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The experience of Survival following BMT in NSW

Gemma Dyer, MPH, GradCert Onc, BN, RN

eviQ Content Author and MPhil Student (Usyd)

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Overview

› 1. Background› 2. The problem› 3. What we did› 4. What we found out › 5. Implications

BackgroundAllogeneic 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%)

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Background

Haematopoietic cell transplants by year and type

“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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“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)

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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Aims1. 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, fertility4. Identify gaps in service provision and create data

for advocacy5. Inform practice and patient education

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

n=1475Allogeneic BMT

2000-2012

n= 669Allogeneic 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 consent123 surveys not returned

Results

asdasdDemographicsSVariable ResultsMedian survival 5 yrs (Range :1 yr 4 months- 22 yrs)

Median age at survey 54 yrs (Range :19 yrs-79 yrs)

Gender 252 (57%) maleCulture/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% defacto21% single/separated/divorced

Results

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Transplant details

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Post BMT morbidity - cGvHD

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Post BMT morbidity –chronic diseases

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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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Post BMT morbidity - infectionsInfection 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/sinusOnychomycosis (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 diseaseOn routine immunisation schedule(Pertussis, Haemophilus, Pneumoccus, Hep B, influenza)

184/443 (41.5%)

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Post BMT morbidity – vaccination update

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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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Post BMT social changes – household income

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Post BMT social changes – employment status

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Post BMT social changes – relationship status

› 39% relationship status remained unchanged

› 23% began a new relationship

› 43% divorced

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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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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

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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