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 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.

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.

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.

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.

Factors affecting decisional conflict for parents with children enrolled in a paediatric palliative care programme.

UNLABELLED: Palliative care programmes have the potential to affect several health outcomes for children and families, including reducing decisional conflict. METHOD: A telephone survey was conducted with 140 parents of children with life-limiting illnesses enrolled in Florida's publicly funded paediatric palliative care programme (Partners in Care: Together for Kids). RESULTS: Multivariate results suggest that parents with less than a high school education had decisional conflict scores (DCS) that were 13 points higher (p<0.05) than parents with some college education. In addition, parents who indicated that they had recently made a decision for their children had DCS scores that were 7 points higher (p<0.05) than parents who indicated they had not. DISCUSSION: Our findings suggest that paediatric palliative care programmes should treat parents with lower educational levels as being particularly vulnerable and should consider allocating additional resources to them when a decision for their children is imminent.

A longitudinal study of a pediatric practice-based versus an agency-based model of care coordination for children and youth with special health care needs.

BACKGROUND: Care coordination has been shown to improve the quality of care for children and youth with special health care needs (CYSHCN). However, there are different models for structuring care coordination in relation to the medical home and most Title V agencies use an agency-based model of care coordination. No studies have prospectively compared a practice-based care coordination model to a Title V agency-based care coordination model. OBJECTIVE: Report the results of a prospective cohort study comparing a practice-based nurse care coordinator model with Title V agency-based care coordination model. DESIGN/METHODS: Three pediatric practices received the intervention, placement of a nurse care coordinator onsite within the practice, along with training and quality improvement on the principles of the medical home. Three practices continued to rely on agency-based care coordination services. CYSHCN in the practices were identified, interviewed at baseline, and re-interviewed after 18 months. We interviewed 262 families/children at baseline and 144 families/children (76 in the intervention and 68 in the comparison group) at 18 months. Families rated the quality of services they received from the care coordinator and the pediatric practice, and their experience of barriers to services for their CYSHCN. RESULTS: Families in the practice-based care coordination group were more likely to report improvement in their experience with the care coordinator (P = 0.02), fewer barriers to needed services (P = 0.003), higher overall satisfaction with care coordination (P = 0.03), and better treatment by office staff (P = 0.04). CONCLUSIONS: We found that for families of CYSHCN, practice-based care coordination in the medical home led to increased satisfaction with the quality of care they received and a reduction of barriers to care. The practice-based care coordination model is utilized by a minority of State Title V agencies and should be considered as a potentially more effective model than the agency-based approach.

Paediatric nurses' knowledge of palliative care in Florida: a quantitative study.

Nurses routinely identify and suggest patients to physicians for possible referral to palliative care and discuss potential referrals with families. Knowledge of palliative care is essential for nurses, especially in paediatrics, where palliative care is less common than with adults. This study uses data from surveys from 279 paediatric nurses across Florida, USA. The palliative care quiz for nursing (PCQN) and the knowledge about hospice quiz (KHQ) were used. On the KHQ at least one-half of the nurses answered six out of seven questions correctly. On the PCQN at least one-half of the nurses answered 12 out of 20 questions correctly. Multivariate analyses show that receiving formal palliative care training and having worked at a hospice were associated with greater knowledge. Paediatric nurses in Florida have a good level of baseline knowledge of palliative care. Nurses' training programs should be used to increase knowledge, which may subsequently lead to more referrals.

A family-centered, community-based system of services for children and youth with special health care needs.

OBJECTIVE: To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services. DESIGN: Comprehensive literature review of systems of services and consensus panel organized to review and refine the definition. SETTING: Policy research group and advisors at multiple sites. PARTICIPANTS: Policy researchers, content experts on CYSHCN, family representatives, and state program directors. OUTCOME: Definition of a system of services for CYSHCN. RESULTS: This article defines a system of services for CYSHCN as a family-centered network of community-based services designed to promote the healthy development and well-being of these children and their families. The definition can guide discussion among policy makers, practitioners, state programs, researchers, and families for implementing the "community-based systems of services" contained in Title V of the Social Security Act. Critical characteristics of a system include coordination of child and family services, effective communication among providers and the family, family partnership in care provision, and flexibility. CONCLUSIONS: This definition provides a conceptual model that can help measurement development and assessment of how well systems work and achieve their goals. Currently available performance objectives for the provision of care for CYSHCN and national surveys of child health could be modified to assess systems of services in general.

Health status and health-related quality of life in a pediatric palliative care program.

BACKGROUND: Children with life-threatening illnesses have unique physical and psychosocial needs that pediatric palliative care programs can address. Integrated programs strive to address these needs from the point of diagnosis through death, if needed, at the same time that curative care is provided. To better understand the variation in these needs, we assessed the health status and health-related quality of life (HRQOL) of children enrolled in an integrated pediatric palliative care program. METHODS: A telephone survey was conducted with 98 parents whose children were enrolled in an integrated pediatric palliative care program in Florida. The Health Utilities Index (HUI) system was used to assess health status and HRQOL. RESULTS: HUI2 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to self-care, mobility, and sensation, and the least impairment with emotion. HUI3 attribute levels show that children have the greatest impairment with moderate-to-severe burdens related to ambulation and cognition and the least impairment with hearing and emotional functioning. Mean overall HUI2 and HUI3 utility scores are 0.37 and 0.15, respectively. CONCLUSION: Children with life-threatening illnesses in our sample had a high level of morbidity compared with those found in other HUI studies of children with acute or chronic health conditions. Not only do our results highlight severely impaired HRQOL, they also demonstrate the wide variety of health states and needs for children in integrated palliative care programs. This information can help develop strategies to encourage more providers to participate in integrated pediatric palliative care programs.

Spirituality of parents of children in palliative care.

AIMS: To determine the spirituality of parents whose children have life-limiting illnesses and to determine the factors associated with parents' spirituality. METHODS: Telephone survey of 129 parents whose children were enrolled in a pediatric palliative care program in Florida. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp) scale was used to measure parents' spirituality. The Health Utilities Index (HUI) was used to measure health status. RESULTS: Parents' average score on the FACIT-Sp meaning/peace subscale was 24.1 out of 32, and 12.5 out of 16 for the faith subscale. Parents' average total FACIT-Sp score was 36.6 of 48. Multivariate analyses show that parental black non-Hispanic race, "other" race, being married, as well as children's higher vision and hearing health status were associated with higher spirituality, as measured by the total FACIT-Sp. Two parent household and children's higher speech health status were associated with lower FACIT-Sp scores. CONCLUSIONS: Our results suggest that non-white parents have greater faith-based and overall spirituality than white parents. Spiritual assessments should be conducted for all parents as differing supportive services may be needed. The palliative care team should ensure that parents' spirituality is being incorporated, as appropriate, into their children's routine care.

Age group differences in healthcare access for people with disabilities: are young adults at increased risk?

PURPOSE: The purpose of this study was to quantify and describe the population of young adults with disability in Florida and to assess correlates of healthcare access in this population in contrast with adults belonging to middle and older age groups. METHODS: This study analyzed data of 36,704 respondents obtained from the 2007 Florida Behavioral Risk Factor Surveillance System. A test for homogeneity of the risk difference across the three age groups was conducted using inverse weighting to adjust for confounding and selection bias. RESULTS: The adjusted model for risk difference of not being able to see a doctor in the past 12 months because of cost was significantly heterogeneous across age groups (χ(2)(2df)F value = 12.40, p < .01). The risk difference between population of young adults with disability and their age peers decreased significantly across the groups. The risk difference was 15.5% for those aged 18-29, 11.9% for those aged 30-64, and 2.1% for those aged ≥65. CONCLUSIONS: This article quantifies the differences in risk and access to health care between young adults with and without disability, using population-based data. It provides indirect evidence of the widely held belief that there is a problem in healthcare transition in the United States warranting continued investigation and intervention.

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.

Music therapy in an integrated pediatric palliative care program.

National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida's Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents' experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P < .05) versus parents whose children did not use music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.

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.