Page 243 - 2019_05-HaematologicaMondo-web

Individualized care plans in HCT survivors
Figure 2. CONSORT diagram. N: number; SCP: Survivorship Care Plan.
of age on MCS scores, with older patients reporting signif- icantly higher scores (estimate 0.03, standard error 0.034; P<0.001), and there was a significant interaction between age and SCP intervention (P=0.012). However, increase in mean MCS score in the SCP arm was independent of gen- der, health literacy, diagnosis, transplant type, and GvHD status.
Utilization of Survivorship Care Plans
At their 6-month end-of-study assessments, patients on the intervention arm were asked questions about the use- fulness of the SCP for their survivorship care (Figure 3). A relatively large proportion of survivors reported that they found the SCP somewhat or very useful for helping them better understand their HCT and related treatments (70%), side effects of HCT (65%), and managing their health (69%). The SCP helped survivors better communi- cate about HCT and its side effects with their medical providers. The 6-month interview included an open- ended question about patients' experience with the SCP; dominant themes identified on qualitative analyses included patients reporting that the SCP helped survivors focus on their overall health, supported them in making care decisions with providers, and supported emotional health and coping.
Discussion
In this large multicenter RCT of HCT survivors 1-5 years post transplantation, we demonstrate that SCPs gen- erated using a centralized clinical registry (CIBMTR), indi- vidualized to patient exposures, and without clinician
contact to interpret or personalize their content and rec- ommendations, are feasible and have desirable outcomes, including lower treatment-related distress and improved mental health domain of HRQOL. Our results support fur- ther research towards broader implementation of our SCP instrument to facilitate care of HCT survivors, and pro- vides evidence to support a patient-centered approach towards administration of SCPs. SCPs have been endorsed as a tool for facilitating the care of cancer survivors with the goal of improving patient outcomes by promoting co- ordination of care, shared-decision making, self-manage- ment, and adherence to treatment recommendations.36,48 Evidence on their efficacy in impacting patients’ outcomes is mixed, and SCPs have not been universally adopted due to other barriers, such as the lack of standardized tem- plates, the need for extensive resources and time for their generation, and the lack of reimbursement for their imple- mentation.42,48-50 Transplant centers face similar challenges, and many programs have capacity limitations that fre- quently prevent provision of personalized comprehensive SCPs to their patients. Our SCP procedure provides sever- al advantages to patients and transplant centers. It uses data that centers routinely submit electronically to the CIBMTR and will provide a resource-effective mechanism for centers to generate the SCP for their recipients. Instead of receiving a generic SCP, patients can receive one that is specific to their treatment exposures. Our approach of facilitating patient ownership of survivorship care is dif- ferent from the prevalent non-transplant cancer literature where SCPs have largely been tested in a context in which clinicians provide them to their patients.37 Our SCP instru- ment was in a paper-based format and was mailed to patients; more general dissemination would require its
haematologica | 2019; 104(5)
1089