Cancer associated chronic illness - a new cancer story I’m jane maher an oncologist from Mount Vernon Cancer Centre in the UK Jane Maher NHS Improvement Lead (cancer) CMO Macmillan cancer Support Chair NCSI Consequences of treatment work stream

300,000 new cases of cancer in UK in 20081 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).

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

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

. 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 “ 5

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

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

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

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

? 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 10

Cured Cancer Lots of people survive cancer . 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 11

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 National Audit Office Report – ‘Tackling Cancer: Improving the Patient Journey’ has attempted to measure progress the governments attempt to tackle cancer through the DoH Cancer Plan through a survey of patients. 2000 patient survey of 65,000 patients with cancer survey repeated in 2004 4,300 (55% of patients approached) participated. Survey of 4,300 patients The survey indicates improvements since 2000 but still suggests there are areas needing attention – 40% of patients did not receive written information, and there are variations in the availability of information between types of cancer and geographically, information is not always culturally sensitive, 15% felt they did not have clear answers to their questions or had full understanding for treatment and side effects older patients (over80 yrs) gave less positive responses 2/3 continued to experience pain at points during their treatment One in three cancer patients felt so anxious or depressed that they needed help to cope, but 20% of those reported that hospital staff did not do all they could 5 % of all patients needed help with anxiety or depression after discharge but did not receive it home circumstances were not considered in arranging discharge for 1/5 of cancer patients 40% of patients were not given information about cancer support groups patients frequently experienced fatigue 1/5 did not receive sufficient help to cope with it ¾ had not been given information about benefits or financial advice more patients waited more than 30 minutes to see their doctor at follow-up appointments than in 2000, 25% waited more than an hour Armes et al JCO 2009

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

UK Health & Well Being survey ( Eliot et al 2010) Sample (over 30s) Healthy N= 4,892 2740 Cancer survivors with or without other chronic conditions 780 Survivors of other chronic conditions but not cancer 1,372 Cancer survivors without other chronic conditions 413 Cancer survivors with other chronic conditions 367 NB: These categories are not all mutually exclusive

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

New chronic conditions RT & CT related illnesses eg pelvic cancers ? 17,000 / year pelvic RT ( UK ) gynaecological, urological, colorectal, anal cancers 100,000 living after pelvic RT Bowel, urinary ,sexual issues

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

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

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

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

Risk stratification - cancer, individual, Treatment Kaiser triangle c.j.ham@bham.ac.uk Bonn conference

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

Getting help after treatment – What do patients think ?

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

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

Economic modeling …. More back to work (first year) Level of need Estimated number of patients involved (will vary according to cancer, individual & treatment ) Level 1 – supported self-care with quick access back into the system if and when needed to improve early detection c75% (<10%) Level 2 – level of requirement requiring regular primary or secondary care input c20% (90%) Level 3 – highly complex patients requiring case management by an assigned key worker (often a CNS) actively managing and “joining up” care for the patient c5% (<1%) Red = where we are now More back to work (first year) Reduce “empty” follow up (early ca) Reduce bed days (advanced ca) “

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

Some have greatness thrust upon them” “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