Tailoring a Survivorship Care Plan: Patient and Provider Preferences for Recipients of Hematopoietic Cell Transplantation.

This study aimed to develop a survivorship care plan (SCP) that can be individualized to facilitate long-term follow-up care of hematopoietic cell transplantation (HCT) survivors. A sample SCP was developed that included 2 documents: a treatment summary and preventive care recommendations that combined data on treatment exposures routinely submitted by HCT centers to the Center for International Blood and Marrow Transplant Research (CIBMTR) with long-term follow-up guidelines. Focus groups were conducted by phone to characterize the critical patient-centered elements of the SCP. Focus group eligibility criteria included (1) adult patients >1 year post-HCT and their caregivers (3 groups; n = 22), (2) HCT physicians and advanced practice providers (APPs) (2 groups; n = 14), (3) HCT nurses and social workers (4 groups; n = 17), and (4) community health care professionals (3 groups; n = 24). Transcripts were analyzed for saturation of key themes using NVivo 10 software. Patients and caregivers suggested combining the treatment summary and care guidelines into a single document. They also requested sections on sexual and emotional health and the immune system. Providers wanted the treatment summary to focus only on what they absolutely must know. Themes were similar across healthcare professionals, although screening for psychosocial issues was emphasized more by the nurses and social workers. All preferred to receive the SCP electronically; however, hardcopy was considered necessary for some patients. All felt that the SCP would facilitate appropriate post-HCT care. This study highlights the need for an SCP instrument to facilitate HCT survivorship care. Furthermore, it demonstrates the feasibility and value of engaging HCT recipients, caregivers, and providers in developing an SCP. Their feedback was incorporated into a final SCP that was subsequently tested in a randomized trial.

Designing and operationalizing a customized internal evaluation model for cancer treatment support programs.

Be The Match® Patient and Health Professional Services (PHPS) supports patients undergoing hematopoietic cell transplant (HCT) and caregivers by providing educational programs and resources. HCT is a potentially curative therapy for blood cancers such as leukemia and lymphoma. To help meet the increasing demand for support services, PHPS implemented a multipronged plan to build and sustain the organization's capacity to conduct evaluation of its programs and resources. To do so, PHPS created and operationalized an internal evaluation model, developed customized resources to help stakeholders incorporate evaluation in program planning, and implemented utilization-focused evaluation for quality improvement. Formal mentorship was also critical in the development of an evidence-based, customized model and navigating inherent challenges throughout the process. Our model can serve as a guide for evaluators on establishing and operationalizing an internal evaluation program. Ultimately, we seek to improve support and education services from the time of diagnosis through survivorship.

Application and Evaluation of Survivorship Care Guides for Hematopoietic Cell Transplantation Recipients.

Hematopoietic cell transplantation (HCT) is a treatment for hematologic malignancies and disorders. Patients who receive HCT can face long-term physical and psychosocial effects. Survivorship care guides (care guides), which describe screening and preventive care practices were mailed to allogenic HCT recipients at clinically important timepoints (6, 12, and 24 months after HCT). The primary objective of this study was to evaluate how patients perceived and used the care guides. A cross-sectional, time-series survey was sent to all National Marrow Donor Program/Be The Match allogeneic HCT recipients from September 2012 to November 2016 after the care guides were sent; patients or caregivers could respond. Respondents who returned all 3 surveys were included (554 patients; 65 caregivers), for an overall response rate of 13% (maintenance rate of 45%). The majority of patients and caregivers strongly agreed or agreed that the care guides helped them understand that post-HCT care is important to staying healthy and that they were more familiar with recommended tests at check-up appointments. Most patients who did not share the care guides with their doctors at any of the timepoints believed their doctor knew which tests were needed. Results from this study can help inform and guide development of future tools and evaluations of educational resources for patients after HCT. Tools and educational resources, such as survivorship care guides, have the potential to help empower patients to be more knowledgeable and to understand and advocate for their survivorship care needs.

Barriers to accessing health care for hematopoietic cell transplantation recipients living in rural areas: perspectives from healthcare providers.

Hematopoietic cell transplantation (HCT) is a curative therapy for patients with malignant and nonmalignant bone marrow disorders. Life after transplantation can vary significantly among HCT recipients, who deal with a variety of physical and emotional issues. This presents numerous challenges, particularly for rural recipients who are required to travel long distances to access specialized HCT care. The objective of this study was to better understand barriers to providing care for HCT recipients living in rural areas. This study uses a cross-sectional design to collect primary data via an Internet survey of HCT healthcare providers. The authors analyzed factors restricting post-HCT care and whether having standard post-transplantation care instructions influenced the resources provided to distant-to-care recipients. Respondents reported limited transportation, coordination of care, and distance to facility as major barriers to post-HCT care, regardless of the number of distant-to-care recipients treated annually. HCT centers with standard post-transplantation care instructions were more likely to provide visits from social workers and medical leave resources to distant-to-care recipients. These instructions may improve recipient and local provider ability to make informed decisions regarding post-HCT care. The findings will help guide the development of programs and resources targeted to recipients of HCT who are distant to care.