Can you really ‘Conquer’
Fear of Cancer Recurrence?

Phyllis N Butow, Belinda Thewes, Jane Turner, Jemma Gilchrist, Louise Sharpe, AfafGirgis, Allan B Smith, Joanna E Fardell, Stephanie Tesson, Jane Beith, and members ofthe Conquer Fear Authorship Group

Phyllis Butow
Psycho-Oncology Co-operative Research Group
University of Sydney

The University of Sydney

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Definition– Fear of cancer recurrence is the fear or worry
that cancer could return or progress in the same place oranother part of the body
– Lebel et al, 2016

– Relevant to both early stage and late stage disease– But mostly studied in the context of early stage disease

The University of Sydney

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Fear of cancer recurrence prevalence– Patients, survivors and carers experience fear of cancer recurrence (FCR)

Some degree of FCR

Mod-high FCRHigh FCR
020
40
60
80
Average % of cancer survivors reporting FCR

100

Does not resolve over time
The University of Sydney

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How does FCR manifest?
– Constant and intrusive thoughts about cancer– A conviction that cancer WILL return– Inability to plan for the future (in case cancer interferes)– Avoidance of, or excessive screening– Interpretation of symptoms as signs of cancer recurrence– Excessive visits to the doctor– Anxiety, distress, feeling trapped– Poorer quality of life

The University of Sydney

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WHAT IS FCR?

Patient Perspectives“I hope it is not going to be soon, but one day I
think it is going to come back. For most people,
once you have cancer then later you die fromcancer” (L aged 52 yrs)
“I’m trying to live for the moment, but there arealways thoughts lurking” (C aged 40)

The University of Sydney

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FCR: Not irrational› FCR - not irrational› Inextricably linked with existential issues› Goal of therapy NOT to remove FCR,
› but to help people live better with FCR, to give lessimportance and attention to it, and to develop goals for thefuture which give their lives purpose, meaning and direction

The University of Sydney

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What factors contribute to FCR?
Treatment and prognosis seem un-related to FCR– Prognosis– 11 studies +– 16 studies –– Recurrence or metastatic diagnosis– 5 studies +– 4 studies –– Treatment type
– Also weak evidence
The University of Sydney

Simard et al, 2013
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Risk perception IS related to FCR– Risk perception / optimism• 8 studies report strong + association withFCR• Suggests that assessment and review ofunrealistically high subjective risk may be astrategy for combating excessive FCR

Simard et al, 2013
The University of Sydney

Page 8Symptoms ARE related to FCR– Symptom experience– 22 studies report strong + association with FCR– Global symptom burden, pain, fatigue, body image– Suggests that education about the meaning ofsymptoms and those likely related to recurrence
may be helpful
Simard et al, 2013
The University of Sydney

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General anxiety IS related to FCR– Global anxiety disorder, other psychiatric conditions,related to FCR in some studies– 1/3 to ½ of young women with breast cancer and FCR also
met criteria for GAD or hypochondriasis– (Thewes et al, Psycho-Oncology, 2013; 22: 2797-806)– Possibly related to severe FCR– Probably bi-directional– General interventions to reduce anxiety may help FCR

The University of Sydney

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NEED FOR INTERVENTIONS– 123 Australian Oncology health professionals
surveyed– 31% spent > 25% of their time in f/u
consultations discussing FCR– 46% found discussing FCR challenging– 71% interested in more training

The University of Sydney

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UNMET NEED FOR HELP WITH FCR– Survivors want help for FCR– Highest unmet need in survivorship studies(Hodgkinson et al 2007, Sanson-Fisher et al, 2000)– 2nd most important survivorship research priority inconsumer (BCNA) survey (2009) (n=835)– (after physical risks for recurrent BrCa)

The University of SydneyPage 12

FCRSo, what helps?

13
The University of Sydney

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ConquerFear: DEVELOPMENT– PoCoG established FCR interest group= Team of experienced clinicians & researchers
Preliminary work
– Surveyed psycho-oncology health professionals– Conducted literature reviews– Developed a model, synthesising theoretical approaches– Developed a theoretically grounded treatment and manual– Obtained feedback on content from Australian psychologists– Conducted a pilot study to establish acceptability and likely
efficacy
The University of Sydney

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Treatment Approaches circa 2012/13› 141 Oncology HPs (64 psychosocial) surveyed- Current treatment approaches vary widely- Lack of evidence-based interventions
The University of Sydney

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Theoretical approaches: A review

The University of Sydney

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Theoretical Model
Lack ofinformation

Risk
factors

The Cancer
Experience

High distress

Heightened Fear ofCancer Recurrence

Attention focusedon cancer

Stress response
Unhelpful beliefs aboutworry

Conquer Fear
Intervention
developed totarget
vulnerability
factors

Return to“new normal”

Model shared with patients
The University of Sydney

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Conquer Fear
– Individual, face-to-face therapy– With a clinical psychologist/psychiatrist– Focus on “meta-cognitions”

The University of Sydney

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Conquer Fear

Conquer Fear: Intervention– Assessment
individual profile and risk factors– Values clarification:planning for future– Detached mindfulness: focus on moment– Attention training:
control over attention focus– Meta-cognitive therapy: worry not + or –– Education:
about prognosis and signs of recurrence– Behavioural contract:non-excessive follow up

The University of Sydney

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The University of Sydney

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Accept worry, but don’t get caught up in it…
– Detached Mindfulness– Think of your thoughts and feelings as passers by – theycome and go– Accept them – they are there– Don’t judge them, or react to them, or try to get rid ofthem– Like leaves passing down a stream– Or clouds in the sky

The University of Sydney

Page 212

Pilot study

Smith AB, Thewes B, Turner … Butow P. Pilotof a theoretically grounded psychologistdelivered intervention for fear of cancer
recurrence (ConquerFear). Psycho-Oncology,
2015; 24(8): 967-970

Acceptable, feasible, likely effectiveThe University of Sydney

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Conquer Fear: RCT Study Aim– To evaluate in a randomised
controlled trial the efficacy
and cost-efficacy of atheoretically-based therapistdelivered intervention toreduce clinical FCR in cancer
survivors

The University of Sydney

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Protocol

The University of Sydney

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Study Design
Intervention:
Conquer Fear
Therapist
Recruitment
and Training>2 years
experience in
psycho-oncology

Participant
Recruitment••••

The University of Sydney

Br, CR or Mel
Early stage
2 months to 5years post tx
Clinically sig FCR

BaselinesurveyActive Control:Taking it Easy

Follow-up
surveys:- Immediatepost- 3 month- 6 monthPage 25Intervention arms
Therapists delivered both interventions
5 sessions in 10 weeks (60-90 minutes each)
Conquer Fear: Intervention

Taking it Easy: Active control– Values clarification: planning for future••– Detached mindfulness: focus on moment– Attention training: control over attention focus•– Meta-cognitive therapy: worry not + or •– Behavioural contract: non-excessive follow up

The University of Sydney

Introduction to stress
Progressive & passive muscle
relaxation
Meditative relaxation
Visualization and quick relaxation

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Measures– Primary outcome– Fear of cancer recurrence:• Fear of Cancer Recurrence Inventory (FCRI) Total• FCRI Severity subscale– Secondary Outcomes– Cancer-specific distress:– General distress:– Quality of life:– Unmet information needs:– Meta-cognitions:

The University of Sydney

Impact of Events Scale (IES)
Depression, Anxiety, Stress Scales (DASS-21)
Assessment of Quality of Life 8D (AQOL8D)
Survivor Unmet Needs Survey (SUNS) Info Scale
Meta-cognitions Questionnaire (MCQ-30)

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Statistical Considerations– Sample size = 260 (130 each arm)
– To detect a14.5 point difference between groups in FCR– 90% power, two-sided alpha of 0.05
– Allowed for 30% drop-out rate
– T-test, multivariate adjusted analysis– Repeated measure analysis employing GEE models to test
impact over time

The University of Sydney

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Australian Sites

Fiona Stanley
Royal Perth
St John of God
WA Psycho-Oncology

26 therapists participated from 17 sites
Treated on average 15 (3-25) patients each

Royal Brisbane & Women’s
Toowoomba Hospital

ConcordGosfordMacarthur
NepeanPrince of WalesSt George
Sydney University
WestmeadFlinders Medical CentrePeter MacCallum Cancer Centre
Ballarat Health Services

The University of Sydney

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