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Background

Contact


Richard Makin
Blood and Marrow Transplant Network and Quality Manager


Email
richard.makin@health.nsw.gov.au


Blood and marrow transplant long-term follow-up (LTFU) project

Blood and marrow transplant (BMT) has an established role in the treatment of a range of haematological, immunological and metabolic conditions, and for many patients, provides the only possibility of long-term survival. At the same time, BMT may cause significant morbidity and mortality and is associated with a series of serious long-term effects, many of which may impact upon the transplant survivor’s life expectancy and quality of life. Therefore, it is crucial for survivors of BMT to have access to high quality, expert, integrated healthcare in the years following transplantation.

What is long-term follow-up?

In BMT-related academic literature, definitions for late complications, including all events occurring beyond three months, have been specified. These can be separated into delayed (three months to two years), late (2-10 years) and very late (>10 years).1

When ‘long-term follow-up’ is referred to in Blood and Marrow Transplant and Cellular Therapies Network literature, it encompasses the follow up of patients who had a blood transplant and are now in the late (2-10 years) and very late (>10 years) time period post-transplant.

Why is long-term follow-up important?

During the past 30 years, advances in BMT technology and techniques have resulted in an increase in both the number of people undergoing the procedure and the number becoming long-term survivors.

These survivors will be at increased risk of late complications resulting from their disease, its treatment and from BMT itself. These complications may impair not only physical functioning but may also have significant impacts upon a survivor’s psychosocial and emotional function, causing unemployment, relationship difficulties, financial hardship and social isolation.2 The collective impact of these complications is profound.

Project timeline

  • 2016
  • 2016
  • 2017

    Australasian Bone Marrow Transplant Recipient Registry (ABMTRR) LTFU Data Module (Report to be finalised)

  • 2017
  • 2018

    Education and Communication project Transition and Coordination project

  • 2020

    Primary Goals: Patient screening record for long-term follow-up (LTFU), fact sheets common complication, implementation of the LTFU data module

  • 2021

    Transition pathways for adolescents

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