The Journal of Family Practice is a peer-reviewed and indexed journal that provides its 95,000 family physician readers with timely, practical, and evidence-based information that they can immediately put into practice. Research and applied evidence articles, plus patient-oriented departments like Practice Alert, PURLs, and Clinical Inquiries can be found in print and at jfponline.com. The Web site, which logs an average of 125,000 visitors every month, also offers audiocasts by physician specialists and interactive features like Instant Polls and Photo Rounds Friday—a weekly diagnostic puzzle.

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Proclivity ID
18805001
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Citation Name
J Fam Pract
Negative Keywords
gaming
gambling
compulsive behaviors
ammunition
assault rifle
black jack
Boko Haram
bondage
child abuse
cocaine
Daech
drug paraphernalia
explosion
gun
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ISIL
ISIS
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NORD Speaks on Behalf of Continued Funding for NIH Undiagnosed Diseases Network

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NORD Speaks on Behalf of Continued Funding for NIH Undiagnosed Diseases Network

The NIH Undiagnosed Diseases Network (UDN) was expanded last year to include seven centers at locations across the United States. The UDN brings together clinical and research experts from across the US to solve the most challenging medical mysteries using advanced technologies. It is funded by the NIH Common Fund, and at a recent public forum to discuss continuation of funding, a NORD representative spoke about the importance of this network to rare disease patients and their physicians. Any patient can apply to the network with support from his/her physician. Application is made through an online NIH UDN portal.

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The NIH Undiagnosed Diseases Network (UDN) was expanded last year to include seven centers at locations across the United States. The UDN brings together clinical and research experts from across the US to solve the most challenging medical mysteries using advanced technologies. It is funded by the NIH Common Fund, and at a recent public forum to discuss continuation of funding, a NORD representative spoke about the importance of this network to rare disease patients and their physicians. Any patient can apply to the network with support from his/her physician. Application is made through an online NIH UDN portal.

The NIH Undiagnosed Diseases Network (UDN) was expanded last year to include seven centers at locations across the United States. The UDN brings together clinical and research experts from across the US to solve the most challenging medical mysteries using advanced technologies. It is funded by the NIH Common Fund, and at a recent public forum to discuss continuation of funding, a NORD representative spoke about the importance of this network to rare disease patients and their physicians. Any patient can apply to the network with support from his/her physician. Application is made through an online NIH UDN portal.

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NORD Speaks on Behalf of Continued Funding for NIH Undiagnosed Diseases Network
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NORD Speaks on Behalf of Continued Funding for NIH Undiagnosed Diseases Network
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Free Summer Camp For Families of Children With Rare Diseases

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Free Summer Camp For Families of Children With Rare Diseases

NORD is partnering with the Hole in the Wall Gang, established by the late actor Paul Newman, to provide a free summer camping experience for families who have children with rare diseases. The camp will take place June 2-5 in Connecticut. Families living in the Northeast region of the United States are encouraged to apply, and up to 25 families can be accommodated. Online registration is now open.

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NORD is partnering with the Hole in the Wall Gang, established by the late actor Paul Newman, to provide a free summer camping experience for families who have children with rare diseases. The camp will take place June 2-5 in Connecticut. Families living in the Northeast region of the United States are encouraged to apply, and up to 25 families can be accommodated. Online registration is now open.

NORD is partnering with the Hole in the Wall Gang, established by the late actor Paul Newman, to provide a free summer camping experience for families who have children with rare diseases. The camp will take place June 2-5 in Connecticut. Families living in the Northeast region of the United States are encouraged to apply, and up to 25 families can be accommodated. Online registration is now open.

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Free Summer Camp For Families of Children With Rare Diseases
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NORD Announces 2016 Rare Impact Award Recipients

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NORD Announces 2016 Rare Impact Award Recipients

The National Organization for Rare Disorders (NORD) will honor individuals and organizations for achievements to improve the lives of patients with rare diseases at its Rare Impact Awards celebration in Washington DC on Tuesday, May 17. Award recipients will be:

 

  • Senator Orrin Hatch (R-UT)
  • Representative Doris Matsui (D-CA)
  • Arthur Caplan, PhD
  • Stephen Cederbaum, MD
  • The Friedreich’s Ataxia Research Alliance (FARA)
  • Dawn Laney, MS, CGC, CCRC
  • Desiree Lynn Howe
  • Deborah Miller
  • Noah Victoria

In addition, five companies will be honored for developing treatments for rare diseases that were approved by the FDA in 2015. Those companies are:

 

  • Alexion Pharmaceuticals, Inc.
  • Asklepion Pharmaceuticals, LLC
  • Astellas Pharma
  • United Therapeutics Corporation
  • Wellstat Therapeutics Corporation

NORD hosts the awards celebration each year to highlight the achievements of legislators, rare disease clinicians and researchers, patient advocates, and others during the previous year. This year’s event will take place at the Warner Theatre in Washington DC and is open to all. Online registration, as well as information about sponsorship, is available on the NORD website.

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The National Organization for Rare Disorders (NORD) will honor individuals and organizations for achievements to improve the lives of patients with rare diseases at its Rare Impact Awards celebration in Washington DC on Tuesday, May 17. Award recipients will be:

 

  • Senator Orrin Hatch (R-UT)
  • Representative Doris Matsui (D-CA)
  • Arthur Caplan, PhD
  • Stephen Cederbaum, MD
  • The Friedreich’s Ataxia Research Alliance (FARA)
  • Dawn Laney, MS, CGC, CCRC
  • Desiree Lynn Howe
  • Deborah Miller
  • Noah Victoria

In addition, five companies will be honored for developing treatments for rare diseases that were approved by the FDA in 2015. Those companies are:

 

  • Alexion Pharmaceuticals, Inc.
  • Asklepion Pharmaceuticals, LLC
  • Astellas Pharma
  • United Therapeutics Corporation
  • Wellstat Therapeutics Corporation

NORD hosts the awards celebration each year to highlight the achievements of legislators, rare disease clinicians and researchers, patient advocates, and others during the previous year. This year’s event will take place at the Warner Theatre in Washington DC and is open to all. Online registration, as well as information about sponsorship, is available on the NORD website.

The National Organization for Rare Disorders (NORD) will honor individuals and organizations for achievements to improve the lives of patients with rare diseases at its Rare Impact Awards celebration in Washington DC on Tuesday, May 17. Award recipients will be:

 

  • Senator Orrin Hatch (R-UT)
  • Representative Doris Matsui (D-CA)
  • Arthur Caplan, PhD
  • Stephen Cederbaum, MD
  • The Friedreich’s Ataxia Research Alliance (FARA)
  • Dawn Laney, MS, CGC, CCRC
  • Desiree Lynn Howe
  • Deborah Miller
  • Noah Victoria

In addition, five companies will be honored for developing treatments for rare diseases that were approved by the FDA in 2015. Those companies are:

 

  • Alexion Pharmaceuticals, Inc.
  • Asklepion Pharmaceuticals, LLC
  • Astellas Pharma
  • United Therapeutics Corporation
  • Wellstat Therapeutics Corporation

NORD hosts the awards celebration each year to highlight the achievements of legislators, rare disease clinicians and researchers, patient advocates, and others during the previous year. This year’s event will take place at the Warner Theatre in Washington DC and is open to all. Online registration, as well as information about sponsorship, is available on the NORD website.

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Editor’s Note: This is the fourth installment of a five-part monthly series that will discuss the biologic, genomic, and health system factors that contribute to the racial survival disparity in breast cancer. The series was adapted from an article that originally appeared in CA: A Cancer Journal for Clinicians,1 a journal of the American Cancer Society. Eliminating racial disparities in cancer mortality through effective interventions has become an increasingly important imperative of federal, state, and community health care programs. This month’s column reviews interventions to close this survival gap.

 

Insurance

It has been posited that interventions aimed at providing insurance coverage to minority patients will be able to reduce racial health care disparities.2 Studies have indicated that women without insurance present with more-advanced disease,3,4 and are more likely to receive nonstandard treatment.5 However, outside of cancer care, a large study of Medicaid expansion in Oregon demonstrated that Medicaid coverage alone generated no significant improvement in measured physical health outcomes in the first 2 years.6 Thus, coverage alone does not ensure that patients will be able to navigate the health care system and that quality care will be provided.

In breast cancer, Hoffman et al.7 evaluated the effect of race and health insurance on diagnostic time, which was defined as the number of days from suspicious finding to diagnostic resolution (either no evidence of malignancy on diagnostic mammogram or definitive diagnosis by biopsy) in a large, urban setting. The authors’ hypothesis was that every insured patient would receive the same timely diagnosis as any other patient with equivalent insurance, regardless of race or ethnicity. The study found that non-Hispanic whites with government insurance had significantly shorter diagnostic times than did non-Hispanic African Americans with government insurance: The average diagnostic times were 12 and 39 days, respectively. In addition, privately insured non-Hispanic whites also had significantly shorter diagnostic times than did privately insured non-Hispanic African Americans (16 vs. 27 days). In addition, Short et al.8 demonstrated that when the health plan status was held constant in a retrospective study of 476 white patients and 99 African American patients with newly diagnosed breast cancer, African American patients had a higher mortality rate (8.1% vs. 3.6%) and were diagnosed at a later stage. Accordingly, interventions must go beyond just providing health insurance to minorities in order to have a significant impact on the mortality gap.

 

Patient education and physician communication

 

An underlying cause frequently cited for the delayed diagnosis and treatment of African American patients with breast cancer is a lack of patient education and physician communication. These elements are essential components of quality care. In a qualitative study of low-income, ethnically diverse women older than 40 years, Allen et al.9 identified salient themes differentiating women who received timely follow-up from those who did not. For the women who delayed follow-up, prominent themes were dissatisfaction with the communication of results, disrespect on the part of providers and clinical staff, logistical barriers to accessing services, anxiety and fear about a possible cancer diagnosis, and a lack of information about breast cancer screening and symptoms.

In another study, Masi and Gehlert10 employed focus group interviews of African American adults to characterize their perceptions of breast cancer treatment. The analysis revealed a core set of themes, including mistrust of the medical establishment and concern about the effect of racism on treatment quality; the researchers concluded that “in the eyes of many study participants, the issues of trust, race, and quality of care were closely intertwined.”10 Thus, this knot that is created by underlying issues of trust can be untied only by interventions that address improved physician communication and patient education.

Janz et al.11 examined racial differences in the adequacy of information and support for women with breast cancer. The researchers used survey data from a population of 1,766 women diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results (SEER) registry. The study found that across treatment- and survivorship-related issues, African American women desired more information than white women did. One of the explanations for the unmet information needs posited by the authors is a failure to provide culturally appropriate information related to health issues. This breakdown in patient education and communication was demonstrated by Hawley et al. to hold across providers and locations.12

Hawley et al.12 evaluated the association between minority patients’ knowledge of breast cancer treatment risks and benefits and provider characteristics and treatment locations. The provider characteristics included surgeon-level independent variables, such as breast cancer procedure volume and demographics (years in practice and sex). The treatment location variable was categorized into one of three groups: National Cancer Institute–designated cancer center, American College of Surgeons cancer program, or no specific cancer program. Provider characteristics and treatment locations are factors previously identified as being associated with high-quality care.

 

 

The study employed a multivariable regression to identify associations between patient, surgeon, and treatment-setting factors and accurate knowledge of the survival benefit and recurrence risk related to mastectomy and breast-conserving surgery with radiation. The authors found that minority women were significantly less likely to have adequate knowledge and more likely to be uncertain about recurrence risk than were white patients. In the multivariate logistic regression model, neither provider characteristics nor treatment setting attenuated observed racial disparities in knowledge. Quality health care depends on the ability to make an informed treatment decision. As the authors concluded, this study underscores the need for providers to communicate information effectively to all patients, and effective communication relies on the cultural competency of providers.13 Without effective, culturally competent communication, there are treatment delays and omissions that result in poor-quality cancer care. Currently, the research has established that these communication deficits are found across providers and treatment center types.

Patient Navigation

Patient navigation has been championed as a method of improving care in breast cancer by enhancing patient communication and education, and removing barriers to timely care. Patient navigation empowers patients to become knowledgeable about their own health and supports them through the course of care.14 Patient navigation programs have been developed to address the patient communication breakdowns and underuse and misuse of treatment among vulnerable populations, which were detailed earlier in this series and are thought to contribute to the racial mortality gap.15

A benefit of patient navigation has been suggested in studies evaluating the time to diagnosis and follow-up from an abnormal screening. Markossian et al.16 evaluated the efficacy of a Chicago-based cancer patient navigation program developed to reduce the time from abnormal screening to definitive diagnostic testing. The majority of patients in this study were Hispanic (66%) and African American (32%). Compared with controls without navigation, the breast navigation group had a shorter time to diagnostic resolution. Hoffman et al.17 evaluated patient navigation in the District of Columbia to determine its ability to reduce the breast cancer diagnostic time (number of days from abnormal screening to a definitive diagnosis). African American women comprised 48% of the study population. The investigators found that women in the navigation group reached their diagnostic resolution significantly faster than did other women. Among women with breast cancer, there was a nearly fourfold reduction in time to diagnostic resolution for women in the navigation group versus women without a navigator.

 

Adapted with permission from the American Cancer Society.

In a national multicenter study, Ko et al.14 were the first to evaluate whether patient navigation can improve the quality of breast cancer care. The authors hypothesized that breast cancer patients assigned a navigator would be more likely to receive recommended standard treatment than were those without a navigator. Three separate quality measures of breast cancer care, including initiation of antiestrogen therapy, radiation therapy, and chemotherapy, were evaluated. Study participants were racially and ethnically diverse, with a plurality being African American (37.5%). The study produced mixed results: Patients in the navigation group had a statistically higher likelihood of receiving antiestrogen therapy than were non–navigated controls, but navigation patients eligible for radiation therapy were no more likely to receive it than were controls. The initiation of chemotherapy could not be accurately assessed because of a limited sample size. The study concluded that navigation alone does not remove all of the barriers to quality care for breast cancer patients, and barriers are diverse and potentially specific to the modality of treatment.

A study by Tejeda et al.18 used a systematic framework to characterize barriers faced by minority patients with breast and cervical cancer. The investigators categorized barriers as intrapersonal (defined by characteristics of the individual, such as knowledge, belief, attitudes, and transportation and financial barriers), interpersonal (defined by processes that involve other people, such as social support systems, child care, and employment issues), or institutional (defined by characteristics and policies of organizations). The authors found that although navigators were able to easily resolve intrapersonal barriers, ongoing navigation was needed to address institutional barriers. Thus, patient navigation in a vacuum does not work, and it is only in examining the entire health care system that changes can be implemented to eliminate barriers to quality care and close the racial mortality chasm.

System Change

To this effect, Clarke et al.19 performed a review of the disparities intervention literature to understand which interventions are being evaluated to improve minority health. The authors found that the majority of such interventions are focused on changing the patient rather than the system that serves her, with the most common strategy being education and training (37% of strategies studied). Interventions aimed at health care system improvements were surprisingly few, with the responsibility for change resting with the patient rather than the care delivery system. Interventions incorporating community involvement were also severely lacking and reflected only 6.5% of the reviewed intervention tactics. The majority of interventions failed to involve major stakeholders, including providers, health care institutions, community organizers, and policy makers, and accordingly, were unlikely to succeed in creating meaningful change.

 

 

In breast cancer, there have been examples of successful system-based approaches to reducing the racial mortality disparity. At New York area hospitals, Bickell et al.20 implemented a tracking and feedback registry to close the referral loop between surgeons and oncologists to decrease the underuse of valuable adjuvant treatments.

The intervention targeted important quality issues in both communication (the breakdown in dialogue among providers of different specialties and between providers and patients) and the underuse of adjuvant treatment in minorities. The approach was designed to address failures in the health care system through the involvement of leadership from pathology, surgery, and oncology. The intervention also incorporated technology, with tracking software prompting contact with patients who had failed to follow up. Among African American and Hispanic women, there were statistically significant decreases in the underuse of radiotherapy (23% before the intervention vs. 10% after the intervention), chemotherapy (26% vs. 6%), and hormonal therapy (27% vs. 11%). After the intervention, minority race was no longer a risk factor for low rates of oncology consultation or underuse of adjuvant therapy. Interestingly, four of the six hospitals involved in this study had a patient navigation system in place; however, as discussed, the navigation system alone was not enough to address the system failures that led to disparities in care.

Ansell et al.21 also described a system-based approach to reducing the breast cancer mortality disparity in Chicago. The Metropolitan Chicago Breast Cancer Task Force comprised 102 individuals and 74 Chicago area organizations to address the growing disparity in breast cancer mortality between African American and white patients. The task force identified a number of themes underlying the disparity gap, including a need for breast cancer education and outreach programs for African American women, a broken mammography process leading to quality differences between African American and white patients, and a number of barriers to diagnosis and treatment, including fear, a lack of primary care, the burden of insurance copays/deductibles, and the noncompletion of treatment for social and economic reasons. After identifying these underlying causes, the task force proposed that addressing one aspect of the health care system would not correct the problem, but rather quality improvement initiatives would have to occur across the continuum of care for breast cancer.

In Delaware, such a broad system-based intervention was implemented to eliminate health disparities in colorectal cancer.22 Delaware created a comprehensive statewide colorectal screening and treatment program, combining many of the interventions discussed previously, including insurance coverage, patient education and communication, and patient navigation, to address the entire health care system and its treatment of African Americans with colorectal cancer. The state also partnered with underserved community organizations to tailor programs locally and create targeted marketing campaigns.

The results of this system-based approach were impressive, with screening rates among African American increasing from 48% to 74% and equaling the rate among whites. In addition, among African American patients, the percentage diagnosed at advanced and regional stages declined from 79% to 40%, and the percentage diagnosed at a local stage increased from 16% to 50%. Most importantly, the mortality rate declined by 42% for African Americans, resulting in a rate almost equal to that among whites. Significantly, this program was also found to be economically viable, because the cost savings from reduced cancer incidence and the stage shift to cancers requiring less-aggressive treatment offset the program cost. As the authors concluded, this model of a comprehensive, system-wide approach to the racial mortality difference would lend itself to other cancers, and more research is needed to assess and build such an approach to breast cancer.

As discussed in the aforementioned studies, multifaceted interventions that address all stakeholders are needed to close the racial survival disparity in breast cancer. In the final installment of this series, we will address how the changing care models ushered in by the Patient Protection and Affordable Care Act have the potential to advance this agenda of creating an intervention that works across the breast cancer care continuum to reduce disparities.

Other installments of this column can be found in the Related Content box.

1. Daly B, Olopade OI. A perfect storm: How tumor biology, genomics, and health care delivery patterns collide to create a racial survival disparity in breast cancer and proposed interventions for change. CA Cancer J Clin. 2015 May-Jun;65(3):221-38.

2. Lillie-Blanton M, Hoffman C. The role of health insurance coverage in reducing racial/ethnic disparities in health care. Health Aff (Millwood). 2005 Mar-Apr;24(2):398-408.

3. Ayanian JZ, Kohler BA, Abe T, Epstein AM. The relation between health insurance coverage and clinical outcomes among women with breast cancer. N Engl J Med. 1993 Jul 29;329(5):326-31.

 

 

4. Coburn N, Fulton J, Pearlman DN, Law C, DiPaolo B, Cady B. Treatment variation by insurance status for breast cancer patients. Breast J. 2008 Mar-Apr;14(2):128-34.

5. Voti L, Richardson LC, Reis I, Fleming LE, Mackinnon J, Coebergh JW. The effect of race/ethnicity and insurance in the administration of standard therapy for local breast cancer in Florida. Breast Cancer Res Treat. 2006 Jan;95(1):89-95.

6. Baicker K, Taubman SL, Allen HL, et al. The Oregon experiment – effects of Medicaid on clinical outcomes. N Engl J Med. 2013 May 2;368(18):1713-22.

7. Hoffman HJ, LaVerda NL, Levine PH, et al. Having health insurance does not eliminate race/ethnicity-associated delays in breast cancer diagnosis in the District of Columbia. Cancer. 2011 Aug 15;117(16):3824-32.

8. Short LJ, Fisher MD, Wahl PM, et al. Disparities in medical care among commercially insured patients with newly diagnosed breast cancer: opportunities for intervention. Cancer. 2010 Jan 1;116(1):193-202.

9. Allen JD, Shelton RC, Harden E, Goldman RE. Follow-up of abnormal screening mammograms among low-income ethnically diverse women: findings from a qualitative study. Patient Educ Couns. 2008 Aug;72(2):283-92.

10. Masi CM, Gehlert S. Perceptions of breast cancer treatment among African-American women and men: implications for interventions. J Gen Intern Med. 2009 Mar;24(3):408-14.

11. Janz NK, Mujahid MS, Hawley ST, Griggs JJ, Hamilton AS, Katz SJ. Racial/ethnic differences in adequacy of information and support for women with breast cancer. Cancer. 2008 Sep 1;113(5):1058-67.

12. Hawley ST, Fagerlin A, Janz NK, Katz SJ. Racial/ethnic disparities in knowledge about risks and benefits of breast cancer treatment: does it matter where you go? Health Serv Res. 2008 Aug;43(4):1366-87.

13. Lannin DR, Mathews HF, Mitchell J, Swanson MS. Impacting cultural attitudes in African-American women to decrease breast cancer mortality. Am J Surg. 2002 Nov;184(5):418-23.

14. Ko NY, Darnell JS, Calhoun E, et al. Can patient navigation improve receipt of recommended breast cancer care? Evidence from the National Patient Navigation Research Program. J Clin Oncol. 2014 Sep 1;32(25):2758-64.

15. Vargas RB, Ryan GW, Jackson CA, Rodriguez R, Freeman HP. Characteristics of the original patient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer. Cancer. 2008 Jul 15;113(2):426-33.

16. Markossian TW, Darnell JS, Calhoun EA. Follow-up and timeliness after an abnormal cancer screening among underserved, urban women in a patient navigation program. Cancer Epidemiol Biomarkers Prev. 2012 Oct;21(10):1691-700.

17. Hoffman HJ, LaVerda NL, Young HA, et al. Patient navigation significantly reduces delays in breast cancer diagnosis in the District of Columbia. Cancer Epidemiol Biomarkers Prev. 2012 Oct;21(10):1655-63.

18. Tejeda S, Darnell JS, Cho YI, Stolley MR, Markossian TW, Calhoun EA. Patient barriers to follow-up care for breast and cervical cancer abnormalities. J Womens Health (Larchmt). 2013 Jun;22(6):507-17.

19. Clarke AR, Goddu AP, Nocon RS, et al. Thirty years of disparities intervention research: what are we doing to close racial and ethnic gaps in health care? Med Care. 2013 Nov;51(11):1020-26.

20. Bickell NA, Shastri K, Fei K, et al. A tracking and feedback registry to reduce racial disparities in breast cancer care. J Natl Cancer Inst. 2008 Dec 3;100(23):1717-23.

21. Ansell D, Grabler P, Whitman S, et al. A community effort to reduce the black/white breast cancer mortality disparity in Chicago. Cancer Causes Control. 2009 Nov;20(9):1681-88.

22. Grubbs SS, Polite BN, Carney J, Jr., et al. Eliminating racial disparities in colorectal cancer in the real world: it took a village. J Clin Oncol. 2013 Jun 1;31(16):1928-30.

 

 

Dr. Bobby Daly
Bobby Daly, MD, MBA, is the chief fellow in the section of hematology/oncology at the University of Chicago Medicine. His clinical focus is breast and thoracic oncology, and his research focus is health services. Specifically, Dr. Daly researches disparities in oncology care delivery, oncology health care utilization, aggressive end-of-life oncology care, and oncology payment models. He received his MD and MBA from Harvard Medical School and Harvard Business School, both in Boston, and a BA in Economics and History from Stanford (Calif.) University. He was the recipient of the Dean’s Award at Harvard Medical and Business Schools.

 

Dr. Olufunmilayo Olopade

Olufunmilayo Olopade, MD, FACP, OON, is the Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics, and director, Center for Global Health at the University of Chicago. She is adopting emerging high throughput genomic and informatics strategies to identify genetic and nongenetic risk factors for breast cancer in order to implement precision health care in diverse populations. This innovative approach has the potential to improve the quality of care and reduce costs while saving more lives.

Disclosures: Dr. Olopade serves on the Medical Advisory Board for CancerIQ. Dr. Daly serves as a director of Quadrant Holdings Corporation and receives compensation from this entity. Frontline Medical Communications is a subsidiary of Quadrant Holdings Corporation.

Published in conjunction with Susan G. Komen®.

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Editor’s Note: This is the fourth installment of a five-part monthly series that will discuss the biologic, genomic, and health system factors that contribute to the racial survival disparity in breast cancer. The series was adapted from an article that originally appeared in CA: A Cancer Journal for Clinicians,1 a journal of the American Cancer Society. Eliminating racial disparities in cancer mortality through effective interventions has become an increasingly important imperative of federal, state, and community health care programs. This month’s column reviews interventions to close this survival gap.

 

Insurance

It has been posited that interventions aimed at providing insurance coverage to minority patients will be able to reduce racial health care disparities.2 Studies have indicated that women without insurance present with more-advanced disease,3,4 and are more likely to receive nonstandard treatment.5 However, outside of cancer care, a large study of Medicaid expansion in Oregon demonstrated that Medicaid coverage alone generated no significant improvement in measured physical health outcomes in the first 2 years.6 Thus, coverage alone does not ensure that patients will be able to navigate the health care system and that quality care will be provided.

In breast cancer, Hoffman et al.7 evaluated the effect of race and health insurance on diagnostic time, which was defined as the number of days from suspicious finding to diagnostic resolution (either no evidence of malignancy on diagnostic mammogram or definitive diagnosis by biopsy) in a large, urban setting. The authors’ hypothesis was that every insured patient would receive the same timely diagnosis as any other patient with equivalent insurance, regardless of race or ethnicity. The study found that non-Hispanic whites with government insurance had significantly shorter diagnostic times than did non-Hispanic African Americans with government insurance: The average diagnostic times were 12 and 39 days, respectively. In addition, privately insured non-Hispanic whites also had significantly shorter diagnostic times than did privately insured non-Hispanic African Americans (16 vs. 27 days). In addition, Short et al.8 demonstrated that when the health plan status was held constant in a retrospective study of 476 white patients and 99 African American patients with newly diagnosed breast cancer, African American patients had a higher mortality rate (8.1% vs. 3.6%) and were diagnosed at a later stage. Accordingly, interventions must go beyond just providing health insurance to minorities in order to have a significant impact on the mortality gap.

 

Patient education and physician communication

 

An underlying cause frequently cited for the delayed diagnosis and treatment of African American patients with breast cancer is a lack of patient education and physician communication. These elements are essential components of quality care. In a qualitative study of low-income, ethnically diverse women older than 40 years, Allen et al.9 identified salient themes differentiating women who received timely follow-up from those who did not. For the women who delayed follow-up, prominent themes were dissatisfaction with the communication of results, disrespect on the part of providers and clinical staff, logistical barriers to accessing services, anxiety and fear about a possible cancer diagnosis, and a lack of information about breast cancer screening and symptoms.

In another study, Masi and Gehlert10 employed focus group interviews of African American adults to characterize their perceptions of breast cancer treatment. The analysis revealed a core set of themes, including mistrust of the medical establishment and concern about the effect of racism on treatment quality; the researchers concluded that “in the eyes of many study participants, the issues of trust, race, and quality of care were closely intertwined.”10 Thus, this knot that is created by underlying issues of trust can be untied only by interventions that address improved physician communication and patient education.

Janz et al.11 examined racial differences in the adequacy of information and support for women with breast cancer. The researchers used survey data from a population of 1,766 women diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results (SEER) registry. The study found that across treatment- and survivorship-related issues, African American women desired more information than white women did. One of the explanations for the unmet information needs posited by the authors is a failure to provide culturally appropriate information related to health issues. This breakdown in patient education and communication was demonstrated by Hawley et al. to hold across providers and locations.12

Hawley et al.12 evaluated the association between minority patients’ knowledge of breast cancer treatment risks and benefits and provider characteristics and treatment locations. The provider characteristics included surgeon-level independent variables, such as breast cancer procedure volume and demographics (years in practice and sex). The treatment location variable was categorized into one of three groups: National Cancer Institute–designated cancer center, American College of Surgeons cancer program, or no specific cancer program. Provider characteristics and treatment locations are factors previously identified as being associated with high-quality care.

 

 

The study employed a multivariable regression to identify associations between patient, surgeon, and treatment-setting factors and accurate knowledge of the survival benefit and recurrence risk related to mastectomy and breast-conserving surgery with radiation. The authors found that minority women were significantly less likely to have adequate knowledge and more likely to be uncertain about recurrence risk than were white patients. In the multivariate logistic regression model, neither provider characteristics nor treatment setting attenuated observed racial disparities in knowledge. Quality health care depends on the ability to make an informed treatment decision. As the authors concluded, this study underscores the need for providers to communicate information effectively to all patients, and effective communication relies on the cultural competency of providers.13 Without effective, culturally competent communication, there are treatment delays and omissions that result in poor-quality cancer care. Currently, the research has established that these communication deficits are found across providers and treatment center types.

Patient Navigation

Patient navigation has been championed as a method of improving care in breast cancer by enhancing patient communication and education, and removing barriers to timely care. Patient navigation empowers patients to become knowledgeable about their own health and supports them through the course of care.14 Patient navigation programs have been developed to address the patient communication breakdowns and underuse and misuse of treatment among vulnerable populations, which were detailed earlier in this series and are thought to contribute to the racial mortality gap.15

A benefit of patient navigation has been suggested in studies evaluating the time to diagnosis and follow-up from an abnormal screening. Markossian et al.16 evaluated the efficacy of a Chicago-based cancer patient navigation program developed to reduce the time from abnormal screening to definitive diagnostic testing. The majority of patients in this study were Hispanic (66%) and African American (32%). Compared with controls without navigation, the breast navigation group had a shorter time to diagnostic resolution. Hoffman et al.17 evaluated patient navigation in the District of Columbia to determine its ability to reduce the breast cancer diagnostic time (number of days from abnormal screening to a definitive diagnosis). African American women comprised 48% of the study population. The investigators found that women in the navigation group reached their diagnostic resolution significantly faster than did other women. Among women with breast cancer, there was a nearly fourfold reduction in time to diagnostic resolution for women in the navigation group versus women without a navigator.

 

Adapted with permission from the American Cancer Society.

In a national multicenter study, Ko et al.14 were the first to evaluate whether patient navigation can improve the quality of breast cancer care. The authors hypothesized that breast cancer patients assigned a navigator would be more likely to receive recommended standard treatment than were those without a navigator. Three separate quality measures of breast cancer care, including initiation of antiestrogen therapy, radiation therapy, and chemotherapy, were evaluated. Study participants were racially and ethnically diverse, with a plurality being African American (37.5%). The study produced mixed results: Patients in the navigation group had a statistically higher likelihood of receiving antiestrogen therapy than were non–navigated controls, but navigation patients eligible for radiation therapy were no more likely to receive it than were controls. The initiation of chemotherapy could not be accurately assessed because of a limited sample size. The study concluded that navigation alone does not remove all of the barriers to quality care for breast cancer patients, and barriers are diverse and potentially specific to the modality of treatment.

A study by Tejeda et al.18 used a systematic framework to characterize barriers faced by minority patients with breast and cervical cancer. The investigators categorized barriers as intrapersonal (defined by characteristics of the individual, such as knowledge, belief, attitudes, and transportation and financial barriers), interpersonal (defined by processes that involve other people, such as social support systems, child care, and employment issues), or institutional (defined by characteristics and policies of organizations). The authors found that although navigators were able to easily resolve intrapersonal barriers, ongoing navigation was needed to address institutional barriers. Thus, patient navigation in a vacuum does not work, and it is only in examining the entire health care system that changes can be implemented to eliminate barriers to quality care and close the racial mortality chasm.

System Change

To this effect, Clarke et al.19 performed a review of the disparities intervention literature to understand which interventions are being evaluated to improve minority health. The authors found that the majority of such interventions are focused on changing the patient rather than the system that serves her, with the most common strategy being education and training (37% of strategies studied). Interventions aimed at health care system improvements were surprisingly few, with the responsibility for change resting with the patient rather than the care delivery system. Interventions incorporating community involvement were also severely lacking and reflected only 6.5% of the reviewed intervention tactics. The majority of interventions failed to involve major stakeholders, including providers, health care institutions, community organizers, and policy makers, and accordingly, were unlikely to succeed in creating meaningful change.

 

 

In breast cancer, there have been examples of successful system-based approaches to reducing the racial mortality disparity. At New York area hospitals, Bickell et al.20 implemented a tracking and feedback registry to close the referral loop between surgeons and oncologists to decrease the underuse of valuable adjuvant treatments.

The intervention targeted important quality issues in both communication (the breakdown in dialogue among providers of different specialties and between providers and patients) and the underuse of adjuvant treatment in minorities. The approach was designed to address failures in the health care system through the involvement of leadership from pathology, surgery, and oncology. The intervention also incorporated technology, with tracking software prompting contact with patients who had failed to follow up. Among African American and Hispanic women, there were statistically significant decreases in the underuse of radiotherapy (23% before the intervention vs. 10% after the intervention), chemotherapy (26% vs. 6%), and hormonal therapy (27% vs. 11%). After the intervention, minority race was no longer a risk factor for low rates of oncology consultation or underuse of adjuvant therapy. Interestingly, four of the six hospitals involved in this study had a patient navigation system in place; however, as discussed, the navigation system alone was not enough to address the system failures that led to disparities in care.

Ansell et al.21 also described a system-based approach to reducing the breast cancer mortality disparity in Chicago. The Metropolitan Chicago Breast Cancer Task Force comprised 102 individuals and 74 Chicago area organizations to address the growing disparity in breast cancer mortality between African American and white patients. The task force identified a number of themes underlying the disparity gap, including a need for breast cancer education and outreach programs for African American women, a broken mammography process leading to quality differences between African American and white patients, and a number of barriers to diagnosis and treatment, including fear, a lack of primary care, the burden of insurance copays/deductibles, and the noncompletion of treatment for social and economic reasons. After identifying these underlying causes, the task force proposed that addressing one aspect of the health care system would not correct the problem, but rather quality improvement initiatives would have to occur across the continuum of care for breast cancer.

In Delaware, such a broad system-based intervention was implemented to eliminate health disparities in colorectal cancer.22 Delaware created a comprehensive statewide colorectal screening and treatment program, combining many of the interventions discussed previously, including insurance coverage, patient education and communication, and patient navigation, to address the entire health care system and its treatment of African Americans with colorectal cancer. The state also partnered with underserved community organizations to tailor programs locally and create targeted marketing campaigns.

The results of this system-based approach were impressive, with screening rates among African American increasing from 48% to 74% and equaling the rate among whites. In addition, among African American patients, the percentage diagnosed at advanced and regional stages declined from 79% to 40%, and the percentage diagnosed at a local stage increased from 16% to 50%. Most importantly, the mortality rate declined by 42% for African Americans, resulting in a rate almost equal to that among whites. Significantly, this program was also found to be economically viable, because the cost savings from reduced cancer incidence and the stage shift to cancers requiring less-aggressive treatment offset the program cost. As the authors concluded, this model of a comprehensive, system-wide approach to the racial mortality difference would lend itself to other cancers, and more research is needed to assess and build such an approach to breast cancer.

As discussed in the aforementioned studies, multifaceted interventions that address all stakeholders are needed to close the racial survival disparity in breast cancer. In the final installment of this series, we will address how the changing care models ushered in by the Patient Protection and Affordable Care Act have the potential to advance this agenda of creating an intervention that works across the breast cancer care continuum to reduce disparities.

Other installments of this column can be found in the Related Content box.

1. Daly B, Olopade OI. A perfect storm: How tumor biology, genomics, and health care delivery patterns collide to create a racial survival disparity in breast cancer and proposed interventions for change. CA Cancer J Clin. 2015 May-Jun;65(3):221-38.

2. Lillie-Blanton M, Hoffman C. The role of health insurance coverage in reducing racial/ethnic disparities in health care. Health Aff (Millwood). 2005 Mar-Apr;24(2):398-408.

3. Ayanian JZ, Kohler BA, Abe T, Epstein AM. The relation between health insurance coverage and clinical outcomes among women with breast cancer. N Engl J Med. 1993 Jul 29;329(5):326-31.

 

 

4. Coburn N, Fulton J, Pearlman DN, Law C, DiPaolo B, Cady B. Treatment variation by insurance status for breast cancer patients. Breast J. 2008 Mar-Apr;14(2):128-34.

5. Voti L, Richardson LC, Reis I, Fleming LE, Mackinnon J, Coebergh JW. The effect of race/ethnicity and insurance in the administration of standard therapy for local breast cancer in Florida. Breast Cancer Res Treat. 2006 Jan;95(1):89-95.

6. Baicker K, Taubman SL, Allen HL, et al. The Oregon experiment – effects of Medicaid on clinical outcomes. N Engl J Med. 2013 May 2;368(18):1713-22.

7. Hoffman HJ, LaVerda NL, Levine PH, et al. Having health insurance does not eliminate race/ethnicity-associated delays in breast cancer diagnosis in the District of Columbia. Cancer. 2011 Aug 15;117(16):3824-32.

8. Short LJ, Fisher MD, Wahl PM, et al. Disparities in medical care among commercially insured patients with newly diagnosed breast cancer: opportunities for intervention. Cancer. 2010 Jan 1;116(1):193-202.

9. Allen JD, Shelton RC, Harden E, Goldman RE. Follow-up of abnormal screening mammograms among low-income ethnically diverse women: findings from a qualitative study. Patient Educ Couns. 2008 Aug;72(2):283-92.

10. Masi CM, Gehlert S. Perceptions of breast cancer treatment among African-American women and men: implications for interventions. J Gen Intern Med. 2009 Mar;24(3):408-14.

11. Janz NK, Mujahid MS, Hawley ST, Griggs JJ, Hamilton AS, Katz SJ. Racial/ethnic differences in adequacy of information and support for women with breast cancer. Cancer. 2008 Sep 1;113(5):1058-67.

12. Hawley ST, Fagerlin A, Janz NK, Katz SJ. Racial/ethnic disparities in knowledge about risks and benefits of breast cancer treatment: does it matter where you go? Health Serv Res. 2008 Aug;43(4):1366-87.

13. Lannin DR, Mathews HF, Mitchell J, Swanson MS. Impacting cultural attitudes in African-American women to decrease breast cancer mortality. Am J Surg. 2002 Nov;184(5):418-23.

14. Ko NY, Darnell JS, Calhoun E, et al. Can patient navigation improve receipt of recommended breast cancer care? Evidence from the National Patient Navigation Research Program. J Clin Oncol. 2014 Sep 1;32(25):2758-64.

15. Vargas RB, Ryan GW, Jackson CA, Rodriguez R, Freeman HP. Characteristics of the original patient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer. Cancer. 2008 Jul 15;113(2):426-33.

16. Markossian TW, Darnell JS, Calhoun EA. Follow-up and timeliness after an abnormal cancer screening among underserved, urban women in a patient navigation program. Cancer Epidemiol Biomarkers Prev. 2012 Oct;21(10):1691-700.

17. Hoffman HJ, LaVerda NL, Young HA, et al. Patient navigation significantly reduces delays in breast cancer diagnosis in the District of Columbia. Cancer Epidemiol Biomarkers Prev. 2012 Oct;21(10):1655-63.

18. Tejeda S, Darnell JS, Cho YI, Stolley MR, Markossian TW, Calhoun EA. Patient barriers to follow-up care for breast and cervical cancer abnormalities. J Womens Health (Larchmt). 2013 Jun;22(6):507-17.

19. Clarke AR, Goddu AP, Nocon RS, et al. Thirty years of disparities intervention research: what are we doing to close racial and ethnic gaps in health care? Med Care. 2013 Nov;51(11):1020-26.

20. Bickell NA, Shastri K, Fei K, et al. A tracking and feedback registry to reduce racial disparities in breast cancer care. J Natl Cancer Inst. 2008 Dec 3;100(23):1717-23.

21. Ansell D, Grabler P, Whitman S, et al. A community effort to reduce the black/white breast cancer mortality disparity in Chicago. Cancer Causes Control. 2009 Nov;20(9):1681-88.

22. Grubbs SS, Polite BN, Carney J, Jr., et al. Eliminating racial disparities in colorectal cancer in the real world: it took a village. J Clin Oncol. 2013 Jun 1;31(16):1928-30.

 

 

Dr. Bobby Daly
Bobby Daly, MD, MBA, is the chief fellow in the section of hematology/oncology at the University of Chicago Medicine. His clinical focus is breast and thoracic oncology, and his research focus is health services. Specifically, Dr. Daly researches disparities in oncology care delivery, oncology health care utilization, aggressive end-of-life oncology care, and oncology payment models. He received his MD and MBA from Harvard Medical School and Harvard Business School, both in Boston, and a BA in Economics and History from Stanford (Calif.) University. He was the recipient of the Dean’s Award at Harvard Medical and Business Schools.

 

Dr. Olufunmilayo Olopade

Olufunmilayo Olopade, MD, FACP, OON, is the Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics, and director, Center for Global Health at the University of Chicago. She is adopting emerging high throughput genomic and informatics strategies to identify genetic and nongenetic risk factors for breast cancer in order to implement precision health care in diverse populations. This innovative approach has the potential to improve the quality of care and reduce costs while saving more lives.

Disclosures: Dr. Olopade serves on the Medical Advisory Board for CancerIQ. Dr. Daly serves as a director of Quadrant Holdings Corporation and receives compensation from this entity. Frontline Medical Communications is a subsidiary of Quadrant Holdings Corporation.

Published in conjunction with Susan G. Komen®.

Editor’s Note: This is the fourth installment of a five-part monthly series that will discuss the biologic, genomic, and health system factors that contribute to the racial survival disparity in breast cancer. The series was adapted from an article that originally appeared in CA: A Cancer Journal for Clinicians,1 a journal of the American Cancer Society. Eliminating racial disparities in cancer mortality through effective interventions has become an increasingly important imperative of federal, state, and community health care programs. This month’s column reviews interventions to close this survival gap.

 

Insurance

It has been posited that interventions aimed at providing insurance coverage to minority patients will be able to reduce racial health care disparities.2 Studies have indicated that women without insurance present with more-advanced disease,3,4 and are more likely to receive nonstandard treatment.5 However, outside of cancer care, a large study of Medicaid expansion in Oregon demonstrated that Medicaid coverage alone generated no significant improvement in measured physical health outcomes in the first 2 years.6 Thus, coverage alone does not ensure that patients will be able to navigate the health care system and that quality care will be provided.

In breast cancer, Hoffman et al.7 evaluated the effect of race and health insurance on diagnostic time, which was defined as the number of days from suspicious finding to diagnostic resolution (either no evidence of malignancy on diagnostic mammogram or definitive diagnosis by biopsy) in a large, urban setting. The authors’ hypothesis was that every insured patient would receive the same timely diagnosis as any other patient with equivalent insurance, regardless of race or ethnicity. The study found that non-Hispanic whites with government insurance had significantly shorter diagnostic times than did non-Hispanic African Americans with government insurance: The average diagnostic times were 12 and 39 days, respectively. In addition, privately insured non-Hispanic whites also had significantly shorter diagnostic times than did privately insured non-Hispanic African Americans (16 vs. 27 days). In addition, Short et al.8 demonstrated that when the health plan status was held constant in a retrospective study of 476 white patients and 99 African American patients with newly diagnosed breast cancer, African American patients had a higher mortality rate (8.1% vs. 3.6%) and were diagnosed at a later stage. Accordingly, interventions must go beyond just providing health insurance to minorities in order to have a significant impact on the mortality gap.

 

Patient education and physician communication

 

An underlying cause frequently cited for the delayed diagnosis and treatment of African American patients with breast cancer is a lack of patient education and physician communication. These elements are essential components of quality care. In a qualitative study of low-income, ethnically diverse women older than 40 years, Allen et al.9 identified salient themes differentiating women who received timely follow-up from those who did not. For the women who delayed follow-up, prominent themes were dissatisfaction with the communication of results, disrespect on the part of providers and clinical staff, logistical barriers to accessing services, anxiety and fear about a possible cancer diagnosis, and a lack of information about breast cancer screening and symptoms.

In another study, Masi and Gehlert10 employed focus group interviews of African American adults to characterize their perceptions of breast cancer treatment. The analysis revealed a core set of themes, including mistrust of the medical establishment and concern about the effect of racism on treatment quality; the researchers concluded that “in the eyes of many study participants, the issues of trust, race, and quality of care were closely intertwined.”10 Thus, this knot that is created by underlying issues of trust can be untied only by interventions that address improved physician communication and patient education.

Janz et al.11 examined racial differences in the adequacy of information and support for women with breast cancer. The researchers used survey data from a population of 1,766 women diagnosed with nonmetastatic breast cancer and reported to the Los Angeles County Surveillance, Epidemiology, and End Results (SEER) registry. The study found that across treatment- and survivorship-related issues, African American women desired more information than white women did. One of the explanations for the unmet information needs posited by the authors is a failure to provide culturally appropriate information related to health issues. This breakdown in patient education and communication was demonstrated by Hawley et al. to hold across providers and locations.12

Hawley et al.12 evaluated the association between minority patients’ knowledge of breast cancer treatment risks and benefits and provider characteristics and treatment locations. The provider characteristics included surgeon-level independent variables, such as breast cancer procedure volume and demographics (years in practice and sex). The treatment location variable was categorized into one of three groups: National Cancer Institute–designated cancer center, American College of Surgeons cancer program, or no specific cancer program. Provider characteristics and treatment locations are factors previously identified as being associated with high-quality care.

 

 

The study employed a multivariable regression to identify associations between patient, surgeon, and treatment-setting factors and accurate knowledge of the survival benefit and recurrence risk related to mastectomy and breast-conserving surgery with radiation. The authors found that minority women were significantly less likely to have adequate knowledge and more likely to be uncertain about recurrence risk than were white patients. In the multivariate logistic regression model, neither provider characteristics nor treatment setting attenuated observed racial disparities in knowledge. Quality health care depends on the ability to make an informed treatment decision. As the authors concluded, this study underscores the need for providers to communicate information effectively to all patients, and effective communication relies on the cultural competency of providers.13 Without effective, culturally competent communication, there are treatment delays and omissions that result in poor-quality cancer care. Currently, the research has established that these communication deficits are found across providers and treatment center types.

Patient Navigation

Patient navigation has been championed as a method of improving care in breast cancer by enhancing patient communication and education, and removing barriers to timely care. Patient navigation empowers patients to become knowledgeable about their own health and supports them through the course of care.14 Patient navigation programs have been developed to address the patient communication breakdowns and underuse and misuse of treatment among vulnerable populations, which were detailed earlier in this series and are thought to contribute to the racial mortality gap.15

A benefit of patient navigation has been suggested in studies evaluating the time to diagnosis and follow-up from an abnormal screening. Markossian et al.16 evaluated the efficacy of a Chicago-based cancer patient navigation program developed to reduce the time from abnormal screening to definitive diagnostic testing. The majority of patients in this study were Hispanic (66%) and African American (32%). Compared with controls without navigation, the breast navigation group had a shorter time to diagnostic resolution. Hoffman et al.17 evaluated patient navigation in the District of Columbia to determine its ability to reduce the breast cancer diagnostic time (number of days from abnormal screening to a definitive diagnosis). African American women comprised 48% of the study population. The investigators found that women in the navigation group reached their diagnostic resolution significantly faster than did other women. Among women with breast cancer, there was a nearly fourfold reduction in time to diagnostic resolution for women in the navigation group versus women without a navigator.

 

Adapted with permission from the American Cancer Society.

In a national multicenter study, Ko et al.14 were the first to evaluate whether patient navigation can improve the quality of breast cancer care. The authors hypothesized that breast cancer patients assigned a navigator would be more likely to receive recommended standard treatment than were those without a navigator. Three separate quality measures of breast cancer care, including initiation of antiestrogen therapy, radiation therapy, and chemotherapy, were evaluated. Study participants were racially and ethnically diverse, with a plurality being African American (37.5%). The study produced mixed results: Patients in the navigation group had a statistically higher likelihood of receiving antiestrogen therapy than were non–navigated controls, but navigation patients eligible for radiation therapy were no more likely to receive it than were controls. The initiation of chemotherapy could not be accurately assessed because of a limited sample size. The study concluded that navigation alone does not remove all of the barriers to quality care for breast cancer patients, and barriers are diverse and potentially specific to the modality of treatment.

A study by Tejeda et al.18 used a systematic framework to characterize barriers faced by minority patients with breast and cervical cancer. The investigators categorized barriers as intrapersonal (defined by characteristics of the individual, such as knowledge, belief, attitudes, and transportation and financial barriers), interpersonal (defined by processes that involve other people, such as social support systems, child care, and employment issues), or institutional (defined by characteristics and policies of organizations). The authors found that although navigators were able to easily resolve intrapersonal barriers, ongoing navigation was needed to address institutional barriers. Thus, patient navigation in a vacuum does not work, and it is only in examining the entire health care system that changes can be implemented to eliminate barriers to quality care and close the racial mortality chasm.

System Change

To this effect, Clarke et al.19 performed a review of the disparities intervention literature to understand which interventions are being evaluated to improve minority health. The authors found that the majority of such interventions are focused on changing the patient rather than the system that serves her, with the most common strategy being education and training (37% of strategies studied). Interventions aimed at health care system improvements were surprisingly few, with the responsibility for change resting with the patient rather than the care delivery system. Interventions incorporating community involvement were also severely lacking and reflected only 6.5% of the reviewed intervention tactics. The majority of interventions failed to involve major stakeholders, including providers, health care institutions, community organizers, and policy makers, and accordingly, were unlikely to succeed in creating meaningful change.

 

 

In breast cancer, there have been examples of successful system-based approaches to reducing the racial mortality disparity. At New York area hospitals, Bickell et al.20 implemented a tracking and feedback registry to close the referral loop between surgeons and oncologists to decrease the underuse of valuable adjuvant treatments.

The intervention targeted important quality issues in both communication (the breakdown in dialogue among providers of different specialties and between providers and patients) and the underuse of adjuvant treatment in minorities. The approach was designed to address failures in the health care system through the involvement of leadership from pathology, surgery, and oncology. The intervention also incorporated technology, with tracking software prompting contact with patients who had failed to follow up. Among African American and Hispanic women, there were statistically significant decreases in the underuse of radiotherapy (23% before the intervention vs. 10% after the intervention), chemotherapy (26% vs. 6%), and hormonal therapy (27% vs. 11%). After the intervention, minority race was no longer a risk factor for low rates of oncology consultation or underuse of adjuvant therapy. Interestingly, four of the six hospitals involved in this study had a patient navigation system in place; however, as discussed, the navigation system alone was not enough to address the system failures that led to disparities in care.

Ansell et al.21 also described a system-based approach to reducing the breast cancer mortality disparity in Chicago. The Metropolitan Chicago Breast Cancer Task Force comprised 102 individuals and 74 Chicago area organizations to address the growing disparity in breast cancer mortality between African American and white patients. The task force identified a number of themes underlying the disparity gap, including a need for breast cancer education and outreach programs for African American women, a broken mammography process leading to quality differences between African American and white patients, and a number of barriers to diagnosis and treatment, including fear, a lack of primary care, the burden of insurance copays/deductibles, and the noncompletion of treatment for social and economic reasons. After identifying these underlying causes, the task force proposed that addressing one aspect of the health care system would not correct the problem, but rather quality improvement initiatives would have to occur across the continuum of care for breast cancer.

In Delaware, such a broad system-based intervention was implemented to eliminate health disparities in colorectal cancer.22 Delaware created a comprehensive statewide colorectal screening and treatment program, combining many of the interventions discussed previously, including insurance coverage, patient education and communication, and patient navigation, to address the entire health care system and its treatment of African Americans with colorectal cancer. The state also partnered with underserved community organizations to tailor programs locally and create targeted marketing campaigns.

The results of this system-based approach were impressive, with screening rates among African American increasing from 48% to 74% and equaling the rate among whites. In addition, among African American patients, the percentage diagnosed at advanced and regional stages declined from 79% to 40%, and the percentage diagnosed at a local stage increased from 16% to 50%. Most importantly, the mortality rate declined by 42% for African Americans, resulting in a rate almost equal to that among whites. Significantly, this program was also found to be economically viable, because the cost savings from reduced cancer incidence and the stage shift to cancers requiring less-aggressive treatment offset the program cost. As the authors concluded, this model of a comprehensive, system-wide approach to the racial mortality difference would lend itself to other cancers, and more research is needed to assess and build such an approach to breast cancer.

As discussed in the aforementioned studies, multifaceted interventions that address all stakeholders are needed to close the racial survival disparity in breast cancer. In the final installment of this series, we will address how the changing care models ushered in by the Patient Protection and Affordable Care Act have the potential to advance this agenda of creating an intervention that works across the breast cancer care continuum to reduce disparities.

Other installments of this column can be found in the Related Content box.

1. Daly B, Olopade OI. A perfect storm: How tumor biology, genomics, and health care delivery patterns collide to create a racial survival disparity in breast cancer and proposed interventions for change. CA Cancer J Clin. 2015 May-Jun;65(3):221-38.

2. Lillie-Blanton M, Hoffman C. The role of health insurance coverage in reducing racial/ethnic disparities in health care. Health Aff (Millwood). 2005 Mar-Apr;24(2):398-408.

3. Ayanian JZ, Kohler BA, Abe T, Epstein AM. The relation between health insurance coverage and clinical outcomes among women with breast cancer. N Engl J Med. 1993 Jul 29;329(5):326-31.

 

 

4. Coburn N, Fulton J, Pearlman DN, Law C, DiPaolo B, Cady B. Treatment variation by insurance status for breast cancer patients. Breast J. 2008 Mar-Apr;14(2):128-34.

5. Voti L, Richardson LC, Reis I, Fleming LE, Mackinnon J, Coebergh JW. The effect of race/ethnicity and insurance in the administration of standard therapy for local breast cancer in Florida. Breast Cancer Res Treat. 2006 Jan;95(1):89-95.

6. Baicker K, Taubman SL, Allen HL, et al. The Oregon experiment – effects of Medicaid on clinical outcomes. N Engl J Med. 2013 May 2;368(18):1713-22.

7. Hoffman HJ, LaVerda NL, Levine PH, et al. Having health insurance does not eliminate race/ethnicity-associated delays in breast cancer diagnosis in the District of Columbia. Cancer. 2011 Aug 15;117(16):3824-32.

8. Short LJ, Fisher MD, Wahl PM, et al. Disparities in medical care among commercially insured patients with newly diagnosed breast cancer: opportunities for intervention. Cancer. 2010 Jan 1;116(1):193-202.

9. Allen JD, Shelton RC, Harden E, Goldman RE. Follow-up of abnormal screening mammograms among low-income ethnically diverse women: findings from a qualitative study. Patient Educ Couns. 2008 Aug;72(2):283-92.

10. Masi CM, Gehlert S. Perceptions of breast cancer treatment among African-American women and men: implications for interventions. J Gen Intern Med. 2009 Mar;24(3):408-14.

11. Janz NK, Mujahid MS, Hawley ST, Griggs JJ, Hamilton AS, Katz SJ. Racial/ethnic differences in adequacy of information and support for women with breast cancer. Cancer. 2008 Sep 1;113(5):1058-67.

12. Hawley ST, Fagerlin A, Janz NK, Katz SJ. Racial/ethnic disparities in knowledge about risks and benefits of breast cancer treatment: does it matter where you go? Health Serv Res. 2008 Aug;43(4):1366-87.

13. Lannin DR, Mathews HF, Mitchell J, Swanson MS. Impacting cultural attitudes in African-American women to decrease breast cancer mortality. Am J Surg. 2002 Nov;184(5):418-23.

14. Ko NY, Darnell JS, Calhoun E, et al. Can patient navigation improve receipt of recommended breast cancer care? Evidence from the National Patient Navigation Research Program. J Clin Oncol. 2014 Sep 1;32(25):2758-64.

15. Vargas RB, Ryan GW, Jackson CA, Rodriguez R, Freeman HP. Characteristics of the original patient navigation programs to reduce disparities in the diagnosis and treatment of breast cancer. Cancer. 2008 Jul 15;113(2):426-33.

16. Markossian TW, Darnell JS, Calhoun EA. Follow-up and timeliness after an abnormal cancer screening among underserved, urban women in a patient navigation program. Cancer Epidemiol Biomarkers Prev. 2012 Oct;21(10):1691-700.

17. Hoffman HJ, LaVerda NL, Young HA, et al. Patient navigation significantly reduces delays in breast cancer diagnosis in the District of Columbia. Cancer Epidemiol Biomarkers Prev. 2012 Oct;21(10):1655-63.

18. Tejeda S, Darnell JS, Cho YI, Stolley MR, Markossian TW, Calhoun EA. Patient barriers to follow-up care for breast and cervical cancer abnormalities. J Womens Health (Larchmt). 2013 Jun;22(6):507-17.

19. Clarke AR, Goddu AP, Nocon RS, et al. Thirty years of disparities intervention research: what are we doing to close racial and ethnic gaps in health care? Med Care. 2013 Nov;51(11):1020-26.

20. Bickell NA, Shastri K, Fei K, et al. A tracking and feedback registry to reduce racial disparities in breast cancer care. J Natl Cancer Inst. 2008 Dec 3;100(23):1717-23.

21. Ansell D, Grabler P, Whitman S, et al. A community effort to reduce the black/white breast cancer mortality disparity in Chicago. Cancer Causes Control. 2009 Nov;20(9):1681-88.

22. Grubbs SS, Polite BN, Carney J, Jr., et al. Eliminating racial disparities in colorectal cancer in the real world: it took a village. J Clin Oncol. 2013 Jun 1;31(16):1928-30.

 

 

Dr. Bobby Daly
Bobby Daly, MD, MBA, is the chief fellow in the section of hematology/oncology at the University of Chicago Medicine. His clinical focus is breast and thoracic oncology, and his research focus is health services. Specifically, Dr. Daly researches disparities in oncology care delivery, oncology health care utilization, aggressive end-of-life oncology care, and oncology payment models. He received his MD and MBA from Harvard Medical School and Harvard Business School, both in Boston, and a BA in Economics and History from Stanford (Calif.) University. He was the recipient of the Dean’s Award at Harvard Medical and Business Schools.

 

Dr. Olufunmilayo Olopade

Olufunmilayo Olopade, MD, FACP, OON, is the Walter L. Palmer Distinguished Service Professor of Medicine and Human Genetics, and director, Center for Global Health at the University of Chicago. She is adopting emerging high throughput genomic and informatics strategies to identify genetic and nongenetic risk factors for breast cancer in order to implement precision health care in diverse populations. This innovative approach has the potential to improve the quality of care and reduce costs while saving more lives.

Disclosures: Dr. Olopade serves on the Medical Advisory Board for CancerIQ. Dr. Daly serves as a director of Quadrant Holdings Corporation and receives compensation from this entity. Frontline Medical Communications is a subsidiary of Quadrant Holdings Corporation.

Published in conjunction with Susan G. Komen®.

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Adherence to positive airway pressure (PAP) therapy is a difficult patient management issue. Recent studies confirm widely varying PAP therapy adherence rates (30%-84%). Clinicians at the John D. Dingell VA Medical Center in Detroit developed a set of "super user" criteria, a 5-point method for encouraging patients to maximize adherence to PAP therapy. All 5 criteria, which are discussed in detail in this article from Federal Practitioner, must be satisfied to attain “super user” status. For more, go to: http://www.fedprac.com/the-publication/issue-single-view/how-to-make-your-patient-with-sleep-apnea-a-super-user-of-positive-airway-pressure-therapy/bbd97c064c5f91688f04b82c8b04b054/ocregister.html.

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Adherence to positive airway pressure (PAP) therapy is a difficult patient management issue. Recent studies confirm widely varying PAP therapy adherence rates (30%-84%). Clinicians at the John D. Dingell VA Medical Center in Detroit developed a set of "super user" criteria, a 5-point method for encouraging patients to maximize adherence to PAP therapy. All 5 criteria, which are discussed in detail in this article from Federal Practitioner, must be satisfied to attain “super user” status. For more, go to: http://www.fedprac.com/the-publication/issue-single-view/how-to-make-your-patient-with-sleep-apnea-a-super-user-of-positive-airway-pressure-therapy/bbd97c064c5f91688f04b82c8b04b054/ocregister.html.

Adherence to positive airway pressure (PAP) therapy is a difficult patient management issue. Recent studies confirm widely varying PAP therapy adherence rates (30%-84%). Clinicians at the John D. Dingell VA Medical Center in Detroit developed a set of "super user" criteria, a 5-point method for encouraging patients to maximize adherence to PAP therapy. All 5 criteria, which are discussed in detail in this article from Federal Practitioner, must be satisfied to attain “super user” status. For more, go to: http://www.fedprac.com/the-publication/issue-single-view/how-to-make-your-patient-with-sleep-apnea-a-super-user-of-positive-airway-pressure-therapy/bbd97c064c5f91688f04b82c8b04b054/ocregister.html.

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Because pain and depression share common neurobiological pathways and clinical manifestations, you can use similar strategies and, often, the same agents to treat both conditions when they occur together. This article from Current Psychiatry, available at http://www.currentpsychiatry.com/specialty-focus/depressive-disorders/article/chronic-pain-and-depression-treatment-of-2-culprits-in-common/6bc388cf05b07e8dc6bbc1b86f50f0bf.html, reviews different treatment options (including non-drug interventions) that can help patients with both pain and depression, as well as drug-drug interactions that can occur.

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Because pain and depression share common neurobiological pathways and clinical manifestations, you can use similar strategies and, often, the same agents to treat both conditions when they occur together. This article from Current Psychiatry, available at http://www.currentpsychiatry.com/specialty-focus/depressive-disorders/article/chronic-pain-and-depression-treatment-of-2-culprits-in-common/6bc388cf05b07e8dc6bbc1b86f50f0bf.html, reviews different treatment options (including non-drug interventions) that can help patients with both pain and depression, as well as drug-drug interactions that can occur.

Because pain and depression share common neurobiological pathways and clinical manifestations, you can use similar strategies and, often, the same agents to treat both conditions when they occur together. This article from Current Psychiatry, available at http://www.currentpsychiatry.com/specialty-focus/depressive-disorders/article/chronic-pain-and-depression-treatment-of-2-culprits-in-common/6bc388cf05b07e8dc6bbc1b86f50f0bf.html, reviews different treatment options (including non-drug interventions) that can help patients with both pain and depression, as well as drug-drug interactions that can occur.

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Chronic pain and depression: Treatment of 2 culprits in common
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Homelessness, HIV, and HCV

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Homelessness, HIV, and HCV

Homelessness and unstable housing situations are associated with higher rates of human immunodeficiency virus (HIV) and hepatitis C infection (HCV), according to researchers from Columbia University in New York City, McMaster University in Hamilton, Ontario, Canada, and the Ontario HIV Treatment Network in Canada. The researchers reviewed 152 studies involving 139,757 individuals who had HIV or were co-infected with HCV. The researchers found “strong evidence” that the lack of stable, secure, and adequate housing is a significant barrier to consistent and appropriate medical care, as well as the reduction of risk behaviors. For more on this research, see the Federal Practitioner article at: http://www.fedprac.com/the-publication/issue-single-view/homelessness-hiv-and-hcv/6a66b2b7db3f0299caa7aaf050129fb4/ocregister.html.

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Homelessness and unstable housing situations are associated with higher rates of human immunodeficiency virus (HIV) and hepatitis C infection (HCV), according to researchers from Columbia University in New York City, McMaster University in Hamilton, Ontario, Canada, and the Ontario HIV Treatment Network in Canada. The researchers reviewed 152 studies involving 139,757 individuals who had HIV or were co-infected with HCV. The researchers found “strong evidence” that the lack of stable, secure, and adequate housing is a significant barrier to consistent and appropriate medical care, as well as the reduction of risk behaviors. For more on this research, see the Federal Practitioner article at: http://www.fedprac.com/the-publication/issue-single-view/homelessness-hiv-and-hcv/6a66b2b7db3f0299caa7aaf050129fb4/ocregister.html.

Homelessness and unstable housing situations are associated with higher rates of human immunodeficiency virus (HIV) and hepatitis C infection (HCV), according to researchers from Columbia University in New York City, McMaster University in Hamilton, Ontario, Canada, and the Ontario HIV Treatment Network in Canada. The researchers reviewed 152 studies involving 139,757 individuals who had HIV or were co-infected with HCV. The researchers found “strong evidence” that the lack of stable, secure, and adequate housing is a significant barrier to consistent and appropriate medical care, as well as the reduction of risk behaviors. For more on this research, see the Federal Practitioner article at: http://www.fedprac.com/the-publication/issue-single-view/homelessness-hiv-and-hcv/6a66b2b7db3f0299caa7aaf050129fb4/ocregister.html.

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Incretin-based diabetes drugs don’t raise heart failure risk

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Incretin-based antidiabetic drugs didn’t raise the risk of hospitalization for heart failure, according to an international observational study involving 1.5 million patients reported online in The New England Journal of Medicine. “With 3.2 million person-years of observations, we had the statistical power to robustly assess this important drug safety issue,” the investigators said. Read more on the study at Cardiology News: http://www.ecardiologynews.com/specialty-focus/heart-failure/single-article-page/incretin-based-diabetes-drugs-dont-raise-heart-failure-risk/72ea7cb26766fc17483ad005269c5da2.html.

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Incretin-based antidiabetic drugs didn’t raise the risk of hospitalization for heart failure, according to an international observational study involving 1.5 million patients reported online in The New England Journal of Medicine. “With 3.2 million person-years of observations, we had the statistical power to robustly assess this important drug safety issue,” the investigators said. Read more on the study at Cardiology News: http://www.ecardiologynews.com/specialty-focus/heart-failure/single-article-page/incretin-based-diabetes-drugs-dont-raise-heart-failure-risk/72ea7cb26766fc17483ad005269c5da2.html.

Incretin-based antidiabetic drugs didn’t raise the risk of hospitalization for heart failure, according to an international observational study involving 1.5 million patients reported online in The New England Journal of Medicine. “With 3.2 million person-years of observations, we had the statistical power to robustly assess this important drug safety issue,” the investigators said. Read more on the study at Cardiology News: http://www.ecardiologynews.com/specialty-focus/heart-failure/single-article-page/incretin-based-diabetes-drugs-dont-raise-heart-failure-risk/72ea7cb26766fc17483ad005269c5da2.html.

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