Transition for Adolescents and Young Adults With Sickle Cell Disease in a US Midwest Urban Center: A Multi-level Perspective on Barriers, Facilitators, and Future Directions

Abstract

Background

Sickle cell disease (SCD), an inherited red blood cell disorder, primarily affects African Americans in the United States. Adolescents and young adults with SCD (AYA-SCD) are at risk of high morbidity and mortality when transitioning from pediatric to adult care. The goal of this qualitative study was to understand factors associated with optimal implementation of the AYA-SCD transition.

Methods

Participants were recruited from a large hospital system and the community. Interview guides included topics on access to primary and specialized care, beliefs and practices related to pain control, transition from pediatric to adult care, and patient experiences in the emergency department (ED). Data were coded and analyzed using an inductive thematic coding approach in combination with a deductive coding approach using domains from the Consolidated Framework for Implementation Research (CFIR).

Results

Fifty-nine participants, including twenty-one AYA-SCD from both the pediatric and adult clinics, seventeen caregivers, nine pediatric SCD providers, six adult SCD providers, and six ED providers, completed 11 focus groups and 5 semi-structured interviews. Results identified multiple factors within the domains of CFIR including the outer setting, inner setting, individual characteristics, and intervention characteristics. Results were incorporated into a transition framework to inform local practice improvement.

Conclusion

Our study highlights the importance of multi-level barriers and facilitators for AYA-SCD transition from pediatric to adult care. Future studies could use implementation science frameworks to understand local context and identify strategies and intervention characteristics to improve transition programming. These efforts will ultimately reduce health disparities and ensure health equity.

INTRODUCTION

Sickle cell disease (SCD) is a group of inherited red blood cell disorders affecting over 100,000 people, predominantly African Americans, in the United States [1, 2]. Persons living with SCD often suffer from debilitating pain, severe anemia, and end organ damage. The estimated economic burden of SCD is approximately $3 billion per year, with over half of the costs associated with in-patient care [3, 4]. In the past few decades, with improved interventions such as newborn screening, pneumococcal vaccination and penicillin prophylaxis, and use of hydroxyurea, over 95% of children with SCD live into adulthood [5]. However, the life expectancy of persons living with SCD is still about 20 to 30 years less than those without SCD [6, 7].

Mortality and quality-of-care improvements for adults with SCD are challenging due to the limited access or utilization of coordinated adult care. Adolescent and young adults with SCD (AYA-SCD) are especially at risk as they are transitioning from pediatric to adult care and experience more acute care utilization and increased mortality compared to others with SCD [1, 8, 9]. Previous literature has identified multiple barriers to effective pediatric to adult care transition for AYA-SCD, such as patients’ limited knowledge about the transition process, lack of self-management skills, and lack of structured transition programs [10-13].

As the majority of patients with SCD in the United States are African Americans, they face structural, institutional, and interpersonal racism, that interacts and exacerbates stigma associated with the disease condition and the needs of pain treatment [14, 15]. AYA-SCD are in a crucial stage to establish new patient-provider relationships. They may alter care-seeking behaviors based on their health care experiences and anticipated stigma in care-seeking [15]. As such, there is an urgent need to ensure AYA-SCD successfully transition from pediatric to adult care to improve treatment adherence, disease management, self-care, and ultimately reduce health disparities experienced by patients with SCD.

To improve health care transition for adolescents and young adults, the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians published a clinical report in 2011 with a healthcare transition-planning algorithm [16]. In 2018, this report was expanded to include an evidence-informed, structured transition process centered on the Six Core Elements of Health Care Transition, which defined the basic components of health care transition support [17]. A SCD-specific toolkit for the transition from pediatric to adult hematologic care to assess transition readiness and document SCD clinical summary was also included [17].

Implementing evidence-based guidelines in practice requires understanding of local needs and resources and adapting program models to fit within the implementation context [18, 19]. Implementation science is an emerging field that addresses the gap between current knowledge and practice to provide structured guidance and more rapid implementation of evidence-based interventions [20]. In 2016, the National Institutes of Health’s National Heart Lung and Blood Institute funded a Sickle Cell Disease Implementation Consortium (SCDIC) to incorporate Implementation Science frameworks and methods to improve care for patients with SCD. The SCDIC comprises eight academic sites and a data coordinating center [21]. To inform intervention design and implementation, SCDIC sites each performed a comprehensive needs assessment to understand barriers and facilitators in SCD care.

Informed by the AAP transition guideline and an implementation science framework, the goal of this project was to identify and understand the multilevel barriers and facilitators of transitioning care for AYA-SCD at one of the SCDIC participating sites to improve local practice.

METHODS

Design

In this qualitative study, AYA-SCD, their caregivers, pediatric and adult SCD providers participated in focus groups, and ED providers participated in interviews from 2016 to 2017.

Study Setting and Participants

The study is conducted by an urban academic university in the Midwest, which is a participating site of the SCDIC.

Patient participants were eligible if they were between ages 15 to 25 years, had any genotype of SCD, and received health services within the affiliated healthcare network of the academic university. Caregiver participants were eligible if they were caring for AYA-SCD. SCD providers included physicians, nurse practitioners, or clinic staff who provided medical care to patients with SCD who provided services within the affiliated healthcare network. Emergency department (ED) physicians were eligible if they were affiliated with the academic university or affiliated medical institutions and provided ED care. Non-English speakers were excluded from the study.

All participants were recruited using a convenience sampling approach. Patients, caregivers, and SCD providers were recruited from the pediatric and adult SCD clinics affiliated with the study university. ED physicians were recruited via a faculty and staff email listserv from the medical school and affiliated hospitals.

Data Collection and Interview Guides

The study was approved by the Institutional Review Board of the academic university. All participants provided informed consent or assent to participate. Demographics were collected from patients. Demographics were not collected for caregivers and providers in an effort to ensure anonymity.

The SCDIC expert investigators developed three semi-structured interview guides for patients and caregivers, SCD healthcare providers, and ED physicians. The guides addressed the following domains: access to primary and specialized care, beliefs and practices related to hydroxyurea treatment and pain control, the transition from pediatric to adult care, and patients’ experiences in the ED. The study investigators adapted these interview guides for this local needs assessment.

A co-investigator (CC) conducted focus groups and interviews until thematic saturation was reached. Each focus group lasted between 45 to 80 minutes. Each interview lasted between 20 to 40 minutes. All interviews and focus groups were conducted in a private space and were audio-recorded and transcribed verbatim. All participants were offered a $50 gift card for their participation.

Data Analysis

The research team used a combined inductive and deductive approach to code and analyze data. The deductive approach used domains from the Consolidated Framework for Implementation Research (CFIR) as a coding framework. CFIR is an overarching determinants framework identifying multilevel determinants that impact implementation and outcomes [22, 23]. It has been widely used to evaluate pre, post, and ongoing implementation processes across a wide variety of studies, settings, and units of analysis [24-26]. A leading coder (LL) with experience in implementation research created the codes using four CFIR domains: Intervention Characteristics, Outer Setting, Inner Setting, and Individual Characteristics. The fifth domain, Process, was not included in the codebook because it was related to the processes of the actual planning and implementation, which was beyond the scope of this needs assessment study.

The inductive approach entailed open coding to identify emerging themes from the transcriptions [27]. A team of graduate research assistants, led by the co-investigator (CC) and the leading coder (LL) developed the inductive codebook using four transcripts. The inductive codebook was then revised considering the addition of the deductive codebook to avoid duplicity of codes. The team met to compare codes, discuss definitions of each code until consensus was reached, grouped codes into categories and finalized the codebook.

Two research assistants (AB, ES) were paired with the leading coder (LL), and coded transcripts with the inductive codebook and deductive codebook separately. The leading coder cross-checked coding and discussed differences in coding with research assistants. Although inter-coder reliability was not calculated, the simplicity of the deductive codebook and the operational definitions of the inductive codes lead to high-level agreement and consensus was reached for coding discrepancies. Codes were entered into NVIVO software. Data were analyzed through direct content analysis using the inductive and deductive codebooks, and the results were organized based on CFIR domains.

RESULTS

Fifty-nine participants (21 patients, 17 caregivers, 9 pediatric SCD providers, 6 adult SCD providers, 6 ED providers) completed a total of 11 focus groups and 5 interviews. This included 8 patient-caregiver focus groups (see Table 1 for basic patient demographics), 2 pediatric SCD provider focus groups, 1 adult SCD provider focus group, and 5 semi-structured interviews with ED providers. Supplemental Digital Content 1 (table) provides sample quotes based on CFIR domains and inductive themes.

Table 1.

Patient Demographics

	Number of Patients	Percentage of Patients
Genotypes
HbSS	13	61.9%
HbSC	5	23.8%
HbSβ+	2	9.5%
HbSβ0	1	4.8%
Sex
Male	7	33.3%
Female	14	66.7%
Age Group
15 – 17.9	5	23.8%
18 – 20.9	7	33.3%
21 - 25	9	42.9%
Race
African American	21	100%

Barriers and Facilitators of AYA-SCD Transition

Table 2 presents the barriers and facilitators of AYA-SCD transition, across three deductive CFIR domains – outer setting, inner setting, individual characteristics, and four inductive domains – healthcare access, healthcare delivery and use, disease education and management, and social or emotional considerations. The research team categorizes these barriers and facilitators into non-modifiable and modifiable factors based on the scope of a structured transition program.

Table 2.

Barriers and Facilitators of AYA-SCD Transition with Non-modifiable Factors (N) and Modifiable Factors (M)

	Healthcare Access	Healthcare Delivery and Use	Disease Education and Management	Social and Emotional Considerations
Outer Setting	• Lack of understanding from employees (N) • Lack of adult specialty services in the region (N) • The awareness of the opioid epidemic has narrowed access to pain treatment for patients with SCD (N)	• Increased awareness of the Opioid Epidemic and practice change (N) • Stigma impacts on healthcare use (N) • Needs of alternative treatment for pain (N)	• Needs of disease education for the general public, for the employees (N) • Needs of disease education for some external providers (N)	• Stigma and lack of understanding in the community (N) • Concerns about structured racism against African Americans (N)
Inner Setting	• Lack of timely care, especially in the adult ED (N) • Lack of adult specialty services in the organization (M)	• Differences between the pediatric and the adult care model (N) • Needs of a clear, structured transition program connecting different care models and provider to provider communication channels (M) • Patients need better linkage to the primary care system (M)	• Needs of clear, structured transition program to help with disease education (esp. some providers who are not familiar with SCD) and management (M) • Structured disease education for patients has been helpful (M)	• Stigma within the organization (M) • Mixed matched expectations between providers and patients, which cause communication challenges (M)
Individual Characteristics: Patients and Caregivers	• Challenges specifically to AYA-SCD: insurance status and transition (M) • Other healthcare access challenges: transportation, scheduling clinic hours (M)	• Believe that transition programs would be helpful (M) • Some patients are hesitant to transition to adult care and have low identification with the adult care institution (M)	• Some patients need better transition readiness (M) • Some caregivers recognize that they should give patients more autonomy (M)	• Challenges specifically to AYA-SCD: independent living, gaining employment, drinking, pregnancy and peer influence (N) • Some caregivers are hesitant to discuss AYA-SCD specific challenges (M) • Self-advocacy and peer-support is important (M)
Individual Characteristics: Providers		• Believe that transition programs would be helpful, but some providers are not aware of care delivery and coordination on the “other side” (M) • Desire to build better provider-patient relationships for the transition (M)	• Some ED providers may need a better understanding of SCD and treatment options (M)	• Some provider may have bias and stigma (M) • Advocacy from providers has empowered patients and caregivers across a variety of settings (M)

Outer Setting

The outer setting refers to the factors outside of the hospital that may influence care during the transition period. Most of the factors manifesting at the outer setting will be non-modifiable factors for a local transitioning program.

The major barriers identified at the outer setting level are: lack of adult specialty services in the region, as at the time of the interviews and focus groups, only one adult SCD provider was available in the region; lack of understanding across a variety of settings, including from the general public, from the employees, and sometimes from providers who are less familiar with SCD; stigma against African Americans and pain treatment-seeking, especially with the increased awareness of the opioid epidemic and change of provider practice.

There’s a lot of pressure from an emergency department given our current healthcare environment, to minimize providing more than a couple days’ worth of pain medications leaving the emergency department. It feels like there’s a lot of people watching what you’re doing, um, with a lot of opinions on their care. So, I think that makes people a little bit more hesitant (in prescribing opioids) now.

– ED Provider

Patients also expressed the need of alternative treatment for pain to reduce some of the barriers in seeking pain treatment.

Inner Setting

The inner setting refers to the factors within the hospital and clinic settings. Some of the inner setting factors are non-modifiable factors that are difficult to change by a local transitioning program, and some factors are modifiable factors that could be improved.

The major barriers of AYA-SCD transition at the inner setting level are the lack of timely care and differences between the pediatric and adult care model. Adult patients often experience difficulties in scheduling timely appointments or have long wait times in the ED. The differences in the pediatric and adult care models, which is hard to change, would result in different expectations from patients, caregivers, and providers and require better patient-centered care coordination.

When you transition to being an adult you, first of all, go all over the place. You may be on the surgical floor, you may be on, you know, you are going to be wherever they can put you basically. And not all of the nurses are as attentive and caring and this, that, and the other as they were on peds. And I even request, as a grown adult, to go to peds

-- Patient

Communication is important and challenges emerge during provider-provider and patient-provider interactions. Stakeholders expressed concerns about the stigma within the healthcare institutions.

There is a lot of behind the scene’s disrespect of patients, and assumptions about SCD patients. Families and the patients themselves know this, but they don’t often say it to us. This is a lot of the reason why they don’t wanna go to the adult hospitals, because they feel like they’re gonna be stigmatized as drug seeking, that they’re gonna be treated differently because of their race, that they’re gonna be, you know, looked at in a certain way. – Pediatric SCD provider

There’s always the elephant in the room, which is that SCD patients tend to be African American, and the issue of prejudice raises its ugly head. And I do think that we all come to work with our preconceived notions and prejudices and there’s a perception amongst some clinicians that the patient is trying to trick you…I find that highly unfortunate.

– ED Provider

Patients, caregivers, and providers all stated negative perceptions about the adult care.

And we as providers, we need to speak positive of adult center. We can’t use that as a punitive damage and say ‘If you don’t do well, we’re gonna send you over to the big house,’ you know, I’ve heard that (laughter). We need to embrace them growing up and make it a happy thing for them, not just the stigma of adult care. I had only been here a couple weeks before I heard about specific stigmas related to [Adult Hospital].

– Pediatric SCD Provider

I’m getting that feedback from some of the patients that come over to us, they think we’re mean, I don't know who’s talking to them but I think if someone would give them more of a positive lookout about coming to the adult side, I think that would help, but it’s looked at as ‘Oh boy, I gotta go over here’.

– Adult SCD Provider

One of the facilitators is that existing health education efforts for patients and caregivers are perceived as very helpful by stakeholders. The participants expressed the need of a structured transition program to connect different care models and provide disease education to not only patients and caregivers, but also providers who are less familiar with SCD.

Individual Characteristics: Patients and Caregivers

Individual characteristics refer to individual-level challenges centered on patients with SCD, their caregivers, and characteristics of providers that could facilitate the process. At the patients and caregivers’ individual characteristics level, challenges specifically to AYA-SCD are of particular concern. Inability to cover costs due to temporary lapses in insurance coverage as patients age dissuade patients from seeking formal care and inhibit access to prescriptions. The change of independent living status and employment status are social factors that may impact patients’ care-seeking. Some providers have also found that discussing AYA-SCD specific challenges, such as drinking and pregnancy, may be difficult during the transition process. New life experiences necessitate disease education and self-management skills around how these young adult experiences may affect sickle cell.

Patient 1: Uh, I think by me turning 21, I found out that alcohol affects my sickle cell because it’s taking the water basically from my body...And um, that affects me. Instead of having a hangover, I can have a sickle cell attack. So, I think that’s something that I wasn’t prepared for, but I understand that now. And I understand that if I feel a little pain, I am not going out and drinking this weekend. But you don’t know that until, it happens to you

Patient 2: And I have never heard that.

– SCD patients

Autonomy and Readiness have been identified as one of the most important facilitators for a successful care transition. Some caregivers recognize that they need to ‘let go’ and become more confident in AYA-SCD for seeking care on their own. Patients may not feel ready for transition for a variety of reasons. Helping AYA-SCD independently seek care and develop familiarity and identification with the adult care institution may help with the transition process.

Advocacy has also been identified as a key facilitator for AYA-SCD transition. Caregivers play important roles in care-seeking in the pediatric care setting. When AYA-SCD patients transition to the adult care model, patients’ self-advocacy becomes increasingly important, especially when they face new challenges in life such as negotiating with employees because of their disease conditions.

Individual Characteristics: Providers

At the provider individual characteristics level, providers believe that transition programs are helpful for AYA-SCD patients, but some providers do not know what has been implemented on the ‘other side’ of the care spectrum (provider knowledge). Providers also believe in building patient-provider relationships with AYA-SCD patients to increase patients’ treatment adherence and show-up rates in follow-up appointments. Advocacy from providers has been identified as a facilitator in AYA-SCD transition and having an opinion leader or a provider advocate will facilitate program implementation. Advocacy has empowered patients and caregivers across a variety of settings.

When the hospital equipped me with a team of people to walk in that door, suited and booted, educated and we sat a table and they advocated and pushed for things that I didn’t even know I needed, but they helped me understand what I should ask for when I don’t have it. So, just feeling empowered. I will never forget that moment of feeling empowered.

-- Caregiver

Although all Adult ED providers reported that they were comfortable treating patients with SCD, they reported that ED providers who are not familiar with SCD may not feel very comfortable treating SCD (provider self-efficacy). The situation is further complicated by ED providers’ interactions with a few adult patients with SCD who have substance misuse issues or frequently visit the ED.

Transition Program Characteristics and Practice Changes Made

Intervention Characteristics refers to the features of an intervention that may influence intervention implementation or outcomes. We asked participants to think about solutions to mitigate the challenges that they perceived to AYA-SCD transition and identify strategies of existing efforts that have worked well or not so well to help AYA-SCD transition. We then mapped these recommendations to each core element of the Six Core Elements of Health Care Transition approach to inform program planning and improvement (Table 3).

Table 3.

The Six Core Elements approach for pediatric and adult practices

	Transition and/or care policy	Tracking and Monitoring	Transition Readiness and/or orientation to adult practice	Transition planning and/or integration into adult approach to care/practice	Transfer of care and/or initial visit	Transition completion or ongoing care
Existing Six Core Elements Framework from Literature [17]	• Create and discuss with youth/young adult and/or family	• Pediatric: Track progress of youth and/or family transition preparation and transfer at the pediatric side • Adult: Track progress of young adult’s integration into adult care	• Pediatric: Conduct transition readiness assessments • Adult: share and discuss welcome and FAQ’s with young adult and guardian, if needed	• Pediatric: Develop transition plan including needed skills and medical summary, prepare youth for adult approach to care and communicate with new clinician • Adult: Communicate with previous clinician, ensure receipt of transfer package	• Pediatric: Transfer of care with information and communication including residual pediatric clinician’s responsibility • Adult: Review transfer package, address young adult’s needs and concerns at initial visit, update self-care assessment and medical summary	• Pediatric: Obtain feedback on the transition process and confirm young adults has been seen by the new clinician • Adult: Confirm transfer completion with previous clinician, provide ongoing care with self-care skill building and link to needed specialists
Stakeholders Proposed Strategies and Intervention Characteristics	• Transition policy needs to be clear, consistent, and well-explained		• Transition preparedness starts at an early age • Prepare caregivers to “let go” to build patient autonomy	• Ensure AYA-SCD specific challenges are well-communicated and addressed • Ensure inter-organizational and patient-provider communication	• Care coordination: co-location of care or a transition care coordinator • Provide incentives (i.e. food) to increase program attractiveness • Improve patient-provider communications	• Peer mentorship could be helpful • Identify program champions and provide ongoing patient advocacy
Changes Made	• Local practice and resource mapping • Established clearer transition policy and assigned responsibilities • The social worker created a resource guide	• The pediatric and adult hematology teams started bimonthly joint transition meetings	• A transition letter for pediatric patients aged 14 • Engaged patients and caregivers in the transition program planning and adjustments • Implemented clinic-based transition assessment and educational intervention to improve transition skills[28]	• Pediatric hematologists extended care to young adults patients with SCD • Bimonthly joint transition meetings	• Pediatric hematologists extended care to young adults patients with SCD • Implemented transition package for all transition patients • Bimonthly joint transition conference • Adult social worker meets with patient in pediatric setting prior to transition	• Continued advocacy for patients and caregivers
Additional Changes	• The institution hired one new adult hematologist and a social worker for the adult team • Improve adult Emergency Department care through establishing more standardized pain treatment practice and address stigma related to patients with SCD

Based on the Six Core Elements of Health Care Transition approach, the results of the needs assessment, and local providers’ expertise, the pediatric and adult institutions affiliated with the academic center have adopted gradual changes to improve local practice (Table 3). Changes include establishing clearer transition policy and assigned responsibilities, pediatric SCD providers extending care to adult patients with SCD for the transition period, establishing better inner and inter-organizational communications through bimonthly pediatric and adult SCD provider transition meetings, and implementing clinic-based education interventions to assess transition readiness and build better transition preparedness for AYA-SCD patients [28]. Additional changes made beyond the Six Core Elements of Health Care Transition approach include hiring an adult hematologist and a social worker for SCD care and implementing initiatives to address stigma and improve pain treatment in the adult Emergency Department.

DISCUSSION

Despite the existing clinical report, guidelines, and toolkits, providing adequate local transitioning care for AYA-SCD remains to be challenging. Local institutions have varied practices, resources, and readiness for transition program implementation. Previous efforts in improving transition programs have been focusing on patient education to build patient transition preparedness [28, 29]. A scoping review of transition interventions for young adults with SCD identified over 20 published articles, the majority of which focus on improving patients’ skills and disease knowledge [30]. Without acknowledging or addressing the outer and inner setting environment, these programs may not achieve maximum outcomes as desired. There is a clear need to establish better framework to help set up transition policies and improve programing and feasibility.

Informed by the CFIR, an Implementation Science determinants framework, the deductive-inductive analysis approach allowed for a comprehensive and structured understanding of the rich data from multiple stakeholder perspectives. The CFIR domains specify which levels the factor manifests, and the themes identified through inductive coding specify challenges and facilitators in detail. The research team further categorized the barriers into non-modifiable and modifiable factors based on the scope of the transition program so that specific strategies and mechanisms could be designed and implemented to target the modifiable factors.

Although many barriers, especially those at the outer setting level, are non-modifiable by a transition program, they provide context for program implementation. The growing awareness of the opioid epidemic in the U.S. has changed provider practice to prevent overprescribing opioids. While this shift of practice is a positive change to alleviate risk and ensure patient safety, AYA-SCD patients and caregivers are concerned about increased stigmatization because of pain treatment-seeking and restrictions on their access to pain treatment [31]. The lack of understanding from schools and employees calls for further patient advocacy to ensure patients’ academic performance and job security [32, 33].

Racism and stigma that AYA-SCD are facing further complicate the challenge in transition, when patients shift from the closely guided pediatric care model to the independent adult care model [34-36]. Structural racism, which refers to systemic racial discrimination from policies, practices, and norms, still manifests today as many African Americans are suffering from low socioeconomic status and inconsistent health insurance coverage [14, 37]. Institutional and interpersonal racism and stigma perpetuate the mistrust between patients and providers, and may result in patient’s avoidance of care-seeking. As African American patients may be less prepared for transitioning to adult care or discuss the shift to an adult health care provider [38, 39], our findings reveal the importance in building the relationship between the patients and the adult SCD providers. Relationship building requires changes not only at the individual and interpersonal level, but also the inner setting level to shift organizational culture. By celebrating the “graduation” to adult care and encouraging milestone achievements, patients and providers can adopt better mindsets for transitioning to the adult care.

At the institutional level, one advantage for this study is that the pediatric and adult clinics are closely connected - the pediatric and adult institutions are affiliated with the same research university and located close to each other. It is easier to connect the pediatric and adult clinic team and extend pediatric care to the adult side compared to other institutions that are not affiliated or located together. To address the inner-setting level barriers, the organization hired an additional adult hematologist to provide specialty care. The pediatric team has extended care for adult patients with SCD during the transition process to take advantage of the existing relationship between AYA-SCD and the pediatric providers. Pediatric trained sickle cell specialists now see AYA-SCD. The pediatric and adult team have also started joint bimonthly transition meetings, which serve as communication channels to help establish more standardized and patient-centered care.

Negative experiences at the adult emergency department are significant barriers to seeking care, and often beyond the scope of a stand-alone transition program to address. The SCDIC is currently implementing electronic individualized pain plans with patient and provider access to improve patients’ satisfaction of the adult emergency department care [40]. The intervention also includes an education component to address the concerns of the opioid pandemic to provide appropriate care for patients with SCD. The long-term benefit of such efforts would not only lead to positive patient outcomes, but also improved perceptions of the adult SCD care and better relationships between the patients and the adult providers and institutions. From a holistic perspective, such efforts will help the transition programs to be more successful and sustained.

At the individual characteristics level, our findings align with previous literature demonstrating that patients need transition assessment and preparation to build autonomy [41-45]. Specific AYA-SCD challenges and experiences, such as pregnancy and drinking behaviors’ impact on disease conditions, should be incorporated into the education curriculum. Based on the transition model, we have piloted a clinic-based educational intervention to improve patients’ transition skills [28]. Our results indicated that educational handouts are a well-accepted and feasible intervention to improve AYA-SCD transition skills [28].

There are several limitations to this study. As this study is conducted in an urban setting where the pediatric and adult institutions were affiliated to the same academic center, our findings may be less generalizable to other geographic locations. The participants with SCD were pre- or post-transition, but no unaffiliated patients participated. In a separate multi-center study from the SCDIC, patients who were lost to follow up were interviewed to better understand their barriers to care, and those results will be published in the future. Our interview guide sought to focus on a broad cadre of factors affecting transition and was not developed based on a specific implementation research framework. While the CFIR framework offers a comprehensive taxonomy of factors influencing intervention planning and implementation, a mixed deductive-inductive approach has been used to address the challenge that CFIR domains and constructs may not capture all emergent themes in qualitative assessment [46]. The deductive-inductive approach integrates inductive data-driven codes with deductive theory-driven codes with a priori code template and has proven rigor within qualitative research [47]. This approach expedites data analysis while providing themes that otherwise would not be captured by CFIR constructs.

Future research may integrate IS frameworks and models into data collection efforts early on so that the codebook could include detailed CFIR constructs to identify implementation determinants, which will strengthen applicable findings for intervention design and evaluation.

As we have initiated changes to improve local practice, most of the modifiable barriers identified in this study have been targeted by improvement efforts. One of the modifiable barriers that could be further addressed is to provide better linkage to adult primary care for AYA-SCD. Stakeholders have also identified that peer-to-peer mentoring could be an intervention component that helps AYA-SCD transition. We will continue finalizing a clearer transition policy and incorporate ongoing stakeholder inputs to maximize the transition program’s impact. For future directions, multi-site transdisciplinary transition interventions will help organizations establish standardized transition process, and studies should also have an increased emphasis on the rationale of program change and feasibility of improvement efforts.

CONCLUSIONS

This study has identified multi-level modifiable and non-modifiable barriers and facilitators for AYA-SCD transitioning from pediatric care to adult care. Based on the needs assessment findings, the local team proposed specific recommendations and implemented changes building on an existing transition framework. Results from this study also call for continued advocacy for patients with SCD. Future studies could use implementation science frameworks and models to examine multi-level barriers and facilitators to expedite the development or improvement of structured interventions to eliminate health disparities and advance health equity in real-world practice.