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Cancer patient perspectives on survivorship goals from the Smart Patients online community

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  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Background

Cancer impacts individuals’ life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients’ attitudes toward goal sharing with their cancer care providers.

Patients and methods

Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes.

Results

Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment.

Conclusion

Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals.

Implications for cancer survivors

Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.

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References

  1. American Cancer Society (2018) Cancer facts & figures 2018. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2018/cancer-facts-and-figures-2018.pdf. Accessed 9 May 2019

  2. National Cancer Institute (2015) Cancer statistics. https://www.cancer.gov/about-cancer/understanding/statistics. Accessed 9 May 2019

  3. Hullmann SE, Robb SL, Rand KL (2016) Life goals in patients with cancer: a systematic review of the literature. Psychooncology 25:387–399. https://doi.org/10.1002/pon.3852

    Article  PubMed  Google Scholar 

  4. Affleck G, Tennen H, Urrows S, Higgins P, Abeles M, Hall C, Karoly P, Newton C (1998) Fibromyalgia and women’s pursuit of personal goals: a daily process analysis. Health Psychol 17:40–47. https://doi.org/10.1037/0278-6133.17.1.40

    Article  CAS  PubMed  Google Scholar 

  5. Pinquart M, Silbereisen RK, Fröhlich C (2009) Life goals and purpose in life in cancer patients. Support Care Cancer 17:253–259. https://doi.org/10.1007/s00520-008-0450-0

    Article  PubMed  Google Scholar 

  6. Lampic C, Thurfjell E, Bergh J, Carlsson M, Sjödén PO (2002) Life values before versus after a breast cancer diagnosis. Res Nurs Health 25:89–98. https://doi.org/10.1002/nur.10029

    Article  PubMed  Google Scholar 

  7. Wrosch C, Scheier MF, Miller GE, Schulz R, Carver CS (2003) Adaptive self-regulation of unattainable goals: goal disengagement, goal reengagement, and subjective well-being. Personal Soc Psychol Bull 29:1494–1508. https://doi.org/10.1177/0146167203256921

    Article  Google Scholar 

  8. Levit L, Balogh E, Nass S et al (2013) Patient-centered communication and shared decision making. Washington, D.C.

    Google Scholar 

  9. Gilligan T, Coyle N, Frankel RM, et al (2017) Patient-clinician communication: American Society of Clinical Oncology consensus guideline. JCO 35:3618–3632. https://doi.org/10.1200/JCO.2017.75.2311

  10. Fritz RL, Vandermause R (2017) Data collection via in-depth email interviewing: lessons from the field. Qual Health Res 28:1640–1649. https://doi.org/10.1177/1049732316689067

    Article  PubMed  Google Scholar 

  11. Egan J, Chenoweth L, McAuliffe D (2006) Email-facilitated qualitative interviews with traumatic brain injury survivors: a new and accessible method. Brain Inj 20:1283–1294. https://doi.org/10.1080/02699050601049692

    Article  PubMed  Google Scholar 

  12. Cook C (2012) Email interviewing: generating data with a vulnerable population. J Adv Nurs 68:1330–1339. https://doi.org/10.1111/j.1365-2648.2011.05843.x

    Article  PubMed  Google Scholar 

  13. Hershberger PE, Kavanaugh K (2017) Comparing appropriateness and equivalence of email interviews to phone interviews in qualitative research on reproductive decisions. Appl Nurs Res 37:50–54. https://doi.org/10.1016/j.apnr.2017.07.005

    Article  PubMed  PubMed Central  Google Scholar 

  14. Rand KL, Banno DA, Shea AM, Cripe LD (2016) Life and treatment goals of patients with advanced, incurable cancer. Support Care Cancer 24:2953–2962. https://doi.org/10.1007/s00520-016-3113-6

    Article  PubMed  Google Scholar 

  15. Hewitt ME, Bamundo A, Day R, Harvey C (2007) Perspectives on post-treatment cancer care: qualitative research with survivors, nurses, and physicians. J Clin Oncol 25:2270–2273. https://doi.org/10.1200/JCO.2006.10.0826

    Article  PubMed  Google Scholar 

  16. Bradley EH, Curry LA, Devers KJ (2007) Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res 42:1758–1772. https://doi.org/10.1111/j.1475-6773.2006.00684.x

    Article  PubMed  PubMed Central  Google Scholar 

  17. Strauss A, Corbin J (1990) Basics of qualitative research: grounded theory procedures and techniques. Sage Publications, Inc., Newbury Park, CA

    Google Scholar 

  18. Long-term survivorship care after cancer treatment: proceedings of a workshop: health and medicine division. http://www.nationalacademies.org/hmd/Reports/2018/long-term-survivorship-care-after-cancer-treatment-proceedings.aspx. Accessed 9 May 2019

  19. Janse M, Ranchor AV, Smink A, Sprangers MAG, Fleer J (2015) Changes in cancer patients’ personal goals in the first 6 months after diagnosis: the role of illness variables. Support Care Cancer 23:1893–1900. https://doi.org/10.1007/s00520-014-2545-0

    Article  PubMed  Google Scholar 

  20. von Blanckenburg P, Seifart U, Conrad N, Exner C, Rief W, Nestoriuc Y (2014) Quality of life in cancer rehabilitation: the role of life goal adjustment. Psychooncology 23:1149–1156. https://doi.org/10.1002/pon.3538

    Article  Google Scholar 

  21. Erci B (2015) Meaning in life of patients with cancer. Palliat Support Care 13:3–10. https://doi.org/10.1017/S1478951513000254

    Article  PubMed  Google Scholar 

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Availability of data and material

Not applicable.

Funding

This study was funded by the National Cancer Institute-National Institutes of Health (Grant No. K24CA212294 and R01CA241128).

Author information

Authors and Affiliations

  1. Division of General Internal Medicine at Zuckerberg San Francisco General Hospital, Center for Vulnerable Populations, University of California San Francisco, 1001 Potrero Avenue, Box 1364, San Francisco, CA, USA

    Mekhala Hoskote, Gem Le, Roy Cherian & Urmimala Sarkar

  2. Smart Patients, Mountain View, CA, USA

    Roni Zeiger

Authors
  1. Mekhala Hoskote
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  2. Gem Le
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  3. Roy Cherian
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  4. Roni Zeiger
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  5. Urmimala Sarkar
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Contributions

US and RZ contributed to the study conception and design. Material preparation and data collection were performed by all authors. Data analysis was performed by MH and RC. The first draft of the manuscript was written by MH and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Urmimala Sarkar.

Ethics declarations

Conflict of interest

MH declares that she has no conflict of interest. GL declares that she has no conflict of interest. RC declares that he has no conflict of interest. RZ is a co-founder of Smart Patients. US declares that she has no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study was approved by the Institutional Review Board of the University of California, San Francisco (No. 18–26,752).

Consent to participate

A waiver of informed consent/authorization was obtained from the Institutional Review Board of the University of California, San Francisco (No. 18-26752).

Consent for publication

Not applicable.

Code availability

Not applicable.

Additional information

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Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Semi-Structured Questionnaire

Semi-Structured Questionnaire

  1. 1)

    Are you a patient or caregiver?

    • Patient

    • Caregiver

    • Other please specify (________)

  2. 2)

    I think my personal goals have a direct relationship with the treatment decisions my cancer specialist makes about my care.

    • Strongly disagree

    • Somewhat disagree

    • Neither agree nor disagree

    • Somewhat agree

    • Strongly agree

  3. 3)

    You said you preferred not to share your list of goals with your cancer specialist. (This is absolutely okay!) Why was this your preference? Please select all that apply.

    • I have already discussed these issues with my cancer specialist

    • I do not think he or she has time

    • I do not think he or she is interested in these issues

    • I should discuss them with someone else

    • I do not think he or she can help me with these issues

    • I do not think these issues are relevant to my cancer specialist

    • Other please specify (________)

  4. 4)

    In general, what would make you more comfortable in discussing your goals with your healthcare team?

    [Open Ended]

  5. 5)

    Do you think this goal setting exercise was helpful?

    • Yes

    • No

  6. 6)

    What was most helpful about it? OR Why do you think it wasn’t helpful for you?

    [Open Ended]

  7. 7)

    Which Smart Patients community do you belong to?

    • Breast Cancer

    • Breast Cancer (Club Mets)

    • Kidney Cancer

    • Ovarian Cancer

    • Lung Cancer

  8. 8)

    What is your age? _______ years old

    (coded as over and under 65)

  9. 9)

    What is your gender?

    • Male

    • Female

    • Other

  10. 10)

    What is the highest level of education you have completed?

    • Some high school

    • High School

    • Some college

    • Associate’s degree (2 years)

    • Bachelor’s degree (4 years)

    • Postgraduate degree

  11. 11)

    What is your race and/or ethnicity?

    • African-American or Black

    • Native American or Alaska Native

    • Asian / Pacific Islander

    • White

    • Hispanic and/or Latino/a

    • Other

  12. 12)

    I am confident I can overcome challenges that come up as I go through treatment.

    • Strongly disagree

    • Somewhat disagree

    • Neither agree nor disagree

    • Somewhat agree

    • Strongly agree

  13. 13)

    My treatment plan takes into account my preferences and goals.

    • Strongly disagree

    • Somewhat disagree

    • Neither agree nor disagree

    • Somewhat agree

    • Strongly agree

  14. 14)

    It is difficult for me to follow my treatment plan.

    • Strongly disagree

    • Somewhat disagree

    • Neither agree nor disagree

    • Somewhat agree

    • Strongly agree

  15. 15)

    I expect my cancer specialist to discuss my treatment preferences and goals with me regularly.

    • Strongly disagree

    • Somewhat disagree

    • Neither agree nor disagree

    • Somewhat agree

    • Strongly agree

  16. 16)

    Please list 3–8 goals you have for your life.

  17. 17)

    For each goal, respond whether you agree or disagree with this statement:

    “I think my cancer specialist could do more to help me.”

    • Strongly disagree

    • Somewhat disagree

    • Neither agree nor disagree

    • Somewhat agree

    • Strongly agree

  18. 18)

    What do you think about the idea of printing out the attached PDF letter and sharing it with your doctor?

    [Open Ended]

  19. 19)

    How do you feel about sharing goals with your doctor?

    [Open Ended].

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Hoskote, M., Le, G., Cherian, R. et al. Cancer patient perspectives on survivorship goals from the Smart Patients online community. Support Care Cancer 29, 2375–2384 (2021). https://doi.org/10.1007/s00520-020-05734-0

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  • DOI: https://doi.org/10.1007/s00520-020-05734-0

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