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.

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.

Comparing Smoking Cessation Interventions among Underserved Patients Referred for Lung Cancer Screening: A Pragmatic Trial Protocol.

Smoking burdens are greatest among underserved patients. Lung cancer screening (LCS) reduces mortality among individuals at risk for smoking-associated lung cancer. Although LCS programs must offer smoking cessation support, the interventions that best promote cessation among underserved patients in this setting are unknown. This stakeholder-engaged, pragmatic randomized clinical trial will compare the effectiveness of four interventions promoting smoking cessation among underserved patients referred for LCS. By using an additive study design, all four arms provide standard "ask-advise-refer" care. Arm 2 adds free or subsidized pharmacologic cessation aids, arm 3 adds financial incentives up to $600 for cessation, and arm 4 adds a mobile device-delivered episodic future thinking tool to promote attention to long-term health goals. We hypothesize that smoking abstinence rates will be higher with the addition of each intervention when compared with arm 1. We will enroll 3,200 adults with LCS orders at four U.S. health systems. Eligible patients include those who smoke at least one cigarette daily and self-identify as a member of an underserved group (i.e., is Black or Latinx, is a rural resident, completed a high school education or less, and/or has a household income <200% of the federal poverty line). The primary outcome is biochemically confirmed smoking abstinence sustained through 6 months. Secondary outcomes include abstinence sustained through 12 months, other smoking-related clinical outcomes, and patient-reported outcomes. This pragmatic randomized clinical trial will identify the most effective smoking cessation strategies that LCS programs can implement to reduce smoking burdens affecting underserved populations. Clinical trial registered with clinicaltrials.gov (NCT04798664). Date of registration: March 12, 2021. Date of trial launch: May 17, 2021.

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.

Measuring quality of life in pediatric palliative care: challenges and potential solutions.

Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. This study aimed to validate the psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life 4.0, for children with life-limiting illnesses. Analyses were conducted using telephone survey data collected from 266 parents whose Medicaid-enrolled children had life-limiting illnesses. Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.

Factors that affect parent perceptions of provider-family partnership for children with special health care needs.

Partnering between families and their children's providers is a cornerstone of family-centered care. This study aimed to identify factors associated with family-provider partnership and determine the association between partnership and other outcome measures for children with special health care needs (CSHCN). Descriptive, bivariate, and multivariate analyses were conducted using data from the 2005-2006 National Survey of Children with Special Health Care Needs. Multivariate models showed that CSHCN who are White non-Hispanic, younger than 12, reside in households with incomes above 400% of the federal poverty level, and have a usual source of care were associated with family-provider partnership. Multivariate models showed that family-provider partnership was significantly associated with adequate insurance, early and continual screening, organized health care services, and transition preparedness. Family-provider partnership was associated with 20% fewer emergency department visits and 9% fewer school days missed. This study suggests that policies aimed at promoting family-provider partnership could increase health outcomes for CSHCN.

"I Don't Have Time to Sit and Talk with Them": Hospitalists' Perspectives on Palliative Care Consultation for Patients with Dementia.

BACKGROUND/OBJECTIVES: Specialty palliative care for hospitalized patients with dementia is widely recommended and may improve outcomes, yet rates of consultation remain low. We sought to describe hospitalists' decision-making regarding palliative care consultation for patients with dementia. DESIGN: Descriptive qualitative study. SETTING: Seven hospitals within a national nonprofit health system. PARTICIPANTS: Hospitalist physicians. MEASUREMENTS: Individual semistructured interviews. We used thematic analysis to explore factors that influence hospitalists' decision to consult palliative care for patients with dementia. RESULTS: A total of 171 hospitalists were eligible to participate, and 28 (16%) were interviewed; 17 (61%) were male, 16 (57%) were white, and 18 (64%) were in practice less than 10 years. Overall, hospitalists' decisions to consult palliative care for patients with dementia were influenced by multiple factors across four themes: patient, family caregiver, hospitalist, and organization. Consultation was typically only considered for patients with advanced disease, particularly those receiving aggressive care or with family communication needs (navigating conflicts around goals of care and improving disease and prognostic understanding). Hospitalists' limited time and, for some, a lack of confidence in palliative care skills were strong drivers of consultation. Palliative care needs notwithstanding, most hospitalists would not request consultation if they perceived families would be resistant to it or had limited availability or involvement in caregiving. Additional barriers to referral at the organization level included a hospital culture that conflated palliative and end-of-life care and busy palliative care teams at some hospitals. CONCLUSION: Hospitalists described a complex consultation decision process for involving palliative care specialists in the care of patients with dementia. Systematic identification of hospitalized patients with dementia most likely to benefit from palliative care consultation and strategies to overcome modifiable family and organization barriers are needed. J Am Geriatr Soc 68:2365-2372, 2020.

Assessing the impact of an integrated care system on the healthcare expenditures of children with special healthcare needs.

OBJECTIVES: The Children's Medical Services Network, a carved-out fee-for-service healthcare system for Florida's children with special healthcare needs (CSHCN), chose to develop an integrated care system (ICS) for its enrollees. The goals of this study were to analyze the effects of a managed care program on the Medicaid expenditures of CSHCN and to evaluate the performance of econometric models used to analyze healthcare expenditures. STUDY DESIGN: We used administrative data from 3947 CSHCN enrolled in Florida's Medicaid program between 2006 and 2008 for 2 treatment and 2 control counties. The 2 treatment counties were subject to the new managed care ICS. METHODS: To account for the unique nature of healthcare expenditures data, 5 econometric models were constructed. Using a difference-in-differences approach, these models were used to estimate differences in healthcare expenditures between CSHCN in the reform and control counties. RESULTS: The ICS program decreased outpatient, inpatient, pharmacy, and total costs. These effects were statistically significant for 1 of the reform counties. Emergency department costs increased slightly, though not significantly. Among the econometric models, the generalized linear models outperformed the ordinary least squares regressions. CONCLUSIONS: This analysis provides evidence that managed care programs such as Florida's ICS have the potential to reduce healthcare expenditures.

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs. OBJECTIVE: To determine how families are impacted and what factors are associated with greater impact. DESIGN: 2008 cross-sectional telephone survey. SETTING: Florida. PATIENTS: Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE: The Impact on Family (IOF) Scale. RESULTS: The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their children's illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family. CONCLUSION: Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.

Pediatricians' management practices for chronic pain.

OBJECTIVE: While research has established that pediatric pain is undertreated, it is unclear who should have primary responsibility for its management. This study asks pediatricians who they believe should treat pain and how pain should be assessed and managed. METHODS: We administered a mail and online survey about pediatric chronic pain and palliative care to a random sample of 800 U.S. pediatricians, and performed descriptive and multivariate analyses on 303 respondents. RESULTS: Most pediatrician responders were white, non-Hispanic (55.8%), and had been in practice 10 or more years (68.0%). Only one third of pediatricians (32.3%) felt it was their primary responsibility to treat chronic pain; most believed pain specialists (58.1%), other specialists, (39.6%), or hospice providers (26.1%) should be responsible. For pain assessments, most report using parent (87.1%) or patient (84.2%) verbal reports and one half (49.5%) use pain diaries, although multivariate analyses showed that inpatient pediatricians were significantly less likely to use these modalities. Acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs) were commonly cited medications to usually or always treat pain (61.7% and 66.9%, respectively) and 19.3% report never or rarely prescribing intermittent opiates in their practice. Multivariate analyses showed that there were no consistent physician qualities that predicted the use of opiate prescriptions. CONCLUSIONS: Our findings illustrate that pediatricians' theoretical approaches to chronic pain management are more collaborative than independent. Future research must test if pediatricians could benefit from supplemental pain education, increased emphasis on clinical guidance, and an increased awareness of hospice to be included in the pain management team for children.

Developing a pediatric palliative care program: addressing the lack of baseline expenditure information.

An estimated 500 000 children annually cope with life-limiting conditions expected to lead to premature death, but little is known about their health care expenditures at the end of life. This information is crucial for health planners to propose pediatric palliative care programs. This study aims to estimate predicted health care expenditures for Medicaid-eligible infants and children across several health service categories. Across these categories, infants and children were predicted to spend about US$110 000 and US$62 000 at the end of life, respectively. About 5% of infants and 8% of children incurred hospice expenditures. Results from the multivariate models suggest that black, non-Hispanic children are less likely than white, non-Hispanic children to use hospice care. Baseline expenditure information from this study can be used to develop integrated pediatric palliative care models. Our findings also suggest that many more children could potentially benefit by using hospice care at the end of life.

Pediatric palliative care: describing hospice users and identifying factors that affect hospice expenditures.

OBJECTIVE: Each year approximately 50,000 children die. These children could benefit from pediatric palliative care, and hospice is one important provider of palliative care. However, little information exists to understand pediatric hospice care. This study seeks to describe Medicaid pediatric hospice and nonhospice users and to identify factors that affect hospice expenditures. DESIGN: Analyses of Medicaid administrative data and death certificate data. PARTICIPANTS: A total of 1527 children in Florida Medicaid program. RESULTS: Few children in the sample used hospice services (11%) and the dominant location of death was home for hospice users (55%). Descriptive analyses show that pediatric hospice users had higher inpatient, outpatient, emergency department, and pharmacy expenditures than nonhospice users. Regression results suggest that black non-Hispanic, Hispanic, and children of other races had $730 to $880 fewer hospice expenditures than Whites. Higher hospice expenditures ($970) were associated with longer enrollment spans. CONCLUSIONS: Descriptive analyses suggest that there are differences between pediatric hospice and nonhospice users. Minority race/ethnicities, as well as shortened Medicaid enrollment spans, are both associated with decreased hospice expenditures. Information from this study can be used to develop interventions aimed at increasing the prevalence of and reducing inequalities in hospice care.

Effect of a pediatric palliative care program on nurses' referral preferences.

PURPOSE: Florida was the first state to develop and implement a publicly funded pediatric palliative care program, which provides supportive care services to children and families from the point of diagnosis onward. Nurses employed by the Florida Department of Health, Children's Medical Services Network (CMSN) play an important role in this program as they are charged with identifying children with life-limiting illnesses in their caseloads for referral to the program. This study aims to estimate the differtences in referral preferences of nurses who work in Partners in Care: Together for Kids (PIC:TFK) program areas versus nurses who work in non-PIC:TFK areas. METHODS: Mail and Web-based surveys were conducted with 279 nurses, 141 of whom work in a PIC:TFK site and 138 did not. RESULTS: Results of the multivariate analyses suggest that few significant differences exist in the nurse's preferences to refer children to pediatric palliative care; however, there were significant differences in the preferred timing of referral. Nurses who work in an PIC:TFK area were 3.7 to 10.4 times as likely as nurses who do not work in a PIC:TFK area to refer children prior to the end of life. CONCLUSION: Our study provides evidence that nurses who have experience with a pediatric palliative care program are more likely to refer children to programs before the end of life. While our study results are encouraging, they also suggest that as the PIC:TFK program expands nurse training will be essential for equitable and appropriate referrals across a diverse set of illnesses.

Partners in care: together for kids: Florida's model of pediatric palliative care.

BACKGROUND: Many children with life-limiting illnesses in the United States could benefit from pediatric palliative care. However, national, state, and local barriers exist that hinder provision. One national barrier is the Medicare hospice reimbursement regulation that limits the provision of government subsidized hospice care to the final 6 months of life. In response to the critical need to provide palliative care earlier in children's illnesses, Florida became the first state to develop and implement an innovative model of care that provides services from the point of diagnosis onward, thereby waiving the 6-month reimbursement rule. In July 2005, the Partners in Care: Together for Kids program began. The program relies on partnerships between state-employed care coordinators who identify the children for possible enrollment and hospice staff who provide home and community-based services. OBJECTIVE: Our objective was to describe Florida's experiences in designing, implementing, and operating the program. DESIGN: Surveys were conducted with parents, hospices, and state agencies. Enrollment trends were identified using administrative data. RESULTS: As of January 2008, 468 children have been enrolled in the program. Approximately 85% of parents report they are satisfied with the program and 95% of parents would recommend the program. CONCLUSION: Florida's program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Florida's experiences will help guide other states and health plans that desire to implement a similar model of care.