Vanessa Madden

Pediatricians' Perceptions of and Preferred Timing for Pediatric Palliative Care

OBJECTIVES. This study investigates how pediatricians define palliative care and their preferences regarding the timing of referrals for children with life-limiting diseases. METHODS. A random sample of 800 pediatricians in Florida and California received mail and online surveys. Analyses included descriptive and multivariate regression analyses. RESULTS. Of all respondents (N = 303), 49.1% were female, 34.0% had been practicing for ≥20 years, 44.2% were members of a racial/ethnic minority, and 76.2% were in private practice. Pediatricians were divided in their definitions of palliative care; 41.9% defined it as hospice care, 31.9% offered alternative definitions, and 26.2% did not know. Although pediatricians overwhelmingly cited the need for many types of palliative care services, only 49.3% had ever referred patients to palliative care and 29.4% did not know whether local services existed. For 13 diseases that vary in life limitation, there was no consensus regarding the timing of referrals. Diversity across diseases predicted the most variation in referrals, whereas pediatrician characteristics did not. CONCLUSIONS. Despite recommendations to refer children to palliative care early in the course of illness, most pediatricians define palliative care as similar to hospice care and refer patients once curative therapy is no longer an option. Creating a more-practical definition of care, one that emphasizes an array of services throughout the course of an illness, as opposed to hospice care, may increase earlier palliative care referrals for children with life-limiting 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 childrens 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 Floridas 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 Floridas program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Floridas experiences will help guide other states and health plans that desire to implement a similar model of care.

Information seeking behaviors of parents whose children have life‐threatening illnesses

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.

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 childrens 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 Floridas 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 childrens 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 members 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 childrens pediatric palliative care programs.

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.

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.

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

Pediatric Palliative Care: Global Perspectives

110 000 and US

Health Status and Health-Related Quality of Life in a Pediatric Palliative Care Program

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.

Adolescents with life-threatening illnesses.

Palliative care has long been a model of care that focuses on both patients with life-limiting illnesses and their family members. This is especially true in pediatrics where parents, siblings, grandparents and others are affected by a child’s illness. Yet, provision of pediatric palliative care around the world is scant. There are of course many reasons for this such as finances, lack of trained professionals, and a lack of general awareness by the public or policymakers. Despite these barriers, and many others, many countries have found ways to provide this care and those countries are both resource-rich and resource-poor. It is important for these countries to share their stories, which include valuable information on how barriers were overcome and programs were developed and implemented. Only through information dissemination will countries with no programs be able to learn from others and to identify strategies that they can use to help advance the pediatric palliative care movement worldwide.