The Children’s Hospital at Westmead (CHW) Sydney performs 25-35 blood and marrow transplants (BMT) a year. Referrals for transplant are for both malignant (60%) and non-malignant disease (40%) for children aged between 4 weeks old to 17 years old. The paediatric BMT follow-up Nurse Practitioner (BMT FU NP) service was established to provide survivors of transplant ongoing lifelong follow-up.
The aims of this service are to assess and manage the chronic complex consequences of BMT and to transition patients to appropriate adult services for ongoing follow up. These consequences can manifest at any time post-transplant including well into adulthood, and these consequences cross many disciplines.
Whilst we have transitioned a handful of patents in crisis to adult services, 13% of our survivors are ready to transition due to their age with no clear process and continue to be seen in the paediatric service. Post-BMT survivors present with a mixture of issues including blending life-long surveillance with the surveillance for recurrent or new illnesses. The diversity in models of care across the continuum from paediatrics, AYA, adults and transition all highlight advantages and disadvantages to our paediatric survivors, however the pathway for transition in this population is blurred. Transitioning follow-up also remains challenging for many of our patients who were transplanted for non-malignant disorders. Until BMT FU clinics in the adult services can accommodate paediatric survivors, those beyond the age of 18yrs will remain in the care of paediatric services. The role of the paediatric BMT FU NP has extended to include advocating for transitioning paediatric survivors through networking, promoting service delivery standards, models of care scripting and continuing discussions with adult services.
This paper will discuss the a. rational for life long follow-up for BMT survivors and b. the barriers to transition.