Quality of Life Metric 20 March 2018 Chris Harrison National Clinical Director for Cancer, NHSE
Messages 1. More people surviving cancer this is a success story! But, there is more to life than survival. 2. We have tools to improve quality of life, but nothing yet to measure how effective they are. 3. This is where the quality of life metric comes in. 4. Agreeing the metric many different expectations. 5. Rolling it out gently does it. 6. Project update so far. 2
But, there is more to life than survival I m thankful the surgery allowed me to live. I try to remember that when debilitating pain makes me want to die. Male, prostate cancer, 5 years after diagnosis People living with cancer can have complex and very varied needs, many of which are currently not being met. One in four people who have been treated for cancer live with ill health or disability as a consequence of their treatment. Independent Cancer Taskforce Sources: Macmillan Cancer Support, 2013, Throwing Light on the Consequences of Cancer and its Treatment Achieving World Class Cancer Outcomes: A Strategy for Cancer 2015-2020
This is where the quality of life metric comes in - Cancer taskforce NHS England and Public Health England should work with charities, patients and carers to develop a national metric on quality of life by 2017 which would enable better evaluation of long-term quality of life after treatment. PROMs should be rolled out across breast, colorectal and prostate cancer by 2020, with evaluation informing further rollout across other cancer types. (Recommendation 64, Achieving World-Class Cancer Outcomes)
Agreeing the metric many different expectations (1 of 3) Sometimes we have little ad-hoc quotes that this hospital seems to have worse long-term side effects than other hospitals. It would be really useful to have hard data so that we can see whether that is the case Breast surgeon, District Hospital When you re going through the treatment, you don t really see the light at the end of the tunnel. You re counting down your treatments; I ve got one left; I ve got two left. Maybe if you saw a glimpse that things are going to get better, that might cheer you up a bit. Female breast cancer patient, in remission
Agreeing the metric many different expectations (2 of 3) Quality of life is much more meaningful [than clinical outcomes] for patients and those closest to them. Macmillan GP [T]here was a strong feeling held by a large group of stakeholders who contributed to this research, including some of the people living with and beyond cancer that were interviewed, that electronic data collection is the way forward in terms of the direction of travel within the NHS. Long-term quality of life of people living with and beyond cancer Phase 1 research
Agreeing the metric many different expectations (3 of 3)
Rolling it out Cancer Dashboard It will act as a flag and prompt improvement discussions at a Cancer Alliance, commissioner and provider level. It will show the importance of quality of life outcomes, alongside survival and patient experience, encouraging the NHS to place a greater focus on enabling people living with and beyond cancer to live as well as possible.
Rolling it out gently does it 1 Aggregate data will create the Cancer Dashboard metric(s). Aggregate data will also be analysed with other data sets to explore links and further understand drivers of poor or good quality of life after cancer treatment. 2 Patients able to access their individual scores real time and view changes over time (all pilot sites). 3 Responses flagged for clinicians or shared with clinical team (with patient consent some pilot sites)
Project update so far What have we done? Phase one: Research Macmillan, Ipsos MORI and Galina Velikova, University of Leeds Phase two: analysis and engagement Decision on approach Phase three: pilot & prepare for roll out May Dec 2016 In depth interviews 17 people LWBC 16 health and care clinicians/providers 13 academics and other experts Dec 2016 Feb 2017 Continued engagement including workshops Analysis of phase one report (delivered 17 December) Feb March 2017 Pilot approach discussed and agreed through Cancer Programme Governance April 2017 early 2019 Online survey 36 responses Expert Reference Group
Project update so far Pilot details The pilot will run between September 2017 and early 2019. Five pilot sites covering all regions (see next slide). Data collected digitally. Two validated quality of life questionnaires; one generic (EQ-5D- 5L) and one cancer specific (EORTC-QLQ-C30). Metric created using data collected from patients 12 to 24 months post treatment. Covering breast, colorectal and prostate cancers. 11
Project update so far Pilot sites Alliance Cheshire & Merseyside Northern Cancer Alliance East of England Trusts Aintree University Hospital NHS Foundation Trust Southport and Ormskirk Hospital NHS Trust St Helens and Knowsley Teaching Hospitals NHS Trust Northumbria NHS Trust Ipswich Hospital NHS Trust NC & NE London University College London Hospitals NHS Foundation Trust Barts Health NHS Trust Wessex University Hospital Southampton NHS Foundation Trust 12
13
Our approach Add-on to wider transformation programme Utilising a supported self-management pathway Building on a model which is sustainable and extensible Familiar and makes sense to patients 3 Hospital Trusts, with 7 MDTs participating 2 Breast, 2 Colorectal, 3 Prostate 14
Eligibility Patients treated with curative intent: Group 1- prospective group of patients at the end of their treatment. Group 2- prospective group approaching 12 months after treatment. Group 3- retrospective group of patients who are between 13 and 24 months post end of definitive treatment. 15
Identifying eligible patients Clinical teams identify patients at end of treatment suitable for a remote surveillance pathway Patients are then discharged from face to face follow up Dedicated support workers co-ordinate and track surveillance tests The pathway includes a workshop event which prepares patients for this type of follow up Surveys and health MOTs are an integral part of the pathway Ideal opportunity to introduce the QOL metric survey in a meaningful way 16
Digital Platform- My Medical Record Unique partnership with University Hospital Southampton Born out of the TrueNTH Prostate Cancer pilot A bespoke IT solution to remote surveillance Clinical and patient views Modules for Colorectal, Prostate, Breast Gynae and Lung in development Invitation to participate generated from the system with automated reminders 17
Patients view 18
Consent 19
Completing the survey 20
Patients view of responses 21
Current status Support workers all had training in good clinical practice Eligibility criteria agreed and understood (webex conferences) Information resources for patients developed End to end test carried out List of eligible patients in-waiting Full scale recruitment to start before end of March 22
Challenges IT- the development of a suitable platform for digital data collection is complex (and can be expensive) IG- all Trusts have their own processes Literacy- some patients require additional help and support Access to computer and skills to complete Duplication for patients (HNA, health MOTs) Uncertainty abut the value to patients and to clinicians 23
Pilot within the pilot Southampton and Cheshire & Merseyside Reports generated for both patients and clinicians Using a scoring system, validated and tested in research Allow results to be tracked over time Acceptability, ease of comprehension, usefulness Potential trigger for intervention/signposting 24