“It Was Bootstrap All the Way”: Exploring the Barriers and Facilitators to the Development of Non-Hematology Sickle Cell Disease Experts in the United States
Authors: Coyne Francis W , Terrell Deirdra R , Lang Valerie , Jenkins Ashley M , King Allison A. , Smith Wally R 
Published: December 2024

Background

There is a crisis of access to care for adults with sickle cell disease (SCD). A small number of non-hematologists have established themselves as SCD experts to fill this critical gap. We aimed to explore how these non-hematologist SCD experts (nhSCDe) designed and implemented their innovative paths of specialization using an implementation science framework. These data are critical to standardize scalable SCD training for future nhSCDe.

Methods

We conducted a descriptive qualitative study with nhSCDe to understand barriers and facilitators to their development. We purposively sampled nhSCDe (with internal, emergency, and family medicine backgrounds) who were and were not affiliated with SCD programs through professional networks and snowball sampling. A semi-structured interview guide was developed with the Consolidated Framework for Implementation Research (CFIR), which examines innovations across multiple domains: innovation, outer setting, inner setting, individuals, and implementation process. One-on-one interviews were conducted and a rapid deductive thematic analysis was used to identify themes.

Results

We completed 6 interviews (4 SCD center affiliated; 2 non-affiliated). Themes are underlined within each CFIR domain.

Innovation: Participants described differing contexts promoting skill development, including fellowship, identification by institutions, or independently developing skills to fill gaps in care.

“We took this on as an orphan kind of a project. There's nobody else that wanted these orphans. So we built an orphanage, and it was in... the division of general internal medicine, and we cared for them”

A key milestone in their development was recognition as a SCD expert by their peers.

Outer Setting: Participants identified the importance of the adult SCD expert community as a facilitator, sharing experiences of being embraced and supported by the community of national experts.

“The whole community just really took us in and taught us how to do this work. And they continue to do that for us... it's been wonderful.”

Participants noted a positive role of professional organizations and meetings, which facilitated connections with experts and the evolving field.

Inner Setting: Local mentorship from pediatric hematology, generalists, and transfusion medicine facilitated skill development. Participants also noted the importance of local champions, who may not be hematologists, to support their careers. A lack of interest and support from adult hematology was a barrier to development, often with lack of recognition.

“The attitude was: well, you're doing this interesting thing, but you know I'm a hematologist, so like, I probably know a lot more about this than you.”

Individuals: Participants noted that longitudinal support from role models and experts facilitated their growth. Mentors could be local or at another institution, but a longitudinal relationship was key, facilitating increased self-efficacy over time.

“I wound up starting to see the patients and every day after clinic basically like call...in a panic, and...go through the patients and ask them what to do.”

Implementation Process: Many participants recalled a bootstrap approach to professional development, having to develop their own curriculum as they practiced.

“There was no curriculum. There was no book on SCD...and so it was bootstrap all the way.”

We also noted that research only promoted the career development of those affiliated with SCD centers, but not unaffiliated participants. We explored the necessary components of non-hematologist training in SCD and their implementation. Participants identified that training must include pain management, transfusion medicine, and detailed understanding of multiorgan pathophysiology and disease modification. When discussing models of professional development, there was acknowledgement of multiple education models. One participant noted “I think the biggest thing is that you need exposure to patients,” with which most participants agreed.

Discussion

Longitudinal expert mentorship, a local champion, and the SCD expert community are paramount to the development of nhSCDe. For the first time, we provide insight into the barriers and facilitators of their growth and have begun to create a roadmap for future nhSCDe. This is a key first step to implementing high-quality professional development programs to improve access for adults with SCD.