National Cancer Survivorship Initiative

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Susanna Atkinson
5 years ago
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1 National Cancer Survivorship Initiative National Cancer PROMS Programme DH PROMs & Cancer Policy Teams Originally. NHS England Now. ADAM GLASER

2 Background Increasing prevalence of cancer increase of 3.2% pa, 3.4 million by 2030 Unmet needs described by survivors Late morbidity recognised little robust population based data for adults Need evidence to support enhanced commissioning & delivery of care Cancer PROMS used in clinical trials & supportive care research no gold standard

3 The Bigger Picture Cancer Quality Account question data process Do I survive? Mortality statistics NCDS and NCIN Was I looked after well? Patient experience NCPES What will I be like? Quality of survival PROMs

4 National Cancer PROMs Programme Objectives Embed routine collection of PROMS within core business of the NHS cancer programme alongside survival data Utilise PROMS to describe the quality of survival identify consequences of survival and impact on function identify factors that impact on outcome, including Tx enable provision of appropriate health & social care compare outcomes by service provider organisations

5 Value based cancer care Value = patient health outcome / cost Need to define & then measure the right outcomes what is success? Porter NEJM 2010

6 Define the right outcomes: What is success? Results not patient experience not compliance with practice guidelines not clinical indicators Results that matter for patients conditions not procedures conditions not specialties conditions not hospital sites nor care sites Porter & Lee. Harvard Business Review Oct 2013

7 Progress report 2011 Pilot 4 tumour sites n=5,000 66% response 2012 Longitudinal survey Respondents to 2011 pilot >80% response 2013 National Survey Colorectal n=35,000 63% response 2014 National Survey Prostate n=60, Pilot Gynaecological cancers 2015 NPCA Prostate

8 Pilot tumour sites breast, colorectal, NHL, prostate Population based sampling from 3 representative regional cancer registrys 1, 2, 3 and 5 y post diagnosis n=312 per cohort per time point Total n =4992 Sample mailed under cover of letter from last recorded Trust providing Tx 2 reminders, 3 DBS death checks. Partnership DH PROMs & Cancer Policy Teams Survey provider Quality Health

9 Survey content Demographics and treatment details (self report) Disease status (remission, relapse, uncertain) Long term conditions Generic quality of life (EQ5D no VAS) Physical activity no smoking item (an omission) Social Difficulties Inventory Experience of care Psychological issues Work status Tumour specific questions (FACT specific no FACT-G) Total around 70 questions (breast 66; colorectal 72) 9

10 Response 66% of total sample responded No effect of gender, diagnosis, time from diagnosis Age 85+ years, LTCs and increasing deprivation significant effects On average under 5% missing data per item 77 calls to helpline, letters (0.02%)

11 Results In keeping with the literature Data on prevalence on late effects and their impact on QoL Erectile dysfunction did not impact on QoL, urinary leak and bowel incontinence did Urine leakage 38% prostate, 23%, colorectal (normal male 4.5%, >75y 16%) Poor bowel control: prostate 13%, colorectal 19% Exercise: 5x/week 21%, nil 30% Hard to compare with GPPS and HSE 2008 due to age differences Good response rates and high completion of items

12 Colorectal 2013 Response rate 63.3% 21,802 of 34,467 Reduced HRQL c.f gen pop HSE 2011 Especially under 55 years, stoma, other LTCs 22% without stoma had little/no bowel control 25% rectal had difficulties with sexual matters First national whole population cancer PROM NHS England Report Results by Provider Trust, CCG, SCN and National

13 Methodological Issues: Successes PROM independent of trial, process, Tx, setting whole condition Large numbers High participation rate and data completeness Meaningful data to complete quality account Proof of methodology utilising cancer registrations

14 Methodological Issues: Problems Long survey Respondent bias Lower response with deprivation, age, non-white Non inclusion of EQ-5D VAS Skewed EQ-5D data Perfect (1,1,1,1,1) v non-perfect health No matched control group HSE 2011, age- sex-matched 4,615 colorectal No standardised measures for comparison E.g. LTCs different in PROMs, HSE Provider comparisons validity of funnel plots/league tables

15 Conclusion Exciting opportunity to collect the data to support development and commissioning of robust cancer aftercare services across the health economy Methodological challenges remain but hopefully not insurmountable

Life & Bladder Cancer - The Yorkshire Survey

Life & BC Life & Bladder Cancer - The Yorkshire Survey Prof. James Catto University of Sheffield Prostate Colon Bladder Lung Renal NHL Oral cavity Melanoma Leukaemia Bladder Cancer - Prevalence 400000