Healthcare Transition Research: Access to Care

Access to care for youth with special health care needs in the transition to adulthood.

Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R.  Department of Pediatrics, David Geffen School of Medicine, University of California-Los Angeles, Los Angeles, California 90024, USA.  J Adolesc Health. 2008 Jul;43(1):23-9. Epub 2008 Apr 25.  Comment in: J Adolesc Health. 2008 Jul;43(1):6-7.

PURPOSE: To describe access to care and identify factors associated with access for low-income young adults who aged out of a public program for children with special health care needs (CSHCN).

METHODS: This was a cross-sectional survey of graduates of the Title V CSHCN program in one California county. Subjects were 77 graduates (55% female) aged 21-24 years with ongoing health care needs. Measures of access to care included having the following: a regular source of care for the main health condition; all needed care since turning 21 years of age; any delayed or forgone care in the past 6 months; health insurance; and continual insurance since turning age 21. Individuals lacking any one access measure were defined as experiencing an adverse transition event.

RESULTS: Of the subjects, 24% lacked a usual source of health care, 27% had gone without some needed health care since turning 21, and 39% had delayed needed care. Although 10% of respondents were uninsured at the time of the survey; 40% had a gap in insurance coverage since turning age 21. Overall, 65% reported at least one adverse transition event affecting access to care. Factors associated with experiencing no adverse transition event were receiving Supplemental Security Income (SSI, p = .007), having received special education services (p = .003), and having been born with the main health condition (p = .013).

CONCLUSIONS: Insurance gaps and delayed care are prevalent among these low-income young adults despite ongoing health problems. Greater transition support might improve access by linking them with a usual source of care, identifying insurance options, and encouraging regular use of care.



Access to health care for young adults with disabling chronic conditions.

Callahan ST, Cooper WO.  Division of Adolescent Medicine and Behavioral Science, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN 37232, USA.  Arch Pediatr Adolesc Med. 2006 Feb;160(2):178-82.

OBJECTIVE: To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition.

DESIGN AND SETTING: We analyzed data from the National Health Interview Survey from 1999 to 2002. We present bivariate analysis and multiple logistic regression of reported health care access barriers in the United States stratified by health insurance status.

PARTICIPANTS: The study population included 1109 survey respondents with and 22 481 without disabling chronic conditions, aged 19 to 29 years. MAIN OUTCOME MEASURES: Delayed or unmet health needs owing to cost, no contact with a health professional in the prior year, and no usual source of care. RESULTS: Thirty-five percent of respondents with and 15% without disabling chronic conditions reported an unmet health care need owing to cost (P< .001). Uninsurance rates for young adults with and without disabling chronic conditions were similar (26% vs 28%, respectively), and uninsurance was significantly associated with unmet health care needs. More than two thirds of uninsured respondents with a disabling chronic condition reported an unmet health need and 45% reported no usual source of care. After adjusting for sociodemographic factors, uninsured young adults with disabling chronic conditions had 8 times greater odds of reporting unmet health care needs and 6 times greater odds of having no usual source of care relative to insured respondents with disabling chronic conditions.

CONCLUSIONS: Despite increasing attention to issues of health care transition for young adults with disabling chronic conditions, this study suggests that uninsurance is as common among these young adults as nondisabled peers and is significantly associated with health care access barriers in this population.



Caring for an underserved population: Helping pediatric patients with disabilities transition to adulthood.

Milbrath C.  Gillette Children’s Specialty Healthcare, St. Paul, Minnesota, USA.  Creat Nurs. 2008;14(2):66-9.

Improving the processes to assist adolescent patients in their transition into the adult health care community reveals the challenges encountered by adults with disabilities. A service gap between pediatric care providers and adult care providers is bridged by a program providing direct care, education, and advocacy.



Continuity of health insurance coverage among young adults with disabilities.

Callahan ST, Cooper WO.  Division of Adolescent Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA.  Pediatrics. 2007 Jun;119(6):1175-80.

OBJECTIVES: Although considered critical to facilitate the successful transition from pediatric to adult health care, the continuity of insurance coverage for young adults with disabilities as they make the transition to adulthood has not been well characterized. The purpose of this work was to compare the continuity of insurance coverage reported by a nationally representative sample of young adults 16 to 25 years old with and without disabilities during a consecutive 36-month period.

METHODS: We performed secondary analysis of data from the 2001 Survey of Income Program and Participation. Data for the survey were collected at 4-month intervals from February 2001 through January 2004 for 5170 young adults. Subjects with disabilities were those who reported limitations in activities of daily living or work, used assistive devices, and/or had learning disabilities, mental retardation, or other mental disorders. The primary outcome was uninsurance defined for each study month in which there was no coverage by private, public, or military programs. We present bivariate analyses of the months of uninsurance according to disability status using longitudinal weights and design-effect adjustments to account for the complex sample design.

RESULTS: The sample consisted of 599 subjects with and 4571 without reported disabilities, representing 3,970,000 and 30,800,000 young adults in the United States, respectively. At study entry, 22% of the young adults with disabilities were uninsured. During the 36-month follow-up period, 56% of the young adults with disability reported gaps in insurance coverage with a mean of 15 months of uninsurance. The proportion of uninsured subjects did not significantly differ by disability status.

CONCLUSIONS: The majority of young adults with disabilities reported gaps in insurance coverage, and many were uninsured for a substantial portion of the study period. As an increasing number of children with special health care needs make the transition to adulthood, improving the continuity of health insurance coverage for this population warrants specific attention.



A critical appraisal of literature reviews about the transition to adulthood for youth with disabilities.

Stewart D, Stavness C, King G, Antle B, Law M.  CanChild Centre for Childhood Disability Research, McMaster University, School of Rehabilitation Science, Hamilton, Ontario, Canada.  Phys Occup Ther Pediatr. 2006;26(4):5-24.

A critical appraisal of five review articles on the transition to adulthood for youth with disabilities was conducted to identify evidence about (1) the factors that help or hinder the transition process, and (2) “what’s working” in transition services. The appraisal identified a number of important “success” factors and elements of service delivery that are worthy of consideration by service providers and researchers. These include the need for skill development of youth with disabilities, environmental supports, and an individualized approach to service delivery. All of the reviews identified the need for more evidence to support the implementation and evaluation of best practice models/approaches that address the complex issue of the transition from paediatric to adult services for youth with disabilities.


Health, education, work, and independence of young adults with disabilities.

Blomquist KB.  Healthy & Ready to Work National Center, Kentucky Commission for Children with Special Health Care Needs. Orthop Nurs. 2006 May-Jun;25(3):168-87.

PURPOSE: Healthy People 2010, the U.S. government’s goal for a healthier nation, calls for improved data collection to understand the health status of relatively small population groups, such as young adults with disabilities. This study looks at the transition outcomes of graduates of pediatric systems of care for children with disabilities and chronic conditions.

METHODS: Young adult graduates of a state program for children with special healthcare needs and a specialty children’s hospital were sent a mail survey that focused on their healthcare access and use, insurance status, health behaviors and perceptions, education, work, and markers of independent living. The survey was based on the National Longitudinal Survey of Youth, Behavioral Risk Factor Surveillance System, the U.S. Census and other surveys done by the state and hospital programs. Experts in healthcare and school-to-work transition of youth with special needs, health and labor economists, independent living center counselors, program administrators, nurses, social workers, and physicians offered ideas on various versions of the instrument that were piloted on youth before mailing to graduates. A follow-up mailing was sent to all those who did not respond to the first mailing. Results from the surveys of these young people with special healthcare needs are compared with data on typical young adults to determine the disparities.

SAMPLE: Mail surveys were sent to all patients aged 18 years and older at the time of their discharge in the preceding fiscal (state program) or calendar (children’s hospital) year. The response rate was 51%. Ninety-one percent of the respondents were Whites and 61% were women, with a median age of 21.1 years; 69% reported independence in activities of daily living.

RESULTS AND DISCUSSION/CLINICAL RESULTS: Eighty percent of graduates reported having a usual source of care, but 42% used the emergency room compared with 25% of typical young adults. Twenty-nine percent had no health insurance and only 11% had insurance through their work. Only 44% of respondents were working compared with 56% of all 19 year olds and 72% of 18-29 year olds in studies of typical youth; 67% of those not working wanted to work. One great concern is the 26% who are not working, in school, or at home with children. Nurses working with children, families, and young adults can use the information to improve pediatric and adult healthcare systems and collaborate with educational, independent living, and workforce development agencies to improve transition to adult roles and responsibilities for young people with disabilities.



Implementing community-based systems of services for children and youths with special health care needs: how well are we doing?

McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW.

Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland, USA.  Pediatrics. 2004 May;113(5 Suppl):1538-44.

OBJECTIVE: To provide a baseline measure of the proportion of US children who meet the Maternal and Child Health Bureau’s core outcomes for children with special health care needs (CSHCN). Those core outcomes include the following: 1) families of CSHCN will partner in decision making and will be satisfied with the services that they receive; 2) CSHCN will receive coordinated, ongoing comprehensive care within a medical home; 3) families of CSHCN will have adequate private and/or public insurance to pay for the services that they need; 4) children will be screened early and continuously for special health care needs; 5) community-based service systems will be organized so that families can use them easily; and 6) youths with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence.

METHODS: A national household survey was conducted using telephone interviews. We analyzed data on 38,866 CSHCN included in the 2001 National Survey of CSHCN and 13,579 children included in the 2001 National Health Interview Survey. We assessed the proportion of US children who met each of the 6 core outcomes for CSHCN using data from 2 surveys.

RESULTS: Success rates ranged from 6% (the core outcome on successful transition to adulthood) to 74% (the core outcome on organization of the service system). For 5 of the 6 core outcomes, success rates exceeded 50%.

CONCLUSION: Our results indicate that, for the most part, the United States is well positioned to meet the 6 core outcomes. However, much more work lies ahead before success can be claimed. This is especially true for the core outcome on transition to adulthood, for which only 6% of children in the target population are now meeting this goal.



Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices.

McLaughlin SE, Diener-West M, Indurkhya A, Rubin H, Heckmann R, Boyle MP.

Robert Wood Johnson Clinical Scholars Program, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.  Pediatrics. 2008 May;121(5):e1160-6.

OBJECTIVES: More than 500,000 adolescents with special health care needs age into adulthood each year in the United States, and there is growing recognition of the need for support of their transition to adult-oriented health care. Because of improved survival, cystic fibrosis has experienced this increasing transition need, and cystic fibrosis policy leaders responded by mandating the transition of adults with cystic fibrosis to adult-focused cystic fibrosis care programs by 2000. The primary objective of this study was to characterize in detail recent transition practices at US cystic fibrosis programs, to identify areas for improvement and to serve as a model for other diseases. A secondary objective of this study was to develop and validate a survey for formal assessment of transition practices.

METHODS: A 105-question survey on key aspects of transition was administered to cystic fibrosis care team members from all 195 US Cystic Fibrosis Care programs. Rates of adherence to recommended components of transition care were measured. RESULTS: A total of 448 surveys were obtained from 170 (87%) of 195 cystic fibrosis programs. Although transfer of care occurs at a median age of 19 years, initial discussion of transition does not occur until a median age of 17 years, limiting time to foster self-care skills. Only half of programs consistently perform a transition readiness assessment, 28% of centers offer visits focused on transition, and <10% have a written list of desirable self-management skills.
CONCLUSIONS: There is significant variability in transition support provided to young adults with cystic fibrosis, but there are simple steps that may lead to more consistent delivery of transition services. Methods of assessment and lessons learned from transitioning young adults at US cystic fibrosis programs may serve to improve transition for individuals with other childhood diseases.


Perspectives of patients with cystic fibrosis on preventive counseling and transition to adult care.

Zack J, Jacobs CP, Keenan PM, Harney K, Woods ER, Colin AA, Emans SJ.

Division of Adolescent Medicine, Children’s Hospital Boston and Harvard Medical School, Boston, Massachusetts 02115, USA.  Pediatr Pulmonol. 2003 Nov;36(5):376-83.

Comment in:  Pediatr Pulmonol. 2003 Nov;36(5):363-5.

The purpose of this study was to investigate how adolescents and adults with cystic fibrosis (CF) view preventive counseling and their transition to adult-centered care within a children’s hospital. Thirty-two patients >/=16 years old diagnosed with CF were recruited from a pediatric tertiary care setting. During face-to-face interviews, patients were asked 27 structured questions and completed a 30-item self-administered questionnaire on preventive counseling by healthcare providers and on transition issues. The median age of patients was 25.5 years (range, 16-43 years); 69% of patients identified a pulmonologist as their “main doctor,” even though 78% had a primary care provider. Participants felt that 13-16 years of age was the best time for them to begin spending time alone with their main doctor. Less than half of the participants recalled receiving preventive counseling during the previous 12 months, and more patients wanted to discuss issues than actually did. Qualitative data emphasized the importance of independence in making decisions in healthcare and establishing relationships with providers, and many patients did not desire to transfer care to an adult hospital. Participants identified adult-focused services such as inpatient rooms, discussion groups, work options, and social service support that would enhance care. In conclusion, the majority of adolescent/young adult patients with CF receiving care in a pediatric institution reported satisfaction with their healthcare. However, patients identified preventive issues that they desired to be more regularly addressed, starting in early adolescence, and changes in the delivery of services to enhance transition to adult-oriented care. This study underscored the understanding of the integration of transition planning into the facilitation of healthcare decision-making by the adolescent in issues of self-care, sexuality, education, and finances. Future initiatives to enhance the care of patients with CF should provide training of pulmonologists in preventive care and increased attention to helping patients utilize appropriate primary-care services during the adult years. In addition, prospective studies are needed to compare outcomes of CF patients who have transitioned and transferred to adult hospitals and those transitioning to adult-oriented services in a pediatric institution.



State and national estimates of insurance coverage and health care utilization for adolescents with chronic conditions from the National Survey of Children’s Health, 2003.

Okumura MJ, McPheeters ML, Davis MM.  Child Health Evaluation and Research Unit, Division of General Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.  J Adolesc Health. 2007 Oct;41(4):343-9. Epub 2007 Jul 12.  Comment in:  J Adolesc Health. 2007 Oct;41(4):319-20.

PURPOSE: To examine health and insurance characteristics of adolescents with special health care needs (ASHCN), at state and federal levels.

METHODS: We used the National Survey of Children’s Health 2003, a nationally representative sample of children in the United States, to study adolescents 14-17 years of age. We present descriptive statistics and regression analyses of adolescents with and without special health care needs, regarding measures of health care use and insurance coverage.

RESULTS: Approximately 22% of adolescents 14-17 years old have a special health care need. On average, ASHCN have one more annual office visit per year than their non-SHCN peers (p < .001). ASHCN report three times the rate of unmet medical needs compared to their non-SHCN peers (p < .001), despite higher rates of insurance coverage (94% vs. 88%, p < .001). Overall, 26.9% of ASHCN have public coverage. Nationally, more than half of those ASHCN with public coverage report incomes above 100% of the federal poverty level (FPL), which puts them at risk for losing coverage when they age into adulthood. Across states, proportions of ASHCN on public coverage and with incomes > 100% FPL range from 3.2% to 37.5%.

CONCLUSIONS: One in six ASHCN currently has public coverage with household income that would make them ineligible by income criteria for continuing public coverage as adults. It is imperative to examine insurance continuity and corresponding health outcomes for ASHCN as they transition from child to adult health care settings, and to evaluate options for policy interventions that can sustain health care coverage for this vulnerable population.



Transition of adolescents with special health care needs: review and analysis of the literature.

Betz CL.  USC UCEDD at Childrens Hospital, Los Angeles, Los Angeles, CA, USA.  Issues Compr Pediatr Nurs. 2004 Jul-Sep;27(3):179-241.

A review and analysis of 43 transition studies published from 1982 through 2003 was conducted. The studies reviewed represent the diverse purposes of international researchers for examining transition issues and questions. Findings of this literature review indicate that transition research is in early stages of development. A number of limitations were associated with these studies, including the lack of theoretical frameworks, the use of valid and reliable instruments, and research designs lacking adequate controls. Future research studies are needed that overcome the design limitations of past investigations.


Transition to adulthood in spina bifida: changing roles and expectations.

Mukherjee S.  Pediatric and Adolescent Rehabilitation Medicine, Rehabilitation Institute of Chicago and Children’s Memorial Hospital Spina Bifida Clinic, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.  ScientificWorldJournal. 2007 Nov 26;7:1890-5.

Survival to adulthood for people with Spina Bifida now exceeds 85% due to improvements in medical and surgical management. Rates remain lower than expected for community participation, healthy lifestyle choices, employment and independent living. The importance of transition programming to help adolescents with disabilities prepare for adult life roles is now understood. Literature currently is mainly conceptual or descriptive, but informs the process of developing transition program models. The need for competent and effective adult care providers is discussed. Both the transition to adulthood and the transfer of care to adult care clinics are important and distinct components of spina bifida lifespan care.



What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida.

Binks JA, Barden WS, Burke TA, Young NL.  Laurentian University, Sudbury, ON, Canada.  Arch Phys Med Rehabil. 2007 Aug;88(8):1064-73.

OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to identify barriers, to outline key elements, to review empirical studies, and to make clinical and research recommendations.

DATA SOURCES: We searched Medline and CINAHL databases from 1990 to 2006 using the key words: transition, health care transition, pediatric health care, adult health care, health care access, health care use, chronic illness, special health care needs, and physical disability. The resulting studies were reviewed with a specific focus on clinical transition for persons with CP and SB, and were supplemented with key information from other diagnostic groups.

STUDY SELECTION: All studies meeting the inclusion criteria were included.

DATA EXTRACTION: Each article classified according to 5 criteria: methodology, diagnostic group, country of study, age group, and sample size.

DATA SYNTHESIS: We identified 149 articles: 54 discussion, 21 case series, 28 database or register, 25 qualitative, and 34 survey articles (some included multiple methods). We identified 5 key elements that support a positive transition to adult-centered health care: preparation, flexible timing, care coordination, transition clinic visits, and interested adult-centered health care providers. There was, however, limited empirical evidence to support the impact of these elements.

CONCLUSIONS: This review summarizes key factors that must be considered to support this critical clinical transition and sets the foundation for future research. It is time to apply prospective study designs to evaluate transition interventions and determine long-term health outcomes.