Survivor and Clinician Assessment of Survivorship Care Plans for Hematopoietic Stem Cell Transplantation Patients: An Engineering, Primary Care, and Oncology Collaborative for Survivorship Health

Abstract

The long-term care of hematopoietic stem cell transplantation (HSCT) survivors poses special challenges owing to a myriad of possible chronic and/or late complications. Survivorship care plans (SCPs) have been proposed as tools to communicate information on the late effects of treatment and recommended follow-up care to clinicians and survivors. The primary aims of this study were to determine SCP content and format, as well as to assess the preferred timing of SCP provision following HSCT. HSCT survivors and nontransplantation clinicians (oncologists and primary care physicians) were invited to participate in a survey evaluating the usefulness and utility of a sample HSCT-specific SCP with a treatment summary generated by autopopulation from an electronic health record (EHR). All participating HSCT survivors (n = 29) and clinicians (n = 18) indicated a desire to receive an SCP. More than 85% of the participants perceived information about treatments received, recommended follow-up and health maintenance including vaccinations, survivor and clinician resources, and graft-versus-host disease and other late/chronic side effects to be useful. The majority of survivors also believed that care team contact information was useful. In addition, >85% of survivors and clinicians agreed that the SCP increased their understanding of treatments and chronic/late side effects, improved health care provided, and were satisfied with the SCP and found it understandable and easy to use. The majority of survivors indicated that additional information should be added to the SCP, whereas some clinicians deemed the SCP too long. Survivors preferred to receive the SCP as a paper document at the end of a regular follow-up visit and review it with a cancer clinician, whereas clinicians preferred to receive the SCP through the EHR. These findings will help improve the design of future SCPs for use by HSCT survivors and clinicians. Future work will include leveraging the EHR to ease the burden of creating usercentered documents.

Realist Review of Care Models That Include Primary Care for Adult Childhood Cancer Survivors

“…The second subtheme associated with Context A discusses managing information in EHRs. Multiple studies in adult survivors of adult cancers addressed the role of the EHRs ( 40 , 41 , 64 , 65 ). Advantages of using EHRs to create and provide SCPs include reducing time and resources to compile information, producing an electronically searchable document, and facilitating plan updates when needed ( 65 ).…”

“…Multiple studies in adult survivors of adult cancers addressed the role of the EHRs ( 40 , 41 , 64 , 65 ). Advantages of using EHRs to create and provide SCPs include reducing time and resources to compile information, producing an electronically searchable document, and facilitating plan updates when needed ( 65 ). However, for EHRs to support effective SCP use, discrete data capture is required, organization policies and technologies should support clinician needs, and survivorship-related tasks must be clearly assigned ( 65 ).…”

Understanding Posttreatment Patient‐Provider Communication and Follow‐Up Care Among Self‐Identified Rural Cancer Survivors in Illinois

“…A potential explanation for the mixed results on the value of written communication to follow-up care adherence is that providers and survivors report important barriers to fully implementing a written care plan. 46,47 The consequences of inconsistent implementation of written posttreatment patient-provider communication can potentially increase measurement errors and limit the interpretation of the findings. Emerging investigations should continue to identify the most functional elements of care plans for providers to initiate posttreatment communication to minimize patient information burden and provider administrative duties.…”

“…Emerging investigations should continue to identify the most functional elements of care plans for providers to initiate posttreatment communication to minimize patient information burden and provider administrative duties. 47 There are many challenges associated with recruiting a substantial, diverse, representative sample of exclusively rural respondents. Our study offers an important set of "lessons learned" for obtaining in-depth data from rural cancer survivors, especially regarding data not routinely collected in public health surveillance systems.…”

Evolution and Innovation in Hematopoietic Cell Transplantation and Cellular Immunotherapy: Critical Updates in Therapeutics

“…This leads to a lack of understanding and confidence on the part of these providers when faced with HCT patients under their care. 3 In this issue of Pharmacotherapy, a special section has been dedicated to important topics relevant to the care of HCT patients. The authors' aim in presenting these articles is not to provide a basic review of HCT but rather to deliver upto-date, detailed information regarding each of their topics.…”