Caring for Your Future Health: Long Term Follow Up and Late Effects Clinic
23 February 2015 Last updated:
20 April 2021
Caring for Your Future Health
Long Term Follow Up (LTFU) and Late Effects Clinic (LEC)
Westmead Hospital is the largest allogeneic Blood and Marrow Transplant (BMT) centre in NSW, performing more than 1000+ transplants since 1981. Since then there have been improved outcomes and Westmead have a number of long term survivors post BMT, which continues to grow annually.
This has required a shift in the model of care that is provided to address the survivor’s needs. In 2012, Westmead BMT developed a formalised multidisciplinary team (MDT) approach to Long Term Follow Up (LTFU). This included the opening in 2013 of NSW’s first Late Effects Clinic (LEC) catering for survivors two or more years post BMT. It has proven to be integral in ‘preventing and detecting later complications and establishing long term health’1.
This project was a finalist in the 2014 Western Sydney Local Health District Quality Awards.
To enable an optimal quality of life by preventing, managing or treating the long term health issues associated with BMT survivors.
- Increased BMT survivor satisfaction
- Avoidance of unnecessary hospital admissions
- Reduction in wait times due to more structured and efficiently run clinic
- Increased use of external blood collection centres by both regional and metropolitan clients
- Improved continuity of care
- Improved education of clients with recommended guidelines for LTFU
- Improved communication and support between both the survivor and the health service in the prevention, assessment and planning of LTFU and LEC
- Better access to care due to partnerships developed with public, private and not for profit sectors across NSW/ACT
- Increases in referrals and earlier intervention due to MDT input in the clinic.
The project started in February 2012.
Sustained: The project has been implemented, is sustained in standard business.
In Australia, the overall survival of allogeneic BMT survivors has risen from 21% in 1992-1997 to 40% in 1998-2005 according to the Australian BMT Recipient Registry2. For many the cure or control of their underlying disease is not accompanied by full restoration of health. Increasingly, late effects of BMT are being widely recognised in survivors3 . Internationally, survivorship and LTFU has been embedded in BMT programs, but unfortunately in Australia, there are few established LTFU BMT services for survivors4.
A local study conducted through St Vincents Hospital identified that many BMT survivors are living with one or more long term complications that warrant ‘lifelong surveillance and engagement with healthcare’2. In addition, allogeneic transplantation is a highly specialised treatment, currently offered in five metropolitan hospitals in NSW. Westmead provides a service for all of Western Sydney, Blue Mountains, Newcastle, Wollongong and Canberra. Over 40% of patients who have a transplant at Westmead live >100kms from the hospital. Many survivors continue to travel to Westmead for their follow up care.
Implemented in 2012, the BMT services at Westmead, reviewed practices and developed a formalised approach to LTFU to improve service delivery for all who attend the clinic. Solutions included:
- An appointment system was implemented to stagger patient arrival times to clinic
- Access to external blood collection for regional and metropolitan clients
- LTFU/LEC meetings on a quarterly basis at minimum. This allows the opportunity for review of the operational log which is used to track progress and help plan and define service.
- Acquirement of MDT to partner with the LTFU/LEC in service provision.
- Improved communication with MDT, general practitioners (GPs), referring hospitals, community based organisations and private sector through formalised shared care/team arrangements.
- Development of the Survivorship Care Plan (SCP)/clinical summary which is well supported in the literature and is emerging as one element that helps improve co-ordinated care for the survivor1,5,6. It is an individualised plan that includes guidelines for monitoring and maintaining health for the client. Copy given to client and any other specialist involved in the care of their LTFU needs.
- Cancer Council Survivorship Unit NSW
- The Alfred Late Effects Clinic, The Alfred Hospital, Melbourne
- ACI BMT Network NSW
- Douglass Hanly Moir
- Pathology West
- Newcastle Calvary Mater Hospital, Newcastle
- Westmead Hospital, Western Sydney Local Health District
- This service has been running sustainably for two years.
- MDT involvement has resulted in more referrals and earlier intervention.
- Increased survivor satisfaction – verbal reports from clients.
- Increased referral to the LEC, which is well attended.
- Shared vision of improving the quality of life of the BMT survivor.
- Open communication which allows opportunity for new ideas and opinions to be expressed to further improve the service.
With continual growth of the BMT service, the processes and structures will become more difficult to maintain. The Cancer Council of NSW estimates “128,000 new cases of cancer will be diagnosed in Australia this year, with numbers set to rise to 150,000 by 2020” and more than 60% will survive more than five years after diagnosis7. Eakin et al8 found that many cancer survivors have a significant decline in their health status, which is further exacerbated by the presence of co-morbid conditions. This suggests that there needs to be increased attention given by the health care system in managing the long term health needs of all cancer survivors. Development of a LTFU or LEC that sits across the broader oncology service within each health service would assist in addressing this issue.
- Beavers, J. and Lester, J. 2010, Survivorship Care for Adult Recipients of Haemopoietic Cell Transplantations, Clinical Journal of Oncology Nursing, vol. 13, no. 2, pp 136 – 139.
- Gifford, G., Sim, J., Horne, A. and Ma, D. 2013 Health status, late effects and long term survivorship of allogeneic bone marrow transplantation: a retrospective study, Internal Medicine Journal, pp 139 – 147.
- Beer, G., James, M. and Summers, S. 2013, A Road Map for Recovery: Ensuring every patient finds the care they need after bone marrow transplant, Anthony Nolan, United Kingdom, viewed 10 June 2014, http://www.anthonynolan.org/
- Dyer, G 2012 Report: To investigate models of care in well-established Long Term Follow Up (LTFU) & Survivorship Programs in leading international Blood & Marrow Transplant (BMT) Centres. The Winston Churchill Memorial Trust of Australia.
- Curico, K., Lambe, C., Schneider, S and Khan, K 2012. ‘Evaluation of a Cancer Survivorship Protocol: Transitioning Patients to Survivors’, Clinical Journal of Oncology, vol. 16, no. 4, pp 400-406.
- Majhail, NS., Rizzo, JD., Lee, SJ., Alijurf, M., Atsuta, Y., Bonfim, C., Burns, LJ., Chaudhri, N., Davies, S., Okamoto, S., Seber, A., Socie, G., Szer, J., Van Lint, MT., Wingard, JR. and Tichelli, A 2012, Recommended screening and preventative practices for long-term survivors after hematopoietic cell transplantation, Bone Marrow Transplantation vol. 47, pp 1-22.
- Help Life Get Better, Cancer Council NSW 2012, viewed 17th June 2014, http://www.cancercouncil.com.au/get-support/when-treatment-finishes/help-life-get-better-after-cancer-treatment/
- Eakin, EG., Youlden, DR., Baade, PD. et al 2006 Health Status of Long-term Cancer Survivors: Results from an Australian Population-Based Sample, Cancer Epidemiology, Biomarkers & Prevention, vol. 15, no. 10, pp 1969-1976, viewed 5th June 2014, downloaded from cebp.aacrjournals.org
- Institute of Medicine of the National Academies. 2006. Fact Sheet: Cancer Survivorship Care Planning, USA. Viewed 16th June 2014.
- Jefford, M., Karahalios, E., Pollard, A., Baravelli, C., Carey, M., Franklin, J., Aranda., S and Schofield, P 2008, ‘Survivorship issues following treatment completion – results from focus groups with Australian cancer survivors and health professionals’, Journal of Cancer Survivor, vol 2, pp 20-32.
- National Comprehensive Cancer Network 2014. USA.
- National Marrow Donor Program. 2013. Be The Match.
- NSW Ministry of Health. 2014. NSW State Health Plan: Towards 2021. Sydney, NSW.
- The Alfred. 20111. The Alfred Late Effect Clinic. Melbourne, Victoria.
Megan HoggClinical Nurse Specialist 2, Long Term Follow Up, Blood & Marrow Transplant
Western Sydney Local Health District
Phone: 02 9845 8071
Professor Ken BradstockSenior Staff Specialist in Haematology
Western Sydney Local Health District
Phone: 02 9845 7073
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