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Determinants of surveillance for late effects in childhood cancer survivors: a qualitative study using the Theoretical Domains Framework

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Abstract

Purpose

Most adult survivors of childhood cancer do not complete the recommended surveillance tests for late effects of their treatment. We used a theory-informed method to elucidate the barriers and enablers among childhood cancer survivors to accessing such tests.

Methods

Semi-structured interviews were completed with adult survivors of childhood cancer. Participants were eligible for the surveillance tests of interest (echocardiogram, mammogram/breast MRI and/or colonoscopy) but had not attended a specialised aftercare clinic in over five years. The Theoretical Domains Framework (TDF), a tool specifically developed for implementation research to identify influences on desired behaviour(s), informed the interview guide and analysis; interview transcripts were coded line-by-line and mapped to domains in accordance with the framework.

Results

Thirty childhood cancer survivors were interviewed (ages 25–60). The TDF domains described by survivors included: intention to complete the tests, which was facilitated by the fear of another cancer (emotion), confidence in the benefits of early detection (beliefs about consequences), and supportive reminders (memory, attention, and decision-making). In contrast, a lack of knowledge of late effects and relevant guidelines and the burden of arranging tests (social identity) were key barriers.

Conclusion

Interventions seeking to increase surveillance testing for late effects may be more effective if they feature components that explicitly address all the theory-informed determinants identified.

Implications for Cancer Survivors

Awareness about the recommendations among survivors and their physicians is a necessary (but likely not sufficient) step towards implementation of guidelines regarding surveillance for late effects.

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Availability of data and material

Data collected in this study are interview transcripts and excerpts are available upon request, as per REB ethics.

Code availability

There was no code used in this study.

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Acknowledgements

We would like to thank all the childhood cancer survivors who participated in this study.

Funding

Funding for this study comes from a bridge grant from the Canadian Institutes of Health Research (CIHR) #169702: Design and evaluation of a system-wide surveillance system for late effects of treatment in childhood cancer survivors. JS is supported by a CIHR Health System Impact Post-doctoral Fellowship. AMC is supported by the Peter Gilgan Centre for Women’s Cancers at Women’s College Hospital, in partnership with the Canadian Cancer Society. DH is supported by the Paediatric Oncology Group of Ontario Chair in Childhood Cancer Control at the University of Toronto. PN is supported by a Canadian Institutes for Health Research (CIHR) Foundation Grant. NI is supported by CIHR Tier 2 Canada Research Chair in Implementation of Evidence-based Practice

Author information

Authors and Affiliations

  1. Women’s College Hospital Institute for Health System Solutions and Virtual Care, Women’s College Hospital, Toronto, Ontario, Canada

    Jennifer Shuldiner & Noah Ivers

  2. The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada

    Nida Shah & Paul C. Nathan

  3. The Peter Gilgan Centre for Women’s Cancers, Women’s College Hospital, Toronto, Ontario, Canada

    Ann Marie Corrado

  4. Department of Radiation Oncology, Princess Margaret Cancer Centre-University Health Network, Toronto, Ontario, Canada

    David Hodgson

  5. Division of Hematology/Oncology, Hospital for Sick Children, Toronto, Ontario, Canada

    Paul C. Nathan

  6. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada

    Paul C. Nathan & Noah Ivers

  7. Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada

    Noah Ivers

Authors
  1. Jennifer Shuldiner
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  2. Nida Shah
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  3. Ann Marie Corrado
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  4. David Hodgson
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  5. Paul C. Nathan
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  6. Noah Ivers
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Corresponding author

Correspondence to Jennifer Shuldiner.

Ethics declarations

Ethical approval

The study was approved by Clinical Trials Ontario (project ID #1906), with The Hospital for Sick Children's Research Ethics Board acting as the Board of Record.

Informed consent

All survivors gave informed consent to participate in the research study. All survivors gave informed consent that the data we received could be published.

Conflict of interest

The authors declare no competing interests.

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Appendices

Appendix 1 Interview guide

Introduction

  1. 1)

    I understand you had cancer as a child. Can you tell me a little bit about your experience and what you went through?

  2. 2)

    How do you find this experience impacts your life now? Emotionally? Physically?

Social/Professional Role and Identity

  1. 3)

    Does being a survivor affect how you view your health?

  2. 4)

    Do you see being a cancer survivor as part of who you are (your identity)?

    1. a.

      Is it something that you think about often?

Accessibility and Delivery of Care – Social influences

I wanted to ask you some questions about the doctors that you may interact with:

  1. 5)

    I understand that you were referred to a follow up clinic at Princess Margaret. Can you remember the last time you were there?

    1. a.

      How far is it for you?

    2. b.

      What are these visits like for you?

    3. c.

      Any benefits from your visit?

    4. d.

      So you stopped seeing your provider at Princess Margaret, when did you make this decision? How did you decide?

  2. 6)

    Do you currently have a family doctor? (If no continue with question #7)

    1. a.

      How often do you see your family doctor?

    2. b.

      What kind of relationship do you have with your family doctor?

    3. c.

      Is your doctor aware that you had cancer as a child?

  3. 7)

    Do you have a survivor care plan or a health passport? (If they are not familiar with the survivor care plan, let them know that it is a summary of the treatment they received, follow-up screening recommendations, and types of screening tests available).

  4. 8)

    (if has a family doctor) Have you shared your survivor plan with you family doctor?

    1. a.

      If so, how much of the plan did you share with your family doctor? How did you decide how much you wanted to share?

    2. b.

      How did your family doctor react when you shared your survivor care plan with them?

Knowledge

  1. 9)

    Has a healthcare professional ever mentioned screening tests you can do as an adult to prevent or minimise effects of the treatment you got when you had cancer?* For example, breast MRI or a colonoscopy, or heart tests? (if No go to question 10)

    1. a.

      Who mentioned this to you?

    2. b.

      What did they say?

    3. c.

      What is it like talking about cancer screening tests with your (family) doctor?

    4. d.

      Have you done some of these tests?

    5. e.

      Have you gone for the screening tests that were recommended?

    6. f.

      (If they have mentioned) How do you decide if you will do the test? Have you done some of these tests?

    7. g.

      Are they any individuals that you discuss this decision with? Are there any individuals who impact that decision?

    8. h.

      What do these individuals that you may talk about screening with think of these tests?

    9. i.

      Do you know anyone close to you (friends/family) that goes for regular [breast imaging/ colonoscopy/ echocardiogram]?

    10. j.

      And what did they say about their experience doing this?

    11. k.

      How does hearing about their experience affect whether you will go?

  1. 10)

    As far as you know, are there screening test that you have should be doing?

    1. a.

      When were you supposed to start these tests? (ask the question for each tests mentioned)

      1. i.

        breast imaging (if relevant)

      2. ii.

        a colonoscopy

      3. iii.

        echocardiogram

    2. b.

      How often are you supposed to go for these tests?

Accessibility and Delivery of Care – Social influences, Emotion, and Beliefs about Capabilities

  1. 11)

    (If they have accessed late effect screening). I wanted to ask you some questions regarding the screening tests that you mentioned you went for:

    1. iii.

      What is the experience of going for screening tests like for you?

    2. iv.

      What is that process like? Where do you go? Who gets back to you with results?

    3. v.

      Was there any part of the process that was difficult?

      1. i.

        Were they any difficulties in scheduling or attending your screening appointment?

    4. vi.

      Was there any part of the process was the easy or helpful?

  2. 12)

    Would you want to attend (again or for the first time) [breast imaging/ colonoscopy/ echocardiogram] in the next year for late term effects?

    1. g.

      Can you tell me how you made this decision?

    2. h.

      What do you think this experience will be like for you?

    3. i.

      Do you think any part of the process will be difficult?

  3. 13)

    Have you ever mentioned screening for late effects to your family physician? (if they have a family physician)

    1. j.

      How did your doctor react?

  4. 14)

    (if has not gone for a screening test) Let's say you were told by a physician to go for

    1. k.

      heart test/echocardiogram

      1. i.

        Do you think you would go for this test?

      2. ii.

        What do you think might help or hinder you from getting the test done?

      3. iii.

        What do you think the experience would be like for you?

    2. l.

      breast MRI or mammogram

      1. i.

        Do you think you would go for this test?

      2. ii.

        What do you think might help or hinder you from getting the test done?

      3. iii.

        What do you think the experience would be like for you?

    3. m.

      Colonoscopy

      1. i.

        Do you think you would go for this test?

      2. ii.

        What do you think might help or hinder you from getting the test done?

      3. iii.

        What do you think the experience would be like for you?

Skills and Environmental Context and Resources

  1. 15)

    What are some of the things that you feel may impact your ability to get the test for late term effects done?

  1. 16)

    I wanted to ask you some questions about how you would access screening for late term effects, if you wanted. For example, if you had to go for a [breast MRI] test in the next year:

    1. n.

      How would you make the appointment?

    2. o.

      Any transportation issues?

    3. p.

      Time off work/childcare issues?

    4. q.

      Have enough time? Anything that might get in the way?

    5. r.

      What do you think the experience would feel like…

      1. i.

        Leading up to the test?

      2. ii.

        The day of the test?

      3. iii.

        Going for the test?

      4. iv.

        After the test? And before finding out the results of the test?

      5. v.

        Do you think the emotions you described have an effect on your decision to access these tests?

      6. vi.

        Talk me through any other emotions come to mind.

      7. vii.

        How do those emotions influence you?

Beliefs About Consequences

  1. 17)

    What are the pros and cons for getting these tests done?

Social Influences

  1. 18)

    Do you have a partner?

    1. s.

      Do they take an active role in your health?

    2. t.

      If you were to go for screening, do you think they might help with that process?

Reinforcement

  1. 19)

    Can you talk me through a positive experience that you have had in going for screening related to monitoring for late effects of your cancer treatment?

    1. a.

      And does that experience impact you wanting to go for [breast imaging/ a colonoscopy/ an echocardiogram] in the next year?

  2. 20)

    Can you talk me through a more negative experience that you have had in going for screening?

    1. b.

      And does that experience impact you on wanting to go for [breast imaging/ a colonoscopy/ an echocardiogram] in the next year?

Memory, Attention, Decision Processes, and Intention

  1. 21)

    Have you ever made an appointment for a screening test but have missed the appointment?

    1. c.

      Have you ever forgotten to attend a screening appointment?

    2. d.

      What might help you attend?

    3. e.

      What might help you remember?

    4. f.

      What was the reason you did not go to your appointment?

    5. g.

      Did you reschedule?

    6. h.

      Do you have trouble attending medical appointments in general?

  2. 22)

    If you are planning to go for a screening, what aspects are you weighing in deciding whether to go for [breast imaging/ a colonoscopy/ an echocardiogram]?

Behavioural Regulation

  1. 23)

    Do you have any specific strategies in place to make sure you go to [breast imaging/ a colonoscopy/ an echocardiogram] in the next year?

  2. 24)

    What strategies or suggestions do you have that can help us to support other survivors of childhood cancer to go for [breast imaging/ a colonoscopy/ an echocardiogram]?

  3. 25)

    Anything else that you wanted to say that you might have thought of as we have been speaking?

  4. 26)

    Given everything that we talked about, what do you think impacts most on whether you will go for screening in the next year?

Those are all the questions I have for you. I appreciate the time and insight that you've given me today. Is there anything else that comes to mind that you would like to share related to screening tests?

Appendix 2

Table 4 Definitions of behaviour change techniques [39]
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Shuldiner, J., Shah, N., Corrado, A.M. et al. Determinants of surveillance for late effects in childhood cancer survivors: a qualitative study using the Theoretical Domains Framework. J Cancer Surviv 16, 552–567 (2022). https://doi.org/10.1007/s11764-021-01050-6

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