Transition of care of youth with bone marrow failure conditions: Current practices, barriers, and burden- a survey of hematology-oncology providers in the US. Free

Introduction:

Adolescents and young adults (AYA) with bone marrow failure (BMF) experience illness at a time when they are gaining independence and developing individual identities. AYA patients strongly associate increased well-being with a consistent health care team and report a significant deterioration in overall health during the transition to adult care (TOC). Currently, TOC practices for AYAs with BMF vary across institutions in the US, and the barriers to optimal TOC remain unknown. Therefore, we designed a clinician survey to: (1) assess current TOC practices for AYAs with BMF across US institutions; (2) evaluate perceived structural and medical barriers to successful TOC; and (3) quantify the burden of TOC for AYAs with BMF.

Methods:

Pediatric and adult hematologists in the North American Pediatric Aplastic Anemia Consortium AYA research working group developed two surveys—one for pediatric providers and one for adult providers. Respondents were asked to estimate the burden of TOC by comparing the amount of work that is required and delays in completing TOC compared with the average patient in their practice. Potential barriers to transition were classified as patient-specific, disease-specific, and systemic barriers. Respondents rated the barriers using 3- or 5-point Likert scales assessing how often a barrier contributes to a failed TOC. The survey employed a mixed-methods approach and includes open-ended questions. This study was approved as an IRB exempt study by the University of Tennessee Health Science Center IRB.

Results:

A total of 29 pediatric providers and 10 adult providers responded to the survey: 28% were pediatric hematologists, 28% were pediatric hematologist-oncologists, and 7% were pediatric transplant physicians. Among adult physicians, the majority were hematologist-oncologists (50%). Fifty-five percent of respondents had practiced their specialty for more than 10 years, and 75% saw at least five patients with BMF each year. According to respondents, the most frequent transition destination for AYAs with BMF was an academic hematologist (59%), followed by a survivorship clinic (10%), a community hematologist–oncologist practice (17%), or unable to transition (14%). Only 10% reported having a structured BMF transition program. Half of TOCs were initiated when patients reached the maximum age for pediatric care at the respondent's institution, whereas fewer than 30% were initiated based on pre-established transition readiness criteria.

Among patient-specific barriers to TOC, the most frequently cited causes were psycho-social factors (40%), bond with the pediatric provider (35%), and patient unpreparedness for independent management of their condition (25%).Among systemic factors, the lack of a suitable adult provider transition partner was most frequently cited (55%). Among disease-specific factors, common causes included the rarity of pediatric-onset BMF conditions (52%) and delays in finding adult subspecialists (43%). Half of pediatric providers estimated that all BMF disorders require twice the amount of time needed for a typical patient in their practice to complete TOC. Among adult providers, the most commonly cited causes of failed TOC were the patient's bond with the pediatric provider (80%), patient unpreparedness for independent management of their condition (60%), and patient-specific psychosocial factors (60%). When asked their comfort level managing pediatric onset BMF conditions, more than 50% of adult providers surveyed stated they were somewhat or very comfortable managing the majority of BMF conditions.

Conclusion: In conclusion, our survey underscores the need for improved TOC processes for BMF patients, given the rarity and complexity of these conditions, limited patient preparedness, and insufficient availability of qualified adult specialists at the time of transition in the United States. Pediatric and adult providers agree to varying degrees on the most common factors contributing to failed TOCs. Most academic hematologists reported feeling comfortable managing pediatric-onset BMF disorders, although this should not be generalized beyond providers at academic institutions. We recognize that the lack of input from patients and adult community physicians is a limitation of our assessment of barriers to TOC and identify this as an area for future exploration.