Blood and Marrow Transplantation Long Term Follow Up (LTFU) Project

Aim

The primary goal of this project is to develop clinical guidelines for management of patients following allogeneic blood and marrow transplant. The guidelines apply to adult patients and patients transitioning between paediatric and adult services, across metropolitan, regional, and rural areas.

Benefits

LTFU assists early recognition of complications, survival and quality-of-life issues for patients post-BMT transplant. 

These benefits have been supported by recently published guidelines including the Joint Recommendations of the European Group for BMT, the Centre for International BMT Research, and the American Society of BMT (1).

Summary

BMT is regarded as an important treatment modality for a number of patients with haematological malignancies. As techniques develop, transplant patients are living longer, and because of the long-term health implications it is likely that allogeneic transplant patients will never become non-patients (2).

The lifelong follow-up of BMT patients has been recommended to assist in the quality of survival. 

Allogeneic transplant patients need to be followed up for life due to the potential side effects of BMT ‘conditioning’ or chemotherapy treatment.

Currently, in many adult units, the patients are only followed up in the generalist outpatient clinic which has inadequate access to specialist practitioners such as ophthalmologists, endocrinologists and psychologists. Although these services are available at the centres performing BMT, much follow-up is done in a series of outreach clinics supported by the referral hospitals in Sydney.

Background

There are increased numbers of children who have undergone BMT, transitioning to adult health care services in NSW, and increasing numbers of patients surviving BMT and requiring long-term chronic care.

Whereas previously BMT services were concerned primarily with acute care, increasingly, health services must be able to provide long-term care to survivors of BMT.

There is a significant risk of complications to the patient post-BMT during the period of their hospitalisation, however following discharge the complications specifically related to long-term survival include:

  • Chronic Graft versus Host Disease (GVHD)
  • Cataracts
  • Loss of bone density
  • Second cancers
  • Relapse of original disease
  • Psychosocial and mental health issues
  • Quality-of-life issues
  • Employment.

LTFU has an important role in the early detection of these complications. Monitoring and evaluation of a patient’s health status will assist in the detection of complications thus promoting early intervention in diagnosis and treatment. New research papers are now identifying other cancers following BMT a decade before.

The diagnostic phase of the LTFU clinical guideline was informed by:

  • First-hand experience of long-term follow-up care in several tertiary hospitals
  • Patient interviews
  • Field visits to several long-term follow-up clinics in the United States (supported by Churchill Trust)
  • Post-BMT survey of long-term survivors
  • Literature review
  • Stakeholder consultation.

Partnerships

  • Project working group members
  • Blood and Marrow Transplant Network Council
  • Agency for Clinical Innovation Executive
  • Chief Executives of Local Health Districts
  • Ministry of Health
  • Australian Blood and Marrow Transplant Recipient Registry
  • Leukaemia Foundation

Key Dates

2010

On-site Research

2012

Diagnosis Report: the diagnostic phase of this project was informed by key activities regarding the chronic care for long-term allogeneic BMT survivors.

2012

Part time LTFU nurse appointed at Westmead Hospital.

2013The Experience of Survival Following Bone Marrow Transplant in Sydney Australia.
2015

LTFU nurse appointed at Royal Prince Alfred Hospital.

2016

Release of clinical guidelines for LTFU and report from post-transplant survey.

Pilot Sites

Implementation Sites

Evaluation

Further Monitoring and Evaluation to be developed with the ACI Health Economics and Evaluation Team.

Next steps: develop minimum dataset to monitor uptake of the clinical guidelines.

Related Initiatives

Further Details

References

1. Rizzo JD, Wingard JR, Tichelli A, Lee SJ, Van Lint MT, Burns LJ, et al. Recommended Screening and Preventive Practices for Long-term Survivors after Hematopoietic Cell Transplantation: Joint Recommendations of the European Group for Blood and Marrow Transplantation, the Center for International Blood and Marrow Transplant Research, and the American Society of Blood and Marrow Transplantation. Biology of Blood and Marrow Transplantation. 2006;12(2):138-51.

2. Tichelli A, Bucher C, Rovó A, Stussi G, Stern M, Paulussen M, et al. Premature cardiovascular disease after allogeneic hematopoietic stem-cell transplantation. Blood. 2007;110(9):3463-71.

Contact

Fidye Westgarth
BMT Network Manager
fidye.westgarth@health.nsw.gov.au
02 9464 4627

Daniel Comerford
Director, Acute Care
daniel.comerford@health.nsw.gov.au
02 9464 4602

Page Top | Added: 8 November 2013 | Last modified: 5 August 2016