believe our estimations of the PCMH model's impact is more accurate than previous studies. Conclusion for Practice Reducing asthma ER visits is a task that might be immediately actionable for PCMH practices, or those undergoing transformation. Our results adds to the others suggesting positive impacts of the PCMH.

The Comorbidity of Physical, Mental, and Developmental Conditions Associated with Childhood Adversity: A Population Based Study.

OBJECTIVE: Adverse childhood experiences (ACEs) are associated with myriad health conditions and risk behaviors in both adolescents and adults. In this study we examine the association between ACEs and specific physical, mental, and developmental conditions, as well as their comorbidity, in a nationally representative sample of children 0-17 years. METHODS: Data from the 2011-2012 National Survey for Child Health (NSCH) were used. A total of 95,677 random-digit-dial interviews with parents of children 0-17 years were conducted across all 50 states and the District of Columbia. Outcomes included singular condition domains (physical, mental, and developmental) as well as combinations of condition domains (e.g., physical plus mental, mental plus developmental, etc.). RESULTS: Twenty-three percent of parents reported that their child experienced 1 ACE; 9.2 % experienced 2 ACEs, and 10.3 % experienced three or more. Across all three condition domains and combinations of domains, children who experienced at least one ACE were more likely than children who experienced 0 ACEs to have at least one condition. Additionally, greater ACEs was associated with increased likelihood of at least one condition in each domain and in multiple domains. CONCLUSIONS: for practice These findings support the extension of existing family environment screening tools in pediatric practices as well as the establishment of a system for monitoring ACEs in families with multiple or complex conditions.

Factors Associated with Having a Medical Home for Children At-Risk of Experiencing Negative Events: Results from a National Study.

OBJECTIVES: Although the Patient Centered Medical Home is a considered an optimal model for care, some children still do not receive care in this model. Beyond the clinical and practitioner factors known to affect having a medical home, family and environmental risks [referred to as adverse childhood experiences (ACE)] may also be associated with having a medical home. This study's purpose was to examine whether family and environment risks are associated with children having a medical home. METHODS: Data from the nationally representative, cross-sectional 2011-2012 National Survey of Children's Health telephone survey were used (N = 95,677). Analyses were conducted to describe the sample characteristics and determine the association between family and environmental risks and whether a child has a medical home. A subset of risks were modeled from the seminal study of ACEs. RESULTS: Nearly one-quarter of parents reported that their children experienced at-least one ACE. Compared to children who experienced no ACEs, children who experienced at least one ACE, or other family and environmental risks, had lower odds of having a medical home than those whom did not. Logistic regressions showed that cumulative ACEs (odds ratio (OR) 0.76; 95 % confidence interval (CI) 0.65-0.90) as well as other family and environmental risks (OR 0.36, 95 % CI 0.26-0.51) were related to lower odds of having a medical home. CONCLUSIONS: This study suggests that family and environmental risks, including ACEs, impact parental report of a child having a medical home and that a dosage effect may exist. ACEs and other risk factors must be considered when providers care for children at-risk of experiencing negative events, particularly multiple negative events.

Priorities for global research into children's palliative care: results of an International Delphi Study.

BACKGROUND: There is an urgent need to develop an evidence base for children's palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research. METHOD: The International Children's Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe. RESULTS: A list of 26 research areas reached consensus. The top five priorities were: Children's understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children. CONCLUSIONS: Information from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This provides a much needed starting place for the allocation of funds and building research infrastructure. Researchers working in CPC are in a unique position to collaborate and produce the evidence that is needed.

Measuring quality in pediatrics: Florida's early experiences with the CHIPRA core measure set.

Enacted in 2009, the Children's Health Insurance Program Reauthorization Act (CHIPRA) aims, among other things, to increase state's accountability for providing quality health care to all children in the United States. Although it is important for states to report on the measures, learning from their successes and failures is critical in producing the measures so that states will be prepared for future regulations. Florida covered roughly 2.59 million children in 2010. Administrative, medical record, registry, and survey data were used to report on 20 of the 24 CHIPRA core measures. Technical specifications from the Centers for Medicare and Medicaid Services were used. Approximately 10 months were needed to identify, collect, safeguard, and process the required data. Florida was able to build on its past experiences with performance measurement reporting and surveying. Conducting medical record reviews at the state level and producing measures that required registry data proved to be challenging. Although Florida was successful in its first year of reporting the CHIPRA core measures, certain populations were not included in some of the measures. The next phase of Florida's CHIPRA project will focus on developing and implementing a dissemination plan and creating opportunities to improve the measures. Florida has made significant progress in the early phases of reporting the CHIPRA measures. As Florida gains more experience in reporting the measures, and results from other states are released, it will be easier to put the statewide measure results into context. Once meaningful comparisons can be made, Florida will be able to better plan for the future of child health and health outcomes.

Effect of an integrated care system on utilization for CSHCN in Florida.

In 2006, Florida began a pilot program under a federal Medicaid waiver to reform its Medicaid program in Broward and Duval counties. The Children's Medical Services Network, a subcontracted health care delivery system for Florida's children with special health care needs (CSHCN) enrolled in public insurance programs, participated in Medicaid reform through an Integrated Care System (ICS) for its enrollees. The ICS constitutes a significant departure from the subcontracted fee-for-service system used to deliver care to CSHCN in the non-reform counties, and limited information exists about its impact. The purpose of this study was to assess the effects of the ICS on Medicaid utilization among CSHCN in Broward and Duval. Administrative data from 3,947 CSHCN in Broward and Duval, and two control counties, enrolled in Florida's Medicaid program between 2006 and 2008 were used for analyses. Fixed effects negative binomial models were used to estimate the impact of the ICS on inpatient, outpatient, and emergency department utilization. Results show the number of outpatient visits decreased by 9 % in Broward and 16 % in Duval. The number of inpatient stays decreased in Duval by 35 %. Emergency room utilization increased slightly in Broward, although the estimate was not significant. Results suggest that managed care under the ICS has impacted utilization, most significantly for inpatient care. The ICS presents a viable model of managed care for CSHCN that could result in cost savings. Results should be interpreted with care because the full effects of the ICS implementation may take more time to materialize.

Assessing patient experiences in the pediatric patient-centered medical home: a comparison of two instruments.

The Patient-Centered Medical Home (PCMH) is a model of care that has been promoted as a way to transform a broken primary care system in the US. However, in order to convince more practices to make the transformation and to properly reimburse practices who are PCMHs, valid and reliable data are needed. Data that capture patient experiences in a PCMH is valuable, but which instrument should be used remains unclear. Our study aims to compare the validity and reliability of two national PCMH instruments. Telephone surveys were conducted with children who receive care from 20 pediatric practices across Florida (n = 990). All of the children are eligible for Medicaid or the Children's Health Insurance Program. Analyses were conducted to compare the Consumer Assessment of Health Plan Survey-Patient-Centered Medical Home (CAHPS-PCMH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN) medical home domain. Respondents were mainly White non-Hispanic, female, under 35 years old, and from a two-parent household. The NS-CSHCN outperformed the CAHPS-PCMH in regard to scale reliability (Cronbach's alpha coefficients all ≥0.81 vs. 0.56-0.85, respectively). In regard to item-domain convergence and discriminant validity the CAHPS-PCMH fared better than the NS-CSHCN (range of convergence 0.66-0.93 vs. 0.32-1.00). The CAHPS-PCMH did not correspond to the scale structure in construct validity testing. Neither instrument performed well in the known-groups validity tests. No clear best instrument was determined. Further revision and calibration may be needed to accurately assess patient experiences in the PCMH.

Assessing the congruence of transition preparedness as reported by parents and their adolescents with special health care needs.

Several studies have investigated how prepared adolescents are to transition to adult health care and barriers to transition for adolescents with special health care needs. The majority of these studies, however, have only assessed these experiences from the parents' point of view. Our study aims to assess the congruence of adolescents and parents reported transition planning and the factors associated with planning. A secondary data analysis was conducted using telephone survey data. Data were collected from parents and adolescents with special health care needs who received health care through Florida's Title V public insurance program. The final sample included 376 matched pairs of adolescent-parent surveys. To assess health care transition planning, respondents were asked if discussions had occurred with the adolescents' doctor, nurse, or with each other. Parents reported higher levels of planning than adolescents. Results show the lowest level of agreement between the parent and adolescent reports (κ < 0.2) and the highest level of agreement when parents and adolescents were asked if they discussed transition with each other (κ = 0.19). Regression results suggest that older adolescents are more prepared (vs. younger) and that adolescents whose parents have lower educational attainment are less prepared for transition. Results from this study suggest that there may be miscommunication around discussions related to transition, although further research is warranted. It is important to ensure that adolescents, not just parents, have a thorough understanding of transition since they will ultimately be responsible for their own health care once they reach adulthood.

Factors associated with a patient-centered medical home among children with behavioral health conditions.

At some point in their lives, nearly one-half of all American children will have a behavioral health condition. Many will not receive the care they need from a fragmented health delivery system. The patient-centered medical home is a promising model to improve their care; however, little evidence exists. Our study aim was to examine the association between several behavioral health indicators and having a patient-centered medical home. 91,642 children's parents or guardians completed the 2007 National Survey of Children's Health. An indicator for patient-centered medical home was included in the dataset. Descriptive statistics, bivariate tests, and multivariate regression models were used in the analyses. Children in the sample were mostly Male (52 %), White (78 %), non-Hispanic (87 %), and did not have a special health care need (80 %). 6.2 % of the sample had at least one behavioral health condition. Conditions ranged from ADHD (6 %) to Autism Spectrum Disorder (ASD) (1 %). Frequency of having a patient-centered medical home also varied for children with a behavioral health condition (49 % of children with ADHD and 33 % of children with ASD). Frequency of having a patient-centered medical home decreased with multiple behavioral health conditions. Higher severity of depression, anxiety, and conduct disorder were associated with a decreased likelihood of a patient-centered medical home. Results from our study can be used to target patient-centered medical home interventions toward children with one or more behavioral health conditions and consider that children with depression, anxiety, and conduct disorder are more vulnerable to these disparities.

Physicians' undecided attitudes toward posthumous reproduction: fertility preservation in cancer patients with a poor prognosis.

BACKGROUND: The American Society for Clinical Oncology (ASCO) established guidelines for fertility preservation for cancer patients. In a national study of US oncologists, we examined attitudes toward the use of fertility preservation among patients with a poor prognosis, focusing on attitudes toward posthumous reproduction. METHOD: A cross-sectional survey was administered via mail and Internet to a stratified random sample of US oncologists. The survey measured demographics, knowledge, attitude, and practice behaviors regarding posthumous reproduction and fertility preservation with cancer patients of childbearing age. RESULTS: Only 16.2% supported posthumous parenting, whereas the majority (51.5%) did not have an opinion. Analysis of variance indicated that attitudes toward posthumous reproduction were significantly related to physician practice behaviors and were dependent on oncologists' knowledge of ASCO guidelines. CONCLUSIONS: Physician attitudes may conflict with the recommended guidelines and may reduce the likelihood that some patients will receive information about fertility preservation. Further education may raise physicians' awareness of poor-prognostic patients' interest in pursuing this technology.

Factors associated with perceived barriers to pediatric palliative care: a survey of pediatricians in Florida and California.

PURPOSE: The provision and uptake of pediatric palliative care continues to be plagued by barriers. Several studies have documented these barriers, but none have done so with a diverse sample (most are at a single institution) or specifically about pediatric palliative care. Moreover, none have investigated the factors associated with perceived barriers. Our study has two aims: (1) to describe the barriers to pediatric palliative care as reported by a group of pediatricians practicing in two large States in the US; and (2) to identify factors associated with these perceived barriers. METHODS: Cross-sectional survey data were collected from 303 pediatricians in Florida and California. RESULTS: The two greatest barriers reported by the pediatricians were related to families' reluctance to accept palliative care (95%) and families viewing palliative care as giving up (94%). Only 42% of pediatricians noted that reimbursement was a barrier. Across all the regressions, three factors were consistently associated with barriers to palliative care: race/ethnicity of pediatrician practice setting, and the percentage of low-income patients. CONCLUSIONS: Our findings can be used to develop targeted educational interventions towards providers and families. Understanding the factors that are driving the low uptake in palliative care is the first step in advancing pediatric palliative care overall.

Effects of an Integrated Care System on quality of care and satisfaction for children with special health care needs.

To assess the effects of an Integrated Care System (ICS) on parent-reported quality of care and satisfaction for Children with Special Health Care Needs (CSHCN). In 2006 Florida reformed its Medicaid program in Broward and Duval counties. Children's Medical Services Network (CMSN) chose to participate in the reform and developed an ICS for CSHCN. The ICS ushered in several changes such as more prior approval requirements and closing of the provider network. Telephone surveys were conducted with CMSN parents whose children reside in the reform counties and parents whose children reside outside of the reform counties in 2006 and 2007 (n = 1,727). Results from multivariate quasi-experimental models show that one component of parent-report quality of care, customer service, increased. Following implementation of the ICS, customer service increased by 0.22 points. After implementation of the ICS, parent-reported quality and satisfaction were generally unaffected. Although significant increases were not seen in the majority of the quality and satisfaction domains, it is nonetheless encouraging that parents did not report negative experiences with the ICS. It is important to present these interim findings so that progress can be monitored and decision-makers can begin to consider if the program should be expanded statewide.

Factors associated with a medical home among children with Attention-Deficit Hyperactivity Disorder.

Providing a medical home to children with Attention-Deficit Hyperactivity Disorder (ADHD) is challenging. Little is known about the factors associated with having a medical home for these children, or how comorbidities affect having a medical home. Our study aims are: (1) identify factors associated with having a medical home and five sub-components of a medical home and (2) determine the effect of medical home on several outcomes for children with ADHD. The sample included 5,495 children with ADHD from the 2007 National Survey of Children's Health. Descriptive and multivariate analyses were conducted. Children with ADHD alone and children with ADHD plus a physical diagnosis had greater frequencies of having a medical home, or meeting the five sub-components, than children with ADHD plus a mental diagnosis. Multivariate results show that children with ADHD plus a physical and/or mental comorbidity were 24-63% more likely to be without a medical home compared to children with only ADHD. Having a medical home also had a bearing on several child health outcomes. Having a medical home was significantly associated with being less likely to have an unmet health need and having fewer missed school days; but also being less likely to have received needed mental health care (P < .05). Our results suggest that there are differences in parent's perceptions of receiving care among children with ADHD. Pediatric medical home projects and policies should acknowledge that children with ADHD often have comorbidities making their care more complex. These complexities should be addressed during practice transformation and setting reimbursement policies.

Caring for children with life-threatening illnesses: impact on White, African American, and Latino families.

We describe the racial and ethnic variation in family impact resulting from caring for a child with a life-threatening illness. Parents of children aged 2-21 years diagnosed with a potentially life-threatening illness and enrolled in Florida's Medicaid and Children's Medical Services Network programs were surveyed. Two hundred sixty-six telephone surveys were conducted in English and Spanish between November 2007 and April 2008. In adjusted models, compared with Whites, Latinos reported that their child's illness resulted in a greater negative impact on the family. Continued study of this group of parents is critical to developing culturally appropriate interventions to reduce strain and burden and improve the quality of life for families.

Information seeking behaviors of parents whose children have life-threatening illnesses.

OBJECTIVES: For children with life-threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e-health literacy of Internet-users. STUDY DESIGN: Cross-sectional, telephone survey of 129 parents whose children are in a pediatric palliative care program in Florida. RESULTS: Four out of five parents report that they use the Internet, and 64% of Internet-users use it daily. Parents who never use the Internet, versus parents who do use the Internet, are predominately Hispanic (50%) and have less than a high school education (64%) (P ≤ 0.023). Internet-users have high levels of e-health literacy; however, they are not confident or are unsure about the quality of information on the Internet. Not having graduated from high school was associated with a decrease in e-health literacy and using the Internet as the primary information source (vs. doctor as primary source) was associated with an increase in e-health literacy. CONCLUSION: Parents of children with life-threatening illnesses have access to and use the Internet as a source of information about their children's health. More information is needed to explore how electronic-based interventions could be used to impact information seeking of parents whose children are in pediatric palliative care programs.

Pediatric palliative care provision around the world: a systematic review.

Pediatric palliative care is recommended by many organizations. Yet, there is no information available on the progress that has been made in providing this care or the gaps that still exist in provision around the world. We conducted a systematic review to address this gap in knowledge. The systematic review identified 117 peer-reviewed and non-peer reviewed resources. Based on this information, each country was assigned a level of provision; 65.6% of countries had no known activities, 18.8% had capacity building activities, 9.9% had localized provision, and 5.7% had provision that was reaching mainstream providers. Understanding the geographic distribution in the level of provision is crucial for policy makers and funders.

Parents' experiences in choosing a health plan for their children with special health care needs.

To investigate the information sources, and the perceived helpfulness of each source, that parents used when choosing a health plan for their children with special health care needs (CSHCN) and to determine how parents' perceptions varied by their sociodemographic characteristics and their children's enrollment status (newly versus previously enrolled). In Florida, a cross sectional study was carried out using 2007 telephone survey data from 500 parents. Sixty-three percent of parents used at least one information source to choose a health plan for their CSHCN. More parents used the Help Line, yet more parents found it to be the least helpful resource. Multivariate analyses suggest that Hispanic parents were 79% more likely and parents of prior enrollees were 1.2 times less likely to use one of the four information sources versus their referent groups. African American parents were 85% more likely and parents residing in Broward County were 55% less likely to indicate that the process was easy versus their referent groups. Hispanic parents were 77% more likely, African American parents were 67% more likely and college graduates were 59% less likely to report that the information they received was adequate versus their referent groups. The results did not highlight one source of information as more useful and helpful. Race and ethnicity seemed to have the most systematic effect on the parents' experiences in choosing a health plan for their CSHCN, highlighting the need for further research to ensure that information is appropriate across subgroups.

Internet use and eHealth literacy of low-income parents whose children have special health care needs.

BACKGROUND: The Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children. Yet, no information is available about this vulnerable group. OBJECTIVE: For parents of children with special health care needs we sought to (1) describe their Internet access and use, (2) determine which child and household factors were associated with Internet use, (3) describe eHealth literacy of Internet users, and (4) determine which child and household factors were associated with greater eHealth literacy. METHODS: This was a cross-sectional telephone survey of 2371 parents whose children with special health care needs were enrolled in Florida's Medicaid and State Children's Health Insurance Plan (SCHIP) programs (4072 parents were approached). To be enrolled in the program, families must have incomes that are less than or equal to 200% of the federal poverty level. The eHealth Literacy Scale (eHEALS) was used to measure eHealth literacy. Descriptive and multivariate analyses were conducted to address the study objectives. RESULTS: The survey response rate was 58.2%. Participating parents were mainly female (2154/2371, 91%), white non-Hispanic (915/2371, 39%), English speaking (1827/2371, 77%), high school graduates (721/2371, 30%), married (1252/2371, 53%), and living in a two-parent household (1212/2371, 51%). Additionally, 82% of parents (1945/2371) in the sample reported that they used the Internet, and 49% of those parents used it daily (1158/2371). Almost three-quarters of Internet users had access to the Internet at home while about one-half had access at work. Parents who were African American, non-English speaking, older, and not college graduates were less likely to use the Internet than their referent groups (P < .001). About 74% of Internet users (1448/1945) reported that they knew how to find health information for their children. However, only about one-half (1030/1945) reported that they can tell high quality from low quality resources online or that they feel confident in using information accessed online to make health decisions. Multivariate regression results consistently showed that being a non-English speaker, having less than a high school education, and being older were all significantly associated with lower eHealth literacy (all P < .001). CONCLUSION: Low-income parents of children with special health care needs have access to and use the Internet as a source of information about their children's health. However, some parents are unable to distinguish between high and low quality information and are not confident in using the Internet. This information is timely because as the pressure to use the Internet to empower consumers and exchange information increases, issues related to access and disparities must be better understood.

Pediatric nurses' attitudes toward hospice and pediatric palliative care.

Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.

Assessing non-response bias in pediatric palliative care research.

National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida's publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which 'non-response' can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.