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Licensed Unlicensed Requires Authentication Published by De Gruyter August 8, 2015

From the conventional to the alternative: exploring patients’ pathways of cancer treatment and care

Andrea L. Mulkins, Emily McKenzie, Lynda G. Balneaves, Anita Salamonsen and Marja J. Verhoef

Abstract

Background: Complementary and alternative medicine (CAM) use is widespread and on the increase among cancer patients. Most research to date has involved a cross-sectional snapshot of CAM use rather than an exploration into the longitudinal, nonlinear treatment trajectories that cancer patients develop. Our aim is to explore and describe different treatment and decision-making pathways that individuals develop after receipt of a diagnosis of either breast, colorectal, or prostate cancer.

Methods: The study was part of a larger mixed-methods pilot project to explore the feasibility of conducting a five-year international study to assess cancer patients’ treatment pathways, including health care use and the perceived impact of different patterns of use on health outcomes over the course of one year. The results presented in this paper are based on the analysis of personal interviews that were conducted over the course of 12 months with 30 participants.

Results: Five pathways emerged from the data: passive conventional, self-directed conventional, cautious integrative, aggressive integrative, and aggressive alternative. Factors that shaped each pathway included health beliefs, decision-making role, illness characteristics, and the patient–practitioner relationship.

Conclusions: The results of this examination of the longitudinal treatment and decision-making trajectory provide important information to support health care professionals in their quest for individualized, targeted support at each stage of the patient pathway.

Acknowledgments

Research support for the project was provided by the Lotte & John Hecht Memorial Foundation, Vancouver, Canada and the Norwegian Cancer Society, Oslo, Norway.

Author contributions: All the authors have accepted responsibility for the entire content of this submitted manuscript and approved submission.

Research funding: Norwegian Cancer Society (Grant/Award Number: ‘100-456’) Lotte and John Hecht Memorial Foundation (Grant/Award Number: ‘987-93’).

Employment or leadership: None declared.

Honorarium: None declared.

Competing interests: The funding organization(s) played no role in the study design; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the report for publication.

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Appendix A Baseline Interview Guide

  1. Before we begin to talk about the cancer care pathway you have been on since being diagnosed with cancer, could you tell me a little bit about what you did for your heath and wellbeing before you were diagnosed with cancer?

  2. Can you describe how you reacted to the diagnosis?

  3. How has the diagnosis impacted your life?

  4. We’re now going to talk about what has happened in terms of the treatment decisions and choices that you have had to make since being diagnosed with cancer.

    1. What treatments did your doctor recommend following your diagnosis?

      1. What treatments did you decide to have?

      2. When did you receive these treatments?

      3. What did you hope to achieve from these treatments?

      4. How did you make your decision about these treatments?

      5. What was the XX treatment like for you? (probe for each treatment received physical, emotional, etc.)

    2. Some people with cancer also receive care from other cancer care professionals, like psychologists, dietitians/nutritionists, and counselors. After you were diagnosed with cancer, did you receive support from any of these individuals?

      1. What treatments did you decide to have?

      2. When did you receive these treatments?

      3. What did you hope to achieve from these treatments?

      4. How did you make your decision about these treatments?

      5. What was the XX treatment like for you? (probe for each treatment received physical, emotional, etc.)

    3. What other treatments did you consider using following your diagnosis? (probe CAM therapies and practitioners?

      1. What treatments did you decide to have?

      2. When did you receive these treatments?

      3. What did you hope to achieve from these treatments?

      4. How did you make your decision about these treatments?

      5. What was the XX treatment like for you? (probe for each treatment received physical, emotional, etc.)

    4. After you were diagnosed with cancer, what other things did you do to take care of yourself? (probe diet changes, exercise, stress reduction, smoking cessation)

      1. What treatments did you decide to have?

      2. When did you receive these treatments?

      3. What did you hope to achieve from these treatments?

      4. How did you make your decision about these treatments?

      5. What was the XX treatment like for you? (probe for each treatment received physical, emotional, etc.)

  5. Now take a few moments and review the therapy survey you completed before the interview to see if there are any other therapies we haven’t talked about that you would like to share?

  6. What kind/source of information did you use in making your decisions about treatments?

    1. How was this information helpful/not helpful?

    2. What information was missing?

    3. How did your relationship with health care providers affect your decisions?

  7. Looking back at your cancer care pathway, would you make the same treatment/care decisions? If yes, why? If no, what why and what would you change?

  8. Out of all of the things that you have done since being diagnosed with cancer, what do you consider to be most important? Why?

  9. Many people with cancer have other important things happen in their lives after being diagnosed with cancer, such as getting married, losing a job, moving to a new place. What other important things have happened to you and/or your family during this time?

    1. How do you feel XX (life event) has impacted you?

    2. How do you feel XX (life event) impacted your treatment/care?

    3. How do you feel XX (life event impacted your response to treatment/care?

  10. Family and friends are often involved in people with cancer’s experiences. Who, if anyone, has been important in your journey with cancer?

    1. How have they been important?

  11. For those with children living at home ask: Have your children affected your decisions about care? Probes: How? Can you provide specific information or examples?

  12. For you, what in your life has been the most influential in how you have made decisions about your care? Probe: The treatments you have chosen? Beliefs, values? Life events? Other people?

  13. Looking back, what are the most important outcomes/goals of your cancer care pathway (treatments)?

  14. You’ve talked about a variety of treatments today. How do you see your treatments working together to help you achieve your goals?

    1. What challenges, if any, have you experienced in combining your treatments?

  15. What do you use to cope with your treatments and/or your diagnosis of cancer? Probes: Can you identify some of the ways you help decrease stress or burdens? Can you identify what specifically works and what you do that doesn’t work so well?

  16. I would describe my personal cancer care approach as _______________________.

  17. What else about your cancer care would you like to tell me?

Appendix B Monthly Interview

  1. Using your completed calendar, I would like to talk with you about your use of new treatments in the past month. I would also like to talk to you about any treatments you stopped using in the past month, and the events that impacted what you did for your cancer care in the past month. Please refer to your calendar and outline these for me.

  2. Assess whether new or stopped treatments.

  3. Please tell me more about the [new treatment #1] that you mentioned (if applicable).

    → Treatment; example, went to spiritual healer

    What did you want to accomplish with this?

    → Treatment characteristic; example, wanted to lessen pain

    Where did you learn about it?

  4. → Treatment characteristic; example, my sister told me

    How often did you go (or how much did you take)?

    → Treatment characteristic; example, two times; example, one bottle of pills

    Would you try this again? Do you think it worked?

    → Treatment characteristic; positive, negative, ambiguous

  5. What else did you do for your cancer care this month?

  6. (Loop until done all NEW treatments)

  7. Are ‘X’, ‘Y’, and ‘Z’ all of your new treatments?

  8. Did you consider any other kinds of cancer care that you ultimately decided against?

    → Treatment considered

  9. Why did you decide against using this?

  10. Was there anything else you considered?

    (Loop until done all CONSIDERED treatments)

    People may also have stopped using treatments or seeing practitioners.

  11. Please tell me more about the treatment(s) [#1] that you stopped using or doing (if applicable).

  12. → Treatment stopped: example, taking black cohosh

    Why did you stop using this?

    → Treatment characteristic; example, it cost too much

  13. What else did you stop using or doing for your cancer care this month?

  14. (Loop until done all STOPPED treatments)

  15. Are ‘X’, ‘Y’, and ‘Z’ all of your stopped treatments?

  16. Did you consider stopping any other kinds of cancer treatments or care that you are currently using?

  17. → Treatment considered stopping

  18. Why did you consider stopping your use of this?

  19. Was there anything else you considered stopping?

    (Loop until done all CONSIDERED STOPPING treatments)

  20. Now thinking about [event/situation #1], did that impact what you are using or doing for your cancer care? If yes, how? Now thinking about [event/situation #2]....

    → Life event

    → Event characteristic (absolutely anything)

  21. And did [event/situation #1] impact on what you stopped using? If yes, how? Now thinking about [event/situation#2].

  22. Final questions:

  23. Is there anything we missed (treatments started, treatments stopped, and related events)?

  24. Is there anything else you would like add?

Appendix C Concluding Questions

  1. Compared to last year when you started to take part in this study – where are you now in terms of health/wellbeing, cancer treatments, relationships, returning to work etc. (other relevant prompts)?

  2. Looking back on the journey you have been on over the past year, how would you describe your global experience?

  3. In ten words or less, how would you describe your approach to health and wellness this past year?

  4. How do you feel about the treatment decisions you made?

  5. How satisfied are you with your cancer treatment? Why?

  6. What have you learned? Positive? Negative?

  7. What has been the biggest worry for you?

  8. Has anything created distress and anxiety for you? What?

  9. Do you have any regrets?

  10. Is there anything that you would do differently?

  11. What advice do you have for your health care providers? And for the cancer care system?

  12. Are you interested in receiving a report about this study?

Received: 2014-11-17
Accepted: 2015-7-23
Published Online: 2015-8-8
Published in Print: 2016-3-1

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