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

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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

1 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 & the National Cancer Survivorship Initiative East of England Strategic Clinical Network Tackling Complex Rehabilitation & Survivorship 4 March 2014

2 Context the National Cancer Survivorship Initiative Impact of pelvic cancer consequences Management of pelvic cancer consequences

4 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.

5 NICE Prostate Cancer Clinical Guideline 2014 Ensure that men with signs or symptoms of radiationinduced 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

6 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:

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

8 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.

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

10 Optimal treatment includes Cancer rehabilitation Pre-habilitation prior to treatment where appropriate Cancer Rehabilitation Care Pathways (National Cancer Action Team)

11 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

13 Promoting Recovery: The Recovery Package

14 The Recovery Package 1. Assessment and Care Planning

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

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

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

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

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

20 Supporting self management Influencing healthy behaviour change

22 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.

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

24 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

25 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)

26 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

27 Rectal patients (median time after surgery 4.5yr) 16% 18% 17% 31% 32% 30% Faecal leakage Requiring to alter daily activities Always needing to wear a protective pad Rarely or never emptying their bowels fully Difficulty controlling the passage of gas Requiring to modify diet Long term effect of surgery and radiotherapy for colorectal cancer on defecatory function and quality of life Knowles et al Eur J Oncology Nursing 2013

28 No. affected in UK, up to at least 10 yrs post diagnosis 90, , , ,000 n/a 200,000 n/a <63,000 n/a >80,000 n/a n/a Bowel dysfunction Bladder dysfunction Sexual difficulties Fatigue Concentration/memory Pain Peripheral Neuropathy Lymphoedema Bone problems Hormonal symptoms Fertility Psychosocial issues

29 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

30 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

31 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, low-cost changes to improve patient outcomes

32 Empowering people

33 Empowering professionals Resources to support self-management Clinical Guidance & Educational resources Clinical tools e.g. Algorithms, PROMs

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

35 Clinical Guidance coming in 2014 National Federation of Gynaeoncology Nurses & Society of Radiographers Society of Endocrinology Macmillan Quick Guides for non-specialists gastrointestinal male urinary tract symptoms erectile dysfunction (in partnership with Prostate Cancer UK)

36 Clinical Tools:? Trigger Qs / Checklists / PROs Patient Pathways Algorithms

37 Trigger 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):

38 Checklists and diaries Food Diary Bowel Diary Bladder Diary

39 Patient pathways

40 Expected publication in 2014

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

42 Empower patients Empower professionals

43 Having lived through chemotherapy as a patient now though I think perhaps we should at least learn a little about the longer term consequences on the body as these are the things that a patient has to live with day in day out long after the treatment has finished. Dr Kate Granger #hellomynameis

44 Thank you

Throwing light on the consequences of cancer and its treatment

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 The London