Skip to main content
Top
Published in: Journal of Cancer Survivorship 6/2020

01-12-2020 | Care

Identifying patients’ priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care

Authors: K. Holly Mead, Sarah Raskin, Anne Willis, Hannah Arem, Sarah Murtaza, Laura Charney, Mandi Pratt-Chapman

Published in: Journal of Cancer Survivorship | Issue 6/2020

Login to get access

Abstract

Purpose

This study explored cancer survivors’ experiences with and priorities for cancer survivorship care to describe a patient-centered approach to quality survivorship care.

Methods

We conducted 22 focus groups with 170 adult survivors of breast, prostate, and colorectal cancer from six cities across the country and online. We used thematic analysis to identify participants’ principles and priorities for quality survivorship care.

Results

Based on our analysis of a limited group of cancer survivors, we identified two core principles that underlie participants’ expectations for survivorship care and 11 practice priorities that reflect opportunities to improve patient-centeredness at the individual, interpersonal, and organizational levels. The principles reflect participants’ desire to be better prepared for and equipped to accept and manage their chronic care needs post-cancer treatment. The priorities reflect practices that patients, providers, and cancer centers can engage in to ensure survivors’ goals for post-treatment care are met.

Conclusions

Results from the study suggest the need to expand conceptualization of high-quality survivorship care. The survivor principles and practice priorities identified in this study challenge the field to organize a more patient-centered survivorship care system that empowers and respects patients and provides a holistic approach to survivors’ chronic and long-term needs.

Implications for Cancer Survivors

Quality cancer survivorship care must reflect patients’ priorities. The findings from this study can be used to develop a patient-centered framework for survivorship care that can be used in conjunction with quality guidelines to ensure survivorship care is organized to achieve both clinical and patient-centered outcomes.
Appendix
Available only for authorised users
Footnotes
1
A person is considered a cancer survivor from the time of diagnosis until the time of death [1]. However, because we are looking at the system of care provided to survivors post-treatment, we use the American Society of Clinical Oncology’s “functional definition,” which considers survivors to be those “individuals who have successfully completed curative treatment of those who have transitioned to maintenance of prophylactic therapy” [2].
 
2
Totals add up to more than 100% because some survivors had been diagnosed with more than one cancer type.
 
3
The number cited in parentheses after each priority refers to the total number of times a theme was discussed across all 22 focus groups.
 
Literature
3.
go back to reference Viswanathan M, Halpern M, Evans TS, Birken SA, Mayer DK, Basch E. Models of survivorship care. Agency for Healthcare Research and Quality (AHRQ) technical brief no. 14. 2014 Viswanathan M, Halpern M, Evans TS, Birken SA, Mayer DK, Basch E. Models of survivorship care. Agency for Healthcare Research and Quality (AHRQ) technical brief no. 14. 2014
4.
go back to reference Edgington A, Morgan M. Looking beyond recurrence: comorbidities in cancer survivorship. Clin J Oncol Nurs. 2011;15(1):E3–E12.CrossRef Edgington A, Morgan M. Looking beyond recurrence: comorbidities in cancer survivorship. Clin J Oncol Nurs. 2011;15(1):E3–E12.CrossRef
5.
go back to reference Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in transition. Washington: National Academies Press; 2006. Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor: lost in transition. Washington: National Academies Press; 2006.
6.
go back to reference Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, et al. Patient’s supportive care needs beyond the end of cancer treatment: a prospective longitudinal study. J Clin Oncol. 2009;27(36):6172–9.CrossRef Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, et al. Patient’s supportive care needs beyond the end of cancer treatment: a prospective longitudinal study. J Clin Oncol. 2009;27(36):6172–9.CrossRef
11.
go back to reference Andersen L, DeRubeis J, Berman S, et al. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014;32(15):1605–19.CrossRef Andersen L, DeRubeis J, Berman S, et al. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. J Clin Oncol. 2014;32(15):1605–19.CrossRef
12.
go back to reference Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler E, Page K, editors. Cancer care for the whole patient: meeting psychosocial health needs. Washington: National Academies Press (US); 2008. 1. The psychosocial needs of cancer patients. Available from: https://www.ncbi.nlm.nih.gov/books/NBK4011/. Accessed 1 Feb 2019. Institute of Medicine (US) Committee on Psychosocial Services to Cancer Patients/Families in a Community Setting; Adler E, Page K, editors. Cancer care for the whole patient: meeting psychosocial health needs. Washington: National Academies Press (US); 2008. 1. The psychosocial needs of cancer patients. Available from: https://​www.​ncbi.​nlm.​nih.​gov/​books/​NBK4011/​.  Accessed 1 Feb 2019.
13.
go back to reference Cheung WY, Neville BA, Cameron DB, Cook FE, Earle CC. Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol. 2009;27(15):2489–95.CrossRef Cheung WY, Neville BA, Cameron DB, Cook FE, Earle CC. Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol. 2009;27(15):2489–95.CrossRef
14.
go back to reference Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev. 2013;70(4):351–79.CrossRef Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev. 2013;70(4):351–79.CrossRef
15.
go back to reference Mosadeghrad AM. A conceptual framework for quality of care. Mater Soc. 2012;24(4):251–61. Mosadeghrad AM. A conceptual framework for quality of care. Mater Soc. 2012;24(4):251–61.
16.
go back to reference Kline RM, Arora NK, Bradley CJ, Brauer ER, Graves DL, Lunsford NB, McCabe MS, Nasso SF, Nekhlyudov L, Rowland JH, Schear RM, & Ganz PA (2018). Long-term survivorship care after cancer treatment—summary of a 2017 national cancer policy forum workshop. In J Natl Cancer Inst (Vol. 110, Issue 12). Oxford University Press. https://doi.org/10.1093/jnci/djy176. Kline RM, Arora NK, Bradley CJ, Brauer ER, Graves DL, Lunsford NB, McCabe MS, Nasso SF, Nekhlyudov L, Rowland JH, Schear RM, & Ganz PA (2018). Long-term survivorship care after cancer treatment—summary of a 2017 national cancer policy forum workshop. In J Natl Cancer Inst (Vol. 110, Issue 12). Oxford University Press. https://​doi.​org/​10.​1093/​jnci/​djy176.
17.
go back to reference Institute of Medicine (IOM). Crossing the quality chasm: a new health system for the 21st century. Washington: National Academy Press; 2001. http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf. Accessed 11/07/2018 Institute of Medicine (IOM). Crossing the quality chasm: a new health system for the 21st century. Washington: National Academy Press; 2001. http://​www.​nationalacademie​s.​org/​hmd/​~/​media/​Files/​Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf. Accessed 11/07/2018
18.
go back to reference Blanch-Hartigan D, Chawla N, Beckjord EI, Forsythe LP, Moor JS, Hesse BW, et al. Cancer survivors’ receipt of treatment summaries and implications for patient-centered communication and quality of care. Patient Educ Couns. 2015;98:1274–9.CrossRef Blanch-Hartigan D, Chawla N, Beckjord EI, Forsythe LP, Moor JS, Hesse BW, et al. Cancer survivors’ receipt of treatment summaries and implications for patient-centered communication and quality of care. Patient Educ Couns. 2015;98:1274–9.CrossRef
19.
go back to reference Nissen MJ, Beran MS, Lee MW, Mehta SR, Pine DA, Swenson KK. Views of primary care providers on follow-up care of cancer patients. Fam Med. 2007;39(7):477–82.PubMed Nissen MJ, Beran MS, Lee MW, Mehta SR, Pine DA, Swenson KK. Views of primary care providers on follow-up care of cancer patients. Fam Med. 2007;39(7):477–82.PubMed
20.
go back to reference Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804.PubMed Stewart M, Brown JB, Donner A, McWhinney IR, Oates J, Weston WW, et al. The impact of patient-centered care on outcomes. J Fam Pract. 2000;49(9):796–804.PubMed
29.
go back to reference Craft E V, Billington C, O’Sullivan R, Watson W, Suter-Giorgini N, Singletary J, King E, Perfirgines M, Cashmore A, & Barwell J (2015). Supporting families with cancer: a patient centred survivorship model of care. In Familial Cancer (vol. 14, issue 4, pp. 637–640). Kluwer Academic Publishers. https://doi.org/10.1007/s10689-015-9815-y. Craft E V, Billington C, O’Sullivan R, Watson W, Suter-Giorgini N, Singletary J, King E, Perfirgines M, Cashmore A, & Barwell J (2015). Supporting families with cancer: a patient centred survivorship model of care. In Familial Cancer (vol. 14, issue 4, pp. 637–640). Kluwer Academic Publishers. https://​doi.​org/​10.​1007/​s10689-015-9815-y.
31.
go back to reference Tevaarwerk AJ, Klemp JR, van Londen GJ, Hesse BW, & Sesto ME (2018b). Moving beyond static survivorship care plans: a systems engineering approach to population health management for cancer survivors. In Cancer (vol. 124, issue 22, pp. 4292–4300). John Wiley and Sons Inc. https://doi.org/10.1002/cncr.31546. Tevaarwerk AJ, Klemp JR, van Londen GJ, Hesse BW, & Sesto ME (2018b). Moving beyond static survivorship care plans: a systems engineering approach to population health management for cancer survivors. In Cancer (vol. 124, issue 22, pp. 4292–4300). John Wiley and Sons Inc. https://​doi.​org/​10.​1002/​cncr.​31546.
33.
go back to reference Barry MJ, Levitan SE, Billingham V. Shared decision making—the pinnacle of patient-centered care nothing about me without me. N Engl J Med. 2012;366:780–1.CrossRef Barry MJ, Levitan SE, Billingham V. Shared decision making—the pinnacle of patient-centered care nothing about me without me. N Engl J Med. 2012;366:780–1.CrossRef
36.
go back to reference Clarke L, Bourn S, Skoufalos A, Beck H, Castillo J. An innovative approach to health care delivery for patients with chronic conditions. Popul Health Manag. 2017;20(1):23–30.CrossRef Clarke L, Bourn S, Skoufalos A, Beck H, Castillo J. An innovative approach to health care delivery for patients with chronic conditions. Popul Health Manag. 2017;20(1):23–30.CrossRef
38.
go back to reference Maeng D, Martsolf R, Scanlon P, Christianson B. Care coordination for the chronically ill: understanding the patient's perspective. Health Serv Res. 2012;47(5):1960–79.CrossRef Maeng D, Martsolf R, Scanlon P, Christianson B. Care coordination for the chronically ill: understanding the patient's perspective. Health Serv Res. 2012;47(5):1960–79.CrossRef
42.
go back to reference Creswell JW. Research design: qualitative, quantitative, and mixed methods approaches. 4th ed. Thousand Oaks: SAGE Publications; 2014. Creswell JW. Research design: qualitative, quantitative, and mixed methods approaches. 4th ed. Thousand Oaks: SAGE Publications; 2014.
44.
go back to reference National Institutes of Health. NIH fact sheets—cancer. National Institutes of Health. https://report.nih.goc/nihfactsheets/viewfactsheet.aspx?csid=75. Accessed March 22, 2019. National Institutes of Health. NIH fact sheets—cancer. National Institutes of Health. https://​report.​nih.​goc/​nihfactsheets/​viewfactsheet.​aspx?​csid=​75.​ Accessed March 22, 2019.
45.
go back to reference Krueger R and Casey M. Focus groups: a practical guide for applied research. 5th ed. Sage Publications; 2009. Krueger R and Casey M. Focus groups: a practical guide for applied research. 5th ed. Sage Publications; 2009.
46.
go back to reference Bazely P and Jackson K. Qualitative data analysis with Nvivo. 2nd ed. Sage Publications; 2013. Bazely P and Jackson K. Qualitative data analysis with Nvivo. 2nd ed. Sage Publications; 2013.
47.
go back to reference Richard L, Gauvin L, Raine K. Ecological models revisited: their uses and evolution in health promotion over two decades. Annu Rev Public Health. 2011;32(1):307–26.CrossRef Richard L, Gauvin L, Raine K. Ecological models revisited: their uses and evolution in health promotion over two decades. Annu Rev Public Health. 2011;32(1):307–26.CrossRef
52.
go back to reference Salsman JM, Pustejovsky JE, Schueller SM, Hernandez R, Berendsen M, McLouth LES, & Moskowitz JT (2019). Psychosocial interventions for cancer survivors: a meta-analysis of effects on positive affect. In Journal of Cancer Survivorship (Vol. 13, issue 6, pp. 943–955). Springer. https://doi.org/10.1007/s11764-019-00811-8. Salsman JM, Pustejovsky JE, Schueller SM, Hernandez R, Berendsen M, McLouth LES, & Moskowitz JT (2019). Psychosocial interventions for cancer survivors: a meta-analysis of effects on positive affect. In Journal of Cancer Survivorship (Vol. 13, issue 6, pp. 943–955). Springer. https://​doi.​org/​10.​1007/​s11764-019-00811-8.
53.
go back to reference Bailo L, Guiddi P, Vergani L, Marton G, & Pravettoni G (2019). The patient perspective: investigating patient empowerment enablers and barriers within the oncological care process. In ecancermedicalscience (vol. 13). ecancer Global Foundation. https://doi.org/10.3332/ecancer.2019.912. Bailo L, Guiddi P, Vergani L, Marton G, & Pravettoni G (2019). The patient perspective: investigating patient empowerment enablers and barriers within the oncological care process. In ecancermedicalscience (vol. 13). ecancer Global Foundation. https://​doi.​org/​10.​3332/​ecancer.​2019.​912.
55.
go back to reference Beckham C, Burker J, Burker J, Feldman E, Costakis J. Self-efficacy and adjustment in cancer patients: a preliminary report. Behav Med. 1997;23(3):138–42.CrossRef Beckham C, Burker J, Burker J, Feldman E, Costakis J. Self-efficacy and adjustment in cancer patients: a preliminary report. Behav Med. 1997;23(3):138–42.CrossRef
56.
go back to reference McCorkie R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, et al. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61:50–62.CrossRef McCorkie R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, et al. Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011;61:50–62.CrossRef
57.
go back to reference Chen J, Mullins D, Novak P, Thomas B. Personalized strategies to activate and empower patients in health care and reduce health disparities. Health Educ Behav: the Official Publication of the Society for Public Health Education. 2015;43(1):25–34.CrossRef Chen J, Mullins D, Novak P, Thomas B. Personalized strategies to activate and empower patients in health care and reduce health disparities. Health Educ Behav: the Official Publication of the Society for Public Health Education. 2015;43(1):25–34.CrossRef
59.
go back to reference Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population; Board on Health Care Services; Institute of Medicine; Levit L, Balogh E, Nass S, et al., editors. Delivering high-quality cancer care: charting a new course for a system in crisis. Washington: National Academies Press (US); 2013. Patient-centered communication and shared decision making. Available from: https://www.ncbi.nlm.nih.gov/books/NBK202146/ Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population; Board on Health Care Services; Institute of Medicine; Levit L, Balogh E, Nass S, et al., editors. Delivering high-quality cancer care: charting a new course for a system in crisis. Washington: National Academies Press (US); 2013. Patient-centered communication and shared decision making. Available from: https://​www.​ncbi.​nlm.​nih.​gov/​books/​NBK202146/​
60.
go back to reference Nutting A, Crabtree F, Miller L, Stange C, Stewart E, Jaén C. Transforming physician practices to patient-centered medical homes: lessons from the national demonstration project. Health Affairs Project Hope. 2011;30(3):439–45.CrossRef Nutting A, Crabtree F, Miller L, Stange C, Stewart E, Jaén C. Transforming physician practices to patient-centered medical homes: lessons from the national demonstration project. Health Affairs Project Hope. 2011;30(3):439–45.CrossRef
61.
go back to reference Reid J, Coleman K, Johnson A, Fishman A, Hsu C, Soman P, et al. The group medical home at year two: cost savings, higher patient satisfaction, and less burnout for providers. Health Aff. 2010;29(5):835–43.CrossRef Reid J, Coleman K, Johnson A, Fishman A, Hsu C, Soman P, et al. The group medical home at year two: cost savings, higher patient satisfaction, and less burnout for providers. Health Aff. 2010;29(5):835–43.CrossRef
Metadata
Title
Identifying patients’ priorities for quality survivorship: conceptualizing a patient-centered approach to survivorship care
Authors
K. Holly Mead
Sarah Raskin
Anne Willis
Hannah Arem
Sarah Murtaza
Laura Charney
Mandi Pratt-Chapman
Publication date
01-12-2020
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 6/2020
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-020-00905-8

Other articles of this Issue 6/2020

Journal of Cancer Survivorship 6/2020 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine