Elizabeth Shenkman

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.

The Linkage between Pediatric Quality of Life and Health Conditions: Establishing Clinically Meaningful Cutoff Scores for the PedsQL

OBJECTIVE To link pediatric health-related quality of life (HRQOL) and health conditions by establishing clinically meaningful cutoff scores for an HRQOL instrument, the Pediatric Quality of Life Inventory (PedsQL). METHODS We conducted telephone interviews with 1745 parents whose children were between 2 and 18 years old and enrolled in the Florida KidCare program and Childrens Medical Services Network in 2006. Two anchors, the Children with Special Health Care Needs (CSHCN) Screener and the Clinical Risk Groups (CRGs), were used to identify children with special health-care needs or chronic conditions. We established cutoff scores for the PedsQLs physical, emotional, social, school, and total functioning using the areas under the curves (AUCs) to determine the discriminative property of the PedsQL referring to the anchors. RESULTS The discriminative property of the PedsQL was superior, especially in total functioning (AUC > 0.7), between children with special health-care needs (based on the CSHCN Screener) and with moderate and major chronic conditions (based on the CRGs) as compared to healthy children. For children <8 years, the recommended cutoff scores for using total functioning to identify CSHCN were 83, 79 for moderate, and 77 for major chronic conditions. For children ≥8 years, the cutoff scores were 78, 76, and 70, respectively. CONCLUSIONS Pediatric HRQOL varied with health conditions. Establishing cutoff scores for the PedsQLs total functioning is a valid and convenient means to potentially identify children with special health-care needs or chronic conditions. The cutoff scores can help clinicians to conduct further in-depth clinical assessments.

Association Between the Prevalence of Symptoms and Health-Related Quality of Life in Adult Survivors of Childhood Cancer: A Report From the St Jude Lifetime Cohort Study

PURPOSE We investigated the association between prevalence of symptoms and health-related quality of life (HRQOL) in adult survivors of childhood cancer enrolled in the St Jude Lifetime Cohort study. METHODS Eligibility criteria include childhood malignancy treated at St Jude, survival ≥ 10 years from diagnosis, and current age ≥ 18 years. Study participants were 1,667 survivors (response rate = 65%). Symptoms were self-reported by using a comprehensive health questionnaire and categorized into 12 classes: cardiac; pulmonary; motor/movement; pain in head; pain in back/neck; pain involving sites other than head, neck, and back; sensation abnormalities; disfigurement; learning/memory; anxiety; depression; and somatization. HRQOL was measured by using physical/mental component summary (PCS/MCS) and six domain scores of the Medical Outcomes Study 36-Item Short-Form Health Survey. Multivariable regression analysis was performed to investigate associations between symptom classes and HRQOL. Cumulative prevalence of symptom classes in relation to time from diagnosis was estimated. RESULTS Pain involving sites other than head, neck and back, and disfigurement represented the most frequent symptom classes, endorsed by 58.7% and 56.3% of survivors, respectively. Approximately 87% of survivors reported multiple symptom classes. Greater symptom prevalence was associated with poorer HRQOL. In multivariable analysis, symptom classes explained up to 60% of the variance in PCS and 56% of the variance in MCS; demographic and clinical variables explained up to 15% of the variance in PCS and 10% of the variance in MCS. Longer time since diagnosis was associated with higher cumulative prevalence in all symptom classes. CONCLUSION A large proportion of survivors suffered from many symptom classes, which was associated with HRQOL impairment.

Effect of prophylaxis on fungal infection and costs for high‐risk liver transplant recipients

We sought to determine whether the prophylactic use of amphotericin B products (conventional amphotericin B and liposomal amphotericin B) reduces the incidence of fungal infections in high‐risk liver transplant recipients, and if so, whether this lowers the cost of care. The study sample comprised 232 adult orthotopic liver transplants performed from 1994 to 2005 at a single center for patients classified as being at high risk for fungal infections. High‐risk patients who received transplants with a prophylaxis regimen of amphotericin B (n = 58 transplants) were compared with high‐risk patients who received no prophylaxis (n = 174 transplants). Fungal infections occurred in 3 transplants (5.17%) of those who received amphotericin B and 28 transplants (16.09%) in those without prophylaxis (P = 0.0432). Regression models were used to analyze fungal infection and costs for the 232 high‐risk transplants. Failure to offer prophylaxis conferred a 4‐fold greater risk of fungal infection (P = 0.046) compared with those who received amphotericin B. A fungal infection in a high‐risk recipient increased mean costs by 46.48%. The indirect effect of prophylaxis (operating through infection reduction) is estimated to reduce overall costs in high‐risk patients by 8.73%. Liver Transpl 13: 1743–1750, 2007.

Anti-inflammatory Medication Adherence, Healthcare Utilization and Expenditures Among Medicaid and Children's Health Insurance Program Enrollees with Asthma

AbstractBackground: Underuse of controller therapy among Medicaid-enrolled children is common and leads to more emergency department (ED) visits and hospitalizations. However, there is little evidence about the relationship between medication adherence, outcomes and costs once controller therapy is initiated. Objective: This study examined the relationship between adherence to two commonly prescribed anti-inflammatory medications, inhaled corticosteroids (ICS) and leukotriene inhibitors (LI), and healthcare utilization and expenditures among children enrolled in Medicaid and the Children’s Health Insurance Program in Florida and Texas in the US. Methods: The sample for this retrospective observational study consisted of 18456 children aged 2–18 years diagnosed with asthma, who had been continuously enrolled for 24 months during 2004–7 and were on monotherapy with ICS or LI. State administrative enrolment files were linked to medical claims data. Children were grouped into three adherence categories based on the percentage of days per year they had prescriptions filled (medication possession ratio). Bivariate and multivariable regression analyses that adjusted for the children’s demographic and health characteristics were used to examine the relationship between adherence and ED visits, hospitalizations, and expenditures. Results: Average adherence was 20% for ICS-treated children and 28% for LI-treated children. Children in the highest adherence category had lower odds of an ED visit than those in the lowest adherence category (p < 0.001). We did not detect a statistically significant relationship between adherence and hospitalizations; however, only 3.7% of children had an asthma-related hospitalization. Overall asthma care expenditures increased with greater medication adherence. Conclusions: Although greater adherence was associated with lower rates of ED visits, higher medication expenditures outweighed the savings. The overall low adherence rates suggest that quality improvement initiatives should continue to target adherence regardless of the class of medication used. However, low baseline hospitalization rates may leave little opportunity to significantly decrease costs through better disease management, without also decreasing medication costs.

Parent perceptions important for HPV vaccine initiation among low income adolescent girls.

OBJECTIVE The study aims were to assess the influence of provider recommendations on parental vaccine perceptions and identify the most potent parent vaccine perceptions for HPV vaccine series initiation considering provider recommendation strength. METHODS We administered a questionnaire and assessed HPV vaccine claims among a stratified-random sample of parents of 9-17 year old girls enrolled in Floridas Medicaid and the Childrens Health Insurance Program. Using multivariate analyses, we evaluated the associations between: (1) parent vaccine perceptions and provider recommendation strength, and (2) parent vaccine perceptions and HPV vaccine series initiation (≥1 vaccine claim or positive parental report) controlling for provider recommendation strength. RESULTS The majority of the 2422 participating parents agreed that the HPV vaccine was safe (61%), would not make girls more likely to have sex (69%), and prevented cervical cancer (71%). About half (44%) reported receiving a strong provider recommendation. Compared to parents without recommendations, parents with strong recommendations had 2 to 7 times higher odds of agreeing that: vaccines are safe, the HPV vaccine is safe, not concerned about side effects, and the vaccine prevents cervical cancer. Even when considering provider recommendation strength, HPV vaccine series initiation was more likely among girls of parents who agreed rather than disagreed that the HPV vaccine was safe [odds ratio (OR)=5.8, 95% confidence interval (CI)=3.1, 11.1], does not cause sex (OR=2.0, 95% CI=1.2, 3.4), prevents cervical cancer (OR=2.0, 95% CI=1.0, 3.4), and prevents HPV infections (OR=1.8, 95% CI=1.0, 3.0). CONCLUSIONS Parent concerns about HPV vaccine are similar to their concerns about other vaccines. Providers should focus HPV vaccine discussions with parents on vaccine safety and illness prevention.

Disparities in Human Papillomavirus Vaccine Series Initiation Among Adolescent Girls Enrolled in Florida Medicaid Programs, 2006–2008

PURPOSE To better understand the human papillomavirus (HPV) vaccine series initiation among 9-17-year-old female Medicaid beneficiaries in Florida programs between June 2006 and December 2008 (n = 237,015). METHODS Among the Florida Medicaid enrollees with itemized claims collected (non-managed care organization enrollees), we assessed the association between HPV vaccine series initiation (≥1 vaccine claim) and important demographic characteristics (age, race/ethnicity, program enrollment, area of residence, and length of enrollment). RESULTS Among 11-17-year-olds, vaccine initiation increased over time from <1% by December 2006 to nearly 19% by December 2008. By December 2008, HPV vaccine initiation increased with respect to age from 9 (1.6%) to 13 years (22.9%), remained relatively stable from ages 13 to 15 years (between 21% and 22%), and decreased among 16- (18.6%) and 17-year-olds (15.7%). Compared with girls in Pilot or Fee for Service programs, the girls in MediPass or Childrens Medical Service Network programs were more likely to have initiated the vaccine series. Within three of the four programs, Hispanics were more likely than non-Hispanic white and black girls to have initiated the vaccine series. CONCLUSIONS This study expands the understanding of HPV vaccine initiation to low-income adolescents eligible for free vaccine through the Federal Vaccine for Children program. Increased understanding of reasons for the observed differences, especially by program and race/ethnicity, will aid in developing interventions to improve HPV vaccine initiation.