Providers' Perspectives and Beliefs Regarding Transition to Adult Care for Adolescents with Sickle Cell Disease

Abstract

Until recently, few children with chronic illnesses such as sickle cell disease (SCD) lived past late adolescence. Substantial reductions in mortality mean a growing number of adolescents with SCD reach adulthood. Consensus among researchers and health care providers (HCP) from multiple disciplines is that critical attention to and more empirical research on the transition from pediatric to adult care is needed. We address the following questions: (1) How do pediatric and adult providers demonstrate involvement in transition? (2) What is expected of adolescents when they move to adult care? and (3) Do providers think there is a need for a systematic transition program? A cross-sectional, multi-format survey research study utilizing open-ended and forced-choice questions was conducted to compare responses between pediatric and adult providers from multiple disciplines. Data were collected from 227 HCP in three waves. Significant bivariate results (p < 0.05) reflected differing opinions regarding transition expectations and program need, especially among female providers, those practicing in urban areas, and providers who treat both adolescent and adult clients in comparison with their counterparts. Discussion includes implications for program development, social service and public health practice, and future research.

How Adult Specialists Deal with the Principles of a Successful Transition

“…Contrary to our results, Telfair et al [15] found that female providers were significantly more likely to demonstrate transition. However, in their study of primary care pediatricians, Burke et al [28] also found that age, gender, and practice setting were not associated to the experiences of the pediatricians in their sample.…”

“…Nevertheless, the literature on the domain is limited [4]: few studies exploring the opinions of adolescents and their families have been published [5][6][7][8][9][10], and research on the opinion of health professionals [6,11,12] is scarce, mostly referring to the field of pediatrics, and based on small samples. The few studies focusing on the adult physicians' point of view regarding the care of young adults with childhood chronic illness are based on samples of general internists [13] or specialists in single diseases [14,15].…”

Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

“…8,9 The result is that many pediatricians, youth, and families have found a limited availability of adult providers with whom to arrange a smooth transition of care. [10][11][12][13][14] In addition, evidence indicates that many adult providers feel unprepared to care for young adults with complex chronic conditions. In some cases, there is no identified adult primary care or specialty provider to whom care can be transitioned.…”

Transitioning children with chronic diseases to adult care: Current knowledge, practices, and directions

“…7 Another article comparing providers who care for patients with sickle cell disease found that of the many potential health care providers, nurse practitioners were more likely to provide services associated with transitioning care. 8 It is unclear as to whether this is also true for additional diseases or conditions, although other articles cite nurses as being in the best position to successfully coordinate transition efforts. 7,9 Articles addressing the concerns of providers suggest that pediatricians have apprehensions regarding the care their former patients may receive in an adult care setting.…”