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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. For survivors of BMT therefore, it is crucial that they have access to high quality, expert, integrated healthcare in the years following transplantation.

What is long-term follow-up?

In the blood and marrow transplant related academic literature definitions for the following have been specified: late complications include all events occurring beyond 3 months. However, these can be separated into delayed (3 months to 2 years), late (2 to 10 years) and very late (>10 years).1

When ‘long-term follow-up’ is referred to in ACI Blood and Marrow Transplant Network literature it is encompassing the follow up of patients who have had a blood transplant and are now in the late (2 to 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

201620162017201720182019

The Sydney
Post-BMT Survey

Clinical Guidelines

ABMTRR LTFU
Data Module

Report to be finalised

Experience-based
Co-design

Education and Communication Project

Transition and Coordination Project

Three Primary Goals:

Patient Screening record for Long-term Follow-up (LTFU)

FACT Sheets common complication

Transition pathways for Adolescents

Get Involved

To get involved, please fill out the Join the Network form and note the LTFU Project in the 'Comments' section