Journal of Dermatological Treatment
ISSN: 0954-6634 (Print) 1471-1753 (Online) Journal homepage: http://www.tandfonline.com/loi/ijdt20
Racial differences in the use of extracorporeal photopheresis for mycosis fungoides Crystal Agi, Diane Kuhn, Jina Chung, John Zampella & Ginette Hinds To cite this article: Crystal Agi, Diane Kuhn, Jina Chung, John Zampella & Ginette Hinds (2015) Racial differences in the use of extracorporeal photopheresis for mycosis fungoides, Journal of Dermatological Treatment, 26:3, 266-268 To link to this article: http://dx.doi.org/10.3109/09546634.2014.946381
Accepted author version posted online: 18 Jul 2014. Published online: 06 Aug 2014. Submit your article to this journal
Article views: 164
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Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ijdt20 Download by: [University of Florida]
Date: 05 November 2015, At: 20:56
http://informahealthcare.com/jdt ISSN: 0954-6634 (print), 1471-1753 (electronic) J Dermatolog Treat, 2015; 26(3): 266–268 ! 2014 Informa UK Ltd. DOI: 10.3109/09546634.2014.946381
ORIGINAL ARTICLE
Racial differences in the use of extracorporeal photopheresis for mycosis fungoides Crystal Agi, Diane Kuhn, Jina Chung, John Zampella, and Ginette Hinds
Downloaded by [University of Florida] at 20:56 05 November 2015
Department of Dermatology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Abstract
Keywords
Background: Extracorporeal photopheresis (ECP) is an effective treatment option for mycosis fungoides (MF) and associated with few systemic side effects. Objective: We sought to investigate whether there were differences in rates of ECP use between African-American and Caucasian patients with stage III/IV MF. Methods: We conducted a retrospective review of all patients treated for MF at the Johns Hopkins Hospital main campus outpatient clinic between 1999 and 2011. Results: We identified 65 patients with stage III or IV disease, 20 African-American and 45 Caucasian. Only 7 of 20 African-American patients (35%) compared with 30 of 45 (66%) of Caucasian patients were treated with ECP (p ¼ 0.029). In addition, ECP was discussed as an option for 45% of African-Americans compared to 82% of Caucasians (p ¼ 0.007). When discussed as an option, African-Americans and Caucasians had identical rates of ECP use (78% vs 81%, p ¼ 0.841). Conclusions: Differences in rates of ECP use exist among African-American patients when compared to their Caucasian counterparts and may be related to how often ECP is offered as a treatment option. Improving physician awareness of the factors that influence treatment decision making may help diminish discrepancies in treatment regimens among patients with MF.
Cutaneous T-cell lymphoma, ECP, ethnic skin, mycosis fungoides
Introduction Cutaneous T cell lymphoma, the most common type of skin lymphoma, has been shown to occur with increased incidence in blacks, with incidence rates ranging from 6.1 to 8.1 cases per million in whites compared with 9.0 to 10.0 cases per million in blacks (1–5). The most common variant, mycosis fungoides (MF), also occurs with increased frequency in blacks, and black race has been independently shown to be a poor prognosticator for disease outcomes (4–6). This may be attributed to several factors including more advanced disease at diagnosis, increased likelihood of progression of disease and younger age at diagnosis (4–6). In a study citing worsened outcomes in young, black women with MF, Sun et al. (4) postulated that more aggressive therapies may be necessary for black patients who present with MF given the increased likelihood of rapid progression. While there are a variety of treatment options available for treatment of MF, few have been proven to be clearly superior to others in terms of efficacy and long-term survival. It is important to note, however, that the use of some treatment modalities such as total skin electron beam radiation and extracorporeal photopheresis (ECP) is often limited to large academic centers (7,8). According to the National Cancer Institute and European
Correspondence: Ginette Hinds, MD, Department of Dermatology, Johns Hopkins Hospital, 1550 Orleans St, CRB Suite 211, Baltimore, MD 21231, USA. Tel: 410-955-2400. Fax: 410 662-7774. E-mail: [email protected]
History Received 2 July 2014 Revised 7 July 2014 Accepted 7 July 2014 Published online 5 August 2014
Organization for Research and Treatment of Cancer consensus recommendations for the treatment of MF/Se´zary syndrome, patients with stage III or IV disease with 45% Sezary cells in the peripheral blood can be treated with a wide variety of systemic therapies (7,9). These include the following: total skin electron beam radiation, interferon alpha, ECP oral bexarotene and methotrexate with preference given to those treatment modalities with which the provider and institution are most familiar (7). ECP has been shown to be well tolerated and effective at treating patients with stage III and IV disease and is frequently employed in our practice for treatment of advanced stage MF (9–12). ECP, introduced in 1987, is achieved through the use of 8-methoxysoralen infused lymphocyte-rich plasma, which is pheresed from the patient, then activated with ultraviolet-A light and filtered back into the bloodstream (10,11). ECP is thought to exert anti-clonotypic activity against malignant T-cells, which induces their apoptosis, though only a small percentage of T cells are pheresed per treatment (8,11,13,14). Of the major treatment options listed above, ECP is associated with the fewest systemic side effects which include, nausea, fever and fatigue (8,11). Studies indicate up to 50–75% improvement in MF patients treated with this modality (10,11,13). Predictors of response to ECP include relatively low Sezary count, normal CD8 count, lack of prior treatment with chemotherapy, as well as increased peripheral eosinophilia (11,12,15). Zampella & Hinds (16) noted that black patients with MF are more likely to have increased peripheral eosinophilia, which may make this treatment particularly useful for black patients.
Racial differences in the use of ECP for mycosis fungoides
DOI: 10.3109/09546634.2014.946381
In practice, several factors influence treatment decisionmaking including provider familiarity with the different treatment modalities, patient preference, side effect profile and quality of life considerations. Treatment with ECP typically requires two multi hour treatment sessions on every two weeks over a course of several months, which we believe makes this treatment option less practical for those with tenuous financial and living situations (9,11). To our knowledge, no studies have examined whether treatment rates with ECP vary across ethnic groups. We sought to determine if blacks were less likely to receive ECP and which factors may influence discrepancies in treatment decisions.
Downloaded by [University of Florida] at 20:56 05 November 2015
Methods This study was approved by the Johns Hopkins Institutional Review Board. The records of 345 patients treated at Johns Hopkins Hospital main campus outpatient clinic over a 12-year period (1999–2011) were reviewed, and data were collected on demographics, stage at presentation, treatment modalities received and overall response to treatment. Clinical documents such as clinic notes, referral letters, infusion notes and insurance information were analyzed to determine possible factors that influence rate of ECP use. Data were analyzed in R v. 2.13.0 (Vienna, Austria). Multiple imputation with five imputations was performed for missing data. Patients were staged according to NCCN guidelines for MF and further stratified based on selfidentified race (7). One Hispanic patient with stage III/IV disease was noted but not included in the study for ease of calculation; there were no Asian, Native American or persons of other races with stage III or IV disease identified in the study. No patients self-identified as being of more than one race. We used only the records of the black and white patients for sample size reasons. Patient demographic data and rates of use of ECP treatment were analyzed and assessed for significance using a two-tailed t-test. The Bonferroni correction was used for multiple comparisons. Finally, discussion of ECP as a treatment regimen was analyzed with univariate logistic regression and ECP use given discussion of it as an option was analyzed with a two-tailed t-test.
Results Characteristics of our patient group and factors related to ECP treatment are listed in Table 1. Notably, blacks in our institution present with more advanced disease and at a younger age, which is consistent with previous studies in the literature (3–6). Among those with stage III or IV disease, there was no difference in the stage of disease between blacks and whites. A total of 65 patients with stage III or IV disease were noted in our study, and a total of 46 (71%) were treated with more than three treatment modalities. Only 7 of 20 black patients (35%) compared with 30 of 45 (66%) of white patients received ECP as a part of their treatment. p Values for other treatment modalities used in our patients were also calculated across racial groups, and no difference was noted with the exception of ECP. Table 1. Patient characteristics and ECP treatment.
Number of patients Average stage at presentation Average age at presentation Stage III/IV patients ECP treatment received ECP discussed as treatment option ECP received following discussion
Black
White
p Value
109 2.64 45.31 20/109 7/20 (35%) 9/20 (45%)
213 2.35 54.75 45/213 30/45 (67%) 47/45 (82%)
50.0003 50.0003 1.000 0.029 0.007
7/9 (78%)
30/37 (81%)
0.841
267
With regards to factors influencing ECP treatment, we found that ECP was significantly less likely to be discussed as a treatment option for black patients when compared to white counterparts. However, an equal proportion of black patients and white patients who were offered ECP received treatment. Four white patients were noted to have venous access issues, two of whom eventually received ECP compared to one black patient with venous access issues who also eventually received ECP. Three white patients were noted to have insurance issues, two of whom eventually received ECP. Similarly, three black patients were noted to have insurance issues and two of these patients also later were treated with ECP. Finally, nine white patients were under the primary care or transferred to the care of an oncologist, three of whom received ECP. Seven black patients were under the primary care or transferred to the care of an oncologist, and only one of these patients received ECP.
Discussion While several studies have noted poorer outcomes for black patients with MF, few studies have attempted to examine what factors may lead to those discrepancies. In this retrospective study, we see that there is a discrepancy in the number of black patients receiving ECP and that this discrepancy may be related to the fact that blacks were less likely to be offered ECP as a treatment option. An important take away point is that when offered ECP as a treatment option, blacks and whites were equally likely to be started on this treatment regimen. We were surprised to note that insurance and venous access issues did not play any role in the decision to start ECP as these issues were only discussed in a small number of instances. The reasons behind the discrepancy in the discussion of ECP are multifactorial and may be related to a host of factors that are difficult to quantify such as the patient’s financial stability (which influences their ability to receive time intensive treatments multiple times a week), education level, overall perceived health and need for aggressive therapies as well as the influence of referring providers. In an urban setting such as Baltimore, it is possible that race could serve as proxy for such factors, particularly financial status and education level, though this is difficult to ascertain from a retrospective review alone. Clinical documentation largely provides a view of the encounter from a provider’s perspective so these patient derived factors are difficult to quantify. The discrepancy shown in the treatment options used and those discussed is not unique to MF. In 2003, the Institute of Medicine (17) published a report showing that blacks were less likely to receive equal medical treatments when compared to whites, including cancer care, even when controlled for a variety of factors such as insurance, age and place of treatment. The report suggests that subtle cultural differences, patient distrust of healthcare providers and access to healthcare are possibly patient-derived factors. Physician-derived factors include clinical uncertainty when dealing with minority patients, assumptions made about the patients (such as likelihood to adhere to prolonged treatment course) and patient attitudes may also impact physician decision making. It is important to note, however, that an important service provided by the physician is the filtering of treatment options in hopes of making the final decision easier on the patient. Accordingly, there are instances in which a physician may decide against the discussion of ECP if it is deemed to be a suboptimal treatment option due to other factors brought up during the patient encounter. Doing this may help relieve some of the burden patients are faced with when dealing with a cancer diagnosis. These factors may not be fully articulated in the written
Downloaded by [University of Florida] at 20:56 05 November 2015
268
C. Agi et al.
record and therefore are difficult to quantify during a retrospective chart review. Because ECP is rarely given as monotherapy, it is difficult to determine if lack of treatment with ECP is the major contributor to the differences we note in the overall response to treatment. However, as there were no other differences in treatment options noted with the exception of ECP in patients with equal stages of disease, it is important to further study the impact of ECP in treating patients with MF. Larger studies are needed to see if blacks respond better when ECP is added to their treatment when compared to their peers not treated with ECP. Furthermore, additional studies should be aimed at assessing patients’ assumptions about ECP and their perceived difficulties associated with treatment as well as physicians’ assumptions as these may be driving decisions regarding treatment. This is especially important in light of the fact that increased peripheral eosinophilia, more often seen in black patients with MF, has been shown to be a positive prognosticator for response to ECP (8). This study was performed at a single institution and is thus a limitation of the study. Other limitations of this study include selection bias, as Johns Hopkins is a quaternary center that frequently receives patients from local practices that have tried or declined other treatment options prior to being seen in our clinic. In addition, this study only reflects those patients who were seen and then treated at our institution within the time frame and does not account for those who may have left our facility and received treatments elsewhere. Fortunately, ensuring that physicians discuss all treatment options with patients is an issue that can be changed easily, once awareness is established. This study may shed led light on treatment disparities among patients with MF and, more importantly, offers suggestions in treatment approaches that can improve the care provided to our patients.
Declaration of interest The authors have no conflicts of interest to declare. A portion of this work was presented at the National Medical Association Annual Convention and Scientific Assembly 27–31 July 2013 in Toronto, Canada.
References 1. Bradford PT, Devesa SS, Anderson WF, Toro JR. Cutaneous lymphoma incidence patterns in the United States: a populationbased study of 3884 cases. Blood. 2009;113:5064–73. 2. Criscione VD, Weinstock MA. Incidence of cutaneous T-cell lymphoma in the United States, 1973–2002. Arch Dermatol. 2007; 143:854–9.
J Dermatolog Treat, 2015; 26(3): 266–268
3. Imam MH, Shenoy PJ, Flowers CR, et al. Incidence and survival patterns of cutaneous T-cell lymphomas in the United States. Leuk Lymphoma. 2013;54:752–9. 4. Sun G, Berthelot C, Li Y, et al. Poor prognosis in non-Caucasian patients with early-onset mycosis fungoides. J Am Acad Dermatol. 2009;60:231–5. 5. Wilson LD, Hinds GA, Yu JB. Age, race, sex, stage, and incidence of cutaneous lymphoma. Clin Lymphoma Myeloma Leuk. 2012;12: 291–6. 6. Zackheim HS, Amin S, Kashani-Sabet M, McMillan A. Prognosis in cutaneous T-cell lymphoma by skin stage: longterm survival in 489 patients. J Am Acad Dermatol. 1999;40: 418–25. 7. NCCN Guidelines Version 3.2012. Mycosis fungoides/sezary syndrome: suggested treatment regimens. Available from: www.nccn.org/professionals/physician_gls/pdf/nhl.pdf. Accessed December 12, 2012. 8. McKenna KE, Whittaker S, Rhodes LE, et al.; British Photodermatology Group, UK Skin Lymphoma Group. Evidencebased practice of photopheresis 1987–2001: a report of a workshop of the British photodermatology group and the U.K. skin lymphoma group. Br J Dermatol. 2006;154:7–20. 9. Trautinger F, Knobler R, Willemze R, et al. EORTC consensus recommendations for the treatment of mycosis fungoides/Sezary syndrome. Eur J Cancer. 2006;42:1014–30. 10. Zic J, Arzubiaga C, Salhany KE, et al. Extracorporeal photopheresis for the treatment of cutaneous T-cell lymphoma. J Am Acad Dermatol. 1992;27:729–36. 11. Oliven A, Shechter Y. Extracorporeal photopheresis: a review. Blood Rev. 2001;15:103–8. 12. Heald P, Rook A, Perez M, et al. Treatment of erythrodermic cutaneous T-cell lymphoma with extracorporeal photochemotherapy. J Am Acad Dermatol. 1992;27:427–33. 13. Rook AH, Suchin KR, Kao DM, et al. Photopheresis: clinical applications and mechanism of action. J Investig Dermatol Symp Proc. 1999;4:85–90. 14. Miracco C, Rubegni P, De Aloe G, et al. Extracorporeal photochemotherapy induces apoptosis of infiltrating lymphoid cells in patients with mycosis fungoides in early stages. A quantitative histological study. Br J Dermatol. 1997;137: 549–57. 15. McGirt LY, Thoburn C, Hess A, Vonderheid EC. Predictors of response to extracorporeal photopheresis in advanced mycosis fungoides and sezary syndrome. Photodermatol Photoimmunol Photomed. 2010;26:182–91. 16. Zampella JG, Hinds GA. Racial differences in mycosis fungoides: a retrospective study with a focus on eosinophilia. J Am Acad Dermatol. 2013;68:967–71. 17. Smedley BD, Stith AY, Nelson AR; Institute of Medicine. Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academy Press, 2003. p 764.
ISSN: 0954-6634 (Print) 1471-1753 (Online) Journal homepage: http://www.tandfonline.com/loi/ijdt20
Racial differences in the use of extracorporeal photopheresis for mycosis fungoides Crystal Agi, Diane Kuhn, Jina Chung, John Zampella & Ginette Hinds To cite this article: Crystal Agi, Diane Kuhn, Jina Chung, John Zampella & Ginette Hinds (2015) Racial differences in the use of extracorporeal photopheresis for mycosis fungoides, Journal of Dermatological Treatment, 26:3, 266-268 To link to this article: http://dx.doi.org/10.3109/09546634.2014.946381
Accepted author version posted online: 18 Jul 2014. Published online: 06 Aug 2014. Submit your article to this journal
Article views: 164
View related articles
View Crossmark data
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ijdt20 Download by: [University of Florida]
Date: 05 November 2015, At: 20:56
http://informahealthcare.com/jdt ISSN: 0954-6634 (print), 1471-1753 (electronic) J Dermatolog Treat, 2015; 26(3): 266–268 ! 2014 Informa UK Ltd. DOI: 10.3109/09546634.2014.946381
ORIGINAL ARTICLE
Racial differences in the use of extracorporeal photopheresis for mycosis fungoides Crystal Agi, Diane Kuhn, Jina Chung, John Zampella, and Ginette Hinds
Downloaded by [University of Florida] at 20:56 05 November 2015
Department of Dermatology, Johns Hopkins School of Medicine, Baltimore, MD, USA
Abstract
Keywords
Background: Extracorporeal photopheresis (ECP) is an effective treatment option for mycosis fungoides (MF) and associated with few systemic side effects. Objective: We sought to investigate whether there were differences in rates of ECP use between African-American and Caucasian patients with stage III/IV MF. Methods: We conducted a retrospective review of all patients treated for MF at the Johns Hopkins Hospital main campus outpatient clinic between 1999 and 2011. Results: We identified 65 patients with stage III or IV disease, 20 African-American and 45 Caucasian. Only 7 of 20 African-American patients (35%) compared with 30 of 45 (66%) of Caucasian patients were treated with ECP (p ¼ 0.029). In addition, ECP was discussed as an option for 45% of African-Americans compared to 82% of Caucasians (p ¼ 0.007). When discussed as an option, African-Americans and Caucasians had identical rates of ECP use (78% vs 81%, p ¼ 0.841). Conclusions: Differences in rates of ECP use exist among African-American patients when compared to their Caucasian counterparts and may be related to how often ECP is offered as a treatment option. Improving physician awareness of the factors that influence treatment decision making may help diminish discrepancies in treatment regimens among patients with MF.
Cutaneous T-cell lymphoma, ECP, ethnic skin, mycosis fungoides
Introduction Cutaneous T cell lymphoma, the most common type of skin lymphoma, has been shown to occur with increased incidence in blacks, with incidence rates ranging from 6.1 to 8.1 cases per million in whites compared with 9.0 to 10.0 cases per million in blacks (1–5). The most common variant, mycosis fungoides (MF), also occurs with increased frequency in blacks, and black race has been independently shown to be a poor prognosticator for disease outcomes (4–6). This may be attributed to several factors including more advanced disease at diagnosis, increased likelihood of progression of disease and younger age at diagnosis (4–6). In a study citing worsened outcomes in young, black women with MF, Sun et al. (4) postulated that more aggressive therapies may be necessary for black patients who present with MF given the increased likelihood of rapid progression. While there are a variety of treatment options available for treatment of MF, few have been proven to be clearly superior to others in terms of efficacy and long-term survival. It is important to note, however, that the use of some treatment modalities such as total skin electron beam radiation and extracorporeal photopheresis (ECP) is often limited to large academic centers (7,8). According to the National Cancer Institute and European
Correspondence: Ginette Hinds, MD, Department of Dermatology, Johns Hopkins Hospital, 1550 Orleans St, CRB Suite 211, Baltimore, MD 21231, USA. Tel: 410-955-2400. Fax: 410 662-7774. E-mail: [email protected]
History Received 2 July 2014 Revised 7 July 2014 Accepted 7 July 2014 Published online 5 August 2014
Organization for Research and Treatment of Cancer consensus recommendations for the treatment of MF/Se´zary syndrome, patients with stage III or IV disease with 45% Sezary cells in the peripheral blood can be treated with a wide variety of systemic therapies (7,9). These include the following: total skin electron beam radiation, interferon alpha, ECP oral bexarotene and methotrexate with preference given to those treatment modalities with which the provider and institution are most familiar (7). ECP has been shown to be well tolerated and effective at treating patients with stage III and IV disease and is frequently employed in our practice for treatment of advanced stage MF (9–12). ECP, introduced in 1987, is achieved through the use of 8-methoxysoralen infused lymphocyte-rich plasma, which is pheresed from the patient, then activated with ultraviolet-A light and filtered back into the bloodstream (10,11). ECP is thought to exert anti-clonotypic activity against malignant T-cells, which induces their apoptosis, though only a small percentage of T cells are pheresed per treatment (8,11,13,14). Of the major treatment options listed above, ECP is associated with the fewest systemic side effects which include, nausea, fever and fatigue (8,11). Studies indicate up to 50–75% improvement in MF patients treated with this modality (10,11,13). Predictors of response to ECP include relatively low Sezary count, normal CD8 count, lack of prior treatment with chemotherapy, as well as increased peripheral eosinophilia (11,12,15). Zampella & Hinds (16) noted that black patients with MF are more likely to have increased peripheral eosinophilia, which may make this treatment particularly useful for black patients.
Racial differences in the use of ECP for mycosis fungoides
DOI: 10.3109/09546634.2014.946381
In practice, several factors influence treatment decisionmaking including provider familiarity with the different treatment modalities, patient preference, side effect profile and quality of life considerations. Treatment with ECP typically requires two multi hour treatment sessions on every two weeks over a course of several months, which we believe makes this treatment option less practical for those with tenuous financial and living situations (9,11). To our knowledge, no studies have examined whether treatment rates with ECP vary across ethnic groups. We sought to determine if blacks were less likely to receive ECP and which factors may influence discrepancies in treatment decisions.
Downloaded by [University of Florida] at 20:56 05 November 2015
Methods This study was approved by the Johns Hopkins Institutional Review Board. The records of 345 patients treated at Johns Hopkins Hospital main campus outpatient clinic over a 12-year period (1999–2011) were reviewed, and data were collected on demographics, stage at presentation, treatment modalities received and overall response to treatment. Clinical documents such as clinic notes, referral letters, infusion notes and insurance information were analyzed to determine possible factors that influence rate of ECP use. Data were analyzed in R v. 2.13.0 (Vienna, Austria). Multiple imputation with five imputations was performed for missing data. Patients were staged according to NCCN guidelines for MF and further stratified based on selfidentified race (7). One Hispanic patient with stage III/IV disease was noted but not included in the study for ease of calculation; there were no Asian, Native American or persons of other races with stage III or IV disease identified in the study. No patients self-identified as being of more than one race. We used only the records of the black and white patients for sample size reasons. Patient demographic data and rates of use of ECP treatment were analyzed and assessed for significance using a two-tailed t-test. The Bonferroni correction was used for multiple comparisons. Finally, discussion of ECP as a treatment regimen was analyzed with univariate logistic regression and ECP use given discussion of it as an option was analyzed with a two-tailed t-test.
Results Characteristics of our patient group and factors related to ECP treatment are listed in Table 1. Notably, blacks in our institution present with more advanced disease and at a younger age, which is consistent with previous studies in the literature (3–6). Among those with stage III or IV disease, there was no difference in the stage of disease between blacks and whites. A total of 65 patients with stage III or IV disease were noted in our study, and a total of 46 (71%) were treated with more than three treatment modalities. Only 7 of 20 black patients (35%) compared with 30 of 45 (66%) of white patients received ECP as a part of their treatment. p Values for other treatment modalities used in our patients were also calculated across racial groups, and no difference was noted with the exception of ECP. Table 1. Patient characteristics and ECP treatment.
Number of patients Average stage at presentation Average age at presentation Stage III/IV patients ECP treatment received ECP discussed as treatment option ECP received following discussion
Black
White
p Value
109 2.64 45.31 20/109 7/20 (35%) 9/20 (45%)
213 2.35 54.75 45/213 30/45 (67%) 47/45 (82%)
50.0003 50.0003 1.000 0.029 0.007
7/9 (78%)
30/37 (81%)
0.841
267
With regards to factors influencing ECP treatment, we found that ECP was significantly less likely to be discussed as a treatment option for black patients when compared to white counterparts. However, an equal proportion of black patients and white patients who were offered ECP received treatment. Four white patients were noted to have venous access issues, two of whom eventually received ECP compared to one black patient with venous access issues who also eventually received ECP. Three white patients were noted to have insurance issues, two of whom eventually received ECP. Similarly, three black patients were noted to have insurance issues and two of these patients also later were treated with ECP. Finally, nine white patients were under the primary care or transferred to the care of an oncologist, three of whom received ECP. Seven black patients were under the primary care or transferred to the care of an oncologist, and only one of these patients received ECP.
Discussion While several studies have noted poorer outcomes for black patients with MF, few studies have attempted to examine what factors may lead to those discrepancies. In this retrospective study, we see that there is a discrepancy in the number of black patients receiving ECP and that this discrepancy may be related to the fact that blacks were less likely to be offered ECP as a treatment option. An important take away point is that when offered ECP as a treatment option, blacks and whites were equally likely to be started on this treatment regimen. We were surprised to note that insurance and venous access issues did not play any role in the decision to start ECP as these issues were only discussed in a small number of instances. The reasons behind the discrepancy in the discussion of ECP are multifactorial and may be related to a host of factors that are difficult to quantify such as the patient’s financial stability (which influences their ability to receive time intensive treatments multiple times a week), education level, overall perceived health and need for aggressive therapies as well as the influence of referring providers. In an urban setting such as Baltimore, it is possible that race could serve as proxy for such factors, particularly financial status and education level, though this is difficult to ascertain from a retrospective review alone. Clinical documentation largely provides a view of the encounter from a provider’s perspective so these patient derived factors are difficult to quantify. The discrepancy shown in the treatment options used and those discussed is not unique to MF. In 2003, the Institute of Medicine (17) published a report showing that blacks were less likely to receive equal medical treatments when compared to whites, including cancer care, even when controlled for a variety of factors such as insurance, age and place of treatment. The report suggests that subtle cultural differences, patient distrust of healthcare providers and access to healthcare are possibly patient-derived factors. Physician-derived factors include clinical uncertainty when dealing with minority patients, assumptions made about the patients (such as likelihood to adhere to prolonged treatment course) and patient attitudes may also impact physician decision making. It is important to note, however, that an important service provided by the physician is the filtering of treatment options in hopes of making the final decision easier on the patient. Accordingly, there are instances in which a physician may decide against the discussion of ECP if it is deemed to be a suboptimal treatment option due to other factors brought up during the patient encounter. Doing this may help relieve some of the burden patients are faced with when dealing with a cancer diagnosis. These factors may not be fully articulated in the written
Downloaded by [University of Florida] at 20:56 05 November 2015
268
C. Agi et al.
record and therefore are difficult to quantify during a retrospective chart review. Because ECP is rarely given as monotherapy, it is difficult to determine if lack of treatment with ECP is the major contributor to the differences we note in the overall response to treatment. However, as there were no other differences in treatment options noted with the exception of ECP in patients with equal stages of disease, it is important to further study the impact of ECP in treating patients with MF. Larger studies are needed to see if blacks respond better when ECP is added to their treatment when compared to their peers not treated with ECP. Furthermore, additional studies should be aimed at assessing patients’ assumptions about ECP and their perceived difficulties associated with treatment as well as physicians’ assumptions as these may be driving decisions regarding treatment. This is especially important in light of the fact that increased peripheral eosinophilia, more often seen in black patients with MF, has been shown to be a positive prognosticator for response to ECP (8). This study was performed at a single institution and is thus a limitation of the study. Other limitations of this study include selection bias, as Johns Hopkins is a quaternary center that frequently receives patients from local practices that have tried or declined other treatment options prior to being seen in our clinic. In addition, this study only reflects those patients who were seen and then treated at our institution within the time frame and does not account for those who may have left our facility and received treatments elsewhere. Fortunately, ensuring that physicians discuss all treatment options with patients is an issue that can be changed easily, once awareness is established. This study may shed led light on treatment disparities among patients with MF and, more importantly, offers suggestions in treatment approaches that can improve the care provided to our patients.
Declaration of interest The authors have no conflicts of interest to declare. A portion of this work was presented at the National Medical Association Annual Convention and Scientific Assembly 27–31 July 2013 in Toronto, Canada.
References 1. Bradford PT, Devesa SS, Anderson WF, Toro JR. Cutaneous lymphoma incidence patterns in the United States: a populationbased study of 3884 cases. Blood. 2009;113:5064–73. 2. Criscione VD, Weinstock MA. Incidence of cutaneous T-cell lymphoma in the United States, 1973–2002. Arch Dermatol. 2007; 143:854–9.
J Dermatolog Treat, 2015; 26(3): 266–268
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