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Purpose: Survivors of childhood cancer require life-long outpatient healthcare, which may be impacted by health insurance. This study sought to understand survivors' utilization of outpatient healthcare provider services., Methods: The study examined cross-sectional survey data using an age-stratified sample from the Childhood Cancer Survivor Study of self-reported annual use of outpatient services. Multivariable logistic regression analyses were used to identify risk factors associated with utilization of services., Results: Six hundred ninety-eight survivors were surveyed, median age 36.3 years (range 22.2-62.6), median time from diagnosis 28.8 years (range 23.1-41.7). Almost all (93%) of survivors had at least one outpatient visit during the previous year; 81.3% of these visits were with a primary care providers (PCP), 54.5% were with specialty care physicians, 30.3% were with nurse practitioner/physician's assistants (NP/PA), and 14.2% were with survivorship clinic providers. Survivors with severe to life-threatening chronic health conditions had greater odds of utilizing a specialty care physician (OR = 5.15, 95% CI 2.89-9.17) or a survivorship clinic (OR = 2.93, 95% CI 1.18-7.26) than those with no chronic health conditions. Having health insurance increased the likelihood of seeking care from NP/PA (private, OR = 2.76, 95% CI 1.37-5.58; public, OR = 2.09, 95% CI 0.85-5.11), PCP (private, OR = 7.82, 95% CI 3.80-13.10; public, OR = 7.24, 95% CI 2.75-19.05), and specialty care (private, OR = 2.96, 95% CI 1.48-5.94; public, OR = 2.93, 95% CI 1.26-6.84) compared to without insurance., Conclusion: Most childhood cancer survivors received outpatient care from a PCP, but a minority received care from a survivorship clinic provider. Having health insurance increased the likelihood of outpatient care., Implications for Cancer Survivors: Targeted interventions in the primary care setting may improve risk-based, survivor-focused care for this vulnerable population.

Purpose: Youth with special health care needs (YSHCN) increasingly live into adulthood, and approximately 500,000 U.S. youth transition from pediatric to adult health care systems annually. Through a systematic literature review, we sought to (1) determine adult outcomes for YSHCN who have no special transition interventions and (2) identify evidence for strategies that lead to better outcomes, in particular, access to adult health care., Methods: We searched the medical, nursing, psychology, and social science literature and reviewed selected articles' reference lists. Transition experts also recommended relevant articles. Search criteria included health conditions, transition-related activities, and health care and related outcomes. We selected English-language articles published from 1986 to 2010, with an abstract, description of transition-related interventions (objective 2), and posttransition outcomes. Investigators abstracted study design, population, sample size, description of intervention, data collection methods, and findings., Results: The search yielded 3,370 articles, of which 15 met study criteria. Although many YSHCN appear to make the transition to adult health providers successfully, some experience serious gaps in outcomes; those with more complex conditions or with conditions affecting the nervous system appear to have less good transitions. Some evidence supports introducing YSHCN to adult providers before leaving the pediatric system; one study supports using care coordinators to improve outcomes., Conclusions: Evidence regarding programs to facilitate transition for YSHCN is inconclusive. Weak evidence suggests that meeting adult providers before transfer may facilitate posttransition access to care. We recommend additional studies with strong research designs to guide best practice in preparing YSHCN for adulthood., (Copyright © 2012 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To estimate generalist, pediatric subspecialist, and any subspecialist use by Medicaid-enrolled children with chronic conditions and to determine the correlates of use., Methods: We analyzed Medicaid claims data collected from 1989 to 1992 from 4 states for 57 328 children and adolescents with 11 chronic conditions. We calculated annual rates of generalist, subspecialist, and pediatric subspecialist use. We used logistic regression to determine the association of demographics, urban residence, and case-mix (Adjusted Clinical Groups) with the use of relevant pediatric and any subspecialist care., Results: Most children with chronic conditions had visits to generalists (range per condition: 78%-90% for children with Supplemental Security Income [SSI] and 85%-94% for children without SSI) during the year studied. Fewer children visited any relevant subspecialists (24%-59% for children with SSI and 13%-56% for children without SSI) or relevant pediatric subspecialists (10%-53% for children with SSI and 3%-37% for children without SSI). In general, children who were more likely to use pediatric subspecialists were younger, lived in urban areas, were white (only significant for non-SSI children), and had higher Adjusted Clinical Groups scores. Use of any subspecialists followed a similar pattern except that urban residence is statistically significant only for children with SSI and the youngest age group does not differ from the oldest age group for children without SSI., Conclusions: Children who had chronic conditions and were enrolled in Medicaid received a majority of their care from generalist physicians. For most conditions, a majority of children did not receive any relevant subspecialty care during the year and many of these children did not receive care form providers with pediatric-specific training.

Objective: To determine the relative growth of types of chronic health conditions among children and adolescents receiving Supplemental Security Income (SSI) benefits before and after major SSI program changes, including changes in definitions of childhood disability and outreach to identify eligible children., Design: Retrospective analysis of Medicaid claims from California, Georgia, Michigan, and Tennessee., Participants: All children (aged < or = 21 years) newly enrolled in SSI programs in these states from July 1989 (n=21 222) to June 1992 (n=38 789)., Methods: Medicaid data indicate eligibility status and diagnoses for services rendered. For children newly enrolled before (time 1, July 1989 to June 1990), during (time 2, July 1990 to June 1991), and after (time 3, July 1991 to June 1992) the program changes, we used claims for the first 6 months of enrollment to determine rates of chronic conditions in general and rates of asthma, attention-deficit/hyperactivity disorder (ADHD), and mental retardation specifically. We also followed up time 1 enrollees during the study period to determine the likelihood of a chronic condition claim at any time., Main Outcome Measure: Presence of claims for chronic conditions., Results: New SSI enrollees almost doubled during the study period. Increasing numbers of new enrollees had chronic condition claims in their first 6 months (from 29% to 36%); 58% of time 1 enrollees had such claims during any study month. Rates of chronic physical conditions other than asthma increased 14% (time 1 to time 3); asthma rates increased 73%. Rates of mental health conditions other than mental retardation and ADHD increased 63%; rates of mental retardation decreased 29%, while rates of ADHD increased almost 3-fold., Conclusions: The number of children with chronic conditions receiving SSI benefits experienced rapid growth from 1989 to 1992. Growth was particularly marked for children with diagnoses of asthma and ADHD.

This paper reviews opportunities to monitor managed care for children and adolescents with chronic conditions and considers how well the Health Plan Employer Data and Information Set, version 3.0 (HEDIS 3.0), assesses care for these children. We propose four steps to strengthen the applicability of HEDIS to children with chronic conditions: (1) develop methods of identifying and monitoring groups of children with chronic conditions; (2) report HEDIS indicators for these children separately from those for other children; (3) develop and implement consumer and provider surveys that elicit information specific to these populations; and (4) develop specific structure, process, and outcomes indicators for children with chronic conditions.

Objective: Children with chronic health conditions face special issues in their interactions with managed care. These children often require additional and more varied services than do other children. Managed care plans increasingly include these children, especially with the growth of Medicaid managed care. This article examines the special issues facing children with chronic conditions and develops strategies for monitoring their care in managed care settings., Methods: The project staff conducted an extensive review of the research and policy literature related to managed care and the special needs of families with children with chronic conditions. The project also reviewed current and proposed plans of federal, state, and private groups for monitoring and, working with parents and other outside groups, identified key issues to consider in developing monitoring plans., Results: The relative rarity of many childhood conditions and the complex interactions among child, family, and community over time make assessment of their care difficult. We describe these child and family characteristics, outline essential features and domains for monitoring systems, and describe population-based and plan-based monitoring systems to assess managed care for these children and their families., Conclusions: Monitoring for children with chronic conditions in managed care arrangements will require public health agencies and health providers to define populations systematically, assess across a variety of conditions, and monitor several domains central to the health of these families.

Objective: Children with chronic illnesses and disabilities are increasingly enrolling in managed care arrangements. Yet, the rapid expansion of managed care has unknown consequences for children with chronic conditions and disabilities. As managed care is likely to become the predominant mode of medical practice for children with chronic health problems, information gained from a thorough assessment of existing managed care models could be helpful in indicating adjustments and modifications that could result in improved outcomes for this population. the purpose of this article is to outline a new strategy for collecting needed information on the effects of managed care on children with chronic health problems., Methods: We reviewed the literature on the effects of managed care on children with chronic conditions and disabilities. We identified key domains relevant to monitoring and evaluating managed care for this population., Results: Two research approaches can provide helpful information for assessing the effects of managed care on children with chronic conditions. First, a monitoring strategy could be pursued in which enrollment trends in managed care, enrollee perceptions of access and satisfaction with care, and other general indicators of outcomes would be tracked over time using inexpensive and rapid turnaround data sources. Second, an evaluative strategy could be pursued using experimental or quasiexperimental designs, in which outcomes across a variety of domains for children with chronic conditions in managed care are compared with: (a) outcomes for the same children before enrollment in managed care; or (b) outcomes for similar children remaining in traditional fee-for-service settings. Evaluation and monitoring strategies should focus on outcomes in a number of domains including: (1) access to care; (2) utilization of services; (3) quality of care; (4) satisfaction with care; (5) expenditures for care; (6) health outcomes; and (7) family impact., Conclusion: Assessing outcomes that result from enrollment in managed care for children with chronic health problems presents a formidable challenge. The research strategy outlined in this article presents one approach to meeting that challenge. The monitoring and evaluation strategies described here would require commitment of additional resources on the part of government, private foundations, and/or health plans. Given the paucity of existing information and the stakes for children with chronic conditions and their families, investment of added resources in a comprehensive monitoring and evaluation strategy is essential.