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Original research
Results of a healthcare transition learning collaborative for emerging adults with sickle cell disease: the ST3P-UP study transition quality improvement collaborative
  1. Ifeyinwa Osunkwo1,2,
  2. Jennifer S Cornette1,
  3. Laura Noonan3,
  4. Cheryl Courtlandt3,
  5. Sarah Mabus3,
  6. Patience H White4,
  7. Margaret McManus4,
  8. Myra M Robinson5,
  9. Michelle L Wallander1,
  10. James R Eckman6,
  11. Elna Saah7,
  12. Ofelia A Alvarez8,
  13. Mark Goodwin9,
  14. Leila Jerome Clay10,
  15. Payal Desai11,
  16. Raymona H Lawrence12
  1. 1Atrium Health Levine Cancer, Charlotte, North Carolina, USA
  2. 2Novo Nordisk Rare Disease, Zurich, Switzerland
  3. 3Center for Advancing Pediatric Excellence, Levine Children’s Hospital, Atrium Health, Charlotte, North Carolina, USA
  4. 4Got Transition, The National Alliance to Advance Adolescent Health, Washington, DC, USA
  5. 5Department of Biostatistics and Data Sciences, Atrium Health Levine Cancer, Charlotte, North Carolina, USA
  6. 6Emory University, Atlanta, Georgia, USA
  7. 7Children's Healthcare of Atlanta, Atlanta, Georgia, USA
  8. 8Pediatric Hematology, University of Miami School of Medicine, Miami, Florida, USA
  9. 9Sickle Cell Thalassemia Patients Network, New York, New York, USA
  10. 10Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA
  11. 11Atrium Health Levine Cancer, Wake Forest School of Medicine, Charlotte, North Carolina, USA
  12. 12Jiann Ping Hsu College of Public Health, Georgia Southern University, Statesboro, Georgia, USA
  1. Correspondence to Dr Raymona H Lawrence; rlawrence{at}georgiasouthern.edu

Abstract

Background Individuals with sickle cell disease (SCD) experience poor clinical outcomes while transitioning from paediatric to adult care. Standards for SCD transition are needed. We established a Quality Improvement (QI) Collaborative that aimed to improve the quality of care for all young adults with SCD by establishing a standardised SCD transition process. This study evaluates the implementation of the Six Core Elements (6CE) of Health Care Transition, which was a fundamental component of the cluster-randomised Sickle Cell Trevor Thompson Transition Project (ST3P-UP) study.

Methods A central QI team trained 14 ST3P-UP study sites on QI methodologies, 6CE and Got Transition’s process measurement tool (PMT). Site-level QI teams included a transition coordinator, clinic physicians/staff, patients/parents with SCD and community representatives. Sites completed the PMT every 6 months for 54 months and monthly audits of 10 randomly-selected charts to verify readiness/self-care assessments and emergency care plans.

Results Of a possible 100, the aggregate mean (±SD) PMT score for paediatric clinics was 23.9 (±13.8) at baseline, 95.9 (±6.0) at 24 months and 98.9 (±2.1) at 54 months. The aggregate mean PMT score for adult clinics was 15.0 (±13.5) at baseline, 88.4 (±11.8) at 24 months and 95.8 (±6.8) at 54 months. The overall QI Collaborative PMT score improved by 402%. At baseline, readiness/self-care assessments were current for 38% of paediatric and 20% of adult patients; emergency care plans were current for 20% of paediatric and 3% of adult patients. Paediatric clinics had one median readiness assessment shift (76%) and four median emergency care plan shifts (65%, 77%, 79%, 84%). Adult clinics experienced three median self-care assessment shifts (58%, 63%, 70%) and two median emergency care plan shifts (57%, 70%).

Conclusions The ST3P-UP QI Collaborative successfully embedded the 6CE of Health Care Transition into routine care and increased administration of assessments and emergency care plans for transition-aged patients with SCD.

  • Quality improvement
  • Transition of Care
  • Control charts, run charts
  • Implementation science
  • Patient-centred care

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/bmjqs-2024-017725

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    WHAT IS ALREADY KNOWN ON THIS TOPIC

    • Individuals with sickle cell disease transitioning from paediatric to adult care often experience poor clinical outcomes. A need exists for a standardised transition process for paediatric and adult sickle cell clinics.

    WHAT THIS STUDY ADDS

    • A quality improvement approach to implement the Six Core Elements of Health Care Transition resulted in sustained improvements in routine clinic processes for the transition of youth from paediatric to adult care.

    HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

    • The successful results of this project support the establishment of transition guidelines and the use of quality improvement to implement a structured transition process for vulnerable populations. The change package and tools developed could be implemented at other sickle cell clinics and/or used for other chronic conditions with slight adaptations.

    Introduction

    Problem description

    Sickle cell disease (SCD) is an inherited haemoglobin disorder causing recurrent unpredictable acute pain episodes, multi-organ damage, profound morbidity and early mortality. In the United States >95% of children with SCD reach adulthood; however, the mortality rate doubles during the transition from paediatric to adult care1–4 due to disengagement from preventative and comprehensive care, increased risk-taking, loss of healthcare and accelerated disease progression. Increased acute care utilisation and poor clinical outcomes occur during transition compared with other ages.5–8

    The Sickle Cell Trevor Thompson Transition Project (ST3P-UP) was designed to implement an education-based, structured experience for emerging adults with SCD and evaluate the effectiveness of adding peer mentoring.9 This multi-site, cluster-randomised, comparative effectiveness trial was conducted at 14 US-based SCD clinical sites. A Quality Improvement (QI) Collaborative, comprised of ST3P-UP study sites, was formed to implement the standardised transition programme. While the ST3P-UP study was focused on study participants and patient-level outcomes,9 the QI Collaborative addressed standardising care for all transition-aged individuals living with SCD and receiving care at participating clinics regardless of participation in the ST3P-UP study. This ensured that the new transition process would become a sustainable part of routine clinical care.

    Rationale for an SCD QI Transition Collaborative

    SCD community stakeholders (providers, healthcare systems, community-based organisations (CBOs), patients, families) have desired a standardised approach to healthcare transition (HCT). To transition effectively from paediatric to adult care, support must be structured, coordinated and planned.10 Systematic reviews of HCT show that a structured approach statistically improves outcomes in the triple aim; public health (adherence, self-care skills, quality-of-life, self-reported health), care experience (satisfaction, barriers) and utilisation (interval between last paediatric and first adult visit, number of adult visits, hospital admissions, length of stay).11 12

    Education-based interventions, multidisciplinary teams and use of transition coordinators/navigators are commonly used by programmes for individuals with various chronic childhood conditions.13 Most programmes focus on disease education, adherence to adult medical appointments and treatment regimen, and patient satisfaction as indicators of positive HCT outcomes. In 2018 (reaffirmed in 2023), a coalition of medical professional societies published practice-based recommendations for HCT programmes,14 including QI initiatives that covered three transition components (planning, transfer, integration into adult care) to optimise local implementation of HCT pathways.

    Got Transition, a US-based programme of The National Alliance to Advance Adolescent Health, created an open-access comprehensive toolkit to support programmes in developing a structured approach to address HCT outcome disparities. The Six Core Elements (6CE) of Health Care Transition were thus developed through a series of QI learning collaboratives.15 Measurable improvements were found in all quality indicators, resulting in the development and publication of the 6CE, which were subsequently updated in 2020.16 This HCT QI approach was used in a transition pilot project for emerging adults with chronic mental health challenges and developmental disabilities and showed significant improvement in all 6CE over 18 months.17 Children’s hospitals18 and health systems19 have also incorporated the 6CE approach to advance HCT and reported statistically improved transition outcomes (reductions in morbidity, mortality, and acute care utilisation and improved patient satisfaction and adherence to care instructions). A recent publication demonstrated improved outcomes for youth/young adults with SCD using a 6CE-based transition programme.20

    A QI Collaborative exponentially accelerates improvement through shared learning using the ‘All Teach, All Learn’ format21 with the ability to influence population-level outcomes beyond a single site. We therefore adopted this QI Collaborative approach to establish a standard transition model for emerging adults with SCD based on both the paediatric and adult 6CE of HCT: (1) transition policy, (2) transition tracking and monitoring, (3) transition readiness/orientation to adult practice, (4) transition planning/integration into adult practice, (5) transfer of care/initial visit and (6) transition completion/ongoing care.22

    Global aim with goals and measures

    The SCD QI project Global Aim statement and 6CE implementation timeline, based on the Model for Improvement,23 were established during the study kickoff meeting.

    Sickle cell disease (SCD) is a complex chronic disease that results in significant morbidity, mortality, and poor quality of life for teens and young adults. A successful transition from pediatric care to adult care has a great impact on the health and lives of these patients. We aim to improve the health of teens and young adults with SCD by implementing an evidence-based transition program in pediatric and adult SCD programs. We will accomplish this by December 30, 2021, using the Model for Improvement and the Got Transition Six Core Elements.

    The outcome goal was to demonstrate a 75% increase in the SCD HCT process measurement tool (PMT) score within 12 months of project initiation and achieve a score of >90 within 24 months (figure 1). Process goals/measures were 75% of patients in paediatric, and adult clinics will complete a readiness/self-care assessment annually and have an emergency care plan created/reviewed yearly.

    Figure 1
    Figure 1

    Patient-centred SCD transition process and outcome measures for the ST3P-UP QI Collaborative. 6CE, Six Core Elements of Health Care Transition; ECP, emergency care plan; ED, emergency department, TIP-RFT, Transition Intervention Program—Ready for Transition instrument; SCD, sickle cell disease.

    Sites were also encouraged to establish unique measurable goals aligned with the objectives of their individual programmes. Herein, we describe the methods and results from the ST3P-UP study QI Collaborative.

    Methods

    Context

    Each ST3P-UP study site included a paediatric and adult SCD clinic. All clinics had an established relationship with a partner CBO with a collective interest in improving HCT. Sites were located in eight states (North Carolina, South Carolina, Georgia, Alabama, Florida, Kentucky, Virginia and New York). There were six small sites (<40 paediatric and adult patients; 6–24 patient visits per month) and eight large sites (≥40 paediatric and adult patients; 27–105 patient visits per month). Although the age range of transition-aged individuals varied by site (approximately 12–26 years old), the QI Collaborative focused on data collection from 16 to 25 year-olds.

    Each site formed their own Triad, comprised of the (1) clinical teams, (2) CBO representatives and (3) at least one patient/parent representative. Triad members were responsible for leading their QI team. Patients/parents were integral to the QI processes. For example, transition policies were designed with their direct input to ensure alignment with the practical needs of transition-aged patients.

    Contextual nuances that were critical to the design and implementation of this collaborative included:

    1. Recognition that a standardised, coordinated HCT process and a collective commitment to improving HCT were priorities.

    2. Collaboration between paediatric and adult clinical teams, CBOs and youth/young adults with SCD (Triad members) was necessary to establish a coordinated, patient/family-centred transition process.

    3. Commitment to the QI project to engage in improvement training, QI methodologies and data collection requirements as part of routine care delivery.

    4. Acceptance of each Triad member as partners with equal rights, voices and privileges and respect for everyone’s contribution potential.

    5. Understanding that working together as part of a collaborative meant collective buy-in for solving problems, not attributing blame and maintaining a solutions-driven focus based on each member’s area of expertise.

    The Got Transition HCT PMTs (online supplemental files 1 and 2) were adapted to measure and validate sites’ implementation of and adherence to the 6CE.24 25 PMT scores ranged from 0 to 100, with higher scores indicating more adherence to the structured approach to HCT. A systematic review of transition interventions for other disease indications showed that structured HCT processes result in statistically significant positive patient outcomes (eg, decrease in HbA1c levels in patients with type 1 diabetes).11 We hypothesised that after 24 months of QI interventions, the average PMT score would increase to 90 out of 100. We developed a key driver diagram (online supplemental file 3) to identify primary and secondary drivers that were aligned with the 6CE. We used rapid Plan–Do–Study–Act cycles to implement the QI process.23 A performance improvement coach (JSC) trained, monitored and prospectively evaluated both the processes and outcomes of 6CE implementation (eg, executing Plan–Do–Study–Act cycles, data review and analysis, process mapping, root cause analysis). Got Transition HCT Feedback surveys26 were incorporated to obtain feedback on the patient transition experience.

    Supplemental material

    Supplemental material

    Supplemental material

    QI team formation

    The central QI team that was formed included the performance improvement coach, QI consultants and the Got Transition team. Next, the ST3P-UP Transition QI Collaborative was established (table 1) to provide the necessary education and network to all 14 sites (28 clinics) for building a transition programme using an All Teach, All Learn approach. An in-person kickoff meeting was held with all sites in July 2018 to launch the collaborative. The central QI team provided training on healthcare improvement, QI fundamentals and methodologies, 6CE and the SCD PMT.

    View this table:
    Table 1

    ST3P-UP QI Collaborative process

    Each site formed a site-level QI team comprised of a transition coordinator, physician(s) and staff from the paediatric and adult clinics, CBO representatives and a patient representative. Some transition coordinators were current team members who took on dual roles (eg, paediatric/adult social workers), while others were new additions to the team. The CBO provided the community and patient perspectives during team discussions. Sites could add ‘ad hoc’ QI team members based on their health system infrastructure, overall clinical team composition and identified needs. For example, one site’s health system QI coach participated in the QI Collaborative, while other sites involved their front-office staff, health educator and social worker. Each site’s transition coordinator served as a liaison between the site QI team members and the performance improvement coach.

    Change package

    A comprehensive change package (outlined in online supplemental file 4) was developed that included a detailed description of each Core Element along with tools and resources to support implementation. The change package encompassed SCD-specific transition education for providers, CBOs and patients, tools to enhance the transition and QI processes, a standard education model, readiness/self-care assessments including the previously developed and validated SCD Transition Intervention Program—Readiness for Transition assessment27 and an emergency care plan template. The change package was shared with site QI teams along with instructions for leveraging its resources. Sites were also encouraged to openly share resources and learnings they developed locally with other members of the collaborative.

    Supplemental material

    The emergency care plan included provider-recommended dosing for break-through and long-acting pain medications, based on three levels of pain. Symptom prevention, trigger avoidance and instructions for seeking care were also included. Some sites were able to build the emergency care plan in the electronic medical record, making it visible to emergency room providers and patients via their patient portal. Patients were also given a hard copy of the emergency care plan and instructed to keep a picture of it on their mobile phone to show emergency room providers.

    To support a standard approach to HCT, Core Element 3 includes transition preparation and orientation to adult care through formal education. We chose a standardised SCD education curriculum called the Who, What, Where SCD Transition Education Module. This curriculum was codeveloped by a Triad site principal investigator with input from patient-partners and the SCD community.28–31 Sites were instructed to document the structured education and any additional interventions provided during each visit to address gaps identified through readiness or self-care assessments.

    QI training

    Frequent QI touchpoints were held throughout this initiative including annual investigator meetings (virtual in 2020 and 2021 due to the COVID-19 pandemic) where the collaborative and central QI team gathered to receive in-depth QI training, share annual QI metric data and provide status updates on site QI progress. These were crucial in fostering a peer learning environment and promoting Triad engagement. The central QI team conducted biannual site visits with the Triad to review each site’s progress with 6CE implementation, provide coaching for improvement and obtain patient feedback on the implementation of transition protocols.

    Virtual monthly QI meetings provided ongoing group and individual site coaching on the 6CE and QI methodologies. These meetings were organised into three segments: (1) ‘Team Talk Time’ which provided opportunities for best practice sharing where sites could showcase their specific Plan–Do–Study–Act cycles and results; (2) a didactic segment where subject matter experts provided education and training on the 6CE, PMT usage, QI data collection processes, patient education materials, engagement strategies and other SCD and transition education materials and (3) a data review segment where ongoing QI data for the process and outcome measures were analysed and discussed. Site Triad members learned how to perform chart audits and create and interpret run charts to measure process change.

    Each site QI team was charged with implementing the 6CE in their clinics. They developed their site-specific key driver diagram, brainstormed change ideas for specific drivers of transition success unique to their identified needs, and designed tools and processes that were appropriate for their local context. Each site QI team then determined process changes to test and assigned roles and responsibilities32 to allow for efficiency and replication in their processes. Site QI teams met monthly, supported by the performance improvement coach and discussed change ideas, as well as site performance compared with goals. Additionally, the performance improvement coach held supplementary coaching calls with the designated QI leader from each site when needed for further guidance and direction.

    Data collection

    The baseline PMT assessment was completed by each sites’ paediatric and adult physicians at the project kickoff (July 2018) to evaluate the starting point of clinical transition programmes (online supplemental files 1 and 2). Subsequently, sites performed PMT self-evaluations every 6 months for 54 months to assess 6CE implementation progress and provided supporting documentation for each element showing processes were aligned with Got Transition’s criteria. The performance improvement coach compared this documentation with the predetermined criteria and issued a validated PMT score. When necessary, level-setting conversations were held with sites to review discrepancies between self and validated scores.

    Beginning in March 2019, each clinical team audited 10 randomly selected charts per month33 of transition-aged patients (16–25 year-olds) seen in the clinic that month, for completed assessments (readiness in paediatric clinics and self-care in adult clinics) and emergency care plans. The results of these chart audits were documented in run charts.

    Analysis

    Composite PMT scores of the 6CE were summarised at each time point with descriptive statistics (mean±SD, median and range). Aggregate scores for individual Core Elements from paediatric and adult clinics were analysed. Results were used to focus the sites’ efforts during the next scoring period.

    For the QI process measures, the proportion of audited patients with a current readiness/self-care assessment and emergency care plan were calculated monthly per site (paediatric and adult clinics) and for the collaborative. ‘Current’ for both measures was defined as completed or updated and reviewed annually. Clinical teams analysed the data using run chart rules to identify shifts, trends, runs and astronomical points.33 The QI coach reviewed site-level and aggregate data with the collaborative.

    Ethical considerations

    This project was undertaken as a quality improvement initiative and as such does not constitute human subjects research.

    Results

    PMT scores

    Site-specific PMT scores over time are shown for paediatric and adult clinics in figure 2A and B, respectively. Within 24 months, 93% (13 of 14) of paediatric clinics and 71% (10 of 14) of adult clinics met or exceeded the PMT goal of 90. By 30 months, all paediatric clinics and 93% of adult clinics had met or exceeded the PMT goal. Although one adult clinic never met the study-specified PMT goal, their scores improved from 0 to 76.

    Figure 2
    Figure 2

    Validated PMT scores from baseline through 54 months for paediatric (A) and adult (B) clinics. Scores were calculated every 6 months on a 0–100 scale, where higher scores indicated higher adherence to Got Transition’s 6CE. Sites had a goal of scoring 90 (red dashed line) at the 24-month scoring period. Sites A–F, I and K were classified as large and sites G, H, J, L, M and N as small. 6CE, Six Core Elements; PMT, process measurement tool. Baseline corresponds to July 2018.

    The validated mean (±SD) PMT score for the 14 paediatric clinics was 23.9±13.8 at baseline and 98.9±2.1 by study completion at 54 months (online supplemental table 1). The validated mean (±SD) PMT score for the 14 adult clinics was 15.0±13.5 at baseline and 95.8±6.8 by study completion. Paediatric PMT scores were consistently higher than adult PMT scores but nearly converged after 30 months. The mean paediatric and adult PMT scores improved by 314% and 539%, respectively. The overall collaborative mean PMT score (paediatric and adult clinics combined) was 19.4±14.1 at baseline and 97.4±5.2 by study completion, a 402% improvement. Small sites improved by 444% while large sites improved by 362%.

    Supplemental material

    At baseline, self-scored and validated PMT scores aligned for only three paediatric clinics and two adult clinics. The self-assessed PMT score was higher than the validated PMT score at baseline for 71% (10 of 14) of paediatric sites and 86% (12 of 14) of adult sites (figure 3A and B). After 24 months of consistent QI coaching, the self-scored and validated PMT scores were aligned for 93% (13 of 14) of paediatric sites (figure 3C) and 50% (7 of 14) of adult sites (figure 3D). However, by study completion all sites achieved competency in objectively measuring their transition process with adherence to the 6CE.

    Figure 3
    Figure 3

    Original PMT scores compared with validated PMT scores for paediatric sites at baseline (A), adult sites at baseline (B), paediatric sites at 24 months (C) and adult sites at 24 months (D). Sites A–F, I and K were classified as large and sites G, H, J, L, M and N as small. PMT, process measurement tool. Baseline corresponds to July 2018.

    Individual Core Element aggregate scores improved over time (online supplemental figure 1). For example, baseline paediatric and adult composite scores for Core Element 1—Transition Policy were 14% and 3% of the total maximum, respectively. Notably, these scores improved at 12 months (91% paediatric, 75% adult) and 24 months (99% paediatric, 96% adult). By 30 months, all paediatric and adult clinics had achieved the maximum aggregate score (100%) for Core Element 1.

    Supplemental material

    Assessments and emergency care plans

    Sites demonstrated substantial improvements with having current readiness/self-care assessments and emergency care plans for patients. At baseline, only 38% of paediatric patients had a current readiness assessment and 20% of adult patients had a current self-care assessment while only 20% of paediatric and 3% of adults had a current emergency care plan. Run charts demonstrated significant improvement with readiness/self-care assessments and emergency care plan measures. Paediatric sites showed sustained improvement as early as 6 months with a single median shift (76%) for readiness assessments (figure 4A) and four median shifts (65%, 77%, 79%, 84%) for emergency care plans (figure 4B). This signified that the paediatric clinics established sustainability in consistently administering the readiness assessments and maintaining current emergency care plans. Adult clinics experienced three median shifts (58%, 63%, 70%) for self-care assessments (figure 4C) and two median shifts (57%, 70%) for emergency care plans (figure 4D). The adult clinics demonstrated progress towards sustained improvement. The impact of this improvement was best described by a patient during a site visit, ‘I’ve never had such an amazing experience in my 23 years of going to the emergency department. They knew exactly how to treat me and followed my emergency care plan carefully and completely. Thank you ST3P-UP.’

    Figure 4
    Figure 4

    Percentage of patients across all sites with a current paediatric readiness assessment (A), paediatric emergency care plan (B), adult self-care assessment (C) and adult emergency care plan (D). Baseline corresponds to March 2019.

    Discussion

    The ST3P-UP QI Collaborative achieved full implementation of the structured 6CE transition process across 14 paediatric and 14 adult clinics over 54 months. The collaborative aim of achieving a ≥90 PMT score by 24 months was reached or exceeded by 13 of 14 paediatric and 10 of 14 adult clinics. By study completion, all but one adult clinic reached this PMT target, with 100% of paediatric programmes and 85% of adult programmes exceeding the goal. The adult clinic that did not reach the goal experienced staffing challenges, including principal investigator and CBO leader changes.

    With no established normative process for shepherding emerging adults with SCD through transition, all sites scored low on their baseline PMT assessment. Since transition has historically been considered the responsibility of paediatric clinics, they likely had more resources and infrastructure dedicated to transition planning and execution at the onset as compared with adult clinics. It was thus not surprising that paediatric clinics had higher baseline and subsequent PMT scores compared with adult clinics. This gap, however, narrowed over time with adult and paediatric PMT scores nearly converging by 30 months. Adult clinics recorded a higher percent increase in PMT scores from baseline compared with paediatric programmes. This provides evidence that given the appropriate resources and coaching, adult programmes were equally capable of implementing a structured process for supporting transitioning patients with SCD. Additionally, small sites showed a greater increase in PMT scores than large sites possibly due to fewer logistical hurdles with implementing process change.

    All programmes showed misalignment in their self-scored versus validated PMT scores at baseline with sites frequently scoring themselves higher than the validated score. Equivalency between self-scored and validated PMT scores reached 100% by study completion. This highlights the success of the educational component of the QI Collaborative and the importance of coaching sites to objectively assess their existing processes prior to implementing changes so improvement can be accurately measured.

    Having a current emergency care plan was considered a valuable tool to improve the healthcare experience and quality of care received by patients during acute pain exacerbations. The lack of standardised management guidance during emergency department visits has been a significant source of disparities for patients. Many acute care personnel often refer to patients with SCD who present to the emergency department with pain as ‘drug seeking’. The emergency care plan was developed collaboratively between the SCD care team and patients and represented an individualised management plan endorsed by the SCD programme. Having an individualised, expertly derived emergency care plan helps providers unfamiliar with SCD and its management to be more comfortable with dosing and administering the required pain medications.

    The benefits of having an up-to-date readiness/self-care assessment were reflected in the individualised support provided to patients as they navigated transition. Rather than following a routine clinic visit checklist of actions, the readiness/self-care assessment revealed specific gaps in skill development that could then be addressed by the appropriate care team member, thus optimising resource deployment to promote a positive transition experience. Acquiring self-efficacy during paediatric care may not translate to confidently applying the same skills with a new adult care team and in a new environment. The prospective monitoring of transition readiness (paediatrics) and self-care (adults) allowed the clinical teams to objectively identify any weaknesses/gaps and ensure that individualised support was provided to build confidence, resilience and independence.

    Sites were coached on the Model for Improvement. A collaborative aim statement and project measures were developed to outline target improvements and to define concrete goals as performance indicators. Sites generated change ideas locally and documented Plan–Do–Study–Act cycles while testing process changes. They collected data and learned data analysis techniques to determine if their changes brought the anticipated outcomes, and to determine the next steps to drive continuous improvement. Unique aspects of this project include applying QI methodology to the transition process and using the Model for Improvement to systematically measure gaps in SCD care and improve outcomes for individuals living with SCD.

    A comprehensive transition change package was developed to support sites with the practical implementation of the 6CE. The package included detailed descriptions of each Core Element, with tools and process guides that can be applied by QI teams. The package also provided SCD patient-directed education materials and provider-specific tools to enhance the transition process. The ST3P-UP QI change package has been shared with the American Society of Hematology Research Collaborative to support their ongoing transition QI Collaborative and is available for other groups to use on request.

    Strengths and limitations

    Patients and CBOs had a voice in building this transition programme by participating in the Triads and providing feedback on 6CE processes and resource designs. The collaborative benefited from a single QI coach throughout the entire study. This allowed continuity in expectations, communication, process implementation and education strategies. We also required sites to submit supporting process documentation, which was validated by the QI coach. The collaborative had access to content experts in the three primary areas that were required for success—QI, transition and SCD. Additionally, the transition coordinator served as the local QI team lead and, as a member of the clinical team, supported both the paediatric and adult clinics. These characteristics were critical to the success of the collaborative.

    Study limitations included not evaluating every 6CE measure or collecting balancing measures. However, we reviewed site process maps to reduce potential negative impacts on teams and clinic flow. Additionally, while implementation of the 6CE should lead to improved outcomes, we cannot determine the direct cause of improvements, nor can we quantify the number of patients reached. Baseline data were limited, as standardised application of the 6CE of transition was novel in all practices. A few practices had attempted transition projects, but none had established processes to measure these attempts.

    The COVID-19 pandemic disrupted clinical care and priorities shifted to support acute care and COVID-related interventions. Staff redeployment and illness-related absences created gaps in care teams. Despite these challenges, most teams demonstrated ongoing improvement; there were no significant drops in 6CE adherence and outcome measures during the pandemic. We attributed this to proactive team engagement within the collaborative structure. Also, we successfully conducted virtual monthly collaborative and coaching calls, two annual investigator meetings and biannual site visits during the pandemic.

    Conclusions

    Using this QI Collaborative approach, we successfully embedded the structured 6CE model into routine clinical care to improve care delivery for emerging adults with SCD and demonstrated sustainability. The change package and tools developed for the project could be implemented to improve the transition for other chronic conditions with slight adaptation. This project also emphasises the importance of the transition coordinator role to facilitate an uninterrupted transition process for patients. The successful results of this project highlight the importance of establishing transition guidelines and using QI to implement a structured HCT process within the standard of care for vulnerable populations.

    Data availability statement

    Data are available upon reasonable request.

    Ethics statements

    Patient consent for publication

    Ethics approval

    Not applicable.

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    Supplementary materials

    Footnotes

    • Contributors IO and RHL—funding acquisition. IO, JSC, LN, CC, SM, PHW, MM, JRE and RHL—conceptualisation and methodology. ES, OAA, MG and LJC—investigation. JSC, ES, OAA and LJC—data collection. IO, JSC, LN, CC and PD—data analysis and interpretation. MMR—statistical analysis. IO, JSC and MW wrote the original draft, with all other authors contributing refinements. All authors reviewed and approved the final manuscript. IO is the guarantor.

    • Competing interests IO received grant funding from HRSA and CDC and previously served as a consultant for Acceleron, Chiesi, Cyclerion, Emmaus, Forma Therapeutics, Global Blood Therapeutics and Novartis. PD received grant funding from CHL-Bhering, Forma, NIH, Novartis, Takeda, UPMC and UT Memphis and serves as an NMDP study monitor and Forma advisory board member. She has also consulted for Forma, Chiesi, Bluebird Bio and Vertex as an advisory member. RHL received grant funding from PCORI, served as a consultant for Novo Nordisk and Pfizer and served as a consultant for Forma Therapeutics. OAA was advisory board member of Novartis and Global Blood Therapeutics and receives grant funding from NIH, HRSA and CDC. All other authors have no relevant interests to declare.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.