Patient and Provider Preferences for Survivorship Care Plans for Allogeneic Hematopoietic Cell Transplantation (HCT) Survivors: A Qualitative Study

There is a critical need to increase awareness of late complications and recommended preventive care among patients and providers and to improve patient-provider and provider-provider communication about long-term care post-HCT. During transition from transplant center back to community, care often becomes fragmented and insufficient to address survivors' complex medical needs. We conducted focus groups to characterize patient-centered elements that will increase the acceptability of an individualized treatment summary and survivorship care plan instrument (SCP). A SCP was developed that uses disease and transplant related data routinely submitted by centers to the CIBMTR. The treatment summary incorporates these data and identifies important treatment exposures (age, gender, HCT type, GVHD, TBI and steroid). The care plan uses these risk factors and long-term followup guidelines (Majhail et al, BBMT/BMT 2012) to provide patient-specific recommendations for preventive care. Phone focus groups (N=12) were conducted for: 1) adult allogeneic recipients >1 year post-HCT and their caregivers (3 groups, N=22); 2) hematology-oncology and primary care practice physicians/mid-level providers (3 groups, N=24); 3) HCT clinicians (2 groups, N=14); and 4) HCT nurses/social workers (4 groups, N=17). Transcripts were coded and analyzed for saturation of key themes (Figure 1). Reliability and validity of coding were assessed (kappa >.90). Patients/caregivers reported challenges in accessing specialty care due to providers' unfamiliarity with HCT and felt SCP should be more personalized with robust sections on psychosocial, sexual/mental health, and nutrition/diet. Providers wanted the treatment history to focus only on what they must know to care for their patient and found SCP markedly better than what they currently receive. All preferred to receive SCP electronically; however, hardcopy was still considered necessary for patients without computer access. Both patients and providers identified that SCP will facilitate appropriate post-HCT care. Similar themes were identified among the three health professional groups, with the exception of screening and care for psychosocial issues that was more frequently brought up by the nurses/social workers. Our study highlights the need for a SCP instrument to facilitate HCT survivorship care. Patient and provider feedback has been used to develop a final SCP that is being tested in a randomized trial.