Survivorship Care Plans in Gynae-oncology

– an interactive discussion

Nicole Kinnane

Project Manager Australian Cancer Survivorship

Centre

Nurse Co-ordinator Gynae-oncology Peter Mac

Survivorship Care Plans (SCPs) in

Gynae-oncology

• Revise gynaecology cancer

incidence and health issues

pre and post treatment

• Provide an overview of the

SCP literature

• Open discussion regarding

implementation of SCP in

practice

• Patient preferences – recent

survey ( if we have time )

• Resources available

Gynaecological Cancers

‘Gynaecologic cancer survivors experience a broad

array of health issues before, during and after

treatment, while multi-modality therapy has improved

survival and outcomes…..(survival is) associated with

higher odds of experiencing several different health

issues’

Westin et al 2016 Survivors of gynaecologic malignancies: impact of treatment on health and well being. Journal

of Cancer Survivorship 10:261-270

Gynaecological Cancer in Australia

• 18% female cancers worldwide

• Estimated to be the 3rd most

commonly diagnosed cancer

among females in 2016

• It is estimated that the risk

of being diagnosed with

gynaecological cancer by 85th

birthday will be 1 in 22.

• In 2008–2012 in

Australia, females diagnosed with

gynaecological cancer had a 68%

chance of surviving for 5 years

• Most associated with good

survival rates

AHIW 2014 Gynaecological cancer in Australia

http://aihw.gov.au/cancer/gynaecological/#source1

Age specific incidence

• Most > 55yrs

• More than likely more than on other

chronic disease

Salani 2013Survivorship planning in

gynaecologic cancer

patients

Literature review articles

1967 – 2013

Highlights:

• SCPs following primary

treatment may improve

coordination of care

• Common late and long

term effects

• Survivorship period a

teachable moment to

improve lifestyle

behaviours and promote

Salani R (2013) Survivorship planning in gynaecologic cancer patients. Gynaecologic Oncology 130: 389-397

Range of problems during and after

treatment

Westin et al 2016 (n=1029)

Treatment modality impacts

Compared to surgery alone:

This study sexual dysfunction was an

issues for all patients regardless of

radiation

Westin et al 2016

Surgery, chemotherapy &

radiotherapy

Chemotherapy and radiation Surgery and chemotherapy

fatigue

sexual dysfunction,

neurologic symptoms,

bowel complaints,

osteoporosis

lymphoedema

fatigue

memory difficulties

urinary problems (urinary leakage

with cough, sneeze, feelings of

urgency, frequent UTIs )

bowel complaints

osteoporosis

depression

Memory difficulties

Sleep disturbance( inability to fall

asleep or stay asleep during the

night )

anxiety

5 highest unmet needs

Beesley et al 2008 n=820– Fear of recurrence (17%)

– Concerns about those close to them

(15%)

– Uncertainty (future) (14%)

– Lack of energy (14%)

– Unable to do things they used to (14%)

Urbaniec et al 2011 n=45– Reported clinical anxiety(28.9%)

– Mild – severe depression(20.0%)

– Probable post traumatic stress

disorder(15.6%)

– NOTE:

– Fear of recurrence (26.7%); Worry

about communication between health

care professionals (26.7%) loss of

assumptive world [nothing bad will

happen to me] (26.7%)

Evaluated health behaviours of

gynaecological cancer survivors

• 61-68%

insufficiently

active

• 19-44% obese

• 31-41% < 2

serves fruit

• 82-89% < 5

serves

vegetables

• Endometrial

cancer patients

obese

• Cervix cancer

patients smoking

more prevalent

Survivorship Care

‘Preparing cancer survivors for life after cancer should be

an integral part of providing care. With increasing numbers

of survivors and improved understanding of the range of

challenges experienced post-treatment, new approaches

are required. Current models of care are ill-equipped to

cater for these demands. What is urgently needed is best-

evidence guidance on medical follow-up and holistic

interventions to support improved quality of life.’

Howell P, Kinnane N, Whitfield K 2015, Supporting cancer survivors in Victoria: Learning from the

Victorian Cancer Survivorship Program pilot projects 2011-2014

SURVIVOSHIP CARE PLANS

• Where do they fit?

• Why use them?

What is the evidence?

• Kinnane et al 2015 Survivorship care plans: literature review. Australian Cancer Survivorship Centre, Peter

MacCallum Cancer Centre, Melbourne

Evidence

Known challenges / enablers

Challenges

• Time requires to

complete

• Lack of personnel to

complete

• Lack of resources

• Gaps in evidence

• No identified personal

responsible (preparation,

delivery, update)

• Remuneration

Key Enablers

• Organisation commitment

• Clinical leadership

• Workforce education

• IT solutions

• Adequate resourcing to

support implementation

SCP – just a piece of paper?

• SCPs are a component of

survivorship care ‘not just

a piece of paper’

• Not designed to replace

post treatment

consultations

• Recommend

development and delivery

of SCP within a model of

care

Addressing Gynaecology Survivorship -

SCPs

• Multi-purpose

communication tool

• Empower survivors in

their post treatment care

• Details:

– Diagnosis

– Treatment summary

– Late and long term effects

– Signs of recurrence

– Recommended follow-up plan

– Strategies to remain well

Consider the audience and the

intended outcome

• Designed to meet needs

of survivors/ health care

professionals/

family/carers

• Plain language

• Differing literacy skills

• More detailed information

needed by HCPs

• Avoid a one size fits all

approach – needs

assessments

Needs assessment tools

• DT and problem check

list / CASUN

• Required more than one

time point

• Timely referrals,

appropriate use of

resources

• Assist in promoting self-

management

Framework Needs Assessment Low

Risk Endometrial Cancer

Presentation

• 58 year old woman

• Post menopausal bleeding

Diagnosis

• D&C Hysteroscopy

• Endometrial cancer

• MRI

RISK STRAIFITY

• Proceeds to surgery (TAHBSO), sentinal lymph node

RISK STRATIFY

• MDM presentation

• FIGO Stage 1 a Endometrial cancer

• Completion of primary treatment (?Care plan )

RISK STRATIFY

• Post op review - routine surveillance (WCMICS Guidelines) ( ? Care plan )

NEEDS ASSESSMENT AT

REGULAR INTERVALS DURING

FOLLOW-UP and SCP review

Resources

Survivorship Care Plans: Literature Review

Survivorship Care Plans: Tool Kit

http://www.petermac.org/about-us/australian-cancer-

survivorship-centre

Resources

Resources

http://cancerlearning.gov

Conclusions: Survivorship Care Plans

(SCPs) in Gynae-oncology

• Gynaecology cancer patients

incidence is increasing and so

are survivor numbers

• Health issues pre and post

treatment impact quality of life

• SCPs can be used to promote

wellness and positive lifestyle

behaviours

• Consider implementation of

SCPs as standard care in

practice

• Resources are available

SCP Background

• IOM report 2005

• Various professional groups /

organisations promoted SCPs in

clinical practice– Livestrong Essential Element of

survivorship Care 2011

– American Society of clinical oncology

(ASCO) 2013 promotes use of

treatment summaries and care plans

– Clinical Oncology Society of Australia

(COSA) Draft Position statement

Critical Components of Survivorship

(2015) promote survivorship care plan

provision

• Not standard of clinical practice in

Australia

Preferences of survivors – local context

• Recent survey at Peter

Mac

• Survey developed to

ascertain preferences of

survivors

• Targeted people up to 12

months post treatment

• Across 10 tumour

streams(Breast, gynaecology, urology, bone and soft tissue,

haematology, Upper GI, Lower GI, Melanoma,

Head & Neck, Lung)

Information preferences at end of treatment

• 98% wanted to receive

SCP

• Most frequently chosen

topics n=219

– 74% List of symptoms to

watch out for and report

– 70%A summery of treatment

received

– 70% Plan for when I should

have follow up

– 69%Things I can do to look

after myself

• Least preference

– 10% quitting smoking

– 11% Fertility information

– 23% Sexual health

information

Preferences different across

cancer groups List of top 5 information requests as chosen by survivor groups

Cohorts

*Bre

ast

Gynaecolo

gy

Haem

Head a

nd

Neck

*Low

er

GI

Upper

GI

Mela

no

ma

Sarc

om

a

*Uro

logy

Summary of treatment received

A list of symptoms to watch out for and report

Information about side effects of treatment

A plan of when I should have follow up appointments

Strategies for reducing worry about cancer coming back

Name and contact details of who I should call if I have concerns

A list of tests I am going to have and when

Things I can do to look after myself

Screening for other common cancers

Special instructions to follow after treatment

Pain and symptom management

Diet information

Exercise information

Support group information

Coping after treatment is over *Some topics had equal waiting within cohorts (equally chosen) so more than five indicated for some groups