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 LarkinOn 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

We’ve been chasing the cure rather than the care.

“

”

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 cancerbeyond 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 treatmentMore 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 time of diagnosis33%

At the hospital, before or after your treatment

25%

At the hospital , at a separate time from your

treatment13%

In the community, at a sepearate time from

your treatment11%

At the time of your last treatment

11%

In the community, after your treatment has been completed

8%

Staff talked with me about: Carer

• 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

Carers

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

• Education on resource / information availability– Health literacy– Inclusion of other AH services

• Other– Regional access to other Cancer allied health

services– Transport– Complimentary therapies

Where to from here…

Watch this space!