A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey.

Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center. Methods: We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation. Results: The AB generated a 59-item-modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item-modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders. Conclusions: The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.

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.

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.

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.

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.