| | Treatment Disparities for Disabled Medicare Beneficiaries With Stage I Non-Small Cell Lung CancerAbstract Iezzoni LI, Ngo LH, Li D, Roetzheim RG, Drews RE, McCarthy EP. Treatment disparities for disabled Medicare beneficiaries with stage I non-small cell lung cancer. ObjectiveTo compare initial treatment and survival of nonelderly adults with and without disabilities newly diagnosed with non-small cell lung cancer. DesignRetrospective analyses; population-based cohorts. SettingEleven Surveillance, Epidemiology, and End Results cancer registries. ParticipantsPersons with disability Medicare entitlement (n=1016) and nondisabled persons (n=8425) ages 21 to 64 years when diagnosed with stage I, pathologically confirmed, first primary non-small cell lung cancer between January 1, 1988, and December 31, 1999. InterventionsNot applicable. Main Outcome MeasuresInitial cancer treatments (surgery, radiotherapy), survival (through December 31, 2001). Multivariable logistic regression and Cox proportional hazards regression estimated adjusted associations of disability status with treatments and survival. ResultsPersons with disabilities were much more likely to be male, non-Hispanic black, and not currently married. Although 82.2% of nondisabled persons had surgery, 68.5% of disabled persons received operations. Adjusted relative risks (RRs) of receiving surgery were especially low for persons with respiratory disabilities (adjusted RR=.76; 95% confidence interval [CI], .67–.85), nervous system conditions (adjusted RR=.86; 95% CI, .76–.98), and mental health and/or mental retardation disorders (adjusted RR=.92; 95% CI, .86–.99). Persons with disabilities had significantly higher cancer-specific mortality rates (hazard ratio [HR]=1.37; 95% CI, 1.24–1.51) than persons without disabilities. Observed differences in cancer mortality persisted after adjusting for demographic and tumor characteristics (adjusted relative HR=1.23; 95% CI, 1.10–1.39). Further adjustment for surgery use eliminated statistically significant differences in cancer mortality between persons with and without disabilities across disabling conditions. ConclusionsPersons with disabilities were much less likely than nondisabled Medicare beneficiaries to receive surgery; statistically significant cancer-specific mortality differences disappeared after accounting for these treatment differences. Future research must explore reasons for these findings and whether survival of disabled Medicare beneficiaries with early-stage, non-small cell lung cancer could improve if surgical treatment disparities were eliminated. DESPITE RECENT DECLINES in overall incidence, lung malignancies remain the leading cause of cancer deaths in the United States, with an estimated 174,470 new cases and 162,460 deaths in 2006.1 Broad subpopulations of persons show different patterns for the most common histologic type, non-small cell lung cancer, which has a poor prognosis. In 2003, 5-year period survival rates after non-small cell lung cancer diagnoses were 14% for all men and 20% for all women but 11.3% for black men and 16.3% for black women.1 Such disparities in outcomes raise several questions, including concerns about possible disparities in care. Surgery is the most definitive treatment for early-stage, non-small cell lung cancer.2, 3 Two studies4, 5 examined surgery rates by race for non-small cell lung cancer, both finding that black patients received surgery significantly less often than white persons. Black and white patients who received surgery had comparable survivals,4, 5 adjusting for surgery largely explained survival differences.4 Both studies used data from Surveillance, Epidemiology, and End Results (SEER) tumor registries merged with Medicare claims and included only persons ages 65 years and older. This exclusion eliminated the approximately 15% of younger beneficiaries who receive Medicare through disability: persons who have received cash benefits from Social Security Disability Insurance (SSDI) for at least 24 months. These lung cancer studies4, 5 thus join other important investigations using merged SEER-Medicare data to discover significant treatment and outcome disparities by race and ethnicity6, 7, 8, 9—always first eliminating disabled Medicare beneficiaries under age 65 years. Persons with disabilities are recognized as vulnerable to receiving substandard care.10, 11, 12, 13 Healthy People 2010,10 which sets national health priorities, asserts that erroneous assumptions about persons with disabilities contribute to disparities in health services they receive. In 2005, the U.S. Surgeon General urged studies of health care disparities to include persons with disabilities.11 Our study used merged SEER-Medicare data to examine initial treatments and survival for persons under age 65 years when diagnosed with non-small cell lung cancer. We focused on stage I cancers, where treatment decisions are clearer than for more advanced disease. We hypothesized that disabled Medicare beneficiaries would have lower surgery rates and higher mortality rates than other patients. Subanalyses used Social Security Administration (SSA) cause of disability information to determine whether findings varied across subgroups with different types of underlying disabling conditions. Methods  Data Sources SEER data include 11 population-based tumor registries, representing 14% of the U.S. population.14 SEER gathers information on all incident cases of cancer diagnosed within geographically defined areas including 5 states (Connecticut, Hawaii, Iowa, Utah, New Mexico) and 6 metropolitan areas (Atlanta, Detroit, San Francisco/Oakland, Seattle/Puget Sound, Los Angeles county, San Jose/Monterey). The last 2 registries joined SEER in 1992. The Centers for Medicare & Medicaid Services (CMS) links data from SEER-11 registries with Medicare enrollment and utilization information for Medicare beneficiaries diagnosed with cancer.14, 15 SEER registries identify cases primarily by reviewing hospital pathology reports and discharge diagnoses, achieving 98% case ascertainment. SEER collects information on each patient’s demographic and tumor characteristics at diagnosis, including primary tumor site, stage, size, histology, and grade. SEER records initial treatment (within 4 months of diagnosis from 1973 to 1998, within 12 months of diagnosis after 1998) and generally captures all surgery and radiation therapy.16, 17 For persons without surgery, SEER categorizes reasons for no surgery (eg, surgery not recommended, contraindications due to other conditions, patient refused). Registries collect chemotherapy information but do not release it because of concerns about incomplete data. SEER tracks vital status annually, obtaining underlying cause of death from death certificates. CMS uses different algorithms to match SEER with Medicare data for beneficiaries under and over age 65 years. For persons over the age of 65 years, 94% of cases match.15 For persons under age 65 years, match rates are unknown but are probably considerably lower because a more stringent algorithm accepts only exact matches on Social Security number. With this strict requirement, we feel confident of the accuracy of matches for those persons under age 65 years who did match, but some unknown number of persons who did have SSDI/Medicare may not have been identified. We analyzed SEER Public Use18 and Patient Entitlement and Diagnosis Summary files from the SEER-Medicare database, which contains demographic and annual enrollment information through 2001 from Medicare denominator files for program beneficiaries. We used Medicare enrollment dates extracted from the Medicare Enrollment Database to identify persons under age 65 years who qualified for SSDI, were on Medicare, and thus were disabled when diagnosed with non-small cell lung cancer (ie, SSDI/Medicare). SSA aggregate data indicate that neoplasms caused 9.8% of new SSDI disability determinations in 2002.19 As described elsewhere, we constructed an algorithm to identify and eliminate people who likely applied for SSDI and thus received Medicare because of cancer.20 We drew our nondisabled cases (ie, persons without SSDI/Medicare) from the SEER public use file. SSDI is available to all working-age adults, regardless of their financial resources, who qualify as “insured” based on quarters of employee contributions to Social Security’s trust fund (in contrast, Supplemental Security Income [SSI] is the means-tested, income support program for disabled persons who are poor). To determine whether these people meet disability criteria, SSA requires specific medical evidence and diagnostic testing, physical examination, or other clinical data documenting disability expected to last 12 or more months. When people qualify for SSDI, SSA records their primary impairment or the reason that persons were “medically determined” disabled. SSA does not release impairment codes to nongovernmental investigators, although federal investigators have productively used these codes in research studies.21, 22 To explore whether specific disabilities had different associations with treatment and survival, officials at SSA, CMS, and the National Cancer Institute asked their data processing contractor to merge SSA impairment codes and diagnosis groups with our final analytic file, which we provided to them. To protect SEER registry confidentiality, we did not have access to these merged files but instead worked through the government contractor to analyze the SSA information. Study Sample This retrospective cohort study involved persons ages 21 to 64 years diagnosed with stage I first primary non-small cell lung cancer between January 1, 1988, and December 31, 1999, residing in SEER-11 coverage areas (N=9500). We included persons with tumors that were classified as stage I by the American Joint Committee on Cancer criteria (ie, no regional or distant metastases). We excluded 59 patients with unknown month of diagnosis or whose cancer was reported at autopsy, was reported on death certificate, or was diagnosed without pathologic tissue confirmation. Our final study sample included 9441 persons; 1016 (10.8%) had SSDI/Medicare. For analyses using SSA disability determination information, we excluded 38 persons with SSDI/Medicare who did not link with SSA data. Disability Diagnosis Groups After merging SSA data with our analytic file, the government contractor produced frequency distributions for each impairment code (SSA’s most granular listing of conditions) and diagnosis group (SSA’s groupings of impairment codes). Very few cases fell into individual impairment codes; many diagnosis groups also had too few cases for separate analysis. Of the 978 merged cases with SSDI/Medicare, 222 (22.7%) had codes that provided limited clinical insight (ie, 59 people with relatively rare, specific, but clinically heterogeneous conditions that we grouped as miscellaneous and 163 with unknown conditions). To increase sample sizes for statistical analyses, we combined some diagnosis groups. Here we present data for the 5 broad conditions with sufficient numbers for analysis (table 1 footnotes). Non-Small Cell Lung Cancer Treatment Depending on tumor size, histology, and location, surgery can provide definitive treatment for non-small cell lung cancer.2, 3 Radiotherapy can potentially cure persons with resectable tumors who have medical contraindications to surgery.23 We defined initial treatment using only SEER information because Medicare claims, which could have identified chemotherapy, were available only for persons with SSDI/Medicare. Adjuvant cisplatin-based combination chemotherapy may prolong survival for surgical patients with stage IB disease,24 although chemotherapy use remains controversial. As have others,4 we identified surgical resection with curative intent as follows: radical or partial pneumonectomy, lobectomy, bilobectomy, sleeve resection, segmentectomy, wedge resection, and local resection. All these surgeries were explicitly for lung cancer. As noted above, for patients without surgery, SEER records indicate whether surgery was not recommended or contraindicated. We also identified whether patients received radiotherapy. Survival We examined survival (all-cause and cancer-specific) after diagnosis. We measured survival time as number of days from diagnosis until death or December 31, 2001, whichever came first. For all-cause mortality, we censored observations of persons alive when follow-up ended (n=3965). We also studied cancer-specific deaths, censoring observations of persons alive when follow-up ended or who died from causes other than lung cancer (n=5758). Analysis All statistical analyses used SAS.a We conducted the analyses that used the SEER-Medicare data only. For analyses using merged SEER-Medicare-SSA data, we supplied SAS code to the government contractor, who ran analyses for us. After internal quality assurance audits, the contractor returned aggregated results (ie, we did not receive information on individual cases). Because all analyses used deidentified data, our institutional review boards exempted this study from review. Using bivariable analyses, we compared demographic and tumor characteristics at diagnosis by SSDI/Medicare (disability) status. We conducted separate multivariable logistic regression to examine adjusted associations between disability status and each treatment (surgery, radiotherapy) after adjusting for age at diagnosis (continuous), sex, race and ethnicity (non-Hispanic white, non-Hispanic black, Hispanic, Asian American/Pacific Islander, other), marital status at diagnosis (married, widowed, never married, other), SEER tumor registry, year of diagnosis, tumor size (continuous, in centimeters), and grade (well differentiated, moderately differentiated, poorly and/or undifferentiated). The standard demographic characteristics could affect treatment and longevity risks, preferences for treatment, and possibly other practice pattern effects (eg, racial and ethnic differences in treatments).4, 5 Adjustments for SEER tumor registry aim to account for possible geographic differences in practice styles; adjustment for year of diagnosis accounts for possible changes over time in care (although surgery has remained the definitive therapy over the years studied). Tumor characteristics affect longevity and certain treatment choices. In each model, we compared persons with and without SSDI/Medicare. We converted odds ratios to relative risks (RRs)25 with 95% confidence intervals (CIs) for each treatment outcome. We conducted multivariable Cox proportional hazards regression to estimate adjusted relative hazard ratios (HRs) for each mortality outcome (all-cause, cancer-specific). We fit 4 separate proportional hazards models for each mortality outcome. Model 1 estimated the unadjusted relative HR comparing persons with and without SSDI/Medicare. Model 2 adjusted this relative HR for age at diagnosis (continuous), sex, race and ethnicity, marital status, tumor registry, year of diagnosis, tumor size (continuous), and tumor grade. Model 3 further adjusted the relative HR for receipt of surgery. Finally, model 4 further adjusted the relative HR for receipt of radiotherapy. We present adjusted relative HRs and 95% CIs: adjusted relative HRs greater or less than 1.00 indicate longer survival times for disabled compared with nondisabled persons; adjusted relative HRs greater or less than 1.00 indicate shorter survival times. Results  Persons with disabilities (SSDI/Medicare) differed importantly in certain demographic characteristics from others diagnosed with non-small cell lung cancer under age 65 years (see table 1). Despite similar average age at diagnosis, they were much more likely to be male, non-Hispanic black, and currently unmarried. Tumor characteristics between persons with and without SSDI/Medicare did not show important differences. Table 1 also shows basic demographic and tumor attributes for persons within the 5 broad disability categories. Although age was comparable across disabilities, distributions across sex, race and ethnicity, marital status, and tumor characteristics differed. For instance, 21.3% of those with respiratory system disorders were non-Hispanic black, compared with 12.2% of persons with nervous system conditions and injuries. Only 8.4% of persons with disabling circulatory system disorders never married, compared with 27.7% of persons disabled by mental health disorders and mental retardation. Just 7.6% of persons disabled by musculoskeletal and connective tissue conditions had tumors greater than 5cm at diagnosis, compared with 12.2% with neurologic conditions and injuries. Treatment Differences Rates of surgery and radiotherapy differed between persons with versus without SSDI/Medicare (table 2). Although 82.2% of nondisabled persons had surgery, only 68.5% of persons with disabilities received operations. In contrast, 25.4% of persons with SSDI/Medicare had radiotherapy, compared with 17.6% of persons without disabilities. Among those who did not undergo surgery, surgery was not recommended for 51.6% of persons with disabilities and for 50.1% of nondisabled persons; 15.6% of persons with disabilities had contraindications due to other conditions, as did 12.3% of nondisabled persons; and 6.9% of those with disabilities refused surgery, as did 5.6% of those without disabilities. Combined, all these factors do not explain the 13.7% difference in surgery rates observed between the 2 groups. Adjusting for demographic and tumor characteristics also did not explain the significantly lower use of surgery and higher use of radiotherapy among persons with disabilities. Surgical and radiotherapy rates varied substantially across disability groups, with persons with respiratory disorders having the lowest surgery rate (48.5%) and the highest radiotherapy rate (34.6%). Surgery was not recommended for 67.1% and contraindicated because of other conditions for 12.7% of those with respiratory disorders who did not receive surgery; this was the only group that differed substantially in surgical recommendations from those without disabilities. In contrast, persons with musculoskeletal disorders had the highest surgical rate (79.2%) and the lowest radiotherapy rate (19.8%). After adjustment, persons with nervous system disorders (adjusted RR=.86; 95% CI, .76–.98), mental health/mental retardation disorders (adjusted RR=.92; 95% CI, .86–.99), and respiratory disorders (adjusted RR=.79; 95% CI, .67–.85) continued to have significantly lower surgical rates than persons without disabilities. Persons with the latter 2 conditions also had significantly higher use of radiotherapy. Survival Differences Differences in rates of surgery appear to explain the significantly higher cancer-specific mortality observed for persons with versus without disabilities (table 3). Persons with disabilities had significantly higher cancer-specific mortality rates (adjusted relative HR=1.23; 95% CI, 1.10–1.39) after adjusting for demographic and tumor characteristics. However, adjustment for receipt of surgery eliminated statistically significant differences (adjusted relative HR=1.08; 95% CI, 0.96–1.21). Further adjustment for receipt of radiotherapy did not change the relative hazard ratio appreciably. A similar pattern occurred within all disability categories: adjusting for use of surgery eliminated statistically significant differences observed in cancer-specific mortality, even for persons with respiratory disabilities. All-cause mortality rates, however, remained significantly higher for persons with versus without disabilities, even after adjusting for demographic and tumor characteristics, surgery, and radiotherapy (see table 3). All-cause mortality rates also remained significantly higher for persons within 3 of the 5 disability categories: mental health/mental retardation disorders; circulatory system disorders; and respiratory system disorders. Discussion  Persons with disabilities (SSDI/Medicare) were much less likely than other adults under age 65 years to receive surgery when diagnosed with stage I non-small cell lung cancer, and they were much more likely to die of their malignancy. Previous work found that adjusting for treatment differences explained survival advantages of white compared with black persons with non-small cell lung cancer.4 In our analyses, statistically significant cancer-specific mortality differences also disappeared, even for disability groups (eg, respiratory conditions) with relatively high mortality differentials. This suggests that disabled Medicare beneficiaries with early-stage, non-small cell lung cancer could possibly have improved survival if surgical treatment disparities were eliminated. Obviously, persons with significant physiologic and functional impairments are poor surgical candidates,26 and national guidelines consider cardiopulmonary reserve in recommending surgery.2 SEER data indicated why surgery did not occur (eg, not recommended, contraindications); because SEER does not record either disability status or health insurance status (eg, Medicare), these factors should not bias these assessments recorded by SEER registries. Across all patients, we found no important differences in lack of recommendations or contraindications to surgery for persons with versus without disabilities, although surgery not being recommended likely explained why slightly less than half of persons with respiratory disabilities had operations. Persons with disabilities with especially low surgery rates had substantially higher use of radiotherapy, suggesting potential substitution of this less invasive treatment. However, accounting for radiotherapy use did not affect survival, whereas, even for persons with respiratory disabilities, adjusting for surgery use eliminated significant survival differences. Relatively low rates of surgery among persons with mental health and/or mental retardation disorders were noteworthy, as were their high cancer-specific and all-cause mortality rates. Numerically dominated by persons with mental health conditions, this population apparently carries high physiologic risks. Other studies27, 28, 29 show that persons with major mental illness have high rates of chronic conditions, such as diabetes, respiratory illnesses, and cardiovascular disease, than other persons. They also have higher rates of smoking, obesity, physical inactivity, substance abuse, and other risky health behaviors.30, 31, 32, 33, 34, 35 These conditions could certainly contribute to mortality risks, but our data could not account for them. Our database also did not contain clinical information that might independently predict poor lung cancer survival, such as pulmonary function, smoking history, and comorbid illness. Relatively little is known clinically about persons under age 65 years who qualify for Medicare through SSDI. According to the Medicare Current Beneficiary Survey, 28.4% of beneficiaries under age 65 years report poor health, compared with 5.3% of those ages 65 to 74 years.36 Although 35.6% of younger beneficiaries currently smoke, only 14.5% of those ages 65 to 74 years do. Medicare beneficiaries under age 65 years also have fewer socioeconomic advantages than older beneficiaries. For instance, 39.2% of beneficiaries under age 65 years have annual incomes below $10,000, compared with 14.6% of persons ages 65 to 74 years. One might speculate that persons with SSDI/Medicare have higher burden of illness. Despite this, statistically significant mortality disadvantages of persons with disabilities decreased after accounting for demographic and tumor characteristics and disappeared after controlling for surgery. Study Limitations This study has other important limitations relating to the database. The SEER public use file does not contain information on adjuvant chemotherapy, although this treatment remains controversial. Although SEER data indicate whether tumors had pathologic tissue confirmation, they do not report whether the staging itself was pathologically confirmed. One study using Medicare procedure codes found that black lung cancer patients age 65 years and older were less likely to receive invasive staging procedures than whites.5 However, another study found high agreement between clinical and pathologic stage for persons with stage IA-IB disease.37 Although the SSA data provided useful insight into underlying disabling conditions, small numbers of cases and clinically imprecise categories complicated this effort. SEER does not provide information on patients’ treatment preferences, their physicians, or the health care system where they receive their care. Finally, given the high population prevalence of disability in the United States, even among persons under age 65 years,10, 11 many persons in the non-SSDI population likely also had various disabilities. Our findings may not generalize to persons with disabilities who do not apply or qualify for SSDI and Medicare, for whatever reason. In particular, the data do not identify persons receiving only SSI, the income support program for persons with disabilities who are poor or have not paid sufficient payroll taxes. Impoverished SSI recipients and low income or uninsured persons with disabilities who have not yet applied for disability benefits face financial barriers to accessing health care. Medical indigence may heighten risks of poorer general health and reduce survival.38, 39 Despite these limitations, our study raises questions about treatment of disabled Medicare beneficiaries under age 65 years who develop stage I non-small cell lung cancer. Studies using similar methods and data for older Medicare beneficiaries found that adjusting for treatment differences explained disparate mortality rates by race: our study is the first to highlight similar conclusions for a large population of persons with disabilities. Thus, our study offers an early view of potential treatment and outcome disparities for people with disabilities—calling for future research to understand these findings just as has occurred over the last decade in investigations of racial and ethnic disparities. Conclusions  Clearly, future research must explore reasons for treatment and outcome disparities for disabled Medicare beneficiaries who develop non-small cell lung cancer. The role of comorbid conditions, compromised physiologic reserves, and patient preferences present clear research targets. Future research, therefore, must gather more detailed information, especially including details about patients’ tumors, comorbidities, and functional statuses, as well as about their treatment preferences, therapeutic options offered to them by physicians, and other factors that might affect treatment choices. One particularly troubling possibility, albeit difficult to assess, is that clinicians do not offer persons with disabilities aggressive therapy because of persistent and perhaps unconscious stigmatization of disabling conditions. Some clinicians hold problematic views of disability and make clinical decisions based on these perceptions, justifying their actions based on their personal sense that patients have poor quality of life.40, 41, 42 Disabilities can complicate patient-physician communication on many levels.13, 43, 44 Medicare beneficiaries with disabilities report less satisfaction with communication with their physicians than do nondisabled persons.45 Therefore, research must consider not only clinical contributors to treatment disparities for persons with disabilities but also attitudes and perceptions of both physicians and patients. Supplier Acknowledgments  This study used the linked SEER-Medicare database. The interpretation and reporting of these data are the sole responsibility of the authors. We acknowledge the efforts of several groups responsible for the creation and dissemination of the Linked Database, including the Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute; the Office of Information Services and the Office of Research, Development, and Information, Centers for Medicare & Medicaid Services; Information Management Services Inc; and the SEER Program Tumor Registries. This research involved merging SSA disability determination data with the SEER-Medicare files. We are grateful to Joan Warren, PhD, from NCI, Gerald F. Riley, MSPH, from CMS, and Joel Packman from SSA for supporting this effort. We also thank staff at CHD Research Associates and Fu Associates, particularly LeAnn Weaver and Celia Hsu Dahlman, MA, for their meticulous assistance in data analysis. References  1. 1Ries LA, Harkins D, Krapcho M, et al. 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a Division of General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Boston, MA b Division of Hematology and Oncology, Beth Israel Deaconess Medical Center, Boston, MA c Institute for Health Policy, Massachusetts General Hospital, Boston, MA d Department of Family Medicine and H. Lee Moffitt Cancer Center and Research Institute, Tampa, FL. Reprint requests to Lisa I. Iezzoni, MD, Institute for Health Policy, Massachusetts General Hospital, 50 Staniford St, Rm 901, Boston, MA 02114
Supported by the National Cancer Institute (grant no. R01 CA100029). No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated. PII: S0003-9993(07)01852-7 doi:10.1016/j.apmr.2007.09.042 © 2008 American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved. | |
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