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

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%
In the community, after your treatment has been completed
8%
At time of diagnosis
33%
At the hospital , at a separate time from your treatment
12%
In the community, at a sepearate time from your treatment
11%
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