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Cancer associated chronic illness - a new cancer story

Cancer associated chronic illness - a new cancer story . Jane Maher NHS Improvement Lead (cancer) CMO Macmillan cancer Support Chair NCSI Consequences of treatment work stream . Cancer in the UK in 2008. 300,000 new cases of cancer in UK in 2008 1

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Cancer associated chronic illness - a new cancer story

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  1. Cancer associated chronic illness - a new cancer story Jane Maher NHS Improvement Lead (cancer) CMO Macmillan cancer Support Chair NCSI Consequences of treatment work stream

  2. Cancer in the UK in 2008 300,000 new cases of cancer in UK in 20081 150,000 cancer deaths in UK in 20081 2 million cancer survivors in UK in 2008 10% 65+ are cancer survivors increasing by 3.2% each year 1 Based on NCIS data for England in 2005. All figures refer to all malignant neoplasms excluding non-melanoma skin cancer (ICD-10 C00-C97 excl. C44).

  3. Current public (& professions’) view of cancer Incurable cancer Cured cancer

  4. . The new “incurable cancer “ story Multiple courses of Chemotherapy Chronic phase Actively managing EOL

  5. . Many people with incurable cancer can live good quality lives Not all will die “soon”, many live with their disease for years Different “patterns of illness (chronic, progressive, dying) “incurable cancer “

  6. Eg looking at survival curves of a cohort pf patients treated with “palliative” RT ….. Breast/prostate Lung 7.5 months (Other 5 months) Breast 22.3 months Prostate 23 months

  7. . “incurable cancer “ Treatment as early as possible & for as long as possible not always the answer

  8. Ovarian cancer (OVO 5) Same Survival : “early” CT or “wait for symptoms (Rustin et al 2009) Median months (95%CI) Early 25.7 (23.0, 27.9) Delayed 27.1 (22.8, 30.9) 1.00 HR=0.98 (95%CI=0.80, 1.20), p=0.85 0.75 Proportion surviving 0.50 0.25 0.00 0 6 12 18 24 30 36 42 48 54 60 Months since randomisation Number at risk Early 265 247 211 165 131 94 72 51 38 31 22 264 236 203 167 129 103 69 53 38 31 19 Delayed Overall Survival

  9. 30 30 25 25 20 20 Number of patients 15 Number of patients 15 10 10 5 5 0 0 3 6 9 12 15 18 21 24 0 0 3 6 9 12 15 18 21 24 Number of months spent with good GHS score Number of months spent with good GHS score Overall time with a good Quality of life shorter if CT given early ( Rustin et al 2009) Median (months) Early 7.1 Delayed 9.2 p=0.15 (Mann-Whitney test)

  10. . The new “cured cancer” Story The first year is very tough More cancer, heart disease & other chronic illness ? Life style change Secondary prevention New Sorts of illnesses

  11. . Cured Cancer • Lots of people survive cancer • At least a quarter- unmet needs from Ca & treatment a year later • New cancer & treatment related illnesses emerge months, years, or decades later 25% unmet needs 6 months After treatment Armes et al 2009

  12. The year after treatment 79% 1850 patients (breast, prostate, gynae, C/R, NHL) questionnaires at EOT & 6 months later (66 centres) 25% unmet needs 6 months after treatment Armes et al JCO 2009

  13. Cancer survivors - more chronic illnesses Lifestyle change more important for cancer survivors than others Obesity Dietary fat intake Exercise Smoking

  14. UK Health & Well Being survey ( Eliot et al 2010) NB: These categories are not all mutually exclusive

  15. Selected Health and Well-being outcomes Cancer survivors & CCs versus healthy (odds ratios)

  16. Newchronic conditions RT & CT related illnesseseg pelvic cancers ? • 17,000 / year pelvic RT ( UK ) • gynaecological, urological, colorectal, anal cancers • 100,000 living after pelvic RT • Bowel, urinary ,sexual issues

  17. Fistula/ Perforation Transfusion dependent bleeding Secondary cancer Stricture Eifel 1995, Nostrant1995, Denton 2000, Ooi 2000, Andreyev 2005 Severe Adverse events : 5 -10% after 10 years; >10% after 20 years

  18. Fistula/ Perforation Transfusion dependent bleeding Secondary cancer Stricture Eifel 1995, Nostrant1995, Denton 2000, Ooi 2000, Andreyev 2005 Severe Adverse events : 5 -10% after 10 years; >10% after 20 years

  19. 25-50% Clusters unexplained changes ; patients don’t tell professionals; neither connect them with useful interventions “It’s the little things put together that wear us down” “”my gp says for a long time he did not know what was going on …I thought I was ……maiking a fuss “My Oncologist asked how I was – how embarrassing to tell him” Open Letter to my oncologist Clinical Oncology 2007 19 746- 747

  20. Months /years after pelvic RT • Symptom Score bladder symptoms bowel symptoms Worse Better Time after treatment (months) Davidson et al 2008

  21. Risk stratification - cancer, individual, Treatment Kaiser triangle Bonn conference

  22. Using IT intellegently GP research database Patient reported outcomes Hospital episode statistics Radiation episode statistics Chemotherapy prescriptions Cancer registry

  23. Getting help after treatment – What do patients think ?

  24. Build one team- words to avoid.. • “Primary” • “secondary” • “Discharge” • Perverse incentives

  25. Cancer patients……… have lots of outpatient appointments … use a lot of beds …see their GP a lot … have a lot of tests Cancer patients…

  26. Economic modeling …. • More back to work (first year) • Reduce “empty” follow up (early ca) • Reduce bed days (advanced ca) • “

  27. Is cancer a long term condition ? • Yes & No ….

  28. “Some are born great Some become great Some have greatness thrust upon them” Malvolio Twelfth Night W. Shakespeare • Some cancers are born chronic - myeloma • Some cancers become chronic breast & prostate • Some survivors have chronic illness • thrust upon them treatment • And some are not chronic at all

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