supportive care in cancer - what are we doing for survivors?

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