Over 50% of patients undergoing allogeneic BMT can now be expected to become long-term survivors. Unfortunately many experience significant late morbidity and mortality.

2. The experience of Survival following BMT in
NSW
Gemma Dyer, MPH, GradCert Onc, BN, RN
eviQ Content Author and MPhil Student (Usyd)

3. Overview
› 1. Background
› 2. The problem
› 3. What we did
› 4. What we found out
› 5. Implications
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4. Background
Allogeneic BMT…
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Proportions of disease indications for an allogeneic HSCT in Europe in 2013
• Worldwide ~ 40,000
• Australia = 495 (2013)
• NSW = 173 (2013) (35%)

5. Background
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Haematopoietic cell transplants by year and type

6. “The Problem”
oMalignant Disease:
• < 16yrs, 51 – 78%
• > 16yrs, 12 – 68%
oNon-malignant Disease:
• < 16yrs, 95%
• > 16yrs, 43-72%
Survival is improving
 10-year Survival (ABMTRR 1998 - 2013)
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7. “The problem” of survival post-BMT
› Relapse (15-30%)
› cGvHD (40-70%)
› Cardio-respiratory disease (20-40%)
› Endocrinopathies (>60%)
› Infertility (Most)
› Eye disease (>60%)
› Osteoporosis (>40%)
› Anxiety and depression, post-trauma
› Social dysfunction
› Isolation
› Secondary cancers (2-8 x)

8. The problem of survival post-BMT
› 59% risk of a chronic health condition by 10 years post BMT
› 3.5 x risk of a severe or life-threatening condition compared to siblings
› 30% lower life expectancy.
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9. Aims
1. Incidence and range of late complications
2. Health and functional status of survivors (not
causes of death)
3. Address gaps in evidence-base: eg financial,
psychosocial, occupational, sexual function, fertility
4. Identify gaps in service provision and create data
for advocacy
5. Inform practice and patient education

10. Methods
› Sampling frame
- Allogeneic transplant survivors, transplanted between Jan 1 2000 and Dec
31 2012 in NSW
› Instruments
- Sydney Post BMT Survey (402 questions, 20 sections)
- FACT-BMT
- cGVHD Activity Assessment
- Lee Chronic GVHD symptom scale
- Post traumatic Growth Inventory
- Fear of Recurrence scale
- Depression, Anxiety & Stress Scale (DASS) 21
- Clinical data form (transplant procedure)
Validated instruments

11. n=1475
Allogeneic BMT
2000-2012
n= 669
Allogeneic BMT survivors
806 (55%)
Deceased/status
unknown
n= 583 survivors (82.7%)
contacted, sent survey
n= 443 survivors (66%)
Returned Completed questionnaire
86 Unable to be contacted
17 (3%) declined consent
123 surveys not returned
Results

12. asdasdDemographicsS
Variable Results
Median survival 5 yrs (Range :1 yr 4 months- 22 yrs)
Median age at survey 54 yrs (Range :19 yrs-79 yrs)
Gender 252 (57%) male
Culture/ethnicity 324 (87%) Australian/European
Education Completed High School (23.6%)
Completed University (39.1%)
Trade/diploma/part high school (37.3%)
Annual Household income Low <$40,000 (36.5%)
Middle $40- <$80,000 (29.2%)
High >=$80,000 (34.3%)
Residential location 92% major city/inner regional;
8% outer regional/remote
Relationship status 71% married; 8% defacto
21% single/separated/divorced
Results

13. Transplant details
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14. Post BMT morbidity - cGvHD
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15. Post BMT morbidity –chronic diseases
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16. Post BMT morbidity – sexual dysfunction
FERTILITY/SEXUAL FUNCTION
MALES
Variable
Decrease sexual enjoyment 45 (36.1%)
Erectile dysfunction 99 (78.6%)
Pain with Intercourse 12 (10.6%)
Decreased libido 78 (61%)
Difficulties with partner regarding sex 44 (37.3%)
Any of the above 125 (93.3%)
FEMALES
Variable
Decrease sexual enjoyment 76 (74.5%)
Pain with Intercourse 73 (69.5%)
Decreased libido 88 (82.2%)
Difficulties with arousal 60 (60.6%)
Difficulties with partner regarding sex ( 36 (37.5%)
Any of the above 104 (89.7%)
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17. Post BMT morbidity - infections
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Infection Result (n, %)
Recurrent colds 92 (22.8%)
Influenza 161 (38.2%)
Pertussis 11 (2.7%)
Pneumococcal disease 21 (5.0%)
Haemophilus influenzae type B 12 (2.9%)
Tuberculosis 3 (0.7%)
Hepatitis A 1 (0.24%)
Hepatitis B 6 (1.4%)
Hepatitis C 4 (0.9%)
Varicella Zoster Infections
Primary (Chicken Pox)
Zoster/shingles
19 (4.5%)
118 (28%)
Measles 3 (0.7%)
Mumps 2 (0.5%)
Rubella 2 (0.5%)
Pap smear abnormalities 18 (9.8%)
Genital warts
Male
Female
12 (5.2%)
3 (1.6%)
Meningococcal disease 0 (0%)
Fungal infections
Mucocutaneous
(thrush/candida/skin)
Aspergillosis/Lung/sinus
Onychomycosis (nails)
Invasive mycosis (prosthetic
valve)
Not specified
59 (14.4%)
28 (6.9%)
15 (3.6%)
7 (1.7%)
1 (0.2%)
8 (1.9%)
Any vaccine preventable disease
On routine immunisation
schedule
(Pertussis, Haemophilus,
Pneumoccus, Hep B, influenza)
184/443 (41.5%)

18. Post BMT morbidity – vaccination update
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19. Post BMT morbidity – secondary cancers
› 24.1% reported a diagnosis of at least once cancer following BMT
› 21.2% skin cancer
› 1.6% oral cancers
› 4.4% other cancers
- Bladder/prostate (4)
- Breast (2)
- Secondary haematological malignancy (3)
- PTLD (1)
- Bowel (1)
- Ovarian (1)
- Sarcoma (1)
- Not specified (4)
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20. Post BMT social changes – household income
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21. Post BMT social changes – employment status
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22. Post BMT social changes – relationship status
› 39% relationship status remained
unchanged
› 23% began a new relationship
› 43% divorced
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23. Conclusions
› BMT survivors in NSW:
- experience a high incidence and a broad range of physiological
and psycho-social complications
- suffer from loss of employment, income and social reintegration
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24. Implications
› This data should be used develop a Model of Care which is sustainable,
cost-effective and consistent with patient needs:
- Long term follow up of BMT survivors is vital
- Dedicated MDT with include the BMT centre and survivors GP appears
most suitable
- This in will hopefully lead to:
- Reduced morbidity and mortality related to BMT survival
- Improved Quality of Life post BMT
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25. Acknowledgements
› Agency for Clinical Innovation BMT Network
› BMT Physicians, Researchers, Data Managers, BMT CNCs at each site:
› Primary Research Team: Lisa Brice, Nicky Gilroy, Masura Kabir, Ian
Kerridge
› RNS: Matthew Greenwood, Kelly Wong, Julian Lindsay, Jennifer Smith,
Chris Poon, Grace Gifford
› StVH: John Moore, Jeff Tan, Karim Ibrahim,
› RPA: Stephen Larsen, Ann-Marie Johnston, Paris Manii
› Westmead: John Kwan, Mark Hertzberg, Megan Hogg, Gillian Huang,
Mark Schifter
› Newcastle: Louisa Brown
› Patients
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