Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that eventually they will require care that focuses on adult health issues. Providers in the United States and around the world are recognizing the need for coordinated processes to transition adolescents and young adults with chronic conditions to adult health care. These models rely on the participation and input of the adolescent, his or her family, and pediatric and adult health professionals. This paper distinguishes medical transition from medical transfer; discusses potential barriers to transition; examines new initiatives to develop and study transition models; and reviews federal legislation influencing health care transitions.
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.
This study evaluates the factors associated with initiation of services in the Boston HAPPENS Program, which is a collaborative network of care consisting of multiservice outreach agencies, community health centers and hospitals, for human immunodeficiency virus (HIV)-positive and hard to reach youth who are 12-24 years old. The program served 2116 youth who were 19.8 +/- 2.9 years old; 64% female; 45% youth of color; 16% gay/lesbian, bisexual, or undecided; and 10% homeless or runaway. At first contact with the program, 56% received outreach services; and 91% received a health intervention. Among those receiving a health intervention, 55% had HIV counseling and testing services, 49% medical care, 24% case management, and 9% mental health services. HIV-positive youth needed more contacts before a first medical visit than those who were HIV-negative or untested (p < 0.001). Different kinds of service sites reached different populations of at-risk youth. Logistic regression modeling showed that for young women, older age, lesbian-bisexual orientation, substance use, high-risk sexual behaviours, and receiving outreach services at first contact were independent predictors of initiation of services at outreach agencies; however, unprotected sex with males, and pregnancy were associated with a greater likelihood of care at hospitals or community health centers. For young men, older age, Asian/other ethnicity, and substance abuse were associated with care at outreach agencies; however, positive HIV status and unprotected sex with females were associated with care at hospitals or community health centers. Comprehensive networks of care offering a continuum of services and a variety of entry routes and types of care sites are needed to connect underserved youth to health care.
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