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Individualized care plans in HCT survivors
Introduction
It is estimated that there will be 250,000 hematopoietic cell transplantation (HCT) survivors in the US by 2020.1 Patients who survive the period of early complications and disease relapse (generally 1-2 years after transplanta- tion) can expect a high probability of subsequent long- term survival.2-7 Although potentially cured of their under- lying disease, HCT survivors continue to be at risk for late complications that can cause substantial morbidity, mor- tality, and functional deficits, and contribute to psychoso- cial and quality of life impairments.8-23 Established sur- vivorship guidelines provide a pragmatic approach to the long-term follow up of autologous and allogeneic HCT survivors by recommending a minimum set of screening and preventive evaluations that need to be performed periodically post-transplantation.24,25
Hematopoietic cell transplantation survivors frequently do not receive or adhere to preventive care guidelines.26-28
Many barriers contribute to the inadequate provision of co-ordinated patient-centric survivorship care in this patient population.29-31 Among these, a lack of awareness of exposures and risks by patients is strongly associated with a lower likelihood of adherence to preventive care recommendations.26 In addition, both transplant and non- transplant providers identify lack of knowledge of risks of late complications and of awareness of guidelines as bar- riers to providing adequate preventive care.32 Finally, capacity limitations at transplant centers may impede pro- vision and co-ordination of preventive care to HCT sur- vivors.29,33-35 Interventions to enhance patient awareness of preventive care could potentially enhance appropriate healthcare utilization and adherence to survivorship guidelines, although this approach has not been previous- ly tested.
A treatment summary and Survivorship Care Plan (SCP) is a tool that provides cancer survivors with information on their cancer type, treatments and potential conse-
Figure 1. Study schema. CIBMTR: Center for International Blood and Marrow Transplant Research; SCP: Survivorship Care Plan.
haematologica | 2019; 104(5)
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