ABSTRACT
BACKGROUND
Limited research exists regarding views of patients, oncology specialists, and primary care providers (PCPs) concerning breast cancer survivorship care.
OBJECTIVE
To qualitatively explore the needs and priorities of breast cancer survivors, oncology specialists, and PCPs.
METHODS
Focus groups were conducted of survivors (21 in 5 groups), PCPs (15 in 2 groups), and oncology specialists (16 in 2 groups). One survivor group consisted of four African-Americans. Discussions used a semi-structured guide, were transcribed verbatim, and were analyzed qualitatively. Groups explored transitions to follow-up, communication, patient needs, and provider roles.
RESULTS
Survivors form intense relationships with specialists for reassurance and expertise. Many believed PCPs lacked necessary oncology expertise. Survivors reported psychosocial and communication issues. African-Americans cited concerns about access to care and clinical trials, as well as taboos to discussing cancer. Specialists reported that they struggle with discharging survivors due to protective relationships. PCPs were concerned about time and training to provide survivorship care and communication problems with oncologists. Written survivorship care plans were regarded by all groups as possibly helpful, but insufficient to ease the transition.
CONCLUSIONS
Breast cancer patients may experience difficulties transitioning to survivorship, including ongoing psychosocial issues. African-American patients may face additional and unique barriers to successful survivorship. Oncology specialists may have concerns about discharging cherished patients. These findings suggest a psychological component that may influence the use of written survivorship care plans. PCPs may need additional training and greater access to specialists in order to care for survivors.
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ACKNOWLEDGMENTS
The authors wish to thank:
The members of the Cancer Outcomes and Health Services Research Interest Group at Johns Hopkins University
Dr. Nancy Davidson for her support of this research.
Ms. Regina Landis, our research assistant, and the Collaborative Inpatient Medicine Service for their staff support.
Dr. Scott Wright for his suggested comments and revisions to the manuscript.
Funding for this research was provided by the American Cancer Society through the Johns Hopkins Institutional Research Grant (IRG) program and by a grant from the Johns Hopkins Avon Foundation Breast Center.
Conflict of Interest
Ms. Shockney reports an honorarium from Pfizer for a patient advocacy presentation and book royalties from Jones & Bartlett.
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Appendix. Focus Group Guides
Appendix. Focus Group Guides
CANCER PROVIDER FOCUS GROUP GUIDE
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A.
INTRODUCTIONS
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Name
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What do you do?
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Do any of you know each other?
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Why you were interested in participating in this group?
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B.
BACKGROUND OF PROJECT
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Describe the purpose/goals of the overall project
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Describe why we’re conducting focus groups; where the focus groups fit in to the overall scheme. Describe the other focus groups that are planned.
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C.
RULES OF FOCUS GROUPS
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Food and bathroom breaks
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Being recorded
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If you must address one another, please use first names only
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Try not to interrupt one another
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Not interested in building consensus; want the full range of experiences so feel free to disagree with one another. Any questions? Let’s begin.
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D.
QUESTIONS AND PROBES
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1.
Please describe your experience with taking care of breast cancer survivors, that is, patients who have completed initial surgery, chemotherapy, and radiation therapy. Probes: How often do you see them? How would you describe those relationships?
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2.
What roles and responsibilities do you think your patients want you to have in their follow-up care?
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3.
What roles and responsibilities should primary care providers have in a survivor’s follow-up care?
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4.
If you could design the ideal relationship among you, your patients, and primary care providers, what would it look like?
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5.
What areas of breast cancer follow-up care do you think primary care providers would like more information about or need more training in? Probes: Do you think primary care providers need more education regarding hormone therapy, screening recommendations, common sequelae of breast cancer therapy, and psychosocial sequelae of breast cancer? What educational or informational format would be most useful, e.g., lectures, DVDs, websites, pocket guides?
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6.
If a patient’s oncologist created a written survivorship care plan for her at the end of treatment, summarizing the details of her diagnosis and treatment, listing the possible side effects, and outlining a plan for her follow-up care, how would you feel about primary care providers providing the breast cancer follow-up care for these patients?
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7.
What are the most important challenges or barriers to coordinating follow-up care for breast cancer survivors?
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8.
If written survivorship care plans are widely adopted, how will they affect these barriers?
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9.
In general, what do you think are patients’ greatest needs and priorities following breast cancer treatment?
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1.
PRIMARY CARE PROVIDER FOCUS GROUP GUIDE
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A.
INTRODUCTIONS
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Name
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What do you do?
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Do any of you know each other?
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Why you were interested in participating in this group?
-
-
B.
BACKGROUND OF PROJECT
-
Describe the purpose/goals of the overall project
-
Describe why we’re conducting focus groups; where the focus groups fit in to the overall scheme. Describe the other focus groups that are planned.
-
-
C.
RULES OF FOCUS GROUPS
-
Food and bathroom breaks
-
Being recorded
-
If you must address one another, please use first names only
-
Try not to interrupt one another
-
Not interested in building consensus; want the full range of experiences so feel free to disagree with one another. Any questions? Let’s begin.
-
-
D.
QUESTIONS AND PROBES
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1. Please describe your experience with taking care of breast cancer survivors, that is, patients who have completed initial surgery, chemotherapy, and radiation therapy. Probes: How often do you see them? How would you describe those relationships? How often does the subject of their cancer come up in your visits?
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2. What roles and responsibilities do you think your patients want you to have in their follow-up care?
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3. What roles and responsibilities should primary care providers have in a survivor’s follow-up care?
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4. If you could design the ideal relationship among you, your patients, and cancer care providers, what would it look like?
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5. What areas of breast cancer follow-up care do you think primary care providers would like more information about or need more training in? Probes: Do you think primary care providers need more education regarding hormone therapy, screening recommendations, common sequelae of breast cancer therapy, and psychosocial sequelae of breast cancer? What educational or informational format would be most useful, e.g., lectures, DVDs, websites, pocket guides?
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6. If a patient’s oncologist created a written survivorship care plan for her at the end of treatment, summarizing the details of her diagnosis and treatment, listing the possible side effects, and outlining a plan for her follow-up care, how would you feel about providing the breast cancer follow-up care for these patients?
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7. What are the most important challenges or barriers to coordinating follow-up care for breast cancer survivors?
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8. If written survivorship care plans are widely adopted, how will they affect these barriers?
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9. In general, what do you think are patients’ greatest needs and priorities following breast cancer treatment?
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PATIENT FOCUS GROUP GUIDE
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A.
INTRODUCTIONS
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Name
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Family status (married? children?)
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What do you do?
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Do any of you know each other? (for groups of non-volunteers)
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Why you were interested in participating in this group?
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Other than participating in focus groups, have you ever participated in other kinds of health or medical research? (or generally identify their attitudes toward research?)
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B.
BACKGROUND OF PROJECT
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Describe the purpose/goals of the overall project
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Describe why we’re conducting focus groups; where the focus groups fit in to the overall scheme. Describe the other focus groups that are planned.
-
-
C.
RULES OF FOCUS GROUPS
-
Food and bathroom breaks
-
Being recorded
-
If you must address one another, please use first names only
-
Try not to interrupt one another
-
Not interested in building consensus; want the full range of experiences so feel free to disagree with one another. Any questions? Let’s begin.
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D.
QUESTIONS AND PROBES
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1.
Before you developed breast cancer, what sorts of health-care providers did you go to for your general medical care? Probes: Did you have an ongoing relationship with a primary care provider? A gynecologist? How often would you see them? How would you describe that/those relationship(s)? What were your expectations of that/those provider(s)? What are the medical and psychosocial needs for which you depend on your health-care providers? In what ways were your expectations met/not met?
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2.
Once you developed breast cancer, did you continue to see those providers? If not, why not? If so, did the nature of your relationship/expectations change? How so?
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3.
What sorts of oncology specialists have you seen? How often have you seen them? What have been your personal experiences with those specialists? What were your expectations of that/those specialists? In what ways were your expectations met/not met?
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4.
Since you transitioned from active treatment to survivorship, have your relationships with your oncology specialists changed? Should they change? If so why? If not, why not?
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5.
What roles and responsibilities do you want your oncology specialists to have in your follow-up care?
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6.
What roles and responsibilities do you want your primary care provider(s) to have in your follow-up care?
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7.
If you could design the ideal relationship between you, your oncology specialists and your primary care provider(s), what would it look like?
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8.
What sort of information would you want your oncology specialists and primary care providers to know about you and to exchange with each other?
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9.
What suggestions or recommendations do you have for coordinating your follow-up care between PCPs and oncology specialists?
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10.
Let’s say a patient’s oncologist created a written survivorship care plan for her at the end of treatment, summarizing the details of her diagnosis and treatment, listing the possible side effects, and outlining a plan for her follow-up care. How would you feel about allowing primary care providers to assume the breast cancer follow-up care for these patients?
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11.
In general, what do you think are patients’ greatest needs and priorities following breast cancer treatment?
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1.
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Kantsiper, M., McDonald, E.L., Geller, G. et al. Transitioning to Breast Cancer Survivorship: Perspectives of Patients, Cancer Specialists, and Primary Care Providers. J GEN INTERN MED 24 (Suppl 2), 459–466 (2009). https://doi.org/10.1007/s11606-009-1000-2
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DOI: https://doi.org/10.1007/s11606-009-1000-2