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Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network

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Abstract

Background

The objectives of this study were to characterize survivorship models of care across eight LIVESTRONG Survivorship Center of Excellence (COE) Network sites and to identify barriers and facilitators influencing survivorship care.

Methods

Using the framework of the Chronic Care Model (CCM), quantitative and qualitative methods of inquiry were conducted with the COEs. Methods included document reviews, key informant telephone interviews with 39 participants, online Assessment of Chronic Illness Care (ACIC) surveys with 40 participants, and three site visits.

Results

Several overarching themes emerged in qualitative interviews and were substantiated by quantitative methods. Health system factors supporting survivorship care include organization and leadership commitment and program champions at various levels of the health care team. System barriers include reimbursement issues, lack of space, and the need for leadership commitment to support changes in clinical practices as well as having program “champions” among clinical staff. Multiple models of care include separate survivorship clinics and integrated models as well as consultative models. COEs’ scores on the ACIC survey showed overall “reasonable support” for survivorship care; however, the clinical information system domain was least developed. Although the ACIC findings indicated “reasonable support” for self-management, the qualitative analysis revealed that self-management support was largely limited to health promotion provided in clinic-based education and counseling sessions, with few COEs providing patients with self-management tools and interventions.

Conclusions

The CCM framework captured experiences and challenges of these COEs and provided insight into the current state of survivorship care in the context of National Cancer Institute-designated comprehensive cancer centers. Findings showed that cancer patients and providers could benefit from clinical information systems that would better identify candidates for survivorship care and provide timely information. In addition, a crucial area for development is self-management support outside of clinical care.

Implications for cancer survivors

Cancer survivors may benefit from learning about the experience and challenges faced by the eight LIVESTRONG Centers of Excellence in developing programs and models for cancer survivorship care, and these findings may inform patient and caregiver efforts to seek, evaluate, and advocate for quality survivorship programs designed to meet their needs.

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Acknowledgments

The authors would like to acknowledge contributions of the following individuals: Caroline Huffman, RN; K. Scott Baker, MD; and Donald Rosenstein, MD. This research was supported by funding from the LIVESTRONG Foundation and the V (Jim Valvano) Foundation.

Author information

Authors and Affiliations

  1. Department of Nutrition, Gillings School of Global Public Health and School of Medicine, University of North Carolina at Chapel Hill, CB #7461, 1700 Martin Luther King Blvd room 316, Chapel Hill, NC, 27599, USA

    Marci K. Campbell, Carmina G. Valle & Leanne Kaye

  2. UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC, USA

    Marci K. Campbell, Irene Tessaro, Mindy Gellin & Carmina G. Valle

  3. Goldsmith Research Group, Winston-Salem, NC, USA

    Shannon Golden

  4. Jonsson Comprehensive Cancer Center, University of California Los Angeles, Los Angeles, CA, USA

    Patricia A. Ganz

  5. Memorial Sloan-Kettering Cancer Center, New York City, NY, USA

    Mary S. McCabe

  6. Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, USA

    Linda A. Jacobs

  7. Biobehavioral Sciences Department, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    Karen Syrjala

  8. Ohio State University Comprehensive Cancer Center, Columbus, OH, USA

    Barbara Anderson

  9. University of Colorado Cancer Center, Aurora, CO, USA

    Alison F. Jones

  10. Dana Farber Cancer Institute, Harvard University, Boston, MA, USA

    Kenneth Miller

Authors
  1. Marci K. Campbell
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  2. Irene Tessaro
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  3. Mindy Gellin
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  4. Carmina G. Valle
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  5. Shannon Golden
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  6. Leanne Kaye
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  7. Patricia A. Ganz
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  8. Mary S. McCabe
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  9. Linda A. Jacobs
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  10. Karen Syrjala
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  11. Barbara Anderson
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  12. Alison F. Jones
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  13. Kenneth Miller
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Corresponding author

Correspondence to Marci K. Campbell.

Appendix: Qualitative phone interview questionnaire (version shown was used for COE Directors; slight adaptations were made for clinical staff, administrator, and community versions)

Appendix: Qualitative phone interview questionnaire (version shown was used for COE Directors; slight adaptations were made for clinical staff, administrator, and community versions)

I. Background and introduction

1. How long have you been with the LAF-COE?

Probe: So how many years is that?

2. What is your role with the LAF-COE?

3. Is your role full-time with LAF-COE?

Probe: If no, what percentage of your time is devoted to LAF-COE?

Probe: What other responsibilities do you have at your (cancer center)?

II. About the LAF-COE

1. What has been the most important accomplishment of the LAF-COE at (cancer center) and why?

2. In what ways has the LAF-COE enhanced cancer survivorship at (cancer center)?

3. What new programs have been developed and added because of the LAF-COE?

4. From your perspective, what do you think would not have been done at (cancer center) around survivorship without the LAF-COE funding?

5. How has the LAF-COE as a whole changed over time?

Probe: Have there been personnel changes? If so, what was their impact on the LAFCOE?

Probe: Have there been program changes? If so, describe their impact on the LAF-COE.

6. What do you think are your COE’s core strengths?

7. What do you think are your COE’s core weaknesses?

8. How could the LAF-COE function better?

III. About the LAF COE Network (not reported on in this paper)

1. Describe how your COE has used the LAF Network of COEs?

2. What have been the advantages of working with the network?

3. What have been the disadvantages of working with the network?

4. What has the network added to the success of your center?

IV. Specifics about your cancer center

1. How committed do you think the leadership of (cancer center) is to cancer survivorship?

2. What are the plans for the future of the LAF-COE at (cancer center)?

V. General questions about your organization

1. What models of care are being used at your LAF-COE?

2. In what ways, if any, have these models changed over time?

Probe: If there is a different direction from the original outset, describe it.

3. What challenges have you witnessed at (cancer center) in adding survivorship care to the treatment model?

4. What barriers exist that inhibit the organizational changes necessary at (cancer center) to focus more on the care of cancer survivors?

5. What have been the most successful health promotion strategies you’ve used in your survivorship program?

6. What guides your recommendations for health and wellness education?

7. How have you evaluated or plan on evaluating your survivorship programs?

VI. Community

Instructions: Let me ask you a few questions about your community:

8. Describe the experience of the LAF-COE working with the community?

9. What has been the most helpful strategy for community involvement? Why?

10. What have been barriers to working with the community? How are they being addressed?

If PI is also a Clinician, ask these questions:

Instructions: Now let me ask you a few questions about patient care:

1. How are patients referred to the survivorship program?

Probe: Who refers? When?

2. How are survivors evaluated medically?

3. How are survivors evaluated psychosocially?

Probe: Where is this done and who does it?

If not mentioned, use this probe: You haven’t mentioned any screening. Do you use any screening tools before the clinic visit?

4. What cancer patients at (cancer center) do you think have benefited most from LAF-COE and why?

5. What guides your recommendations for clinical surveillance?

6. Who does the medical record abstraction?

7. What treatment summary is used to compile data for survivorship care plans?

VII. Wrap-up

What have we not covered that you would like to share about LAF-COE?

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Campbell, M.K., Tessaro, I., Gellin, M. et al. Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network. J Cancer Surviv 5, 271–282 (2011). https://doi.org/10.1007/s11764-011-0180-z

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  • DOI: https://doi.org/10.1007/s11764-011-0180-z

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