https://orcid.org/0000-0002-0724-7634
In this issue of Blood Advances, Guarino et al1 surveyed adult and pediatric sickle cell disease (SCD) providers to develop a standardized metric for a successful transfer of care from pediatric to adult sickle cell care. This metric will be useful for clinicians who care for these patients and critical for researchers who seek to improve transfer of care practice in this vulnerable period.
Today, 95% of children with SCD in the developed world will survive to adulthood. However, it is increasingly recognized that as patients with SCD become adolescents and young adults, they have more acute care presentations, have higher health care costs, and experience increased mortality rates.2-4 The transition from pediatric to adult care in SCD is a high-risk period in which good outpatient medical care is critical, yet many patients at this age do not establish regular care with an adult provider. There are numerous factors that make this transition particularly challenging, including lapses of care as young adults move from being cared for by pediatric to adult specialty care, lack of collaboration between adult and pediatric care providers, less system support in adult care programs, and health system barriers such as interruptions in health insurance when patients turn 18.5 Furthermore, patient-related factors such as a fear of a negative attitude and stigma from adult staff and patient neurocognitive decline may also pose as a barrier to a smooth transition.6,7 The improvement of structured transition programs is necessary to streamline the process and reduce adverse outcomes related to loss of care in transition.
Various initiatives and frameworks exist to guide the implementation of transition programs, and a growing body of research is dedicated to improving outcomes in the transition period. Despite this, until now there was no established metric to define a successful healthcare transition in SCD. Previous research on transition has evaluated multiple outcomes including improvement in patients SCD-related knowledge, emotions surrounding the transition process, and feasibility defined by number of visits completed with an adult care provider.8,9 However, as in any area of scientific research, heterogeneity in examined outcomes can make studies difficult to compare. A standardized metric agreed on by relevant stakeholders is essential to guide evidence-based research in this important area. Guarino et al identified this gap and addressed it by creating a metric to define transition success that will allow for a standardized assessment of transition outcomes.
The authors developed their standards by conducting a survey of the members of the National Alliance of Sickle Cell Center (NASCC), a diverse group of care providers from numerous sickle cell centers who convene regularly to streamline care in SCD and harmonize practice. NASCC affiliated centers were provided with a premeeting survey on current practices and voted on what should be considered “standard of care.” Standard of care was defined as practices that “clinicians must do to ensure safe and adequate care or where omission could lead to poor clinical outcomes.” After the initial vote members participated in an in-person meeting followed by a final vote. Consensus was achieved when 70% or more respondents responded affirmatively to a standard. Rand/UCLA Delphi Panel methodology was employed to reach a consensus on the definition of a successful transition. The group’s consensus standard to define successful transition and integration into adult care are listed here (see table).
Standards to define a successful transition from pediatric to adult sickle cell care
| Standard 1 | A successful transfer of care is defined as 2 visits with a comprehensive adult sickle cell program in the first year. Visits can be in person or via telemedicine. |
| Standard 2 | A successful integration into adult care, an essential component of transition of pediatric to adult-centered health care, is defined as completion of at least 50% of scheduled outpatient visits in the 5-year period after transfer of care and the patient identification of the adult center as their sickle cell medical home. |
| Standard 1 | A successful transfer of care is defined as 2 visits with a comprehensive adult sickle cell program in the first year. Visits can be in person or via telemedicine. |
| Standard 2 | A successful integration into adult care, an essential component of transition of pediatric to adult-centered health care, is defined as completion of at least 50% of scheduled outpatient visits in the 5-year period after transfer of care and the patient identification of the adult center as their sickle cell medical home. |
This standard metric will be of great value to clinicians and researchers who care for and examine people living with SCD as they transition from pediatric to adult care. However, definition of a successful transition was established by a panel of NASCC affiliate centers who care for patients with SCD, but did not include organizations of patients, caregivers, or other stakeholders. In 1 qualitative study, young adults living with SCD defined a successful transition as “gradually assuming responsibility of one’s own SCD care.”6 It would be interesting in the future to hear the perspectives of patients with SCD on the standards created by the authors. It is also important to note that this standard of a successful transition was based on a decision established by centers that treat patients in the United States. Because a vast majority of patients with SCD live outside of the United States, where transition age and practice can vary, it will be necessary to include consensus from providers from other countries before this standard can be applied to transition programs internationally. Although the creation of this standard is a critical step to move work in transitions forward, much more work remains to be done.
Guarino et al recognize that there is no standardized metric to define a successful transition and therefore present a much-needed standardized definition of a successful transfer of care and integration into adult care. Future research projects should include these standards to evaluate success of transfer of care and integration into adult practice. Furthermore, clinical programs can use these metrics to evaluate their own performance, to identify rates of successful transition, and identify areas for quality improvement. This is an exciting first step in improving the future of transition programs.
Conflict-of-interest disclosure: The authors declare no competing financial interests.
