Throwing light on the consequences of cancer and its treatment

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1 Throwing light on the consequences of cancer and its treatment Lesley Smith Consequences of Treatment Programme Manager at Macmillan Cancer Support & the National Cancer Survivorship Initiative

3 The London Cancer Alliance West South NHS England Cancer Outcomes report 2013 Evidence about the unmet needs and consequences of treatment [...] is essential to plan the provision of appropriate monitoring and support services, including specialist services for people with complex consequences of treatment. All Party Parliamentary Group for Cancer report 2013 NHS England should ensure [...] that professionals have access to and use the latest information about consequences of cancer and its treatment.

4 NICE Prostate Cancer Clinical Guideline 2014 Ensure that men with signs or symptoms of radiation-induced enteropathy are offered care from a team of professionals with expertise in radiation-induced enteropathy (who may include oncologists, gastroenterologists, bowel surgeons, dietitians and specialist nurses). NHS England London Cancer Commissioning Strategy 2014 It is imperative that specific support for conditions relating to side effects of treatment are commissioned. e.g. pelvic radiation disease, lymphoedema, sexual difficulties

5 The number of people living with cancer is set to double from 2m to 4m by 2030 Source: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, Br J Cancer 2012; 107:

6 National Cancer Survivorship Initiative: Taking Action to Improve Outcomes (2013)

7 NCSI Taking Action 2013 a framework for survivorship across five steps 1.Information and support from the point of diagnosis 2.Promoting recovery (the Recovery Package ) 3.Sustaining recovery 4.Managing the consequences of treatment 5.Supporting people with active and advanced disease.

8 Information and support from the point of diagnosis Information Decision support Optimal treatment Holistic Needs Assessment Work and Finance

9 Work and cancer Work support is needed from point of diagnosis Healthcare professionals have a key role to encourage patients to think positively about work

11 Promoting Recovery: The Recovery Package

12 The Recovery Package The London Cancer Alliance West and South 1. Assessment and Care Planning

13 The Recovery Package 2a. The Treatment Summary Copy to GP Copy to patient

14 Cancer Care Review The Recovery Package 2b. The Cancer Care Review

15 3. Health and The Wellbeing Recovery events Package 3. Health and Wellbeing Event

16 Sustaining recovery Stratified Pathways of Care for people living with or beyond cancer A how to guide

17 Stratified Pathways: Patient Activity Tumour Group Period covered Breast Jan 12 March 13 Pathway: self managed (low / medium risk) Period from end of treatment 45% 2 8 months Pathway : Consultant led ( high risk and complex ongoing issues) 55% Pathway: Nurse led (stoma management and complex bowel issues) Colorectal Jan 12 March 13 Testis Jan 12 March 13 30% 4 6 months 70% 2 6 months 45% 25% 30%

18 Supporting self management Influencing healthy behaviour change

20 How was I? On a good day uncomfortable, using pads, and planning carefully every time I went out of the house. On a bad day, I d rather not eat than embarrass myself in front of family and friends and I sleep in a separate room now.

21 Late effects Toxicity Chronic Problems Adverse Events Long Term Effects Side Effects Consequences of Treatment

22 At least 500,000 people in the UK are facing poor health or disability after treatment for cancer approx 25% of those who have been diagnosed with cancer at some point in the their lives. Many problems can persist for at least 10 years after treatment.

These, along with the high prevalence of on-going condition-specific problems such as bowel, urinary and erectile dysfunction, warrant

23 Survivorship PROMS Risk factors for poor health-related QoL outcomes following a cancer diagnosis [ ] include the presence of other LTCs, deprivation and limited physical activity. These, along with the high prevalence of on-going condition-specific problems such as bowel, urinary and erectile dysfunction, warrant the attention by cancer services. (Glaser et al) The data suggest more systematic preparation and aftercare for individuals to self-manage post-treatment problems might improve QoL outcomes among cancer survivors. (Corner et al)

24 PROMs in survivorship 65% of Colorectal / 54% of Prostate patients reported low or medium QoL Colorectal: 23.5% urinary leakage 19% bowel difficulties 19.2% had a stoma Prostate: 38.5% urinary leakage 12.9% bowel difficulties 58.4% unable to have an erection, and a further 11% having significant difficulty having or maintaining an erection Glaser et al 2013

25 Rectal patients (median time after surgery 4.5yr) 16% Faecal leakage 18% Requiring to alter daily activities 17% Always needing to wear a protective pad 31% Rarely or never emptying their bowels fully 32% Difficulty controlling the passage of gas 30% Requiring to modify diet Knowles et al Eur J Oncology Nursing 2013

26 No. affected in UK (up to at least 10 yrs post diagnosis) Bowel dysfunction Bladder dysfunction Sexual difficulties Fatigue n/a Concentration/memory Pain n/a Peripheral Neuropathy < Lymphoedema n/a Bone problems > Hormonal symptoms n/a Fertility n/a Psychosocial issues

27 Recommendations from Throwing Light To Commissioners: Recovery Package Specialist services National PROMs Maps of Medicine Peer Review To Professionals: Recovery Package Patient information Referral pathways and clinical pathways To Professional Bodies/Training Organisations: Clinical Guidance Standards for education and skills Audit and research To Researchers: Build the evidence base for prevalence, costs, treatments, minimisation/prevention, monitoring

28 Barriers to improving patient outcomes Engaging the national bodies in tackling: lack of standards/guidance lack of services Engaging professionals in developing: - local service improvements - clinical expertise - ways to identify problems early For people affected by cancer: - lack of knowledge - reluctance or delay in raising problems - lifestyle choices

29 NCSI priority area - consequences of pelvic cancer treatments Large numbers affected Increased use of RT Some severe long term consequences Significant unmet need Opportunities for simple, lowcost changes to improve patient outcomes

30 Empowering people

31 Empowering professionals Resources to support selfmanagement Clinical Guidance & Educational resources Clinical tools e.g. Algorithms, PROMs

32 Clinical Guidance Gastrointestinal Effects BSG 2012 Vaginal dilation 2012 Reproductive Functions 2007

33 Clinical Guidance coming in 2014 National Federation of Gynaecology Nurses & Society of Radiographers Society of Endocrinology Macmillan Quick Guides for non-specialists gastrointestinal male urinary tract symptoms erectile dysfunction

34 Clinical Tools: Checklists /PROs Patient Pathways Algorithms

Checklists and Patient Reported Outcome tools Simple tools/checklists that help to identify problems Verbal / written / electronic Reduce embarrassment &

35 Checklists and Patient Reported Outcome tools Simple tools/checklists that help to identify problems Verbal / written / electronic Reduce embarrassment & other barriers At several time points Trigger for patient to contact health professional Trigger for referral to specialist for consequences of treatment

36 Questions about bowel function Are you woken at night to move your bowels? Do you need to rush to the toilet to have a bowel movement? Do you ever have bowel leakage, soiling, or a loss of control over your bowels? Do you have any bowel symptoms preventing you from living a full life? If yes to any of the above refer to Gastroenterology Andreyev et al, (2012) Gut 61(2):179-92

37 Checklists and diaries Food Diary Bowel Diary Bladder Diary

38 Macmillan CCaT A competence framework for nurses caring for people living beyond cancer

39 Empower patients Empower professionals

40 Thank you

The Late Consequences of Cancer Treatment The Impact & Management of the Late Effects of Pelvic Cancer Treatments

The Late Consequences of Cancer Treatment The Impact & Management of the Late Effects of Pelvic Cancer Treatments Lesley Smith Consequences of Treatment Programme Manager at Macmillan Cancer Support &