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What matters to me
Cancer survivorship: A consumer and carers
lens on cancer survivorship and its impact on
service delivery
Toni Ashmore and Dr David Larkin
On behalf of the research team including
Megan Nutt, Dr Desmond Yip, Dr Angela Rezo, Dr Marion Currie
Background
• Division: Cancer, Ambulatory and
Community Health Support
• Inpatient, outpatient, and community based
services
• CRCC commenced operation in 2014
• Primary adult tertiary referral hub
• Growing demand for services
Why Cancer Survivorship?
• Cancer: Curable disease or Chronic illness
• People with ‘terminal illness’ also survivors
• Needs beyond chemotherapy, radiation therapy
and surgery
• Quality of life and wellbeing important
We’ve
been
chasing
“
the cure rather than
the care. ”
Ellen Stovell,
National Coalition of
Cancer Survivorship, 2013
Aims
• Define ‘Survivorship’
• Enquire about physical, emotional and practical
needs
• Examine coordination of resources and support from
a clinical perspective
Method
• Survey for consumer, carers and
health professionals
– Issues in cancer survivorship research
– Trialled with current consumers, key cancer
consumer organisations
– NSW and ACT ethics
– Electronic and paper based
– Distributed through hospital, community sources
– Selection criteria
– Limitations
Who were involved?
•
•
•
•
•
108 patients
31 carers
72 clinicians
Majority of consumers over 55 years
44.5% male / 54% female
Consumer Treatment Status
Results
Definition of survivorship
Living well
with
cancer
beyond
diagnosis
and
treatment
Psychosocial needs
consumers and carers
Ongoing psychosocial support and
information from diagnosis, during
and following treatment
When, where and type of support
and information desired
Staff talked to me about
Consumers: What I would like staff to talk about
Overall… diagnosis and during treatment
Room for improvement
• Genetic risk counselling at diagnosis and post
treatment
• Change in appearance throughout treatment
• Timing of information/support
Financial assistance at diagnosis
‘Living well with cancer’ during treatment
More information/support post treatment in general
When would you prefer to talk about the
psychological and emotional impact of cancer
on you and your family
At the time of your last
treatment
11%
At the hospital , at a
separate time from
your treatment
12%
In the community, at a
sepearate time from
your treatment
11%
In the community, after
your treatment has
been completed
8%
At time of diagnosis
33%
At the hospital, before
or after your treatment
25%
Staff talked with me about: Carer
Carers
• At Diagnosis
–
–
–
–
–
Changes in appearance
Peer support and support group for carers
Financial advice and assistance at diagnosis
Transport and accommodation
Domestic support
• During treatment
– Less social work / counsellor referral
• Post treatment
– Emotional & psychological impacts of cancer post treatment
– Peer support group
– Palliative care referral/information
When would you as a carer prefer to talk
about the psychological and emotional
impact of cancer on you and your family
Coordination of resources
• Better collaboration with GP and other health professionals
• Treatment summary/ Care plan
• Available from diagnosis
• Treatment
• Recommendations
• Planned interventions
• Repeating story
• Knowing what is available
• Waiting time
• Appointments
• Results
• Treatments
Where to from here?
• Further development of Survivorship model of care
to enhance wellbeing from diagnosis
• Consumer representation on Model of Care
committee
Where to from here…
• Timing of information / support
– Time of diagnosis
– Post treatment
• Cancer treatment plan/ Care plan from diagnosis
• Support groups
– Mindfulness for consumers and carers
– Post treatment Group
– Other support groups
Where to from here…
• Education on resource / information availability
– Health literacy
– Inclusion of other AH services
• Other
– Regional access to other Cancer allied health
services
– Transport
– Complimentary therapies
Watch this space!