Evaluating Survivorship Care Plans for Use By Hematopoietic Stem Cell Transplant Survivors and Non-Transplant Clinicians: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health

Abstract

Background Survivors of hematopoietic stem cell transplants (HSCTs) face many chronic and late complications that pose challenges to future survivorship care. The provision and review of Survivorship Care Plans (SCPs) has been proposed as a method to improve knowledge of these complications as well as screening and treatment recommendations among survivors and their non-transplant clinicians. Creating SCPs can be work intensive, however, using the electronic health record (EHR) can reduce the time and personnel resources required to generate SCPs and complement efforts to discretely capture HSCT data. Objectives Our objectives were to determine what content should be included in HSCT-focused SCPs for these diverse users as well as format and preferred timing of SCP provision. Results will be used to create HSCT-focused SCP templates generated by and integrated with an EHR. Methods Eligible HSCT survivors were ≥18 years and received a HSCT > 12 months ago. Non-transplant primary care and oncology clinicians were eligible if they provided care to HSCT patients. Those eligible were invited to complete a survey evaluating a HSCT-focused SCP with treatment summary data generated by an EHR. The usefulness of content, format and utility of the document, and timing of provision were considered especially pertinent. The survey utilized both 5-point Likert scales and open-ended questions. Results Survey response rate exceeded 80% (n=29/36 survivors; n=18/22 clinicians). Our survivor respondents were a median age of 59 (range 32-73), White (100%), mostly female (52%) and educated (52% held an associate degree or higher). Clinician respondents were predominately female (67%), White (78%) and providing primary care (56%). Over 85% of survivors and clinicians perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, graft versus host disease and other late/chronic side effects to be useful or very useful. The majority of survivors also found care team contact information useful or very useful. Additionally, over 85% of survivors and clinicians agreed or strongly agreed that the SCP would improve follow-up care and increase their understanding of treatments and chronic/late side effects. Overall, 88% were satisfied with the SCP and found it understandable and easy to use. All respondents indicated a desire to receive SCPs. Survivors (93%) prefer to receive the SCP as a paper document at the end of a regular follow-up, and most would like to receive the SCP immediately after transplant (70%) or two to three months after transplant (67%). Clinicians (89%) would prefer to receive the SCP through the EHR. Conclusion These results will help improve future HSCT-focused SCP templates to meet the needs of these users. Future work will include leveraging the EHR for creation and provision of SCPs with ease.