Evaluating Beliefs Associated with Late-Stage Lung Cancer ...

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Lung cancer is an aggressive disease that is recognized as the leading cause of cancer mortality in the United States.1. Diagnosis at an advanced stage (III or ...
ORIGINAL ARTICLE

Evaluating Beliefs Associated with Late-Stage Lung Cancer Presentation in Minorities Cara Bergamo, BA,* Jenny J. Lin, MD,† Cardinale Smith, MD,‡§ Linda Lurslurchachai, MPH,† Ethan A. Halm, MD,ǁ Charles A. Powell, MD,¶ Andrew Berman, MD,# John S. Schicchi, MD,** Steven M. Keller, MD,†† Howard Leventhal, PhD,‡‡§§ and Juan P. Wisnivesky, MD†¶

Introduction: Minority patients in the United States present with later stages of lung cancer and have poorer outcomes. Cultural factors, such as beliefs regarding lung cancer and discrimination experiences, may underlie this disparity. Methods: Patients with a new diagnosis of lung cancer were recruited from four medical centers in New York City. A survey, using validated items, was conducted on the minority (black and Hispanic) and nonminority patients about their beliefs regarding lung cancer, fatalism, and medical mistrust. Univariate and logistic regression analyses were used to compare beliefs among minorities and nonminorities and to assess the association of these factors with late-stage (III and IV) presentation. Results: Of the 357 lung cancer patients, 40% were black or Hispanic. Minorities were more likely to be diagnosed with advanced-stage lung cancer (53% versus 38%, p = 0.01). Although beliefs about lung cancer etiology, symptoms, and treatment were similar between groups (p > 0.05), fatalistic views and medical mistrust were more common among minorities and among late-stage lung cancer patients (p < 0.05, for all comparisons). Adjusting for age, sex, education, and

*Doris Duke Clinical Research Fellow, UMDNJ-Robert Wood Johnson Medical School, Camden, New Jersey; †Division of General Internal Medicine, Mount Sinai School of Medicine, New York, New York; ‡Hertzberg Palliative Care Institute of Brookdale Department of Geriatrics and Palliative Medicine, Mount Sinai School of Medicine, New York, New York; §Division of Hematology and Oncology, Tisch Cancer Institute, Mount Sinai School of Medicine, New York, New York; ǁDepartment of Internal Medicine and Clinical Sciences, University of Texas Southwestern Medical Center, Dallas, Texas; ¶Division of Pulmonary and Critical Care Medicine, Mount Sinai School of Medicine, New York, New York; #Division of Pulmonary and Critical Care Medicine, UMDNJ-New Jersey Medical School, Newark, New Jersey; **Division of Pulmonary and Critical Care Medicine, Columbia University, New York, New York; ††Department of Thoracic Surgery, Montefiore Medical Center, Bronx, New York, New York; ‡‡Department of Psychology, Rutgers University, New Brunswick, New Jersey; and §§ Department of Psychology, Institute for Health, Health Care Policy and Aging Research, Rutgers University, New Brunswick, New Jersey. Disclosure: Cara Bergamo was supported by the Doris Duke Foundation for Clinical Research, and Dr. Smith was supported, in part, by a minority supplement from the National Cancer Institute (5R01CA131348-03). All the other authors declare no conflict of interest. Address for correspondence: Juan P. Wisnivesky, MD, DrPH, Department of Medicine, Mount Sinai School of Medicine, One Gustave L. Levy Place, Box 1087, New York, NY 10029. E-mail: [email protected] Copyright © 2012 by the International Association for the Study of Lung Cancer ISSN: 1556-0864/12/0801-12

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insurance, minorities had increased odds of advanced-stage lung cancer (odds ratio: 1.79; 95% confidence interval, 1.04–3.08). After controlling for fatalism and medical mistrust, the association between minority status and advanced stage at diagnosis was attenuated and no longer statistically significant (odds ratio: 1.56; 95% confidence interval, 0.84–2.87). Conclusions: Fatalism and medical mistrust are more common among minorities and may partially explain the disparities in cancer stage at diagnosis. Addressing these factors may contribute to reducing disparities in lung cancer diagnosis and outcomes. Key Words: Lung cancer, Health disparities, Cultural differences, Race and ethnicity. (J Thorac Oncol. 2013;8: 12–18)

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ung cancer is an aggressive disease that is recognized as the leading cause of cancer mortality in the United States.1 Diagnosis at an advanced stage (III or IV) usually precludes the possibility of cure and leads to poor long-term outcomes.1 It is well documented that minorities are more likely to present at later stages than nonminorities are,2,3 and partly because of this late-stage presentation, lung cancer survival among minorities is lower.4,5 Several studies have attempted to explain the reasons for these racial and ethnic disparities in lung cancer stage at presentation.3,6,7 Health care system factors, such as insurance and access to care, and patients’ sociodemographic characteristics, such as low socioeconomic status and educational achievement, have been associated with latestage lung cancer diagnosis.3,6–9 Although these fixed barriers are more prevalent among minorities, studies have shown that disparities in cancer diagnosis and outcomes persist even after controlling for these factors.3,10,11 Another possible explanation for cancer disparities could be health care provider discrimination toward minority patients, resulting in suboptimal care12; however, strong empirical evidence of provider bias in relation to lung cancer care is lacking. These findings suggest that there are other factors, likely culturally related, influencing the later lung cancer stage at diagnosis among minorities. Beliefs and attitudes toward health care and cancer, which may differ based on race and ethnicity,13–15 may explain the increased prevalence of late-stage lung cancer among

Journal of Thoracic Oncology  •  Volume 8, Number 1, January 2013

Journal of Thoracic Oncology  •  Volume 8, Number 1, January 2013

minorities. Studies have shown a relationship between minorities’ beliefs about cancer, fatalism, medical mistrust, and underuse of cancer screening.16,17 The underuse of screening services, in turn, results in later-stage cancer diagnoses among minorities.18 In addition, although the effect of culturespecific beliefs on stage at presentation has been studied in breast, colorectal, and cervical cancers, the impact of these potentially modifiable factors for lung cancer is not well documented. One study by Lathan et al.13 examined the role of beliefs on racial disparities in lung cancer outcomes and showed that blacks were more likely to expect symptoms before diagnosis and were reluctant to undergo a workup for lung cancer. However, these results were not evaluated among individuals with lung cancer. In this study, we compared beliefs and attitudes about lung cancer, fatalism, and medical mistrust among recently diagnosed lung cancer patients and evaluated the association among these beliefs, race/ethnicity, and advanced cancer stage at diagnosis.

PATIENTS AND METHODS Recently diagnosed lung cancer patients were recruited from four New York City hospitals between January 2008 and June 2011.19,20 Potential participants were identified weekly, using centralized registries maintained by the hospitals’ pathology departments or tumor registries. To access patients diagnosed at different hospitals, we contacted the lung cancer providers at these hospitals, conducted weekly screenings of oncology, radiotherapy, and pulmonary clinics, posted flyers advertising the study at treatment sites, and made regular contact with collaborating investigators serving on tumor boards. Eligibility for the study was confined to patients who were English or Spanish-speaking, aged more than or equal to 18 years and diagnosed with primary lung cancer within the previous 12 months. Patients were excluded if they had been diagnosed with a malignancy, other than nonmelanoma skin cancer, within the past 5 years. Patients were also excluded if they did not have capacity to consent or if their physician did not authorize participation. Once eligible patients were identified and informed consent obtained, all participants underwent in-person interviews in their preferred language (English or Spanish). This study was approved by the Institutional Review Boards of the four participating institutions. We collected information on participants’ sociodemographic characteristics, using validated items; individuals who self-identified as Hispanic or Latino were classified as Hispanic, regardless of race. Black or Hispanic participants were classified as minority; all others were classified as nonminority. Individuals were staged according to the latest tumor, node, metastasis criteria through chart review. Patients diagnosed with stage I or II lung cancer were classified as early-stage presentation; those diagnosed with stage III or IV lung cancer were considered late-stage. We used the theoretical framework of the self regulation model (SRM) to evaluate participants’ beliefs and attitudes toward lung cancer.21 This model proposes that patients’ actions to address symptoms or health threats of a disease are motivated by their underlying cognitive and emotional representation

Evaluating Beliefs Associated with Late-Stage LC in Minorities

of the disease and the self. There are five components to the SRM’s disease representation: identity, causes, timeline, consequences, and control. Identity refers to the interpretation of symptoms and labels attached to the disease, such as “coughing blood could be due to lung cancer.” Causal beliefs refer to patients’ understanding of the etiology of lung cancer. Timeline assesses patients’ perception of the likely progression and trajectory of disease such as “lung cancer spreads so quickly that by the time it is diagnosed it has already spread,” whereas consequences focus on the patients’ perceived impact of lung cancer. Last, the control domain refers to beliefs and expectations about the extent to which lung cancer can be controlled or cured (e.g., stress will make cancer worse). Questions pertaining to cognitive and affective illness representations along these domains were adapted from our earlier work22 and the Revised Illness Perception Questionnaire.23 Common folk beliefs about cancer, cancer treatment, and spiritual beliefs were adapted from Lannin et al.14 and Margolis et al.15 These included beliefs such as “surgery causes cancer to spread” and “praying to God can help heal cancer.” The depth of spiritual or religious beliefs was also assessed by questions such as“How important is religion in your life?” and “How much would your spiritual or religious beliefs influence your medical decisions if you were to become gravely ill?” We used the Group-Based Medical Mistrust Scale (GBMMS) to evaluate medical mistrust and discrimination experiences.24 This validated scale includes 12 items from the Cultural Mistrust Inventory, the Perceptions of Racism Scale, and medical literature discussing beliefs among medically underserved ethnic groups.25,26 The scale is divided into 3 categories: suspicion (e.g., “people of my ethnic group cannot trust doctors”), group disparities (e.g., “people of different ethnic groups receive the same kind of care”), and provider support (e.g., “doctors and health care workers sometimes hide information from patients who belong to my ethnic group”). The scale has been shown to be reliable and valid for analyzing medical mistrust among minorities.27 Patients were directed to answer the questions according to their beliefs and attitudes before lung cancer diagnosis. All survey responses related to beliefs and attitudes were recorded on a 4-point Likert scale, ranging from strongly agree to strongly disagree. Those who responded strongly agree or agree were identified as holding the specific belief. These questions and scales have been validated in both English and Spanish.24,28

Statistical Analysis We evaluated differences in sociodemographic characteristics of minority and nonminority participants using a χ2 test or t test, as appropriate. The unadjusted association between minority status and stage at diagnosis was assessed using the χ2 test. Beliefs were grouped into domains (lung cancer identity, causes, timeline and treatment, personal control, spirituality, fatalism, and medical mistrust) and a χ2 test was used to compare beliefs between nonminorities and minorities and also between participants diagnosed with early- versus latestage lung cancer. We used logistic regression analyses to assess whether minority status was associated with stage at diagnosis

Copyright © 2012 by the International Association for the Study of Lung Cancer

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Journal of Thoracic Oncology  •  Volume 8, Number 1, January 2013

Bergamo et al.

after controlling for age, sex, education, and insurance. Because of collinearity concerns, education and socioeconomic status were not included in the same model. The analysis was then repeated by adjusting for specific beliefs about fatalism and medical mistrust to determine whether these beliefs had a meditational effect on the relationship between minority status and stage at diagnosis. Selection of these beliefs was based on the distribution of patients’ responses, hypothesized importance based on the SRM and GBMMS, and results of the univariate analysis. All analyses were conducted with SPSS software (IBM, Chicago, IL) using two-tailed p values.

RESULTS A total of 1509 patients were screened for participation in the study between January 2008 and June 2011. Of those, 1053 did not meet eligibility criteria. Among the remaining 452 eligible patients, 95 (21%) were unwilling to participate and 357 (79%) were enrolled into the study. Approximately 10% (n = 36) of these patients had small-cell cancer or were unstaged at the time of this analysis; their responses were only included in the analysis comparing beliefs between nonminorities and minorities. Overall, 142 participants (40%) belonged to racial and ethnic minority groups (71 blacks, 71 Hispanics); their sociodemographic characteristics are reported in Table 1. There were no significant differences in age, sex, employment status, or smoking history between the minorities and the nonminorities (p > 0.05 for all comparisons). Minorities were more likely to have an income less than $15,000 (p < 0.001), to have less than a high-school degree (p < 0.001), to be non-English speakers (p = 0.001) or not very fluent in English (p < 0.001), and to report affiliation with Christian faith (p < 0.001). Minorities were more likely to be diagnosed with advanced-stage lung cancer (53% versus 38%, p = 0.01).

Unadjusted Association of Health Beliefs with Advanced Stage Diagnosis and Minority Status Some beliefs within the identity, causes, and timeline domains were differently distributed between participants with early- versus advanced-stage cancer. Late-stage patients were more likely to believe that “stress can cause lung cancer” (p = 0.01), that “lung cancer spreads so quickly that by the time it is diagnosed it has already spread” (p = 0.04) and that “if you are stressed and worry too much your cancer will get worse” (p = 0.01). The remaining self-regulation beliefs were similar among early- and advanced-stage participants (p > 0.05; Table 2). Participants who were diagnosed with late-stage cancer were more likely to hold beliefs about fatalism and medical mistrust. The belief that “if bad things happen, they were meant to be” was significantly associated with diagnosis at an advanced stage (p = 0.03). Those diagnosed with late-stage were also more likely to agree with beliefs in the suspicion domain of the GBMMS, such as “my ethnic group cannot trust doctors” (p < 0.001) and “my ethnic group should not confide in doctors or health care workers because it will be used against them” (p = 0.01). Conversely, they were less likely to agree with the belief, “doctors have my best interest in mind,” in the provider support domain (p = 0.01).

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TABLE 1.  Baseline Characteristics of Study Participants Characteristic Age, yr, mean ±SD Female, n (%) Income, n (%)   $15,001 Don’t know/not reported Education, n (%)   Did not complete high school   High-school graduate or GED   Some college, no degree   College degree/ professional training Employment status, n (%)  Employed  Unemployed  Retired  Disability  Other Native language, n (%)  English  Other English fluency, n (%) Religious affiliation, n (%)  Christian  Jewish  Other  None Insurance, n (%)   Private/Health Maintenance Organization  Medicare  Medicaid   Self pay/no insurance   Don’t know/no answer Smoking history, n (%) Stage, n (%)   Early (I–II)   Late (III–IV)

Nonminority n=215

Minoritya n=142

66.0 ± 10.9 108 (50)

64.5 ± 10.1 78 (55)

25 (12) 113 (53) 77 (36)

46 (32) 36 (25) 60 (42)

27 (14) 50 (25)

58 (44) 32 (24)

34 (17) 89 (45)

27 (21) 15 (11)

63 (29) 22 (10) 102 (47) 17 (8) 11 (5)

26 (18) 18 (13) 73 (51) 16 (11) 9 (6)

185 (86) 30 (14) 208 (97)

102 (72) 39 (28) 111 (78)

127 (59) 46 (21) 9 (4) 33 (17)

125 (88) 2 (1) 4 (3) 10 (7)

142 (66)

57 (40)

50 (23) 10 (5) 2 (1) 11 (5) 192 (89)

49 (35) 21 (15) 2 (1) 13 (9) 126 (89)

120 (62) 73 (38)

61 (47) 69 (53)

p 0.19 0.39