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Transitioning Children with Chronic Diseases to Adult Care« Back to Volume 22, Issue 4, December 2006 - Table of Contents Given advances in health care, children affected by chronic life-threatening conditions are now growing into adulthood; thus, prompting the need for transition from pediatric to adult care settings. Transitioning involves more than a referral from the pediatric specialist to one who cares for adults. Questions include who should lead/be responsible for the transition, at what age/developmental stage should this be initiated, and how may compensation for these services be obtained. In their commentary, Freed and Hudson reviewed policy statements/guidelines, case reports, research, literature reviews, and commentaries; they summarized current knowledge and practices regarding transitioning children with chronic diseases to adult care. Major themes identified included the scope of and funding for transitional services. Extant literature emphasizes that in addition to facilitating the medical management of the condition from the pediatric specialist to an adult care specialist, important aspects of the transition involve increasing patient autonomy as developmentally appropriate. The healthcare professional’s role is thought to include providing medical care and education for the patient and family, coordinating the transition, and assisting the patient in locating and identifying needed services (medical and insurance). This role may extend beyond the physician and incorporate others. Given the educational, vocational, and social services needs of this population, auxiliary staff with specialized knowledge in these areas is advised. Several transitional models (eg, “Medical Home,” disease-specific, subspecialty, adolescent health, and primary care) have been described; however, limited access to pediatric and adult providers and funding pose substantial barriers to their establishment. Additionally, few outcomes studies have been conducted; the current literature consists of limited (ie, small-n) studies which pose difficulties in generalizing beyond the condition and patient sample in each study. While there is no system currently in place to assure successful transition, several ideas have been proposed on what would work well/best, but there is little empirical data to demonstrate effectiveness. Freed and Hudson call for more evidence of the basic concept that transitioning from pediatric to adult-centered care is actually beneficial as a way to address concerns about the process. However, that is not to say it would be better to continue providing care for adult patients in pediatric settings, as there is literature to suggest that “adult” issues (eg, sexuality, substance use, etc) are addressed more often in an adult-care setting than in pediatrics. Editor’s CommentTransitioning patients, who have been cared for through childhood and adolescence, presents familiar challenges: who in one’s local adult-care community is adequately familiar with the conditions, and sufficiently interested in the broader range of health-related outcomes, to competently care for young adult patients with a history of chronic conditions? It is recognized that “transition” involves far more than the transferring of the “medical” aspects of care. Throughout the years of caring for young patients with chronic conditions, attention is frequently directed toward the education, vocation, and psychosocial aspects of our patients’ lives and their families. Is an abrupt change in the quality of interactions in the best interests of our patients in whom we have personally, and the healthcare system more generally, invested so much? Freed and Hudson’s review makes a particularly important point; there is as yet no evidence in support of guidelines or suggestions designed to facilitate the transitioning of health care. The call for evidence that special attention in transitioning patients with childhood conditions to adult-centered care is beneficial could fuel strategic change in this area. Without such research and evidence of benefit, policy statements in favor of the practice may continue to be neglected. David E. Sandberg, PhD
« Back to Volume 22, Issue 4, December 2006 - Table of Contents
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Volume 24 Number 1
May 2008
www.GGHjournal.com
ISSN 1932-9032
