Establishing a population wide survivorship monitoring system .... McMillan â acute monitoring tool - London. ⢠United States ... Like a Facebook for Consumers.
SUPPORTIVE CARE IN CANCER - WHAT ARE WE DOING FOR SURVIVORS? Dr Marion Eckert Cancer Care Research Group School of Nursing and Midwifery Division of Health Sciences
ACKNOWLEDGE Dr Nadia Corsini
Cancer Council SA
Professor David Roder
University of South Australia
Mr Greg Sharplin
Cancer Council SA
Professor Lonneke van de Poll
Netherlands Cancer Institute
Ms Julie Marker
Cancer Voices SA
Ms Tracey Doherty
SA Cancer Service
Professor Bogda Koczwara
Flinders Centre for Innovation in Cancer
Professor Penny Wright
Leeds University, UK
Professor Carlene Wilson
Cancer Council SA/ Flinders University
Professor Dorothy Keefe
SA Health
Mr Michael Fitzgerald
Flinders Centre for Innovation in Cancer
Dr Ingrid Flight
Flinders University of South Australia
Presentation Overview • • • • • • •
Nursing profile and challenges Cancer Incidence – Statistics Nationally SA Health Atlas Variations in health outcomes Survivorship research in SA Cancer survivorship not just survival Establishing a population wide survivorship monitoring system
Age Profile of Nurses in SA 2500
2000
1500 UN RN EN 1000
500
0 19 Years or under
20 to 24 Years
25 to 29 Years
30 to 34 Years
35 to 39 Years
40 to 44 Years
45 to 49 Years
50 to 54 Years
55 to 59 Years
http://www.aihw.gov.au/workforce/nursing-and-midwifery/who-are-they/
60 to 64 Years
65 to 69 Years
70 Years or over
Challenges Workforce § Ageing workforce and transfer of knowledge to the next generation § Sustainable, qualified workforce for the future § Generation considerations in relation to casualisation of workforce § Roles that haven’t been designed yet, how do we prepare for them? Skills § Innovative roles that are community centric and nurse led § Provision of Quality care in an environment of increasing acuity and chronic disease Consumer engagement • How do we deal with this, engage with consumers and harness the benefits? • Perceptions - what do consumers want to be known as – living with a chronic disease? Resources • National agenda – acute system drivers • Enact a new way of thinking, challenge status quo • Technology – how do we optimise it?
Australia Leading the World
More people living with cancer
1 Million in Australia
Who is a cancer survivor? “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life.”
http://cancercontrol.cancer.gov/ocs/definitions.html
More people surviving cancer
Better diagnostic methods Better treatment Earlier detection
Variations in outcomes • About 1/3 of people affected by cancer live in non-metropolitan areas. Mortality rates are higher for those in remote areas. • Cancer incidence and mortality rates are higher for those living in lower socioeconomic status area than those in higher. • Aboriginal and Torres Strait Islander (ATSI) peoples are 6% more likely to be diagnosed with cancer and 50% more likely to die from cancer than non-ATSI Australians. We know the statistic but don’t monitor psychosocial needs at a population level
Background • • •
• •
25 people in SA are diagnosed with cancer everyday. 15 of those 25 will survive. Survival rates for many common cancers have increased by more than 30% in the past two decades. Almost 75% of all cancers diagnosed are in those over 60 years of age Cancer accounts for about 3/10 deaths in SA
Percentage distribution of cancer diagnosed and cancer deaths occurring in 2012 in South Australia. Source: SA Cancer Registry, 2015
SA Projected New Cancer Cases Annually 2014-2024 Projected New Cases Annually of all cancers combined, 2014 to 2024: South Australia
11722 11516 11311 11096 10899 10704 10513 10325 10137 9952 9772
2014
2015
2016
2017
2018
2019
2020
2021
2022
2023
2024
Projected increase in incidence of cancer in South Australia, 2014 to 2024. [Australian Institute of Health and Welfare 2014. Radiation oncology areas of need: cancer incidence projections 2014-2024.]
Top Ten Male Cancer, Incidence & Mortality Mortality males
Incidence males Prostate
1563
Colorectal
680
Lung
487
Melanoma NHL
403 231
Leukaemias
185
Kidney
171
Bladder
169
Unknown
116
Pancreas
102
Lung
439
Prostate
249
Colorectal
244
Pancreas
96
Unknown primary
92
NHL
75
Liver
73
Leukaemias
71
Brain
71
Melanoma
69
Figure 2. Top ten cancers*, incidence and mortality, males, South Australia 2012. Source: South Australia Cancer Registry, 2015. *excludes non-melanoma skin cancers
Top Ten Female Cancers, Incidence Mortality Incidence females Breast
Mortality females 1282
Colorectal
536
Lung
342
Melanoma
312
Uterus
209
NHL
180
270
Lung Breast
224 200
Colorectal 102
Pancreas Unknown Primay Ovary
93 68
Unknown
136
NHL
Leukaemias
125
Leukaemias
52
Brain
49
Stomach
48
Pancreas Ovary
112 86
59
Top ten cancers*, incidence and mortality, males, South Australia 2012. Source: South Australia Cancer Registry, 2015. *excludes non-melanoma skin cancers
SA Cancer Atlas • Review of published literature – scientific journals and ‘grey literature’. • Population surveys, cancer registry, screening registry • Geographical differences – – – – –
Cancer incidence, prevalence Risk Factors Prevention activities Screening update Case survival and death outcomes
Prevalence data and cancer rates were age standardised
SA Cancer Atlas Key Findings Rural and Remote • Î rates of cancer risk factors • low rates of screening coverage breast & cervical cancer https://www.cancersa.org.au/assets/images/pdfs/An%20Atlas%20of%20Cancer%20in%20South%20Australia%20-%20Full%20Report.pdf
Key Findings Incidence 1.00
Lip
2.01
Invasive breast (female)
1.00 0.92
Invasive melanoma
1.00 0.99 0
0.5 Adelaide
1
1.5
2
More remote areas
Mean annual age-standardised incidence; South Australia, 1995-2008* *Age-standardised to Australian population 2001; Adelaide incidence set to 1.00
SA Cancer Atlas Aboriginal & Torres Strait Islander • Higher incidence rate of cancer: – Mouth, pharynx, oesophagus (4X), lung, stomach, pancreas (2X), liver (6X), cervix (3X) & unknown organ site (3X) than other South Australians.
• Particular as it relates to preventable cancers – Cancer risk and service needs/screening are poorly defined
% 5-year survivals (95%CLs) from invasive cancers among Aboriginal & non-Aboriginal people; SA 1977-2007*
Aboriginal people reflected in orange (top) bars *Data source: SA Cancer Registry (1 in 12 sample of “other” patients)
22
% Case survival at 5 years 73.2%
Cervix
62.6% 79.6%
Female breast
60.8% 55.6%
Large bowel
34.1% 12.5%
Lung*
18.2% 21.9%
Unknown primary**
4.9% 0%
20%
Non-Indigenous
40% Indigenous
60%
80%
% Case Survival at 5 years among Indigenous and non-Indigenous Cancer Patients by Primary Cancer Site: South Australia, 1997-2007 * p=0.262; ** Case survival at 1 year (no data available for 5 years) Chong A, Roder D. Exploring Differences in Survival from Cancer among Indigenous and non-Indigenous Australians: Implications for Health Service Delivery and Research (Table 2). Asian Pacific J Cancer Prev, 2010; 11: 953-61.
Be Innovative “There’s a way to do it better – find it” Thomas Edison https://www.youtube.com/watch?v=T9WMSxV6lMs
What we need to consider • • • • • • • • •
Growing number of survivors Increase demand for specialist services Expectations to meet all survivors needs Limited specialist resources in rural and remote sites Health literacy of consumers and support Developing technology to increase reach Importance of Health Economics Engaging consumers to improve the health system and meet their needs SA is developing models to improve services and outcomes at a population level “designing a health system that meets the challenges of the future”
Just a thought Men are 84% more likely than women to die of preventable cancers
https://www.youtube.com/watch?v=EtMJeHaRPaQ
International Survivorship •
Netherlands – Population wide survivorship monitoring tool – Consumer driven health care – Peer Support
•
United Kingdom – Leeds – Acute monitoring tool – eRapid – Coventry – HOPE program – McMillan – acute monitoring tool - London
•
United States – - Instapeer
Survivorship Monitoring - NKL
Clinical Trial alert
Like a Facebook for Consumers
‘Overlevers’
Survivors
Netherlands - Consumers
Like ‘tripadvisor’ for consumers
www.zorgkaartnederland.nl
United Kingdom • •
Bexley Wing St James Hospital, Leeds Qtool and eRapid – Prof Penny Wright
•
Macmillan Cancer Support –targeted towards the immediate post acute care. Electronic holistic needs assessment (eHNA) project (data is not linked to date to their UK cancer registries.
•
Coventry Uni - Prof Beth Grunfeld, Andy Turner – focused on health coaching and self help model HOPE program
Focused on Wellness https://www.youtube.com/watch?v=pRE_IO-2u-I http://www.lida.leeds.ac.uk/.
Stupid Cancer – Instapeer (USA)
Outcomes from the Churchill Fellowship for SA •
Don’t take cancer lying down - Advance Tertiary Prevention Program – Dry July Grant - $15,000 Cancer Council SA
•
Develop survivorship monitoring tool Partnership development with the Netherlands Comprehensive Cancer Centre – Share PROFILES and Leeds University
•
Survivorship Monitoring - NHMRC Grant $1.5 million
•
Achieved a Visiting Scholar Grant University of South Australia – Professor Lonneke van de Poll visited in March 2015
Survivorship Research in SA • • •
State wide Transforming Health Initiative aimed at “designing a health system that meets the challenges of the future” New Advanced Health Research Translation Centre – SAHMRI – Beat Bowel Cancer South Australia Cancer Services (SACs)
Activities • Statewide Cancer Control Plans • Statewide Survivorship Framework • Optimal Cancer Care Pathways • Feasibility Study – FCIC – Survivorship Clinic • Population wide survivorship monitoring tool • Cancer Data and Aboriginal Disparities (CanDAD) Partnership Project
SA Cancer Care Pathway Review
Optimal Care Pathways
Implementa3on Principles • Mul+-‐disciplinary, mul+-‐sectoral and comprehensive (survivor, family and community) • Evidence-‐based • Data driven • Technology enabled
Survivorship Framework for SA
Cancer Treatment summary Minimum informa+on for
• Workforce • Tools • Data
Funded by NCERG & SA Health
Cancer surveillance (recurrence and detection)
Needs assessment
Survivor
Overarching Principles 1. 2. 3. 4. 5. 6.
Distress thermometer and problem checklist
Holis+c and pa+ent-‐centred Safe Accessible Effec+ve Efficient Equitable
• KPIs • Health economic measures
Care plan
Side-effect management (treatment toxicities; physical, psychosocial and economic impact)
Other health problems
Wellness and health promotion
(co-morbidities)
(prevention and screening)
Other (eg. return to work or school, financial support)
CONTEXT SPECIFIC eg. Aboriginal, CALD, people with special needs
How many does this impact in SA?
– 1 in 2 Australians will be diagnosed with cancer by the age of 85. – 28% of all deaths in South Australia are due to Cancer. – In 2013 there was a total of 51,000 people with Cancer in SA
Example of what we currently monitor Cancer Registry’s in South Australia
BIOSPECIMEN DATABASES CANCER SCREENING & HPV VACCINATION REGISTERS CANCER NOTIFICATIONS
DE-IDENTIFIED LINKED DATA SHELL POP CRs STRUCTURED PATHOLOGY REPORTING
STATE/PRIVATE RADIOTHERAPY PROCEDURES
HOSPITAL INPATIENT PROCEDURES MBS PBS
DEATH REGISTRATIONS NDI
MEDICARE
Patient Reporting (PROs) & data linkage model
Gap in Monitoring Survivorship •
There is NO monitoring tool established in Australia to monitor the psychosocial outcomes of people with cancer at a population level
• • •
Quality of life Fear of Recurrence (FCR) Co-morbidities before and after Cancer diagnosis Psychological distress Utilisation of health care services Treatment satisfaction Mental health problems Financial impact Emotional wellbeing
• • • • • •
International Benchmarks
Why is this Important? ü There is no mechanisms for collecting survivorship data in SA at a population level ü
Identify gaps in services
ü
Identify high risk groups
ü
Challenge assumptions
ü
Inform support services
ü Inform clinicians ü Inform Policy makers ü Monitor impact of changes of health service or support service delivery on the consumer ü Drive research into improving psychosocial outcomes ü Inform Advocacy strategy ü Targeted communication planning
Review of International Models
Existing registries
Set up, processes and governance
Minimum datasets
Data linkage
Project Plan Jun 2015 – Jun 2016
Jun 2016
Jul 2016 - Jul 2017
2018
Stakeholder engagement Review of registries and PRO instruments
Churchill Fellowship Systematic Review
Feasibility pilot at Flinders Centre for Innovation in Cancer Develop a minimum dataset
Establish steering committee and governance
Seek funding
Implementation study
Registry
• Multi-site • Establish infrastructure • Managing risk • Consultation regarding for adoption nationally
Build a dataset that can be data linked and monitored to deliver support services that improve quality of life
FCIC Pilot Study Study aim – To determine acceptability and feasibility of collecting information from people about their experiences following cancer treatment. Method – Survivors recruited via Survivorship Clinic (over 6 months) – Completed treatment with curative intent – Initial survey + survey at 12 months
Draft Survey
Providing Supportive Care • Critical to have a data informed health system • Influence Transforming Health to the critical care needs identified • Drive innovation through Nurse led supportive care • Monitor Optimal Care Pathways and outcomes • Effectively monitor survivorship and drive change to reduce the burden of unmet needs
Summary • More people surviving cancer but there are many adverse effects • Quality data is needed to build a greater understanding to inform service delivery, communication and advocacy • Develop good systems, not just good luck • A dedicated registry is the best model to meet this need • We are now leading a program of research and stakeholder engagement to establish a survivorship registry that will identify gaps and unmet needs for the future. • It is more than quantity of life, it is quality of life also.
Ponder a thought WE MAKE A LIVING by WHAT WE GET BUT WE MAKE A LIFE by WHAT WE GIVE WINSTON CHURCHILL
Thank you and Questions