Portal de Periódicos da CAPES

Transition from Pediatric to Adult Medical Care

2005; Elsevier BV; Volume: 12; Issue: 4 Linguagem: Inglês

10.1053/j.ackd.2005.07.004

1548-5609

Jennifer LoCasale‐Crouch, Bethany Johnson,

Healthcare Policy and Management

Because of recent medical advances, the number of children with chronic medical conditions who survive into adulthood has increased. The transition of care from pediatric to adult specialists and subspecialists has been rarely studied, yet it is an important aspect of care. To define issues in the pediatric patients at the University of Virginia, survey data was collected from adult nephrologists in the state. A total of 105 surveys were mailed to adult providers in Virginia. From 62 responses, 60% of adult providers did not feel completely comfortable caring for a patient with a pediatric-specific diagnosis. To efficiently receive information on new patients, adult providers preferred an abbreviated medical summary or phone call from pediatric providers. Additionally, interviews were conducted with 6 pediatric patients and their families. Patients reported a good grasp of their diagnosis and treatment, expressed an interest in learning chronic-illness coping strategies, and expressed interest in obtaining community-resource information. This study reiterated the need for additional insurance options for this at-risk population. Development of individualized transition plans and transition services are recommended to support young adult patients with chronic medical conditions as they transition into adulthood. Because of recent medical advances, the number of children with chronic medical conditions who survive into adulthood has increased. The transition of care from pediatric to adult specialists and subspecialists has been rarely studied, yet it is an important aspect of care. To define issues in the pediatric patients at the University of Virginia, survey data was collected from adult nephrologists in the state. A total of 105 surveys were mailed to adult providers in Virginia. From 62 responses, 60% of adult providers did not feel completely comfortable caring for a patient with a pediatric-specific diagnosis. To efficiently receive information on new patients, adult providers preferred an abbreviated medical summary or phone call from pediatric providers. Additionally, interviews were conducted with 6 pediatric patients and their families. Patients reported a good grasp of their diagnosis and treatment, expressed an interest in learning chronic-illness coping strategies, and expressed interest in obtaining community-resource information. This study reiterated the need for additional insurance options for this at-risk population. Development of individualized transition plans and transition services are recommended to support young adult patients with chronic medical conditions as they transition into adulthood. Before the 1970s and 1980s, few children with chronic medical conditions survived into adulthood. Because of significant medical advances, more than 90% of children born with a chronic or disabling health condition are expected to live longer than 20 years, which raises questions about the ability of the existing medical, social, and educational systems to manage their needs.1Blum R. Transition to adult health care Setting the stage.J Adolesc Health. 1995; 17: 3-5Abstract Full Text PDF PubMed Scopus (204) Google Scholar, 2Gortmaker S.L. Suppenfield W. Chronic childhood disorders Prevalence and impact.Pediatr Clin North Am. 1984; 31: 3-18PubMed Google Scholar These children are seriously affected by the stress and responsibilities of managing a chronic illness while also facing the prospect of a shortened lifespan.3Soliday E. Kool B.S. Lande M.B. Psychosocial adjustment in children with kidney disease.J Pediatr Psychol. 2000; 25: 93-103Crossref PubMed Scopus (83) Google Scholar As the importance of peers, body image, and recognition of self as different from others appear in adolescence, adjustment issues become more prominent for those with chronic illnesses. The Center for Disease Control and Prevention4Center for Disease Control and Prevention: Health Resources and Services Administration. Healthy People 2010Educational and Community-Based Programs. http://www.healthypeople.gov/document/HTML/Volume1/07Ed. Accessed November 9, 2004Google Scholar found that youth with chronic health needs showed higher rates of depression and anxiety than their peers and often experienced other risk factors, such as poverty and low academic performance. These factors frequently result in significant medical noncompliance, subsequent deterioration of physical and mental health, and difficulty in school. In addition to the psychosocial implications for the young adult patient, the lack of coordinated systems to transition into adulthood has a significant financial impact on society. Compared with 80% of the general population, only 52% of individuals with chronic medical conditions are employed5White P. Access to health care Health insurance considerations for young adults with special health care needs/disabilities.Pediatrics. 2002; 110: 1328-1335PubMed Google Scholar; 62% of those working earn less than 200% of the federal poverty level.6Fishman E. Aging out of coverage Young adults with special health needs.Health Aff. 2001; 20: 254-266Crossref PubMed Scopus (45) Google Scholar Low employment rates and income are typically accompanied by high uninsured rates. Without employment and resources for health care, this already stressed group faces the continued cycle of poverty and depression. Growing recognition of the special needs of youth with chronic illness has led to national initiatives to focus interest on the transition issue. The most recent initiative by the Center for Disease Control and Prevention, known as Healthy People 2010, calls for all physicians who provide primary or subspecialty care to young people with special health-care needs to (1) understand the rationale for transition from child-oriented to adult-oriented health care; (2) have the knowledge and skills to facilitate that process; and (3) know if, how, and/or when transfer of care is indicated. The initiative includes the goal that young people with special health-care needs will receive the services required to make necessary transitions to all aspects of adult life, including health care, work, and independent living.7Healthy People 2010. Available at http://www.cdc.gov/nchs/hphome.htm#Healthy%20People%202010 Accessed November 2, 2004.Google Scholar While this goal is important, no mandate or guidelines for implementation exist. Consequently, only an estimated 5.8% of 13-year-old to 17-year-old patients met these core outcomes from a medical and vocational perspective.8McPherson M. Weissman G. Strickland B.B. et al.Implementing community-based systems of serviced for children and youth with special health care needs How well are we doing?.Pediatrics. 2004; 113: 1538-1544PubMed Google Scholar Transition services must provide a broad spectrum of care that addresses physical, emotional, developmental, and social issues.9Scal P. Transition for youth with chronic conditions Primary care physicians’ approaches.Pediatrics. 2002; 110: 1315-1321PubMed Google Scholar Various studies have shown that systematic approaches that facilitate the transition from pediatric to adult care have positive benefits.10Betz C. Facilitating the transition of adolescences with chronic medical conditions from pediatric to adult health care and community settings.Issues Compr Pediatr Nurs. 1998; 21: 97-115Crossref PubMed Scopus (41) Google Scholar Pediatric providers should view transitioning as a continuum, with the movement toward adult-oriented systems as the expected outcome of pediatric care.11Reiss J. Gibson R. Health care transition Destinations unknown.Pediatrics. 2002; 110: 1307-1314PubMed Google Scholar In 2002, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians-American Society of Internal Medicine identified critical first steps to ensure a successful transition to adult-oriented health care for youth with special health-care needs (Table 1). Table 2 shows the recommended steps to help facilitate this transition.11Reiss J. Gibson R. Health care transition Destinations unknown.Pediatrics. 2002; 110: 1307-1314PubMed Google Scholar Several barriers to providing a seamless transition from pediatric medical care to adult medical care exist. These barriers are summarized in Table 3.Table 1Transition Steps1. Ensure that all youth have an identified health professional who attends to the challenges of transition and assumes responsibility for health care, care coordination, and future health care.2. Identify the core knowledge and skills required to provide appropriate health-care transition services.3. Maintain an up-to-date medical summary that is portable and accessible.4. Create a written health-care transition plan by age 14 with the individual and the family that is reviewed and updated annually.5. Provide primary and preventative care to all adolescents.6. Ensure affordable, continuous health insurance coverage for all youth. Open table in a new tab Table 2Recommend Steps for TransitionHave an orientation that is future focused.Anticipate change and develop a flexible plan.Allow the youth to be a responsible member of the team as early as possible.Develop a transition plan.Celebrate transitions as they occur.Develop formal and informal relationships with adult providers. Open table in a new tab Table 3Barriers to Transition.• Patients cared for by pediatric providers into adulthood• Patients lack of primary-care provider• Patient/family hesitant to change provider• Difficulty terminating life-long relationships and concern about building new relationships with provider• Patient’s developmental stage• Scarcity of adult providers• High numbers of uninsured youth with chronic illness• No financial support for transition servicesData from1Blum R. Transition to adult health care Setting the stage.J Adolesc Health. 1995; 17: 3-5Abstract Full Text PDF PubMed Scopus (204) Google Scholar, 7Healthy People 2010. Available at http://www.cdc.gov/nchs/hphome.htm#Healthy%20People%202010 Accessed November 2, 2004.Google Scholar, 12Carroll G. Massarelli E. Opzoomer A. et al.Adolescents with chronic disease.J Adolesc Health Care. 1983; 4: 261-265Abstract Full Text PDF PubMed Scopus (64) Google Scholar Open table in a new tab Data from1Blum R. Transition to adult health care Setting the stage.J Adolesc Health. 1995; 17: 3-5Abstract Full Text PDF PubMed Scopus (204) Google Scholar, 7Healthy People 2010. Available at http://www.cdc.gov/nchs/hphome.htm#Healthy%20People%202010 Accessed November 2, 2004.Google Scholar, 12Carroll G. Massarelli E. Opzoomer A. et al.Adolescents with chronic disease.J Adolesc Health Care. 1983; 4: 261-265Abstract Full Text PDF PubMed Scopus (64) Google Scholar Despite the decline of morbidity rates from other diseases, kidney failure is on the rise. Most kidney failure in children is from a congenital cause, and, therefore, youth with kidney disease have often been cared for by a pediatric nephrologist from a very early age. Impaired growth and development are common in children with kidney failure. Research on pediatric patients with kidney disease shows a higher incidence of learning disabilities, attention deficit disorder, and emotional and behavioral issues than among their peers.4Center for Disease Control and Prevention: Health Resources and Services Administration. Healthy People 2010Educational and Community-Based Programs. http://www.healthypeople.gov/document/HTML/Volume1/07Ed. Accessed November 9, 2004Google Scholar Because of the limited number of publications on the transition from pediatric to adult nephrology care, we surveyed adult nephrologists throughout Virginia. We asked questions about their practices in relation to patients transitioned from pediatric nephrology care. We also conducted extensive interviews with 6 pediatric patients and their families that focused on their transition to adult nephrology. Sixty-two of 105 surveys were returned from the adult nephrology providers. The majority of providers care for a varied patient population (85% care for patients on peritoneal dialysis, 95% care for patients on hemodialysis, 88% care for patients who have been transplanted, and 98% care for general nephrology patients). All providers care for patients with private insurance, 93% accept Medicare, and 92% accept Medicaid, and 82% of providers accept patients without medical insurance. If a patient misses an appointment, 7% of the providers do not follow up, but 84% call a patient to reschedule. Only 34% of adult providers have nurse practitioners working in their clinics, 66% have access to social workers, 69% have dietitians, and 71% employ registered nurses. Most providers (76%) spent more than 30 minutes with a patient on the first office visit, and 51% found the interview with the patient to be the most helpful component in learning the patient’s medical history. Forty-three percent of providers found the entire medical record helpful when receiving a new patient, whereas 62% found a one-page medical summary more helpful. All adult providers allowed other individuals in the examination room during the visit. Forty percent of physicians felt comfortable providing care for a patient with a pediatric-specific disease, 22% felt somewhat comfortable, and 38% did not feel comfortable. The major medical issues that were the focus of visits were kidney function (97%), tolerability of medications (72%), quality of life (62%), cardiovascular disease (59%), preventative medicine (44%), and cancer screening (5%). Several themes emerged from the interviews with young adult chronic kidney disease patients and their families. The first theme was that of varying definitions of successful transitions to the community. Patients, their families, and members of the medical team identified different components of importance in viewing transitions as successful. All of the patients and families interviewed were comfortable with their level of knowledge regarding their medical condition and the appropriate treatment. Most of the young adult patients felt they could use more information about preventative health behaviors, specific coping strategies, adaptive measures in stressful situations, and use of community resources. Interviewed patients and their families were currently satisfied with their vocational status goals and level of independence. Three patients were successfully employed: 2 worked full time, and 1 worked part time to maintain his eligibility for social security income. Two other patients were currently enrolled in post–high school education: 1 at a four-year university and 1 at a local community college. The last patient was in the process of completing high school and had plans to attend community college. Of the 6 patients interviewed, 3 had moved out of their parents’ house and were living independently, and 1 was currently residing in a group home but was working toward independent living. Although all of these young adult patients were successful in the educational and social arenas, 4 of the 6 patients had increased anxiety about transferring their care to an adult medical provider. A second theme arose regarding coordination of information across settings and unclear role expectations of the medical system, schools, and communities in addressing and supporting transition needs. Communication and coordination varied widely across the systems involved. For example, how information is relayed (in writing, over the phone) to the family by practitioners within the same practice followed no set protocol. Consequently, patients and families reported feeling that they often had to prompt providers to ensure that all needed communication occurred. Although patients and families recognized their role in advocating their needs and ensuring that they were met, they also felt they would benefit from more consistent plans of care. The third theme that became apparent was the variability of special-education services for these patients. Only half of the group was identified and received special-education services. Among the 3 patients who were enrolled in special-education services, the level of support and involvement in transition planning varied significantly. For example, 1 patient received support in moving into the community, starting college, and securing financial support, whereas another patient recalls no clear planning process. Although school systems mandate transition planning for children who receive special-education services, those services only seem to be, at best, minimally supporting the youth seen in the clinic. The final theme that emerged concerned the complexity of the insurance system that the patients and their families faced. They felt overwhelmed by the issues surrounding their insurance coverage. Two of the patients continued to be covered by their parents’ private insurance and were eligible for continued coverage until the age of 25. One of the patients had employer-paid insurance that was supplemental to the coverage provided by her parents’ insurance. The remaining 3 patients had insurance coverage by Virginia Medicaid: 1 patient was covered through the department of social services, and 2 patients were in the process of their SSI redetermination. All of the patients had been transplanted more than 3 years ago and, therefore, were no longer eligible for Medicare. The most striking issue elicited from the survey was that 60% of the adult providers did not feel comfortable or were only somewhat comfortable providing care for a patient with pediatric-specific renal disease. As more children with kidney disease survive into adulthood, the population of youth being cared for by adult nephrologists will increase. This issue emphasizes the need for increased training of providers in transition planning. Furthermore, the need also exists for expansion of the education of adult providers regarding pediatric-specific diagnoses through joint conferences or mandatory pediatric rotations. Another important issue derived from the adult provider survey and the interviews is the complexity of insurance coverage. Only 82% of adult providers reported accepting patients without insurance. Young adults are the largest group without health insurance and many lose their social security insurance and Medicaid at the mandatory redetermination age of 18 years. As adult providers are overwhelmed by the quantity of patients, individuals without health care insurance are likely to “fall through the cracks” and become lost to follow-up. Adolescents and their families need assistance in planning for insurance coverage, starting at an early age, and insurance coverage provided to this at-risk population should be evaluated to determine ways to increase insurability. According to the survey data, the most helpful sources of information for adult providers when evaluating a new patient were the entire medical record, a one-page medical summary, and the interview with the patient. Pediatric providers can help their patients summarize their medical history by providing them with an updated abbreviated portable medical summary. Knowing the importance of the patient interview in the adult setting should prompt pediatric providers to begin preparing the young adult patient as the lead person during the medical interview while the patient is in the pediatric clinic. Additionally, asking the parent to leave the examination room during the interview may help the young adult patient learn how to interact and communicate effectively with providers during the clinic visit. Although practitioners often feel some families have a better grasp of their diagnosis and treatment regimens than do others, all of the patients and families interviewed described themselves as knowledgeable about their specific medical conditions and its treatment. Rather than focusing on their medical treatment, our patients were more interested in learning about coping strategies, techniques for dealing with stress, and their community resources. Although busy medical practices often place issues such as coping techniques and stress management on the “back burner,” more attention must be given to helping our patients develop these lifelong skills. Despite the varied vocational and independent-living goals of our patients and their families, all of the individuals interviewed were currently satisfied with their educational status and living situations. These issues emphasize that individual definition of successful transitions may be varied, and, therefore, each patient deserves an individualized transition plan that must be developed with involvement of the patient and his or her family. Because the schools and communities are important resources for youth, an exploration to further assess how best to use these resources to meet the needs of the young adult with chronic illness would be beneficial. Since the pediatric nephrology division at the University of Virginia began looking at the issues that surround the transition from pediatric to adult medical care, several visible changes have occurred. Families now receive a newly created summary on insurance plans and the available insurance coverage options for young adults that includes definitions of many of the terms often used in insurance plans. Additionally, a one-page medical summary was developed for all patients with chronic kidney disease or end-stage renal disease that includes patients’ medical history, surgical history, and current medication list. The summary is updated at each clinic appointment and sent to the patient and primary care physician. It has improved communication and has also streamlined the transfer of medical care. Issues regarding the transition of patients are discussed at weekly multidisciplinary team meetings. The team consists of nephrologists, nurse practitioner, social worker, and an educational consultation. We discuss the transition of medical care with patients at an earlier age. In addition, the structure of clinic visits has changed. Adolescents are expected to learn their medications, and the interview is directed at them as opposed to their family members. Issues of preventive medicine, including sex education and recreational drug and alcohol use, are more openly discussed. On the basis of individual patient needs and current level of readiness, each patient deserves an individualized transition plan that includes skills needed to care for his or her chronic medical condition, vocational counseling, and health promotion/risk prevention. The multidisciplinary team’s goal is to construct and measure a model for a smooth transition to adult nephrology providers, with no unpredicted medical complications during the transition time. In addition, UVA is working toward a multidisciplinary joint pediatric/adult transition clinic with the assistance of adult-provider colleagues. The team envisions initiating this process with younger children and reviewing the transition planning and outcomes, with the hope that early preparation will help facilitate a smooth transition to adult medical services.