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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.

PURPOSE: This study aimed to develop a survivorship care plan (SCP) that could be individualized to facilitate long-term follow-up care of hematopoietic cell transplantation (HCT) survivors. METHODS: A sample SCP was developed that included two 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/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. RESULTS: Patients/caregivers suggested combining the treatment summary and care guidelines into one document. They also requested sections on sexual and emotion 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, though screening for psychosocial issues was emphasized more by the nurses/social workers. All preferred to receive the SCP electronically; however, hardcopy was considered necessary for some patients. All felt the SCP would facilitate appropriate post-HCT care. CONCLUSION: This study highlighted the need for an SCP instrument to facilitate HCT survivorship care. Furthermore, it demonstrated the feasibility and value of engaging HCT patients, caregivers and providers in developing a survivorship care tool. Their feedback was incorporated into a final SCP subsequently tested in a randomized trial.

Patient satisfaction is an important indicator of healthcare quality. Blood and marrow transplantation is a complex but potentially curative procedure for patients with life-threatening hematologic disorders. The Office of Patient Advocacy provides services and health education materials to transplant patients, caregivers, and family members. Satisfaction surveys help identify the specific needs of patients. This article reports findings from surveys administered to patients and family members. Key evaluation areas included: helpfulness of information and services provided and overall satisfaction with Coordinator services. Respondents were asked to describe follow-up actions taken as a result of the information/services provided and to recommend ways to improve these services. Transplant patients face complex treatment with high risks of morbidity, which may impact likelihood of survey response. The findings indicate that satisfied respondents were more likely to self advocate through follow-up actions. Respondent feedback was useful for improving Office of Patient Advocacy services.