Editorial
How Should We “Empower” Cancer Patients? Judith S. Kaur, MD
”Empowerment” is a hot topic in health research these days. A quick Medline search using the phrase “patient empowerment” elicits over 500 recent articles. In this edition of Cancer, our Canadian colleagues provide us with 2 articles that analyze a simple, validated instrument to assess how we empower cancer patients.1,2 Their definition of empowerment is a sense of control over one’s life and, thus, better coping. Empowerment should occur throughout the cancer continuum of care. Maunsell and colleagues used 2 populations—a population-based cancer registry and the Canadian Cancer Society’s information and peer-support programs. Five (of 8) components of the Health Education Impact Questionnaire (heiQ) correlated strongly with the construct of “empowerment”—social integration and support, health service navigation, constructive attitudes and approaches, skill and technique acquisition, and emotional distress. Lauzier’s group then used these indicators to evaluate cancer organizations’ support services. The stated goal of support services is to empower patients so they can become partners with their providers in optimizing care. These 2 articles provide important steps in understanding what works in the realm of patient support rather than assuming a priori that the services provided are effective. Recent efforts in research on quality of life, patient navigation,3-6 and the use of support groups have had various impacts, likely because different scales were measuring different but related dimensions of empowerment. The effectiveness of patient navigation in overcoming barriers to cancer screening has been well documented.7,8 Clinical practice guidelines are being proposed for everything from psychosocial to spiritual care of the cancer survivor, all with the intent to “empower” our patients.9,10 New research is focusing on patient-reported outcomes in clinical trials with the development of reporting standards.11,12 Oncology research has evolved in recent years beyond studying the drugs, side effects, and years of survival to understanding the totality of the cancer experience. Indeed, oncology is now following the pattern of other chronic diseases to investigate how management of the patient changes over the course of disease. An accumulating body of evidence indicates that chronic illness self-management programs worldwide are improving health outcomes.13 More and more, cancer patients are included in the chronic disease category, and almost all support and management occurs outside the clinic and hospital settings. Studies have investigated specific diseases, such as chronic myeloid leukemia and other cancers, using oncology nurses to assess patient self-management of symptoms.14,15 Others have assessed the impact of patient navigation on compliance with treatment such as radiation therapy.1 Cancer survivorship plans have now being analyzed to help patients and families navigate post-treatment long-term needs.16,17 There will continue to be increased need for patients and families to self-manage during treatments, recovery, and survivorship. Health care reforms are emphasizing that health care is not something “done to” an individual but, rather, under the new paradigm, a team effort with the patient at the center. Understanding how to maximize patient empowerment may reduce unnecessary medical interventions, strengthen provider-patient communication, and potentially even lead to improved survival. However, to look scientifically at the potentials in health care planning, policies, and priorities, we need validated instruments. To the credit of this investigative team, they are now embarking on a randomized clinical trial of electronic support in patients with colorectal cancer that will then be assessed using the validated heiQ tool. This tool’s scales measure intrapersonal, interactional, and behavioral dimensions. There is potential to intervene with patients who have low empowerment scores with the objective of reducing complications. It may be necessary, indeed essential, to validate this and other tools in other populations. For example, 54% to 64% of the respondents in these studies had a college education. Most (83%) were women and had breast cancer (56%). Therefore, future work must investigate men with cancer and other common cancers more completely. Many underserved and
Corresponding author: Judith S. Kaur, MD, Mayo Clinic, 200 First Street SW, Rochester, MN 55905; Fax: (507) 284 1803; [email protected] Mayo Clinic Comprehensive Cancer Center, Rochester, Minnesota See referenced original articles on pages 3219-27 and 3228-36, this issue. DOI: 10.1002/cncr.28852, Received: April 28, 2014; Accepted: May 13, 2014, Published online July 2, 2014 in Wiley Online Library (wileyonlinelibrary.com)
3108
Cancer
October 15, 2014
Editorial/Kaur
minority patients likely need empowerment tools but may not respond well to this type of questionnaire. Patients from the Canadian Cancer Society’s information and peer-support programs may include a significant group of patients who already feel empowered, as acknowledged by the authors. What about the patient’s with the lowest empowerment scores? We do not get a clear view of that subgroup in these evaluations. Poverty is strongly associated with lack of resources, information, and knowledge as well as distrust of the health care system.18 Even the “digital divide” may increase the differential in patient access to usable information. Some groups are investigating web-based tools to empower uniquely vulnerable populations, such as older African Americans, to enhance communication with their physicians.19 Web-based formats have both benefits and limitations.20 Many minority populations in our country suffer from several comorbidities, including cancer, and have higher morbidity and mortality from those chronic diseases.21 We do not know whether different empowerment techniques are required for maximal support of our more complicated patients. We need research to sort out how best to advocate and case manage these more complex medical and cultural situations. If we are to inform clinical guidelines and patient care, then we need high-quality evidence on the relative benefits and harms of interventions in different populations. New research is focusing on patient-reported outcomes in clinical trials with the development of reporting standards.10,11 Our clinical trials system is still challenged to accrue more minority and underserved populations to high-impact clinical trials. The National Cancer Institute’s Center to Reduce Cancer Health Disparities is supporting community-based participatory research as a valuable approach to engaging underserved and minority communities in the clinical trials process. The infrastructure needs and cultural parameters of quality cancer care are acknowledged by the work of the 23 Community Networks Programs. More work must be done to empower patients from those communities to truly have ownership and trust in the system. Patient-reported outcomes from clinical trials are expected to empower patients to make health care decisions based on their own values.12 Unless we recruit a broader range of patients into these trials, will we only be empowering those patients who are already powerful with resources, access, and support systems already in place? We honestly do not know yet how to build “values” into our clinical trials program other than noting that survival is a universal value. Patient-reported outcomes also Cancer
October 15, 2014
purport to level the playing field between physician and patient. Does providing the patients with more statistics really do that? If we think that statistical results from prior trials will become part of routine clinical practice education for cancer patients, then more research is needed on methods to improve health literacy—especially in those with less than a college education. Although education in a nonhealth field clearly does not guarantee health literacy, it does increase the chance patients can use tools to quickly understand and discuss treatments with their providers. These articles raise other questions about what happens to a cancer patient long term and how that relates to their empowerment level. The patients in this study were 3 to 36 months post-treatment, yet fewer than half had returned to gainful employment, even after factoring in the age of the individual participants. We do not know whether that was the subgroup which felt lower levels of empowerment. What are we to do with patients who do not respond to our current standard support efforts? What have we learned from the breast advocacy community about empowering cancer patients? Does empowerment affect our ability to recruit minority patients to clinical trials? I suggest that it strongly correlates. We are all indebted to the leadership of Harold Freeman in developing patient navigation. Yet, a recent op-ed by Dr. Freeman,22 Why Black Women Die of Cancer, describes how far we have to go. We cannot be satisfied that we have the right tools for “empowerment” until all cancer patients feel empowered! FUNDING SUPPORT This work was supported by grant CA153605 from the National Cancer Institute.
CONFLICT OF INTEREST DISCLOSURES The author made no disclosures.
REFERENCES 1. Maunsell E, Lauzier S, Brunet J, Pelletier S, Osborne RH, Campbell SH. Health-related empowerment in cancer: validity of scales from the Health Education Impact Questionnaire. Cancer. 2014;120: 3228-3236. 2. Lauzier S, Campbell HS, Livingston PM, Maunsell E. Indicators for evaluating cancer organizations; support services: performance and associations with empowerment. Cancer. 2014;120:3219-3227. 3. Kanekar D, Petereit D. Walking Forward: a program designed to lower cancer mortality rates among American Indians in western South Dakota. S D Med. 2009;62:151-152. 4. Braun KL, Kagawa-Singer M, Holden AE, et al. Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved. 2012;23:398-413. 5. Krebs LU, Burhansstipabnov L, Watanabe-Galloway S, Pingatore NL, Petereit DG, Isham D. Navigation as an intervention to
3109
Editorial
6. 7.
8. 9. 10. 11. 12.
13.
eliminate disparities in American Indian communities. Semin Oncol Nurs. 2013;29:118-123. Eschiti V, Burhansstipanov L, Watanabe-Galloway S. Native cancer navigation, the state of the science. Clin J Oncol Nurs. 2012;16:73-82. Vickers SM, Fouad MN. An overview of EMPaCT and fundamental issues affecting minority participation in cancer clinical trials: enhancing minority participation in clinical trials (EMPaCT): laying the groundwork for improving minority clinical trials accrual. Cancer. 2014;120(7 suppl):1087-1087. Ghebre RG, Jones LA, Wenzel JA, Martin MY, Durant RW, Ford JG. State-of-the-science of patient navigation as a strategy for enhancing clinical trial accrual. Cancer. 2014;120(7 suppl):1122-1130. Jacobsen P. Clinical practice guidelines for the psychosocial care of cancer survivors. Cancer. 2009;115(18 suppl):4419-4429. Piderman KM, Johnson ME, Frost MH, et al. Spiritual quality of life in advanced cancer patients receiving radiation therapy. Psychooncology. 2014;23:216-221. Brundage M, Blazeby J, Revicki D, et al. Patient reported outcomes in randomized clinical trials: development of ISOQOL reporting standards. Qual Life Res. 2013;22:1161-2275. Calvert M, Brundage M, Jacobsen PB, Schunemann HJ, Efficace F. The CONSORT Patient Reported Outcomes (PRO) extension: implications for clinical trials and practice [serial online]. Health Qual Life Outcomes. 2013;11:184. Naik A, Palmer N, Petersen N, et al. Comparative effectiveness of goal setting in a diabetes mellitus group clinic randomized clinical trial. Arch Intern Med. 2011;17:453-459.
3110
14. Coleman M. Patient empowerment in the management of chronic myelogenous leukemia. Clin J Oncol Nurs. 2014;18:E11-E18. 15. Hoffman AJ. Enhancing self-efficacy for optimized patient outcomes through the theory of symptom self-management. Cancer Nurs. 2013;36:E16-E20. 16. Friese CR, Martinez KA, Abrahamse P, et al. Providers of follow-up care in a population based sample of breast cancer survivors. Breast Cancer Res Treat. 2014;144:179-184. 17. Lester JL, Wessels AL, Jung Y. Oncology nurses’ knowledge of survivorship care planning: the need for education. Oncol Nurs Forum. 2014;41:E35-E43. 18. Gould, J Sinding C, Mitchell TL, et al. Below their notice: exploring women’s subjective experiences of cancer system exclusion. J Cancer Educ. 2009;24:308-314. 19. Winbush GB, McDougle L, Labranche L, Khan S, Tolliver S. Health empowerment technologies (HET): building a web-based tool to empower older African American patient-doctor relationships. J Health Care Poor Underserved. 2013;24(4 suppl):106-117. 20. Burhansstipanov L, Clarke RE, Watanabe-Galloway S, et al. Online evaluation programs: benefits and limitations. J Cancer Educ. 2012; 27(suppl 11):S24-S31. 21. Kaur JS, Burhansstipanov L, Krebs L. Chapter 2: understanding the true burden of cancer in American Indian and Alaska Native communities. In: Jackson O, Evans K, eds. Health Disparities. New York: Nova Biomedical; 2013:39-75. 22. Freeman HP. Why Black women die of cancer [op-ed]. The New York Times. March 14, 2014:A27.
Cancer
October 15, 2014
How Should We “Empower” Cancer Patients? Judith S. Kaur, MD
”Empowerment” is a hot topic in health research these days. A quick Medline search using the phrase “patient empowerment” elicits over 500 recent articles. In this edition of Cancer, our Canadian colleagues provide us with 2 articles that analyze a simple, validated instrument to assess how we empower cancer patients.1,2 Their definition of empowerment is a sense of control over one’s life and, thus, better coping. Empowerment should occur throughout the cancer continuum of care. Maunsell and colleagues used 2 populations—a population-based cancer registry and the Canadian Cancer Society’s information and peer-support programs. Five (of 8) components of the Health Education Impact Questionnaire (heiQ) correlated strongly with the construct of “empowerment”—social integration and support, health service navigation, constructive attitudes and approaches, skill and technique acquisition, and emotional distress. Lauzier’s group then used these indicators to evaluate cancer organizations’ support services. The stated goal of support services is to empower patients so they can become partners with their providers in optimizing care. These 2 articles provide important steps in understanding what works in the realm of patient support rather than assuming a priori that the services provided are effective. Recent efforts in research on quality of life, patient navigation,3-6 and the use of support groups have had various impacts, likely because different scales were measuring different but related dimensions of empowerment. The effectiveness of patient navigation in overcoming barriers to cancer screening has been well documented.7,8 Clinical practice guidelines are being proposed for everything from psychosocial to spiritual care of the cancer survivor, all with the intent to “empower” our patients.9,10 New research is focusing on patient-reported outcomes in clinical trials with the development of reporting standards.11,12 Oncology research has evolved in recent years beyond studying the drugs, side effects, and years of survival to understanding the totality of the cancer experience. Indeed, oncology is now following the pattern of other chronic diseases to investigate how management of the patient changes over the course of disease. An accumulating body of evidence indicates that chronic illness self-management programs worldwide are improving health outcomes.13 More and more, cancer patients are included in the chronic disease category, and almost all support and management occurs outside the clinic and hospital settings. Studies have investigated specific diseases, such as chronic myeloid leukemia and other cancers, using oncology nurses to assess patient self-management of symptoms.14,15 Others have assessed the impact of patient navigation on compliance with treatment such as radiation therapy.1 Cancer survivorship plans have now being analyzed to help patients and families navigate post-treatment long-term needs.16,17 There will continue to be increased need for patients and families to self-manage during treatments, recovery, and survivorship. Health care reforms are emphasizing that health care is not something “done to” an individual but, rather, under the new paradigm, a team effort with the patient at the center. Understanding how to maximize patient empowerment may reduce unnecessary medical interventions, strengthen provider-patient communication, and potentially even lead to improved survival. However, to look scientifically at the potentials in health care planning, policies, and priorities, we need validated instruments. To the credit of this investigative team, they are now embarking on a randomized clinical trial of electronic support in patients with colorectal cancer that will then be assessed using the validated heiQ tool. This tool’s scales measure intrapersonal, interactional, and behavioral dimensions. There is potential to intervene with patients who have low empowerment scores with the objective of reducing complications. It may be necessary, indeed essential, to validate this and other tools in other populations. For example, 54% to 64% of the respondents in these studies had a college education. Most (83%) were women and had breast cancer (56%). Therefore, future work must investigate men with cancer and other common cancers more completely. Many underserved and
Corresponding author: Judith S. Kaur, MD, Mayo Clinic, 200 First Street SW, Rochester, MN 55905; Fax: (507) 284 1803; [email protected] Mayo Clinic Comprehensive Cancer Center, Rochester, Minnesota See referenced original articles on pages 3219-27 and 3228-36, this issue. DOI: 10.1002/cncr.28852, Received: April 28, 2014; Accepted: May 13, 2014, Published online July 2, 2014 in Wiley Online Library (wileyonlinelibrary.com)
3108
Cancer
October 15, 2014
Editorial/Kaur
minority patients likely need empowerment tools but may not respond well to this type of questionnaire. Patients from the Canadian Cancer Society’s information and peer-support programs may include a significant group of patients who already feel empowered, as acknowledged by the authors. What about the patient’s with the lowest empowerment scores? We do not get a clear view of that subgroup in these evaluations. Poverty is strongly associated with lack of resources, information, and knowledge as well as distrust of the health care system.18 Even the “digital divide” may increase the differential in patient access to usable information. Some groups are investigating web-based tools to empower uniquely vulnerable populations, such as older African Americans, to enhance communication with their physicians.19 Web-based formats have both benefits and limitations.20 Many minority populations in our country suffer from several comorbidities, including cancer, and have higher morbidity and mortality from those chronic diseases.21 We do not know whether different empowerment techniques are required for maximal support of our more complicated patients. We need research to sort out how best to advocate and case manage these more complex medical and cultural situations. If we are to inform clinical guidelines and patient care, then we need high-quality evidence on the relative benefits and harms of interventions in different populations. New research is focusing on patient-reported outcomes in clinical trials with the development of reporting standards.10,11 Our clinical trials system is still challenged to accrue more minority and underserved populations to high-impact clinical trials. The National Cancer Institute’s Center to Reduce Cancer Health Disparities is supporting community-based participatory research as a valuable approach to engaging underserved and minority communities in the clinical trials process. The infrastructure needs and cultural parameters of quality cancer care are acknowledged by the work of the 23 Community Networks Programs. More work must be done to empower patients from those communities to truly have ownership and trust in the system. Patient-reported outcomes from clinical trials are expected to empower patients to make health care decisions based on their own values.12 Unless we recruit a broader range of patients into these trials, will we only be empowering those patients who are already powerful with resources, access, and support systems already in place? We honestly do not know yet how to build “values” into our clinical trials program other than noting that survival is a universal value. Patient-reported outcomes also Cancer
October 15, 2014
purport to level the playing field between physician and patient. Does providing the patients with more statistics really do that? If we think that statistical results from prior trials will become part of routine clinical practice education for cancer patients, then more research is needed on methods to improve health literacy—especially in those with less than a college education. Although education in a nonhealth field clearly does not guarantee health literacy, it does increase the chance patients can use tools to quickly understand and discuss treatments with their providers. These articles raise other questions about what happens to a cancer patient long term and how that relates to their empowerment level. The patients in this study were 3 to 36 months post-treatment, yet fewer than half had returned to gainful employment, even after factoring in the age of the individual participants. We do not know whether that was the subgroup which felt lower levels of empowerment. What are we to do with patients who do not respond to our current standard support efforts? What have we learned from the breast advocacy community about empowering cancer patients? Does empowerment affect our ability to recruit minority patients to clinical trials? I suggest that it strongly correlates. We are all indebted to the leadership of Harold Freeman in developing patient navigation. Yet, a recent op-ed by Dr. Freeman,22 Why Black Women Die of Cancer, describes how far we have to go. We cannot be satisfied that we have the right tools for “empowerment” until all cancer patients feel empowered! FUNDING SUPPORT This work was supported by grant CA153605 from the National Cancer Institute.
CONFLICT OF INTEREST DISCLOSURES The author made no disclosures.
REFERENCES 1. Maunsell E, Lauzier S, Brunet J, Pelletier S, Osborne RH, Campbell SH. Health-related empowerment in cancer: validity of scales from the Health Education Impact Questionnaire. Cancer. 2014;120: 3228-3236. 2. Lauzier S, Campbell HS, Livingston PM, Maunsell E. Indicators for evaluating cancer organizations; support services: performance and associations with empowerment. Cancer. 2014;120:3219-3227. 3. Kanekar D, Petereit D. Walking Forward: a program designed to lower cancer mortality rates among American Indians in western South Dakota. S D Med. 2009;62:151-152. 4. Braun KL, Kagawa-Singer M, Holden AE, et al. Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved. 2012;23:398-413. 5. Krebs LU, Burhansstipabnov L, Watanabe-Galloway S, Pingatore NL, Petereit DG, Isham D. Navigation as an intervention to
3109
Editorial
6. 7.
8. 9. 10. 11. 12.
13.
eliminate disparities in American Indian communities. Semin Oncol Nurs. 2013;29:118-123. Eschiti V, Burhansstipanov L, Watanabe-Galloway S. Native cancer navigation, the state of the science. Clin J Oncol Nurs. 2012;16:73-82. Vickers SM, Fouad MN. An overview of EMPaCT and fundamental issues affecting minority participation in cancer clinical trials: enhancing minority participation in clinical trials (EMPaCT): laying the groundwork for improving minority clinical trials accrual. Cancer. 2014;120(7 suppl):1087-1087. Ghebre RG, Jones LA, Wenzel JA, Martin MY, Durant RW, Ford JG. State-of-the-science of patient navigation as a strategy for enhancing clinical trial accrual. Cancer. 2014;120(7 suppl):1122-1130. Jacobsen P. Clinical practice guidelines for the psychosocial care of cancer survivors. Cancer. 2009;115(18 suppl):4419-4429. Piderman KM, Johnson ME, Frost MH, et al. Spiritual quality of life in advanced cancer patients receiving radiation therapy. Psychooncology. 2014;23:216-221. Brundage M, Blazeby J, Revicki D, et al. Patient reported outcomes in randomized clinical trials: development of ISOQOL reporting standards. Qual Life Res. 2013;22:1161-2275. Calvert M, Brundage M, Jacobsen PB, Schunemann HJ, Efficace F. The CONSORT Patient Reported Outcomes (PRO) extension: implications for clinical trials and practice [serial online]. Health Qual Life Outcomes. 2013;11:184. Naik A, Palmer N, Petersen N, et al. Comparative effectiveness of goal setting in a diabetes mellitus group clinic randomized clinical trial. Arch Intern Med. 2011;17:453-459.
3110
14. Coleman M. Patient empowerment in the management of chronic myelogenous leukemia. Clin J Oncol Nurs. 2014;18:E11-E18. 15. Hoffman AJ. Enhancing self-efficacy for optimized patient outcomes through the theory of symptom self-management. Cancer Nurs. 2013;36:E16-E20. 16. Friese CR, Martinez KA, Abrahamse P, et al. Providers of follow-up care in a population based sample of breast cancer survivors. Breast Cancer Res Treat. 2014;144:179-184. 17. Lester JL, Wessels AL, Jung Y. Oncology nurses’ knowledge of survivorship care planning: the need for education. Oncol Nurs Forum. 2014;41:E35-E43. 18. Gould, J Sinding C, Mitchell TL, et al. Below their notice: exploring women’s subjective experiences of cancer system exclusion. J Cancer Educ. 2009;24:308-314. 19. Winbush GB, McDougle L, Labranche L, Khan S, Tolliver S. Health empowerment technologies (HET): building a web-based tool to empower older African American patient-doctor relationships. J Health Care Poor Underserved. 2013;24(4 suppl):106-117. 20. Burhansstipanov L, Clarke RE, Watanabe-Galloway S, et al. Online evaluation programs: benefits and limitations. J Cancer Educ. 2012; 27(suppl 11):S24-S31. 21. Kaur JS, Burhansstipanov L, Krebs L. Chapter 2: understanding the true burden of cancer in American Indian and Alaska Native communities. In: Jackson O, Evans K, eds. Health Disparities. New York: Nova Biomedical; 2013:39-75. 22. Freeman HP. Why Black women die of cancer [op-ed]. The New York Times. March 14, 2014:A27.
Cancer
October 15, 2014
