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.

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.

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.

PURPOSE:The goal of this study was to determine healthy adolescents' perceptions of cancer and fertility. A secondary goal of the study was to test items related to the development of a health-related quality-of-life tool with healthy control subjects to determine whether the participants shared a common understanding of the items and response options and to confirm face and content validity. METHODS:Four focus groups of two age-groups were held with healthy female adolescents: 12-14 years (N = 11) and 15-18 years (N = 14). RESULTS:Adolescents in both age-groups expressed significant concerns regarding potential infertility from cancer treatment, hereditary transmission, and the impact it would have on their future. Differences emerged in language preferences among older adolescents who preferred more open-ended statements. CONCLUSIONS:Fertility concerns and desires for future motherhood can be accurately assessed using the 10 statements tested, and clinicians should be made aware of the differences between younger and older adolescents to facilitate effective communication. This research suggests adolescents have predetermined expectations for becoming future parents, and their concerns about fertility and childbearing are present before becoming a patient.

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.

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.

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.

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.

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.

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.

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.

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.

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.