TAMING THAT WILD HORSE HELPING CANCER ......St Paul University, Ottawa April 19, 2017 TAMING THAT...

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St Paul University, OttawaApril 19, 2017

TAMING THAT WILD HORSE: HELPING CANCER SURVIVORS

MANAGE THEIR FEAR OFCANCER RECURRENCE

Dr. Sophie Lebel Associate professorSchool of PsychologyUniversity of OttawaCanada

+ Collaborators

Ottawa Dr. Cheryl Harris, Dr. Monique Lefebvre, Dr. Jean Grenier et al., Lynne Jolicoeur,

the staff at PSOP, Christina Tomei, Brittany Mutsaers, Megan McCallum, Sara Beattie, and Andrea Feldstain

Montréal Dr. Christine Maheu, Dr. Zeev Rosberger, and Dr. Raman Agnihotram

Toronto: Dr. Pamela Catton, Dr. Christine Courbasson, Dr. Mina Singh, Dr. Lori Bernstein,

Dr. Sarah Ferguson, Scott Secord, Aronela Banea, and Linda Muraca

International Drs. Phyllis Butow, Belinda Thewes, Sebastien Simard, Andreas Dinkel, Gozde

Ozacinki, Gerry Humphris, Judith Prins

+ Agenda Definition and prevalence

Impact on psychological adjustment and health care use 

Measures and screening

Overview of existing interventions

Our model of fear of cancer recurrence

Our cognitive‐existential group therapy Pilot study Ongoing RCT Individual adaptations

Overview of the 6 therapeutic goals Specific tools

Question period

+ FCR: Definition And Prevalence

“Fear, worry, or concern relating to the possibility that cancer will come back or progress” (Lebel et al, 2016)

On a continuum from normal to clinical/ excessive

49% of patients report moderate to high levels FCR (Simard et al., 2013; Crist & Grunfeld, 2012)

+ Clinical FCR

High levels of preoccupation, worry, rumination or intrusive thoughts

Maladaptive coping (e.g. avoidance, reassurance-seeking, excessive body checking)

Functional impairment

Excessive distress

Difficulties making plans for the future(Lebel et al, 2016)

+ Clinical FCR

A qualitative study of 40 cancer survivors (Mutsaers et al, 2016)

Cancer‐related thoughts and imagery that were difficult to control; daily and recurrent; lasted 30 minutes or more; increased over time; caused distress and impacted daily life;

Intolerance of uncertainty; 

Death‐related thoughts; feeling alone; belief that the cancer would return 

+ Psychological Impact And Medical Costs

FCR is associated with psychological distress and lower quality of life (Simard et al., 2013; Crist & Grunfeld, 2012)

Patients who endorse high levels of FCR (Hart et al., 2008; Lebel et al., 2013; Thewes et al., 2012)

are more likely to refuse discharge from a cancer center and follow‐up with a primary care provider

are less satisfied with their care express doubt about whether one’s physician is thorough enough

are more likely to seek readmission to a specialized cancer center 

have more visits to their GPs or the ER

+ FCR: changes over time

The most frequent unmet need through out the disease trajectory (Lebel et al., 2008)

Present shortly after diagnosis

Usually stable over time (Simard et al, 2013)

+ FCR: Risk factors

Presence of physical symptoms (internaltriggers) Perceived risk of recurrence (≠ objective risk) Coping strategies: avoidance Age Gender? Medical and treatment variables: no influence

+ Measures and screening

Every cancer survivor should be assessed for their level of FCR https://guidelines.canceraustralia.gov.au/guidelines/guideline_21.pdf

No measure is currently being routinely used for screening in clinical settings (Thewes et al, 2012) Assessment of Survivor Concerns Scale : 5 items Fear of Progression Questionnaire : 43 items Fear of Cancer Recurrence Inventory: 42 items

+ Potential screening questions

Presence of FCR Are you ever afraid that your cancer will come back?

Frequency of FCR How frequently do you think about the possibility that your 

cancer will come back? (or progress?)

Severity of FCR To what extent are you scared your cancer will come back?

Wanting help with FCR Do you need help to manage your FCR?

https://guidelines.canceraustralia.gov.au/guidelines/guideline_21.pdf

+ FCR: Existing Interventions

One published randomized control trial (Herschbachet al, 2009, 2010): group CBT vs. group supportive expressive vs. control group for cancer inpatients 

Preliminary evidence that mindfulness can be beneficial (Langacher et al., 2009, 2011)

Several ongoing trials: e.g. Conquer Fear (Butow et al., 2013; Smith et al., 2015), SWORD (van de Wal, 2015)

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Our model of FCR

+ Framework: adapted from Leventhal’s Common Sense Model

+ Uncertainty theory (Mishel)

Uncertainty is generated when illness or its treatment possess characteristics of inconsistency, randomness, unpredictability, and lack of information

Uncertainty can lead to distress and lower QOL

+ Cognitive Models of Worry

Faulty beliefs about benefits of worry “if I don’t worry about my health, then I am likely to miss an early sign of recurrence and therefore likely to get a more aggressive cancer”

People with lower tolerance for uncertainty tend to worry more

Worrying may be a form of emotional avoidance 

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A cognitive-existential group intervention to address FCR

+ Cognitive-Existential Group Therapy

Combines CBT and existential therapy (Kissane et al. 2003) 

Closed group of 6‐8 patients

Two facilitators

6 weekly sessions of 90‐120 min each

Stuctured, manualized, and includes homeworkLebel et al, 2014, JCS

+ Rationale for our approach

Group is cost‐effective, as efficacious as individual therapy and offers unique elements (i.e. vicarious learning and helping out)

CBT is a proven treatment for anxiety and mood disorder and has successfully been used with cancer patients

Existential component addresses fear of dying, of suffering, of being alone and will be useful to work through specific fears that make up FCR

+ Intervention: 6 Major Goals

Identify triggers and inappropriate coping strategies

Learning and use new coping strategies

Distinguish worrisome symptoms from benign ones

Increase tolerance for uncertainty

Promote the emotional expression of specific fears 

Re‐examine life priorities and set realistic goals for the future

+ 6 sessions overview

session Description1. Introduction of participants, ABC model, FCR model, cognitive reframing,

progressive muscular relaxation-2. - Prepare questions for visit from health care professional, discuss living

with uncertainty, gaining control, calming self-talk.

3. - Visit from health care professional, discuss faulty benefits of worry, maladaptive coping strategies, teach guided imagery.

4. - Explain reason to exposure to worse scenario, promote emotion expression, confront fear underlying FCR, write down worst fear scenario, teach mindfulness exercise

5. - Review exposure to worst case scenario exercise, discuss ways of coping,promote expression of demoralization, encourage re-engagement with life/activities/people; discuss meaningful future, mindfulness exercise.

6. - Review all content covered, discuss future goals, set new priorities. - Promote the expression of saying good-bye to the group and provide closure.

+ Our research program

2009‐2010 : 1 year catalyst grant from CIHR            (Lebel & Maheu)

Team: Toronto : C. Maheu, P. Catton, S. Secord, A. Banea, C. Courbasson; Ottawa: S. Lebel, M. Lefebvre, L. Jolicoeur, M. Fung Kee Fung, C. Harris; Montreal: Z. Rosberger

Goals: develop, standardize, and pilot test the intervention to assess its feasibility and preliminaryefficacy with women with breast or ovarian cancer

+ FCR: pilot study results

Between 2010‐2013: 56 women enrolled in the study forming 9 groups of 5‐8 women with either breast (7 groups) or ovarian cancer (2 groups)

44 completed the therapy

Participants completed questionnaires pre‐, post‐therapy, and at 3‐month follow‐up 

+ Findings from the pilot study (n = 44)

Mean (SD) F and p values Effect size

T1 T2 T3 N Time

FCR 92.97 (8.08) 82.00 (7.33) 80.35(10.07) 38 F(2, 36) = 48.65, p < 0.001 0.73

Cancer-specific distress

35.04(13.24) 28.95 (9.78) 25.84(10.73) 38 F(2, 36) = 10.99, p < 0.001 0.38

Uncertainty 91.16(19.43) 83.97(16.38) 81.49(18.92) 36 F(2, 34) = 11.68, p < 0.001 0.41

Use of emotional support

5.89(1.43) 6.24(1.61) 5.54(1.61) 37 F(2, 28) = 4.88, p < 0.05 0.22

Use of instrumental support

5.71(1.51) 5.87(1.61) 5.21(1.73) 38 F(2, 36) = 3.39, p < 0.05 0.16

Positive reframing

4.54(1.76) 5.57(1.30) 5.43(1.80) 37 F(2, 35) = 9.11, p < 0.001 0.34

Acceptance 6.17(1.61) 7.14(1.02) 6.89(1.26) 36 F(2, 34) = 6.37, p < 0.01 0.27

Negative QOL 3.53(0.59) 3.19(0.55) 3.09(0.50) 35 F(2, 33) = 19.28, p < 0.001 0.54

+ FCR: pilot study results

41 participants provided complete data on the measure of FCR before and immediately after the intervention:  29 patients (71%) could be classified as reliably improved 12 patients (29%) as unchanged none as deteriorated

12 women participated in qualitative interviewsMost helpful exercises: exposure, relaxation techniques, self‐talkMost important benefit: feeling more in control of emotions

(Maheu et al., 2014 European Journal of Oncology Nursing)

+ FCR: pilot study results

“There was a session where I actually experienced the pain and the emotions of my worst case scenario and it was very beneficial for me, it was kind of therapeutic for me because after that I was feeling much better, I wasn’t avoiding as much because I knew how it felt, I knew how it would be and I had a plan to control the things I had control on. “

+A randomized controlled study to address fear of recurrence in women with cancer

+ Project Team MembersPrincipal investigators:

Christine Maheu, RN, PhDIngram School of Nursing, McGill UniversityButterfield/Drew Fellow, Princess Margaret Cancer Centre, UHNSophie Lebel, C. Psych. PhDSchool of Psychology, University of Ottawa

Co-Investigators

The Ottawa HospitalMonique Lefebvre, Lynne Jolicoeur, Cheryl Harris

Women’s College HospitalAronela Benea

University Health NetworkPamela Catton, Lori Bernstein, Sarah Ferguson

Ryerson UniversitySouraya Sidani

McGill University:Ramana-Kumar V Agnihotram

Mount Sinai HospitalLinda Muraca

York Univeristy:Mina Singh, Christine Courbasson,

This research project is funded by the Canadian Cancer Society grant #702589.

+Goal and hypotheses of the RCT

Test the efficacy of the intervention in reducing FCR in breast and gyne cancer survivors compared to a structurally equivalent control group

Participants in the intervention will:

Have significantly lower levels of FCR, cancer‐specific distress, illness uncertainty, intolerance of uncertainty, perceived risk of cancer recurrence, and show significant improvements on QoLand coping skills from pre‐to‐post intervention

Group differences will be maintained at three and six months post‐intervention

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Design Groups Timeline

2 armsIntervention:

n = 72CG:

n = 72

Groups (n=?)

6-8 women each

Recruitment 2014-2017

1st group: April2015

Number of groups

5 (Toronto) 2 (MTL)

4 (Ottawa)

Methods

Pre-/post-assessment

+ 3 & 6 months

follow-up

+ Individual adaptations

Need to adapt the therapy to an individual format: patients who obtain the therapy format of their choiceare likely to report better outcomes (Carlson et al., 2014)

6 weekly 90‐min sessions, similar content (with exception of use of medical specialist for psychoed)

RCT with 20 mixed cancer patients (men and women) PI: Christina Tomei, Ph.D. candidate

Two case studies of French‐speaking participants using telehealth (videoconferencing) PI: Dr. Sophie Lebel

+ Intervention: 6 Major Goals

Identify triggers and inappropriate coping strategies

Learning and use new coping strategies

Distinguish worrisome symptoms from benign ones

Increase tolerance for uncertainty

Promote the emotional expression of specific fears 

Re‐examine life priorities and set realistic goals for the future

+ Assessment

Medical history, reaction to diagnosis, relationship with health care providers, perceived risk of recurrence

Previous illnesses, past trauma, past and concurrent mental health issues, current support

FCR: emotions, triggers, frequency, intensity, duration, distress and functional impairment, coping

The Fear of Cancer Recurrence Inventory

+Goal 1: Identify triggers and inappropriate coping strategies

Explain link between thoughts, emotions, physical sensations, and behaviors

Explain our model of FCR using patients’ examples

Help identify triggers

Help identify thoughts, emotions, and behaviors associated with FCR

+ Framework: adapted from Leventhal’s Common Sense Model

+Goal 2: Facilitate the learning and use of new coping strategies

Teach basic cognitive restructuring Give examples of thoughts and realistic (helpful) responses  Ask participants to identify one thought and challenge it Give a list of cognitive distortions

Calming self‐talk

Teach progressive muscular relaxation Progressive muscular relaxation Guided imagery Body scan

+ Goal 3: Distinguish worrisome symptoms from benign ones

Having information reduces uncertainty

Review with clients what has been consistent and predictable about their disease, and what info they have in sufficient amount 

Review what has been unpredictable about their disease

+ Goal 3: Distinguish worrisome symptoms from benign ones

Help clients prepare questions for health care professionalsSymptoms to watch forWhat to do if symptoms are presentStats, treatment options if recurrence etc.

But…even with all the information in the world, there will still remain uncertainty around cancer

+ Goal 4: Increase tolerance for uncertainty

Clients who have a tendency to worry believe that their worry is more useful than it really is

Discuss the evidence of the benefits of worry as well as the disadvantages of worryExercise: Show participants an inverted U shape curve and discuss the fact that past a certain point, worry becomes counterproductive

What would be an acceptable level of worry?  

+Goal 5: Promote the expression of specific fears

Goal: Decrease maladaptive coping strategies  Go back to the ABC model to identify triggers, thoughts, and coping behaviorsExplain what happens to anxiety when participants avoid or over check Discuss costs associated with maladaptive behaviorsReview appropriate coping strategies Seek ways to decrease maladaptive behaviors 

+ In group exercise

The pink elephant in the room!

+ Goal 5: Promote the expression of specific fears

Discuss rationale of exposure to feared aspects about the cancer coming back 

Explore with the client underlying fear of cancer recurrence 

Help client realize that the outcomes will not be as bad as they imagine and/or that they could cope with the situation better than they thought possible

+ Goal 6: Reexamine life priorities and set realistic goals for the future

Explore feelings of being stuck, cut‐off from one’s emotions, of not having a future or that it is all pointless Exercise: ask clients if they have put aside people, aspects of themselves or projects?

Encourage participants to become re‐engaged with important life goals, people or activities they may have given up Exercise: ask clients to define what the future means for them now

Exercise: Make plans or set small goals for the next week, month, 6 months

+ Conclusions

FCR is a frequent concern that likely will not getbetter with time

Tools are available for the screening of patients with possible clinical FCR

Several promising interventions that will inform practice guidelines in the future

While FCR cannot be eliminated, it can be managed

+ Ressources

https://guidelines.canceraustralia.gov.au/guidelines/guideline_21.pdf

Thewes B, Butow P, Zachariae R, et al. Fear of cancer recurrence: a systematic literature review of self report measures. Psychooncology. 2012;21(6):571-587

Simard S, Thewes B, Humphris G, et al. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv. 2013:1-23

Lebel, S., Maheu, C., Lefebvre, et al. Addressing Fear of Cancer Recurrence Among Women with Cancer: A Pilot Study of A 6-Week Group Cognitive-Existential Intervention. J Cancer Surviv. 2014: 8(3): 485-96

+Questions?

slebel@uottawa.ca