Barriers and facilitators to the use of survivorship care plans by hematopoietic stem cell transplant survivors and clinicians.

PURPOSE: Survivors of hematopoietic stem cell transplants (HSCT) have complex care needs for the remainder of their lives, known as the survivorship period. Survivorship care plans (SCPs) have been proposed to improve care coordination and ultimately survivorship outcomes. We explored the barriers and facilitators of SCP use among HSCT survivors and their clinicians in order to develop more useful SCPs for the HSCT context. METHODS: Analogous surveys regarding perceived barriers to and facilitators of SCP use based on a sample SCP for a female allogenic HSCT survivor were administered to HSCT survivors and non-transplant oncology and primary care clinicians. RESULTS: Twenty-seven HSCT survivors and 18 clinicians completed the survey. The main barriers to SCP use were lack of awareness of SCP existence, uncertainty regarding where to find SCP, unclear roles and responsibilities among healthcare teams, length of SCP, and difficultly understanding SCPs. The facilitators of SCP use were increased understanding of survivorship care needs, clarified roles and responsibilities of survivors and clinicians, SCPs that are readily available and searchable in electronic health record, increased awareness of SCP existence and provision to all survivors, and if the SCP is survivor-specific and up-to-date. CONCLUSIONS: Much of the work regarding SCPs has looked at barriers to creation and provision; however, our study examines factors influencing use of SCPs. By determining the barriers and facilitators surrounding SCP use for HSCT survivors and their clinicians, we can create SCP templates and clinical workflows to optimize SCP use, ideally leading to better outcomes for HSCT survivors.

Re-engineering Survivorship Care Plans to Support Primary Care Needs and Workflow: Results From an Engineering, Primary Care and Oncology Collaborative for Survivorship Health (EPOCH).

Maintaining the health of survivors requires communication, collaboration and care coordination between oncology and primary care. Primary care clinicians have been acknowledged as important recipients of survivorship care plans (SCPs); however, current SCP templates have not been evaluated for usefulness in the primary care context. We surveyed and interviewed primary care clinicians from a rural research network regarding SCP content, format and layout (phase 1), and potential use and clinical workflows around SCPs (phase 2). Based on these data, an existing SCP template was iteratively redesigned to better support survivorship care in the primary care setting. A total of 13 clinicians (9 MDs, 4 APPs) participated. Interviewees advocated for maintaining a single SCP document shared by survivors and clinicians. Changes to the SCP template included prioritizing follow-up over summary of treatment and removing or down-playing screening recommendations not impacted by cancer or cancer treatment. The re-engineered SCP was regarded as highly relevant for survivors, but clinicians noted the significant effort to "disassemble" SCPs in order to enter the information into on the receiving health record. Primary care clinicians value the information in SCPs but had important recommendations regarding content, layout, and format. Additionally, a significant effort appears to be required by recipients in order to extract SCP information for future use.

Results of Engineering, Primary Care, Oncology Collaborative Regarding a Survey of Primary Care on a Re-Engineered Survivorship Care Plan.

Survivorship care plans (SCPs) may facilitate cancer survivorship care shared between oncologists and primary care, particularly for patients more likely to receive care across healthcare systems such as rural patients. However, limited research has addressed primary care clinicians' information or workflow needs with regard to SCPs. This study's objective was to assess primary care clinicians' perceived usefulness with a re-engineered SCP previously developed by applying engineering approaches and informed by primary care preferences. An emailed survey of primary care clinicians assessed perceived usefulness with the re-engineered SCP. Clinicians were recruited across the USA from primary care practice-based research networks (PBRNs) with high concentrations of rural practices. Over 90% of respondents (n = 111) agreed that (1) the re-engineered SCP was useful (n = 95) and (2) they would want to receive a similar SCP (n = 93). The majority demonstrated high agreement regarding the SCP's relevance, understandability, content, and ability to help provide better survivorship care. Perceived usefulness was consistent between rural and non-rural clinicians. Suggested improvements involved decreased length, addition of a bulleted list, and electronic health record integration. Results indicate that the majority of primary care clinicians perceive the re-engineered SCP as useful. However, primary care clinicians indicated continued barriers despite end-user specific alterations. Future research should investigate additional strategies to support primary care survivorship-related workload, provide essential SCP content, and improve survivorship care delivery.

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

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 user-centered documents.

The Impact of a Primary Care Education Program Regarding Cancer Survivorship Care Plans: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

Survivorship care plans (SCPs) have been recommended as tools to improve care coordination and outcomes for cancer survivors. SCPs are increasingly being provided to survivors and their primary care providers. However, most primary care providers remain unaware of SCPs, limiting their potential benefit. Best practices for educating primary care providers regarding SCP existence and content are needed. We developed an education program to inform primary care providers of the existence, content, and potential uses for SCPs. The education program consisted of a 15-min presentation highlighting SCP basics presented at mandatory primary care faculty meetings. An anonymous survey was electronically administered via email (n = 287 addresses) to evaluate experience with and basic knowledge of SCPs pre- and post-education. A total of 101 primary care advanced practice providers (APPs) and physicians (35% response rate) completed the baseline survey with only 23% reporting prior receipt of a SCP. Only 9% could identify the SCP location within the electronic health record (EHR). Following the education program, primary care physicians and APPs demonstrated a significant improvement in SCP knowledge, including improvement in their ability to locate one within the EHR (9 vs 59%, p < 0.0001). A brief educational program containing information about SCP existence, content, and location in the EHR increased primary care physician and APP knowledge in these areas, which are prerequisites for using SCP in clinical practice.

Cancer Survivorship Care Plan Utilization and Impact on Clinical Decision-Making at Point-of-Care Visits with Primary Care: Results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health.

Every cancer survivor and his/her primary care provider should receive an individualized survivorship care plan (SCP) following curative treatment. Little is known regarding point-of-care utilization at primary care visits. We assessed SCP utilization in the clinical context of primary care visits. Primary care physicians and advanced practice providers (APPs) who had seen survivors following provision of an SCP were identified. Eligible primary care physicians and APPs were sent an online survey, evaluating SCP utilization and influence on decision-making at the point-of-care, accompanied by copies of the survivor's SCP and the clinic note. Eighty-eight primary care physicians and APPs were surveyed November 2016, with 40 (45%) responding. Most respondents (60%) reported discussing cancer or related issues during the visit. Information needed included treatment (66%) and follow-up visits, and the cancer team was responsible for (58%) vs primary care (58%). Respondents acquired this information by asking the patient (79%), checking oncology notes (75%), the SCP (17%), or online resources (8%). Barriers to SCP use included being unaware of the SCP (73%), difficulty locating it (30%), and finding needed information faster via another mechanism (15%). Despite largely not using the SCP for the visit (90%), most respondents (61%) believed one would be quite or very helpful for future visits. Most primary care visits included discussion of cancer or cancer-related issues. SCPs may provide the information necessary to deliver optimal survivor care but efforts are needed to reduce barriers and design SCPs for primary care use.