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Published in: Translational Behavioral Medicine 3/2012

01-09-2012 | Original Research

Cancer survivors and the patient-centered medical home

Authors: Shawna V. Hudson, PhD, Suzanne M. Miller, PhD, Jennifer Hemler, MA, Aneesah McClinton, BS, Kevin C. Oeffinger, MD, Alfred Tallia, MD, Benjamin F. Crabtree, PhD

Published in: Translational Behavioral Medicine | Issue 3/2012

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Abstract

Survivor care plans have been described as useful tools for enhancing the quality of follow-up care that cancer survivors receive after their active treatment has been completed. The relative success of current survivor care plan models is strongly dependent on the actions of individual patients. In this qualitative study of 33 cancer survivors, we explored patients’ understanding of follow-up care and their motivations and resources for seeking care. Three types of survivor experiences were identified from narratives of patients treated in community oncology and National Cancer Institute-designated comprehensive cancer centers, ranging from nonactivated patients who need enhanced health care communication and decision support to navigate their care to highly activated patients adept at navigating complex health care settings. Using the patient-centered medical home as a conceptual framework, we propose a research, policy, and practice agenda that advocates for multifaceted decision support to enhance cancer survivorship and follow-up care.
Literature
1.
go back to reference Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH. Cancer survivors: a booming population. Cancer Epidemiol Biomark Prev. 2011;20:1996-2005.CrossRef Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH. Cancer survivors: a booming population. Cancer Epidemiol Biomark Prev. 2011;20:1996-2005.CrossRef
2.
go back to reference Hewitt ME, Greenfield S, Stovall E, National Cancer Policy Board (U.S.), Committee on Cancer Survivorship: Improving Care and Quality of Life. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006. Hewitt ME, Greenfield S, Stovall E, National Cancer Policy Board (U.S.), Committee on Cancer Survivorship: Improving Care and Quality of Life. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006.
3.
4.
go back to reference Ogle KS, Swanson GM, Woods N, Azzouz F. Cancer and comorbidity: redefining chronic diseases. Cancer. 2000;88:653-663.PubMedCrossRef Ogle KS, Swanson GM, Woods N, Azzouz F. Cancer and comorbidity: redefining chronic diseases. Cancer. 2000;88:653-663.PubMedCrossRef
5.
go back to reference Sunga AY, Eberl MM, Oeffinger KC, Hudson MM, Mahoney MC. Care of cancer survivors. Am Fam Physician. 2005;71:699-706.PubMed Sunga AY, Eberl MM, Oeffinger KC, Hudson MM, Mahoney MC. Care of cancer survivors. Am Fam Physician. 2005;71:699-706.PubMed
6.
go back to reference Demark-Wahnefried W, Pinto BM, Gritz ER. Promoting health and physical function among cancer survivors: potential for prevention and questions that remain. J Clin Oncol. 2006;24:5125-5131.PubMedCrossRef Demark-Wahnefried W, Pinto BM, Gritz ER. Promoting health and physical function among cancer survivors: potential for prevention and questions that remain. J Clin Oncol. 2006;24:5125-5131.PubMedCrossRef
7.
go back to reference Baker F, Denniston M, Smith T, West MM. Adult cancer survivors: how are they faring? Cancer. 2005;104:2565-2576.PubMedCrossRef Baker F, Denniston M, Smith T, West MM. Adult cancer survivors: how are they faring? Cancer. 2005;104:2565-2576.PubMedCrossRef
8.
go back to reference Demark-Wahnefried W, Aziz NM, Rowland JH, Pinto BM. Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer. J Clin Oncol. 2005;23:5814-5830.PubMedCrossRef Demark-Wahnefried W, Aziz NM, Rowland JH, Pinto BM. Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer. J Clin Oncol. 2005;23:5814-5830.PubMedCrossRef
9.
go back to reference Kattlove H, Winn RJ. Ongoing care of patients after primary treatment for their cancer. CA Cancer J Clin. 2003;53:172-196.PubMedCrossRef Kattlove H, Winn RJ. Ongoing care of patients after primary treatment for their cancer. CA Cancer J Clin. 2003;53:172-196.PubMedCrossRef
10.
go back to reference Miller DC, Sanda MG, Dunn RL, et al. Long-term outcomes among localized prostate cancer survivors: health-related quality-of-life changes after radical prostatectomy, external radiation, and brachytherapy. J Clin Oncol. 2005;23:2772-2780.PubMedCrossRef Miller DC, Sanda MG, Dunn RL, et al. Long-term outcomes among localized prostate cancer survivors: health-related quality-of-life changes after radical prostatectomy, external radiation, and brachytherapy. J Clin Oncol. 2005;23:2772-2780.PubMedCrossRef
11.
go back to reference Wei JT, Dunn RL, Sandler HM, et al. Comprehensive comparison of health-related quality of life after contemporary therapies for localized prostate cancer. J Clin Oncol. 2002;20:557-566.PubMedCrossRef Wei JT, Dunn RL, Sandler HM, et al. Comprehensive comparison of health-related quality of life after contemporary therapies for localized prostate cancer. J Clin Oncol. 2002;20:557-566.PubMedCrossRef
12.
go back to reference Shrader-Bogen CL, Kjellberg JL, McPherson CP, Murray CL. Quality of life and treatment outcomes: prostate carcinoma patients' perspectives after prostatectomy or radiation therapy. Cancer. 1997;79:1977-1986.PubMedCrossRef Shrader-Bogen CL, Kjellberg JL, McPherson CP, Murray CL. Quality of life and treatment outcomes: prostate carcinoma patients' perspectives after prostatectomy or radiation therapy. Cancer. 1997;79:1977-1986.PubMedCrossRef
13.
go back to reference Hewitt ME, Ganz PA, Institute of Medicine (U.S.), American Society of Clinical Oncology (U.S.). From Cancer Patient to Cancer Survivor: Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium. Washington, DC: National Academies Press; 2006. Hewitt ME, Ganz PA, Institute of Medicine (U.S.), American Society of Clinical Oncology (U.S.). From Cancer Patient to Cancer Survivor: Lost in Transition: An American Society of Clinical Oncology and Institute of Medicine Symposium. Washington, DC: National Academies Press; 2006.
14.
go back to reference Hudson SV, Chubak J, Coups EJ, et al. Identifying key questions to advance research and practice in cancer survivorship follow-up care: a report from the ASPO Survivorship Interest Group. Cancer Epidemiol Biomark Prev. 2009;18:2152-2154.CrossRef Hudson SV, Chubak J, Coups EJ, et al. Identifying key questions to advance research and practice in cancer survivorship follow-up care: a report from the ASPO Survivorship Interest Group. Cancer Epidemiol Biomark Prev. 2009;18:2152-2154.CrossRef
15.
go back to reference Miller SM, American Psychological Association. Handbook of Cancer Control and Behavioral Science: A Resource for Researchers, Practitioners, and Policy Makers. 1st ed. Washington, DC: American Psychological Association; 2009. Miller SM, American Psychological Association. Handbook of Cancer Control and Behavioral Science: A Resource for Researchers, Practitioners, and Policy Makers. 1st ed. Washington, DC: American Psychological Association; 2009.
16.
17.
go back to reference Arrow K, Auerbach A, Bertko J, et al. Toward a 21st-century health care system: recommendations for health care reform. Ann Intern Med. 2009;150:493-495.PubMed Arrow K, Auerbach A, Bertko J, et al. Toward a 21st-century health care system: recommendations for health care reform. Ann Intern Med. 2009;150:493-495.PubMed
18.
go back to reference Scholle SH, Saunders RC, Tirodkar MA, Torda P, Pawlson LG. Patient-centered medical homes in the United States. J Ambul Care Manag. 2011;34:20-32. Scholle SH, Saunders RC, Tirodkar MA, Torda P, Pawlson LG. Patient-centered medical homes in the United States. J Ambul Care Manag. 2011;34:20-32.
19.
go back to reference Sia C, Tonniges TF, Osterhus E, Taba S. History of the medical home concept. Pediatrics. 2004;113:1473-1478.PubMed Sia C, Tonniges TF, Osterhus E, Taba S. History of the medical home concept. Pediatrics. 2004;113:1473-1478.PubMed
20.
go back to reference Wise CG, Alexander JA, Green LA, Cohen GR, Koster CR. Journey toward a patient-centered medical home: readiness for change in primary care practices. Milbank Q. 2011;89:399-424.PubMedCrossRef Wise CG, Alexander JA, Green LA, Cohen GR, Koster CR. Journey toward a patient-centered medical home: readiness for change in primary care practices. Milbank Q. 2011;89:399-424.PubMedCrossRef
21.
go back to reference National Committee for Quality Assurance. NCQA’s Patient-Centered Medical Home (PCMH) 2011 Standards and Guidelines. Retrieved 04/19/2012, 2012 from http://www.ncqa.org/tabid/631/default.aspx National Committee for Quality Assurance. NCQA’s Patient-Centered Medical Home (PCMH) 2011 Standards and Guidelines. Retrieved 04/19/2012, 2012 from http://​www.​ncqa.​org/​tabid/​631/​default.​aspx
22.
go back to reference Nutting PA, Crabtree BF, Miller WL, et al. Transforming physician practices to patient-centered medical homes: lessons from the national demonstration project. Health Aff (Millwood). 2011;30:439-445.CrossRef Nutting PA, Crabtree BF, Miller WL, et al. Transforming physician practices to patient-centered medical homes: lessons from the national demonstration project. Health Aff (Millwood). 2011;30:439-445.CrossRef
23.
go back to reference Gruman J, Rovner MH, French ME, et al. From patient education to patient engagement: implications for the field of patient education. Patient Educ Couns. 2010;78:350-356.PubMedCrossRef Gruman J, Rovner MH, French ME, et al. From patient education to patient engagement: implications for the field of patient education. Patient Educ Couns. 2010;78:350-356.PubMedCrossRef
24.
go back to reference Institute of Medicine (U.S.), Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001. Institute of Medicine (U.S.), Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
26.
go back to reference Hibbard JH. Moving toward a more patient-centered health care delivery system. Health Aff (Millwood). 2004, Suppl Variation:VAR133-135. Hibbard JH. Moving toward a more patient-centered health care delivery system. Health Aff (Millwood). 2004, Suppl Variation:VAR133-135.
27.
go back to reference Hibbard JH, Mahoney E. Toward a theory of patient and consumer activation. Patient Educ Couns. 2010;78:377-381.PubMedCrossRef Hibbard JH, Mahoney E. Toward a theory of patient and consumer activation. Patient Educ Couns. 2010;78:377-381.PubMedCrossRef
28.
go back to reference Shapiro CL, McCabe MS, Syrjala KL, et al. The LIVESTRONG Survivorship Center of Excellence Network. J Cancer Surviv. 2009;3:4-11.PubMedCrossRef Shapiro CL, McCabe MS, Syrjala KL, et al. The LIVESTRONG Survivorship Center of Excellence Network. J Cancer Surviv. 2009;3:4-11.PubMedCrossRef
29.
30.
go back to reference Jacobs LA, Palmer SC, Schwartz LA, et al. Adult cancer survivorship: evolution, research, and planning care. CA Cancer J Clin. 2009;59:391-410.PubMedCrossRef Jacobs LA, Palmer SC, Schwartz LA, et al. Adult cancer survivorship: evolution, research, and planning care. CA Cancer J Clin. 2009;59:391-410.PubMedCrossRef
31.
go back to reference Hill-Kayser CE, Vachani C, Hampshire MK, Jacobs LA, Metz JM. Utilization of internet-based survivorship care plans by lung cancer survivors. Clin Lung Cancer. 2009;10:347-352.PubMedCrossRef Hill-Kayser CE, Vachani C, Hampshire MK, Jacobs LA, Metz JM. Utilization of internet-based survivorship care plans by lung cancer survivors. Clin Lung Cancer. 2009;10:347-352.PubMedCrossRef
32.
go back to reference Hill-Kayser CE, Vachani C, Hampshire MK, Jacobs LA, Metz JM. An internet tool for creation of cancer survivorship care plans for survivors and health care providers: design, implementation, use and user satisfaction. J Med Internet Res. 2009;11:e39.PubMedCrossRef Hill-Kayser CE, Vachani C, Hampshire MK, Jacobs LA, Metz JM. An internet tool for creation of cancer survivorship care plans for survivors and health care providers: design, implementation, use and user satisfaction. J Med Internet Res. 2009;11:e39.PubMedCrossRef
33.
go back to reference Hudson SV, Miller SM, Hemler J, et al. "Not what I want, but maybe what I need": adult cancer survivor discuss follow-up in primary care. Annals of Family Medicine. 2012, in press. Hudson SV, Miller SM, Hemler J, et al. "Not what I want, but maybe what I need": adult cancer survivor discuss follow-up in primary care. Annals of Family Medicine. 2012, in press.
34.
go back to reference Crabtree BF, Miller WL. Doing Qualitative Research. 2nd ed. Thousand Oaks, Calif.: Sage Publications; 1999. Crabtree BF, Miller WL. Doing Qualitative Research. 2nd ed. Thousand Oaks, Calif.: Sage Publications; 1999.
35.
go back to reference Denzin NK, Lincoln YS. Handbook of Qualitative Research. 2nd ed. Thousand Oaks, Calif.: Sage Publications; 2000. Denzin NK, Lincoln YS. Handbook of Qualitative Research. 2nd ed. Thousand Oaks, Calif.: Sage Publications; 2000.
36.
go back to reference Miles MB, Huberman AM. Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Thousand Oaks: Sage Publications; 1994. Miles MB, Huberman AM. Qualitative Data Analysis: An Expanded Sourcebook. 2nd ed. Thousand Oaks: Sage Publications; 1994.
37.
go back to reference Muhr T. ATLAS.ti. Berlin: Scientific Software Development 2006. Muhr T. ATLAS.ti. Berlin: Scientific Software Development 2006.
38.
go back to reference Kirchner J, Edlund CN, Henderson K, et al. Using a multi-level approach to implement a primary care mental health (PCMH) program. Fam Syst Health. 2010;28:161-174.PubMedCrossRef Kirchner J, Edlund CN, Henderson K, et al. Using a multi-level approach to implement a primary care mental health (PCMH) program. Fam Syst Health. 2010;28:161-174.PubMedCrossRef
39.
go back to reference Nutting PA, Crabtree BF, Miller WL, et al. Journey to the patient-centered medical home: a qualitative analysis of the experiences of practices in the National Demonstration Project. Ann Fam Med. 2010;8(Suppl 1):S45-S56. S92.PubMedCrossRef Nutting PA, Crabtree BF, Miller WL, et al. Journey to the patient-centered medical home: a qualitative analysis of the experiences of practices in the National Demonstration Project. Ann Fam Med. 2010;8(Suppl 1):S45-S56. S92.PubMedCrossRef
40.
go back to reference Nutting PA, Crabtree BF, Stewart EE, et al. Effect of facilitation on practice outcomes in the National Demonstration Project model of the patient-centered medical home. Ann Fam Med. 2010;8(Suppl 1):S33-S44. S92.PubMedCrossRef Nutting PA, Crabtree BF, Stewart EE, et al. Effect of facilitation on practice outcomes in the National Demonstration Project model of the patient-centered medical home. Ann Fam Med. 2010;8(Suppl 1):S33-S44. S92.PubMedCrossRef
41.
go back to reference Nutting PA, Miller WL, Crabtree BF, et al. Initial lessons from the first national demonstration project on practice transformation to a patient-centered medical home. Ann Fam Med. 2009;7:254-260.PubMedCrossRef Nutting PA, Miller WL, Crabtree BF, et al. Initial lessons from the first national demonstration project on practice transformation to a patient-centered medical home. Ann Fam Med. 2009;7:254-260.PubMedCrossRef
42.
go back to reference Richmeier S. Will the real PCMH step forward? MGMA Connex. 2011;11:19-20.PubMed Richmeier S. Will the real PCMH step forward? MGMA Connex. 2011;11:19-20.PubMed
43.
go back to reference Sepucha KR, Fowler FJ, Jr., Mulley AG, Jr. Policy support for patient-centered care: the need for measurable improvements in decision quality. Health Aff (Millwood). 2004, Suppl Variation:VAR54-62. Sepucha KR, Fowler FJ, Jr., Mulley AG, Jr. Policy support for patient-centered care: the need for measurable improvements in decision quality. Health Aff (Millwood). 2004, Suppl Variation:VAR54-62.
44.
go back to reference Nielsen-Bohlman L, Institute of Medicine (U.S.), Committee on Health Literacy. Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press; 2004. Nielsen-Bohlman L, Institute of Medicine (U.S.), Committee on Health Literacy. Health Literacy: A Prescription to End Confusion. Washington, DC: National Academies Press; 2004.
45.
go back to reference Hernandez LM, Institute of Medicine (U.S.), Roundtable on Health Literacy. Health Literacy, eHealth, and Communication: Putting The Consumer First: Workshop Summary. Washington, DC: National Academies Press; 2009. Hernandez LM, Institute of Medicine (U.S.), Roundtable on Health Literacy. Health Literacy, eHealth, and Communication: Putting The Consumer First: Workshop Summary. Washington, DC: National Academies Press; 2009.
46.
go back to reference Wizemann TM, Institute of Medicine (U.S.), Roundtable on Health Literacy, Institute of Medicine (U.S.), Board on Population Health and Public Health Practice. Health Literacy Implications for Health Care Reform: Workshop Summary. Washington, DC: National Academies Press; 2011. Wizemann TM, Institute of Medicine (U.S.), Roundtable on Health Literacy, Institute of Medicine (U.S.), Board on Population Health and Public Health Practice. Health Literacy Implications for Health Care Reform: Workshop Summary. Washington, DC: National Academies Press; 2011.
47.
go back to reference Institute of Medicine (U.S.), Forum on the Science of Health Care Quality Improvement and Implementation, Chao S, Anderson K, et al. Toward Health Equity and Patient-Centeredness: Integrating Health Literacy, Disparities Reduction, and Quality Improvement: Workshop Summary. Washington, DC: National Academies Press; 2009. Institute of Medicine (U.S.), Forum on the Science of Health Care Quality Improvement and Implementation, Chao S, Anderson K, et al. Toward Health Equity and Patient-Centeredness: Integrating Health Literacy, Disparities Reduction, and Quality Improvement: Workshop Summary. Washington, DC: National Academies Press; 2009.
48.
go back to reference Zarcadoolas C, Pleasant AF, Greer DS. Advancing Health Literacy: A Framework for Understanding and Action. 1st ed. San Francisco, CA: Jossey-Bass; 2006. Zarcadoolas C, Pleasant AF, Greer DS. Advancing Health Literacy: A Framework for Understanding and Action. 1st ed. San Francisco, CA: Jossey-Bass; 2006.
49.
go back to reference Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res. 2007;42:1443-1463.PubMedCrossRef Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res. 2007;42:1443-1463.PubMedCrossRef
50.
go back to reference Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40:1918-1930.PubMedCrossRef Hibbard JH, Mahoney ER, Stockard J, Tusler M. Development and testing of a short form of the patient activation measure. Health Serv Res. 2005;40:1918-1930.PubMedCrossRef
51.
52.
go back to reference Garrett M. Understanding medical home: a new opportunity for case managers. Prof Case Manag. 2009;14:3-4.PubMed Garrett M. Understanding medical home: a new opportunity for case managers. Prof Case Manag. 2009;14:3-4.PubMed
Metadata
Title
Cancer survivors and the patient-centered medical home
Authors
Shawna V. Hudson, PhD
Suzanne M. Miller, PhD
Jennifer Hemler, MA
Aneesah McClinton, BS
Kevin C. Oeffinger, MD
Alfred Tallia, MD
Benjamin F. Crabtree, PhD
Publication date
01-09-2012
Publisher
Springer-Verlag
Published in
Translational Behavioral Medicine / Issue 3/2012
Print ISSN: 1869-6716
Electronic ISSN: 1613-9860
DOI
https://doi.org/10.1007/s13142-012-0138-3

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