TAMING THAT WILD HORSE: HELPING CANCER SURVIVORS

Transcription

1 + TAMING THAT WILD HORSE: HELPING CANCER SURVIVORS MANAGE THEIR FEAR OF CANCER RECURRENCE Dr. Sophie Lebel Associate professor School of Psychology University of Ottawa Canada St Paul University, Ottawa April 19, 2017

2 + 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

3 + 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

4 + 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)

5 + 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)

6 + 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

7 + 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

8 + 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)

9 + FCR: Risk factors Presence of physical symptoms (internal triggers) Perceived risk of recurrence ( objective risk) Coping strategies: avoidance Age Gender? Medical and treatment variables: no influence

10 + Measures and screening Every cancer survivor should be assessed for their level of FCR 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

11 + 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?

12 + FCR: Existing Interventions One published randomized control trial (Herschbach et 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)

13 + Our model of FCR

14 + Framework: adapted from Leventhal s Common Sense Model

15 + 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

16 + 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

17 + A cognitive-existential group intervention to address FCR

18 + 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 min each Stuctured, manualized, and includes homework Lebel et al, 2014, JCS

19 + 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

20 + 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

21 + 6 sessions overview session Description 1. Introduction of participants, ABC model, FCR model, cognitive reframing, progressive muscular relaxation Prepare questions for visit from health care professional, discuss living with uncertainty, gaining control, calming self-talk Visit from health care professional, discuss faulty benefits of worry, maladaptive coping strategies, teach guided imagery 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 Review all content covered, discuss future goals, set new priorities. - Promote the expression of saying good-bye to the group and provide closure.

22 + Our research program : 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 preliminary efficacy with women with breast or ovarian cancer

23 + FCR: pilot study results Between : 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, posttherapy, and at 3 month follow up

24 + Findings from the pilot study (n = 44) Mean (SD) F and p values Effect size T1 T2 T3 N Time FCR (8.08) (7.33) 80.35(10.07) 38 F (2, 36) = 48.65, p < Cancer-specific distress 35.04(13.24) (9.78) 25.84(10.73) 38 F (2, 36) = 10.99, p < Uncertainty 91.16(19.43) 83.97(16.38) 81.49(18.92) 36 F (2, 34) = 11.68, p < Use of emotional support Use of instrumental support Positive reframing 5.89(1.43) 6.24(1.61) 5.54(1.61) 37 F (2, 28) = 4.88, p < (1.51) 5.87(1.61) 5.21(1.73) 38 F (2, 36) = 3.39, p < (1.76) 5.57(1.30) 5.43(1.80) 37 F (2, 35) = 9.11, p < Acceptance 6.17(1.61) 7.14(1.02) 6.89(1.26) 36 F (2, 34) = 6.37, p < Negative QOL 3.53(0.59) 3.19(0.55) 3.09(0.50) 35 F (2, 33) = 19.28, p <

25 + 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 interviews Most helpful exercises: exposure, relaxation techniques, self talk Most important benefit: feeling more in control of emotions (Maheu et al., 2014 European Journal of Oncology Nursing)

26 + 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.

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

28 + Project Team Members Principal investigators: Christine Maheu, RN, PhD Ingram School of Nursing, McGill University Butterfield/Drew Fellow, Princess Margaret Cancer Centre, UHN Sophie Lebel, C. Psych. PhD School of Psychology, University of Ottawa Co-Investigators The Ottawa Hospital Monique Lefebvre, Lynne Jolicoeur, Cheryl Harris University Health Network Pamela Catton, Lori Bernstein, Sarah Ferguson McGill University: Ramana-Kumar V Agnihotram Women s College Hospital Aronela Benea Ryerson University Souraya Sidani Mount Sinai Hospital Linda Muraca York Univeristy: Mina Singh, Christine Courbasson, This research project is funded by the Canadian Cancer Society grant #

29 + 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 QoL and coping skills from pre to post intervention Group differences will be maintained at three and six months post intervention

30 + Methods Design Groups Timeline Pre-/postassessment + 3 & 6 months follow-up 2 arms Intervention: n = 72 CG: n = 72 Groups (n=?) 6-8 women each Recruitment st group: April 2015 Number of groups 5 (Toronto) 2(MTL) 4 (Ottawa)

31 + Individual adaptations Need to adapt the therapy to an individual format: patients who obtain the therapy format of their choice are 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

32 + 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

33 + 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

34 + 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

35 + Framework: adapted from Leventhal s Common Sense Model

36 +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

37 + 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

38 + Goal 3: Distinguish worrisome symptoms from benign ones Help clients prepare questions for health care professionals Symptoms to watch for What to do if symptoms are present Stats, treatment options if recurrence etc. But even with all the information in the world, there will still remain uncertainty around cancer

39 + 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 worry Exercise: 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?

40 + 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 behaviors Explain what happens to anxiety when participants avoid or over check Discuss costs associated with maladaptive behaviors Review appropriate coping strategies Seek ways to decrease maladaptive behaviors

41 + In group exercise The pink elephant in the room!

42 + 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

43 + 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

44 + Conclusions FCR is a frequent concern that likely will not get better 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

45 + Ressources _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): 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):

46 Questions? + slebel@uottawa.ca