What They Want: Inclusion of Blood and Marrow Transplanation Survivor Preference in the Development of Models of Care for Long-Term Health in Sydney, Australia

Abstract

Four hundred forty-one adult allogeneic blood and marrow transplantation (BMT) survivors participated in a cross-sectional survey to assess long-term follow-up (LTFU) model of care preference. Survey instruments included the Sydney Post BMT Survey, Functional Assessment of Cancer Therapy-BMT, Depression Anxiety Stress Scales 21, the Chronic GVHD Activity Assessment-Patient Self Report (Form B), the Lee Chronic GVHD Symptom Scale and the Post-Traumatic Growth Inventory. We found most BMT survivors (74%) would prefer LTFU with their transplantation physicians alone or in combination with transplantation center-linked services (satellite clinics or telemedicine) Over one-quarter indicated a preference for receiving comprehensive post-transplantation care in a "satellite" clinic staffed by their BMT team situated closer to their place of residence, with higher income, higher educational level, and sexual morbidity being significant social factors influencing this preference. Regular exercise was reported less often in those who preferred telemedicine, which may reflect reduced mobility. The factor most strongly associated with a preference for transplantation center follow-up was the severity of chronic graft-versus-host disease. Full- and part-time work were negatively associated with transplantation center follow-up, possibly implying decreased dependency on the center and some return to normalcy. This study is the first to explore the preferences of BMT survivors for long-term post-transplantation care. These data provides the basis for LTFU model of care development and health service reform consistent with the preferences of BMT survivors.

Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation

“…Most of the patients in our study preferred a one-to-one communication process rather than self-help groups. This result highlights the need for personal conversation within this special patient cohort and is in line with an Australian survey reporting that the majority of patients preferred long time follow up with their transplant physician (Dyer et al 2016 ). At our institution we offer a survivorship care plan and lifelong surveillance following allogeneic HSCT.…”

Pilot Study of Telehealth Evaluations in Patients Undergoing Hematopoietic Cell Transplantation

“…Patients found the telehealth platform acceptable overall and favored telehealth follow-up over in-person follow-up in general and particularly for well visits. This mirrors findings from an Australian study in which severity of chronic graft-versus-host disease was the factor most strongly associated with patient preference for transplant center follow-up over the provision of care through a satellite site or telemedicine [14].…”

Clinicians and patients perspectives on follow-up care and eHealth support after allogeneic hematopoietic stem cell transplantation: A mixed-methods contextual analysis as part of the SMILe study

“…Internationally, transplant centers' resources are strained in view both of the growing number of alloSCT survivors and of their complex long-term needs, particularly concerning selfmanagement support, care coordination and care continuity. As the prevailing care models focus predominantly on detecting and managing acute problems, they mostly lack an integrated care approach (Khera et al, 2017;Majhail and Rizzo, 2013), i.e., one that addresses the entire care continuum-including the noted behavioral and psychosocial dimensions) (Bevans et al, 2017;Dyer et al, 2016).…”