Abstract
Background Allogeneic hematopoietic stem cell transplant (HCT) recipients are at risk for late complications that can impact their quality of life. Routine follow-up care is vital for early identification and treatment of complications. While guidelines for follow-up care exist, survivors often do not receive or adhere to them. A survivorship care plan (SCP) can help by providing patients with tailored information on their diagnosis, treatments, and screening recommendations. The Center for International Blood and Marrow Transplant Research (CIBMTR) developed an HCT-SCP that is auto-populated with patients' clinical data reported to the CIBMTR database. Although the HCT-SCP showed positive results in a randomized clinical trial, it is not routinely used by transplant centers (TCs). The purpose of this pilot study is to apply implementation science (IS) principles to design an intervention that facilitates HCT-SCP use at TCs.
Methods The Behavior Change Wheel (BCW) served as a framework for intervention design. Barriers to implementation of the HCT-SCP were ideated and mapped to the Capability, Opportunity, Motivation, and Behavior (COM-B) model. The study team used the BCW to generate interventions that were aligned with the components of COM-B, and prioritized solutions based on estimated impact and feasibility. Behavior change techniques (BCTs) were used to build comprehensive strategies to facilitate HCT-SCP adoption. Six TCs participated in the study for 6 months. Team members from each TC attended 3 onboarding sessions, where they were introduced to the strategies that were developed, and received support in defining their implementation process. TCs established monthly HCT-SCP distribution goals before starting the study.
The study used a mixed methods approach for data collection and analysis. Data sources included pre- and post-pilot surveys, worksheets, direct observations, and feedback via group discussions. The Consolidated Framework for Implementation Research (CFIR) was used to identify factors that influenced implementation. The RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) framework was used to evaluate implementation.
Results Sixty-five barriers to HCT-SCP use were identified by the project team. Forty-three potential interventions were identified under six BCW intervention functions that mapped to 9 BCT groups including goals and planning, feedback and monitoring, social support, shaping knowledge, natural consequences, comparison of behavior, associations, comparison of outcomes, and antecedents. Quantitative and qualitative data suggest the intervention facilitated HCT-SCP use. Post-pilot surveys show that intervention strategies were perceived as somewhat helpful to very helpful for 91% (n= 32/35) of responses received. Further, 100% (n=6/6) TCs reported that implementation of the care plan was effective. Data from 5 TCs show that 80% (n= 57/71) of eligible patients received the HCT-SCP.
Study participants identified multiple barriers and facilitators that may impact HCT-SCP use by patients and TC staff. Common themes emerged in pre and post pilot data. It was reported that some patients may find the document challenging due to its length and because it only available in English. Perceived barriers that staff may face include determining the appropriate time to distribute the care plan, patient eligibility limitations, issues with accessibility, and need for physician buy in. Perceived facilitators that may impact patient use were promoting standardized post-transplant care and improving patient education, while promoting continuity of care was the predominant staff facilitator.
Conclusion This study demonstrates the impact of using implementation science methodologies to facilitate adoption of HCT-SCPs in TCs. Context-specific approaches were used to identify barriers and develop an intervention with positive results toward HCT-SCP distribution. Leadership buy-in and appropriate stakeholder involvement early on were essential to adoption success. Future work should focus on creating strategies to eliminate identified barriers. Increasing the adoption of HCT-SCPs is critical because they can bridge the gap in post-HCT care, enhancing care continuity and quality.
