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1.  Access to Preventive Health Care for Cancer Survivors 
Background
Access to healthcare, particularly effective primary and secondary preventive care, is critical for cancer survivors, in order to minimize the adverse sequelae of cancer and its treatment.
Purpose
The goal of the study was to evaluate the association between cancer survivorship and access to primary and preventive health care.
Methods
Cancer survivors (n=4960) and individuals without a cancer history (n=64,431) aged ≥18 years, from the 2008–2010 Medical Expenditure Panel Survey (MEPS), were evaluated. Multiple measures of access and preventive services use were compared. The association between cancer survivorship and access and preventive services was evaluated with multivariate logistic regression models, stratified by age group (18–64 years and ≥65 years), controlling for the effects of age, gender, race/ethnicity, education, marital status, and comorbidities. Data were analyzed in 2013.
Results
Cancer survivors aged ≥65 years had equivalent or greater access and preventive services use than individuals without a cancer history, in adjusted analyses. However, among those aged 18–64 years with private health insurance, cancer survivors were more likely than other individuals to have a usual source of care and to use preventive services, whereas uninsured or publicly insured cancer survivors were generally less likely to have a usual source of care and to use preventive services than were uninsured or publicly insured adults without a cancer history.
Conclusions
Although access and preventive care use in cancer survivors is generally equivalent or greater compared to that of other individuals, disparities for uninsured and publicly insured cancer survivors aged 18–64 years suggest that improvements in survivor care are needed.
doi:10.1016/j.amepre.2013.04.021
PMCID: PMC3804250  PMID: 23953357
2.  Effect of insurance status on postacute care among working age stroke survivors 
Neurology  2012;78(20):1590-1595.
Objective:
Utilization of postacute care is associated with improved poststroke outcomes. However, more than 20% of American adults under age 65 are uninsured. We sought to determine whether insurance status is associated with utilization and intensity of institutional postacute care among working age stroke survivors.
Methods:
A retrospective cross-sectional study of ischemic stroke survivors under age 65 from the 2004–2006 Nationwide Inpatient Sample was conducted. Hierarchical logistic regression models controlling for patient and hospital-level factors were used. The primary outcome was utilization of any institutional postacute care (inpatient rehabilitation or skilled nursing facilities) following hospital admission for ischemic stroke. Intensity of rehabilitation was explored by comparing utilization of inpatient rehabilitation facilities and skilled nursing facilities.
Results:
Of the 33,917 working age stroke survivors, 19.3% were uninsured, 19.8% were Medicaid enrollees, and 22.8% were discharged to institutional postacute care. Compared to those privately insured, uninsured stroke survivors were less likely (adjusted odds ratio [AOR] 0.53, 95% confidence interval [CI] 0.47–0.59) while stroke survivors with Medicaid were more likely to utilize any institutional postacute care (AOR = 1.40, 95% CI 1.27–1.54). Among stroke survivors who utilized institutional postacute care, uninsured (AOR = 0.48, 95% CI 0.36–0.64) and Medicaid stroke survivors (AOR = 0.27, 95% CI 0.23–0.33) were less likely to utilize an inpatient rehabilitation facility than a skilled nursing facility compared to privately insured stroke survivors.
Conclusions:
Insurance status among working age acute stroke survivors is independently associated with utilization and intensity of institutional postacute care. This may explain differences in poststroke outcomes among uninsured and Medicaid stroke survivors compared to the privately insured.
doi:10.1212/WNL.0b013e3182563bf5
PMCID: PMC3348849  PMID: 22551730
3.  Unemployment among Adult Survivors of Childhood Cancer: A report from the Childhood Cancer Survivors Study 
Medical care  2010;48(11):1015-1025.
Background
Adult childhood cancer survivors report high levels of unemployment although it is unknown whether this is due to health or employability limitations.
Objectives
We examined two employment outcomes from 2002–2005 in the Childhood Cancer Survivor Study (CCSS): 1. health-related unemployment and 2. unemployed but seeking work. We compared survivors to a nearest-age CCSS sibling cohort and examined demographic and treatment-related risk groups for each outcome.
Methods
We studied 6339 survivors and 2280 siblings aged ≥25 years excluding those unemployed by choice. Multivariable generalized linear models evaluated whether survivors were more likely to be unemployed than siblings and whether certain survivors were at a higher risk for unemployment.
Results
Survivors (10.4%) reported health-related unemployment more often than siblings (1.8%; Relative Risk [RR] 6.07, 95% Confidence Interval [CI] 4.32–8.53). Survivors (5.0%) were more likely to report being unemployed but seeking work than siblings (2.7%; RR 1.90, 95% CI 1.43–2.54). Health-related unemployment was more common in female survivors than males (Odds Ratio [OR] 1.73, 95% CI 1.43–2.08). Cranial radiotherapy doses ≥25 Gy were associated with higher odds of unemployment (health-related: OR 3.47, 95% CI 2.54–4.74; seeking work: OR 1.77, 95% CI 1.15–2.71). Unemployed survivors reported higher levels of poor physical functioning than employed survivors, and had lower education and income and were more likely to be publicly insured than unemployed siblings.
Conclusions
Childhood cancer survivors have higher levels of unemployment due to health or being between jobs. High-risk survivors may need vocational assistance.
doi:10.1097/MLR.0b013e3181eaf880
PMCID: PMC3428202  PMID: 20940653
4.  Neurocognitive functioning and health-related behaviors in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study 
SUMMARY
Background
Positive health-related behaviors are essential for the future wellbeing of childhood cancer survivors, though relatively few maintain healthy behaviors into adulthood.
Methods
Neurocognitive function and emotional distress were examined in 6,440 adult survivors from the Childhood Cancer Survivor Study, and used to predict rates of expected health-related behaviors. Covariates included cancer diagnosis, age, sex, body mass index, insurance status, income, and antidepressant medication use, and multivariable models were constructed adjusting for these factors.
Findings
In multivariable regression models, survivors with neurocognitive problems in task efficiency (RR=0.77, 95% CI=0.72–0.84) were less likely to meet the Centers for Disease Control guidelines for weekly physical activity. Survivors with neurocognitive impairment were more likely to engage in general survivor care (RR=1.20, 95% CI=1.10–1.30), and less likely to engage in dental care (RR=0.92, 95% CI=0.88–0.97). Obese survivors were less likely to report receiving a bone density exam (RR=0.67, 95% CI=0.54–0.82), a mammogram (RR=0.71, 95% CI=0.57–0.89), and a skin exam (RR=0.78, 95% CI = 0.68–0.89). Survivors reporting somatization, i.e. vague physical symptoms associated with anxiety, were more likely to report receiving echocardiograms (RR=1.53, 95% CI = 1.32–1.77).
Interpretation
These results support the link between neurocognitive and emotional problems and health-related behaviors in adult survivors of childhood cancer. Monitoring neurocognitive and emotional outcomes may help to identify survivors at risk for poor adherence to prescribed health behaviors and health screening exams.
doi:10.1016/j.ejca.2011.03.001
PMCID: PMC3103640  PMID: 21458986
5.  Employer-Sponsored Health Insurance Coverage Limitations: Results from the Childhood Cancer Survivor Study 
Purpose
The Affordable Care Act (ACA) will expand health insurance options for cancer survivors in the United States. It is unclear how this legislation will affect their access to employer-sponsored health insurance (ESI). We describe the health insurance experiences for survivors of childhood cancer with and without ESI.
Methods
We conducted a series of qualitative interviews with 32 adult survivors from the Childhood Cancer Survivor Study to assess their employment-related concerns and decisions regarding health insurance coverage. Interviews were performed from August to December 2009 and were recorded, transcribed, and content analyzed using NVivo 8.
Results
Uninsured survivors described ongoing employment limitations, such as being employed at part-time capacity, which affected their access to ESI coverage. These survivors acknowledged they could not afford insurance without employer support. Survivors on ESI had previously been denied health insurance due to their pre-existing health conditions until they obtained coverage through an employer. Survivors feared losing their ESI coverage, which created a disincentive to making career transitions. Others reported worries about insurance rescission if their cancer history was discovered. Survivors on ESI reported financial barriers in their ability to pay for health care.
Conclusions
Childhood cancer survivors face barriers to obtaining employer-sponsored health insurance. While Affordable Care Act provisions may mitigate insurance barriers for cancer survivors, many will still face cost barriers to affording health care without employer support.
doi:10.1007/s00520-012-1523-7
PMCID: PMC3887442  PMID: 22717916
Employer-sponsored health insurance; childhood cancer survivors; Affordable Care Act; Insurance reform
6.  The Association Between Insurance Status and Emergency Department Disposition of Injured California Children 
Objectives
This study examined the relationship between insurance status and emergency department (ED) disposition of injured California children.
Methods
Multivariate regression models were built using data obtained from the 2005 through 2009 California Office of Statewide Health Planning and Development (OSHPD) datasets for all ED visits by injured children younger than 19 years of age.
Results
Of 3,519,530 injury-related ED visits, 52% were insured by private, and 36% were insured by public insurance, while 11% of visits were not insured. After adjustment for injury characteristics and demographic variables, publicly insured children had a higher likelihood of admission for mild, moderate, and severe injuries compared to privately insured children (mild injury adjusted odds ratio [AOR] = 1.36; 95% confidence interval [CI] = 1.34 to 1.39; moderate and severe injury AOR = 1.34; 95% CI = 1.28 to 1.41). However, uninsured children were less likely to be admitted for mild, moderate, and severe injuries compared to privately insured children (mild injury: AOR = 0.63; 95% CI = 0.61 to 0.66; moderate and severe injury: AOR = 0.50; 95% CI = 0.46 to 0.55). While publicly insured children with moderate and severe injuries were as likely as privately insured children to experience an ED death (AOR = 0.91; 95% CI = 0.70 to 1.18), uninsured children with moderate and severe injuries were more likely to die in the ED compared to privately insured children (AOR = 3.11; 95% CI = 2.38 to 4.06).
Conclusions
Privately insured, publicly insured, and uninsured injured children have disparate patterns of ED disposition. Policy and clinical efforts are needed to ensure that all injured children receive equitable emergency care.
doi:10.1111/j.1553-2712.2012.01356.x
PMCID: PMC3443629  PMID: 22594358
7.  Medical Care in Long-Term Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study 
Journal of Clinical Oncology  2008;26(27):4401-4409.
Purpose
To evaluate whether childhood cancer survivors receive regular medical care focused on the specific morbidities that can arise from their therapy.
Patients and Methods
We conducted a cross-sectional survey of health care use in 8,522 participants in the Childhood Cancer Survivor Study, a multi-institutional cohort of childhood cancer survivors. We assessed medical visits in the preceding 2 years, whether these visits were related to the prior cancer, whether survivors received advice about how to reduce their long-term risks, and whether screening tests were discussed or ordered. Completion of echocardiograms and mammograms were assessed in patients at high risk for cardiomyopathy or breast cancer. We examined the relationship between demographics, treatment, health status, chronic medical conditions, and health care use.
Results
Median age at cancer diagnosis was 6.8 years (range, 0 to 20.9 years) and at interview was 31.4 years (range, 17.5 to 54.1 years). Although 88.8% of survivors reported receiving some form of medical care, only 31.5% reported care that focused on their prior cancer (survivor-focused care), and 17.8% reported survivor-focused care that included advice about risk reduction or discussion or ordering of screening tests. Among survivors who received medical care, those who were black, older at interview, or uninsured were less likely to have received risk-based, survivor-focused care. Among patients at increased risk for cardiomyopathy or breast cancer, 511 (28.2%) of 1,810 and 169 (40.8%) of 414 had undergone a recommended echocardiogram or mammogram, respectively.
Conclusion
Despite a significant risk of late effects after cancer therapy, the majority of childhood cancer survivors do not receive recommended risk-based care.
doi:10.1200/JCO.2008.16.9607
PMCID: PMC2653112  PMID: 18802152
8.  Impact of Rural Residence on Forgoing Healthcare after Cancer Because of Cost 
Background
Routine follow-up care is recommended to promote the well-being of cancer survivors, but financial difficulties may interfere. Rural-urban disparities in forgoing healthcare due to cost have been observed in the general population; however, it is unknown whether this disparity persists among survivors. The purpose of this study was to examine rural-urban disparities in forgoing healthcare after cancer due to cost.
Methods
We analyzed data from 7804 cancer survivors in the 2006–2010 National Health Interview Survey. Logistic regression models, adjusting for sociodemographic and clinical characteristics, were used to assess rural-urban disparities in forgoing medical care, prescription medications, and dental care due to cost, stratified by age (younger: 18–64, older: 65+).
Results
Compared to urban survivors, younger rural survivors were more likely to forgo medical care (p<0.001) and prescription medications (p<0.001) due to cost; older rural survivors were more likely to forgo medical (p<0.001) and dental care (p=0.05). Rural-urban disparities did not persist among younger survivors in adjusted analyses; however, older rural survivors remained more likely to forgo medical (OR=1.66, 95%CI=1.11–2.48) and dental care (OR=1.54, 95%CI=1.08–2.20).
Conclusions
Adjustment for health insurance and other sociodemographic characteristics attenuates rural-urban disparities in forgoing healthcare among younger survivors, but not older survivors. Financial factors relating to healthcare utilization among rural survivors should be a topic of continued investigation.
Impact
Addressing out-of-pocket costs may be an important step in reducing rural-urban disparities in healthcare, especially for older survivors. It will be important to monitor how healthcare reform efforts impact disparities observed in this vulnerable population.
doi:10.1158/1055-9965.EPI-13-0421
PMCID: PMC3833446  PMID: 24097196
cancer; long-term survivors; rural population; healthcare disparities; health services accessibility
9.  A Longitudinal Study of Medicaid Coverage for Tobacco Dependence Treatments in Massachusetts and Associated Decreases in Hospitalizations for Cardiovascular Disease 
PLoS Medicine  2010;7(12):e1000375.
Thomas Land and colleagues show that among Massachusetts Medicaid subscribers, use of a comprehensive tobacco cessation pharmacotherapy benefit was followed by a substantial decrease in claims for hospitalizations for acute myocardial infarction and acute coronary heart disease.
Background
Insurance coverage of tobacco cessation medications increases their use and reduces smoking prevalence in a population. However, uncertainty about the impact of this coverage on health care utilization and costs is a barrier to the broader adoption of this policy, especially by publicly funded state Medicaid insurance programs. Whether a publicly funded tobacco cessation benefit leads to decreased medical claims for tobacco-related diseases has not been studied. We examined the experience of Massachusetts, whose Medicaid program adopted comprehensive coverage of tobacco cessation medications in July 2006. Over 75,000 Medicaid subscribers used the benefit in the first 2.5 years. On the basis of earlier secondary survey work, it was estimated that smoking prevalence declined among subscribers by 10% during this period.
Methods and Findings
Using claims data, we compared the probability of hospitalization prior to use of the tobacco cessation pharmacotherapy benefit with the probability of hospitalization after benefit use among Massachusetts Medicaid beneficiaries, adjusting for demographics, comorbidities, seasonality, influenza cases, and the implementation of the statewide smoke-free air law using generalized estimating equations. Statistically significant annualized declines of 46% (95% confidence interval 2%–70%) and 49% (95% confidence interval 6%–72%) were observed in hospital admissions for acute myocardial infarction and other acute coronary heart disease diagnoses, respectively. There were no significant decreases in hospitalizations rates for respiratory diagnoses or seven other diagnostic groups evaluated.
Conclusions
Among Massachusetts Medicaid subscribers, use of a comprehensive tobacco cessation pharmacotherapy benefit was associated with a significant decrease in claims for hospitalizations for acute myocardial infarction and acute coronary heart disease, but no significant change in hospital claims for other diagnoses. For low-income smokers, removing the barriers to the use of smoking cessation pharmacotherapy has the potential to decrease short-term utilization of hospital services.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Smoking is the leading preventable cause of death in the world. Globally, it is responsible for one in ten deaths among adults. In developed countries, the death toll is even higher—in the USA and the UK, for example, one in five deaths are caused by cigarette smoking. In the USA alone, where a fifth of adults smoke, smoking accounts for more than 400,000 deaths every year; globally, smoking causes 5 million deaths per year. On average, smokers die 14 years earlier than nonsmokers, and half of all long-term smokers will die prematurely because of a smoking-related disease. These diseases include lung cancer, other types of cancer, heart disease, stroke, and lung diseases such as chronic airway obstruction, bronchitis, and emphysema. And, for every smoker who dies from one of these smoking-related diseases, another 20 will develop at least one serious disease because of their addiction to tobacco.
Why Was This Study Done?
About half of US smokers try to quit each year but most of these attempts fail. Many experts believe that counseling and/or treatment with tobacco cessation medications such as nicotine replacement products help smokers to quit. In the USA, where health care is paid for through private or state health insurance, there is some evidence that insurance coverage of tobacco cessation medications increases their use and reduces smoking prevalence. However, smoking cessation treatment is poorly covered by US health insurance programs, largely because of uncertainty about the impact of such coverage on health care costs. It is unknown, for example, whether the introduction of publicly funded tobacco cessation benefits decreases claims for treatment for tobacco-related diseases. In this longitudinal study (a study that follows a group of individuals over a period of time), the researchers ask whether the adoption of comprehensive coverage of tobacco cessation medications by the Massachusetts Medicaid program (MassHealth) in July 2006 has affected claims for treatment for tobacco-related diseases. During its first two and half years, more than 75,000 MassHealth subscribers used the tobacco cessation medication benefit and smoking prevalence among subscribers declined by approximately 10% (38.3% to 28.8%).
What Did the Researchers Do and Find?
The researchers used MassHealth claims data and a statistical method called generalized estimating equations to compare the probability of hospitalization prior to the use of tobacco cessation medication benefit with the probability of hospitalization after benefit use among MassHealth subscribers. After adjusting for other factors that might have affected hospitalization such as influenza outbreaks and the implementation of the Massachusetts Smoke-Free Workplace Law in July 2004, there was a statistically significant annualized decline in hospital admissions for heart attack of 46% after use of the tobacco cessation medication benefit. That is, the calculated annual rate of admissions for heart attacks was 46% lower after use of the benefit than before among MassHealth beneficiaries. There was also a 49% annualized decline in admissions for coronary atherosclerosis, another smoking-related heart disease. There were no significant changes in hospitalization rates for lung diseases (including asthma, pneumonia, and chronic airway obstruction) or for seven other diagnostic groups.
What Do These Findings Mean?
These findings show that, among MassHealth subscribers, the use of a tobacco cessation medication benefit was followed by a significant decrease in claims for hospitalization for heart attack and for coronary atherosclerosis but not for other diseases. It does not, however, show that the reduced claims for hospitalization were associated with a reduction in smoking because smoking cessation was not recorded by MassHealth. Furthermore, it is possible that the people who used the tobacco cessation medication benefit shared other characteristics that reduced their chances of hospitalization for heart disease. For example, people using tobacco cessation medication might have been more likely to adhere to prescription schedules for medications such as statins that would also reduce their risk of heart disease. Finally, these findings might be unique to Massachusetts, so similar studies need to be undertaken in other states. Nevertheless, the results of this study suggest that, for low-income smokers, removing financial barriers to the use of smoking cessation medications has the potential to produce short-term decreases in the use of hospital services that will, hopefully, outweigh the costs of comprehensive tobacco cessation medication benefits.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000375.
The US Centers for Disease Control and Prevention Office on Smoking and Health has information on all aspects of smoking and health, including advice on how to quit
The UK National Health Service Choices Web site provides advice about quitting smoking; more advice on quitting is provided by Smokefree
The American Heart Association provides information on heart disease, including advice on how to quit smoking (in several languages)
Information about MassHealth is available, including information on smoking and tobacco use prevention
doi:10.1371/journal.pmed.1000375
PMCID: PMC3000429  PMID: 21170313
10.  Uninsured and unstably insured: the importance of continuous insurance coverage. 
Health Services Research  2000;35(1 Pt 2):187-206.
OBJECTIVE: To examine the importance of continuous health insurance for access to care by comparing the access and cost experiences of insured adults with a recent time uninsured to the experiences of currently uninsured adults and experiences of adults with no time uninsured within a reference time period (continuously insured). DATA SOURCES: Adults ages 18-64. Data draw from three different survey databases: the Robert Wood Johnson Foundation 1996-1997 Community Tracking Survey, the Kaiser/Commonwealth 1997 National Survey of Health Insurance, and the 1995-1997 Kaiser/Commonwealth State Low Income Surveys. STUDY DESIGN: The study groups individuals into three insurance categories based on respondents' reports of insurance coverage within a reference time period: continuously insured; insured when surveyed but with recent time uninsured; and currently uninsured. In the two Kaiser/Commonwealth surveys the recently uninsured group included any insured respondent with a time uninsured in the past two years. In the Community Tracking Survey, the recently uninsured group included any insured respondent with a time uninsured in the past year. Measures of access include foregoing health care when needed, usual source of care, use of health care services, difficulties paying for medical care, and satisfaction with care. DATA COLLECTION: All three surveys were conducted primarily by telephone. The Community Tracking Survey drew from 60 community sites, with an additional random national sample. The Kaiser/Commonwealth National Survey was a random national sample; the Kaiser/Commonwealth State Low Income Surveys included adults ages 18-64 with incomes at or below 250 percent of poverty in seven states: Minnesota, Oregon, Tennessee, Florida, Texas, New York, and California. PRINCIPAL FINDINGS: Compared to the continuously insured, those insured but with a recent time uninsured were at high risk of going without needed care and of having problems paying medical bills. This group was two to three times as likely as those with continuous coverage to report access problems. Rates of access and cost problems reported by insured adults with a recent time uninsured neared levels reported by those who were uninsured at the time of the survey. These two groups also rated care received more negatively than did adults with continuous insurance coverage. In general, the access gap between persons insured and uninsured widened as a result of distinguishing insured adults with a recent time uninsured from insured adults with no time uninsured. CONCLUSION: Studies that focus on current insurance status alone will underestimate the extent to which having a time uninsured during the year contributes to access difficulties and undermines quality of care, and will underestimate the proportion of the population at risk because they are uninsured. Policy reforms are needed to maintain continuous insurance coverage and avoid spells uninsured. Currently uninsured and unstably insured adults are both at high risk.
PMCID: PMC1089095  PMID: 10778809
11.  Insurance Coverage & Whither Thou Goest for Health Information in 2012 
Medicare & Medicaid Research Review  2014;4(4):mmrr2014-004-04-b01.
Objective
Examine use of the Internet (eHealth) and mobile health (mHealth) technologies by privately insured, publicly insured (Medicare/Medicaid), or uninsured U.S. adults in 2012.
Data Source
Pew Charitable Trust telephone interviews of a nationally representative, random sample of 3,014 adult U.S. residents, age 18+.
Methods
Estimate health information seeking behavior overall and by segment (i.e., insurance type), then, adjust estimates for individual traits, clinical need, and technology access using logistic regression.
Results
Most respondents prefer offline to online (Internet) health information sources; over half across all segments use the Internet. More respondents communicate with providers offline compared with online. Most self-reported Internet users use online tools for health information, with privately insured respondents more likely to use new technologies. Unadjusted use rates differ across segments. Medicaid beneficiaries are more likely than the privately insured to share health information online, and Medicare beneficiaries are more likely than the privately insured to text with health professionals. After adjustment, these differences were minimal (e.g., Medicare beneficiaries had odds similar to the privately insured of online physician consultations), or the direction of the association reversed (e.g., Medicaid beneficiaries had greater odds than the privately insured of online physician consultations versus lower odds before adjustment).
Discussion
Few adults report eHealth or mHealth use in 2012. Use levels appear unevenly distributed across insurance types, which could be mostly attributed to differences in individual traits and/or need. As out-of-pocket costs of medical care increases, consumers may increasingly turn to these generally free electronic health tools.
doi:10.5600/mmrr.004.04.b01
PMCID: PMC4222715  PMID: 25383242
Medicare; Medicaid; private insurance; eHealth; mHealth; health insurance; technology; surveys; interviews
12.  Health Care Utilization by Adult Hispanic Long-term Survivors of Hematopoietic Stem Cell Transplantation: Report from the Bone Marrow Transplant Survivor Study 
Cancer  2008;113(10):2724-2733.
Background
Long-term HCT survivors have a high prevalence of severe and chronic health conditions, placing significant demands on the healthcare system. The aim of this study was to evaluate and compare the healthcare utilization by adult Hispanic and non-Hispanic white long term survivors of HCT.
Methods
A mailed questionnaire was used to assess self-reported health care utilization in three domains: general contact with healthcare system, general physical examination outside cancer center (GPE), and Cancer/HCT center visit. Eligible individuals had undergone HCT between 1974 and 1998, at 21 years of age or older and survived 2 or more years after HCT.
Results
The cohort included 681 non-Hispanic white and 137 Hispanic survivors. The median age at HCT was 38.3 years and the median length of follow-up was 6.6 years. Hispanic survivors had lower family income and education and were more likely to lack health insurance. The prevalence of GPE increased significantly over time among non- Hispanic whites (67% at 2–5 years to 76% at 11+ years) but remained unchanged among Hispanics (66% to 61%). Cancer/ HCT center visits declined over time among both Hispanics and non-Hispanic whites but higher proportion of Hispanics reported Cancer/HCT center visit at 11+ years after HCT (81% vs. 54%).
Conclusion
As compared to non-Hispanic whites, Hispanic survivors are less likely to establish contact with a primary care providers years after the HCT and continue to receive care at Cancer/HCT center. Future studies of this population are needed to establish the factors responsible for this pattern of healthcare utilization.
doi:10.1002/cncr.23917
PMCID: PMC2613563  PMID: 18831512
Hematopoietic cell transplantation; Survivor; Hispanics; Healthcare utilization
13.  The Association Between Insurance Status and Cervical Cancer Screening in Community Health Centers: Exploring the Potential of Electronic Health Records for Population-Level Surveillance, 2008–2010 
Introduction
Cervical cancer incidence and mortality rates in the United States have decreased 67% over the past 3 decades, a reduction mainly attributed to widespread use of the Papanicolaou (Pap) test for cervical cancer screening. In the general population, receipt of cervical cancer screening is positively associated with having health insurance. Less is known about the role insurance plays among women seeking care in community health centers, where screening services are available regardless of insurance status. The objective of our study was to assess the association between cervical cancer screening and insurance status in Oregon and California community health centers by using data from electronic health records.
Methods
We used bilevel log-binomial regression models to estimate prevalence ratios and 95% confidence intervals for receipt of a Pap test by insurance status, adjusted for patient-level demographic factors and a clinic-level random effect.
Results
Insurance status was a significant predictor of cervical cancer screening, but the effect varied by race/ethnicity and age. In our study uninsured non-Hispanic white women were less likely to receive a Pap test than were uninsured women of other races. Young, uninsured Hispanic women were more likely to receive a Pap test than were young, fully insured Hispanic women, a finding not previously reported.
Conclusion
Electronic health records enable population-level surveillance in community health centers and can reveal factors influencing use of preventive services. Although community health centers provide cervical cancer screening regardless of insurance status, disparities persist in the association between insurance status and receipt of Pap tests. In our study, after adjusting for demographic factors, being continuously insured throughout the study period improved the likelihood of receiving a Pap test for many women.
doi:10.5888/pcd10.130034
PMCID: PMC3809921  PMID: 24157076
14.  Being uninsured in 1996 compared to 1987: how has the experience of the uninsured changed over time? 
Health Services Research  2001;36(6 Pt 2):16-31.
OBJECTIVE: To explore trends in the nonelderly uninsured population between 1987 and 1996 and examine whether the broad disparities in medical care utilization and out-of -pocket spending between the privately insured and uninsured populations that existed in 1987 continued over the following decade. DATA SOURCES/STUDY DESIGN: Data are from the 1996 Medical Expenditure Panel Survey and the 1987 National Medical Expenditure Survey. We used survey data to create descriptive tables examining the characteristics of the uninsured population and the use of medical services, total and out-of -pocket expenditures, and the burden of out-of -pocket spending for the uninsured and the privately insured in 1987 and 1996. Tabulations are presented by demographic and socioeconomic characteristics. PRINCIPAL FINDINGS: The composition of the uninsured population changed somewhat between 1987 and 1996, with adults over age 18 and employed persons making up larger proportions of the uninsured in 1996, and the poor and those in fair or poor health making up smaller proportions. There were few changes in utilization of services by the uninsured over this period and no change in mean expenses, but there was an increase in receipt of at least one preventive service (mammograms) and a decline in the proportion of families with high out-of-pocket burden. Disparities in use and expenses that existed between the uninsured and the privately insured in 1987, however, remained in 1996. CONCLUSIONS: Despite the fundamental changes in the health care system that took place between 1987 and 1996, health care utilization and expenses for the uninsured changed very little. The uninsured are still much less likely to use services than are the privately insured, and they pay for a larger proportion of their medical care expenses out of pocket. There was some improvement in the burden of out-of -pocket spending between 1987 and 1996, but a significant number of the uninsured still have high financial burden.
PMCID: PMC1383604  PMID: 16148958
15.  Uninsurance among Children Whose Parents Are Losing Medicaid Coverage: Results from a Statewide Survey of Oregon Families 
Health Services Research  2008;43(1 Pt 2):401-418.
Context
Thousands of adults lost coverage after Oregon's Medicaid program implemented cost containment policies in March 2003. Despite the continuation of comprehensive public health coverage for children, the percentage of uninsured children in the state rose from 10.1 percent in 2002 to 12.3 percent in 2004 (over 110,000 uninsured children). Among the uninsured children, over half of them were likely eligible for public health insurance coverage.
Research Objective
To examine barriers low-income families face when attempting to access children's health insurance. To examine possible links between Medicaid cutbacks in adult coverage and children's loss of coverage.
Data Source/Study Setting
Statewide primary data from low-income households enrolled in Oregon's food stamp program.
Study Design
Cross-sectional analysis. The primary predictor variable was whether or not any adults in the household recently lost Medicaid coverage. The main outcome variables were children's current insurance status and children's insurance coverage gaps.
Data Collection
A mail-return survey instrument was designed to collect information from a stratified, random sample of households with children presumed eligible for publicly funded health insurance programs.
Principal Findings
Over 10 percent of children in the study population eligible for publicly funded health insurance programs were uninsured, and over 25 percent of these children had gaps in insurance coverage during a 12-month period. Low-income children who were most likely to be uninsured or have coverage gaps were Hispanic; were teenagers older than 14; were in families at the higher end of the income threshold; had an employed parent; or had a parent who was uninsured. Fifty percent of the uninsured children lived in a household with at least one adult who had recently lost Medicaid coverage, compared with only 40 percent of insured children (p=.040). Similarly, over 51 percent of children with a recent gap in insurance coverage had an adult in the household who lost Medicaid, compared with only 38 percent of children without coverage gaps (p<.0001). After adjusting for ethnicity, age, household income, and parental employment, children living in a household with an adult who lost Medicaid coverage after recent cutbacks had a higher likelihood of having no current health insurance (OR 1.44, 95 percent CI 1.02, 2.04), and/or having an insurance gap (OR 1.79, 95 percent CI 1.36, 2.36).
Conclusions
Uninsured children and those with recent coverage gaps were more likely to have adults in their household who lost Medicaid coverage after recent cutbacks. Although current fiscal constraints prevent many states from expanding public health insurance coverage to more parents, states need to be aware of the impact on children when adults lose coverage. It is critical to develop strategies to keep parents informed regarding continued eligibility and benefits for their children and to reduce administrative barriers to children's enrollment and retention in public health insurance programs.
doi:10.1111/j.1475-6773.2007.00764.x
PMCID: PMC2323132  PMID: 18199193
Insurance coverage; health care access; primary health care; Medicaid; children's health care
16.  Screening and surveillance for second malignant neoplasms in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS) 
Annals of internal medicine  2010;153(7):442-451.
Background
Childhood cancer survivors may develop a second malignant neoplasm during adulthood and therefore require regular surveillance.
Objective
To examine adherence to population cancer screening guidelines by survivors at average risk of developing a second malignant neoplasm, and to cancer surveillance guidelines by survivors at high risk of developing a second malignant neoplasm.
Design
Retrospective cohort study.
Setting
The Childhood Cancer Survivor Study (CCSS), a 26 center study of long-term survivors of childhood cancer who were diagnosed between 1970 and 1986.
Patients
4,329 male and 4,018 female survivors of childhood cancer who completed a CCSS questionnaire assessing screening and surveillance for new cancers.
Measurements
Patient-reported receipt and timing of mammography, Papanicolaou smear, colonoscopy, or skin examination was categorized as adherent to the United States Preventive Services Task Force guidelines for survivors at average risk for breast or cervical cancer, or the Children’s Oncology Group guidelines for survivors at high risk for developing breast, colorectal or skin cancer as a result of their therapy.
Results
Among average risk female survivors, 2,743/3,392 (80.9%) reported a Papanicolaou smear within the recommended period, and 140/209 (67.0%) reported a mammogram within the recommended period. Among high risk survivors, rates of recommended mammography among females, and colonoscopy and complete skin exams among both genders were only 241/522 (46.2%), 91/794 (11.5%) and 1,290/4,850 (26.6%), respectively.
Limitations
Data were self report. CCSS participants are a select group of survivors and their compliance may not be representative of all childhood cancer survivors.
Conclusions
Female survivors at average risk for developing a second malignant neoplasm demonstrate reasonable rates of screening for cervical and breast cancer. However, surveillance for new cancers is very poor amongst survivors at highest risk for colon, breast or skin cancer, suggesting that survivors and their physicians need education about their risks and the recommended surveillance.
doi:10.1059/0003-4819-153-7-201010050-00007
PMCID: PMC3084018  PMID: 20921543
17.  Access to Care After Massachusetts’ Health Care Reform: A Safety Net Hospital Patient Survey 
Journal of General Internal Medicine  2012;27(11):1548-1554.
ABSTRACT
BACKGROUND
Massachusetts’ health care reform substantially decreased the percentage of uninsured residents. However, less is known about how reform affected access to care, especially according to insurance type.
OBJECTIVE
To assess access to care in Massachusetts after implementation of health care reform, based on insurance status and type.
DESIGN AND PARTICIPANTS
We surveyed a convenience sample of 431 patients presenting to the Emergency Department of Massachusetts’ second largest safety net hospital between July 25, 2009 and March 20, 2010.
MAIN MEASURES
Demographic and clinical characteristics, insurance coverage, measures of access to care and cost-related barriers to care.
KEY RESULTS
Patients with Commonwealth Care and Medicaid, the two forms of insurance most often newly-acquired under the reform, reported similar or higher utilization of and access to outpatient visits and rates of having a usual source of care, compared with the privately insured. Compared with the privately insured, a significantly higher proportion of patients with Medicaid or Commonwealth Care Type 1 (minimal cost sharing) reported delaying or not getting dental care (42.2 % vs. 27.1 %) or medication (30.0 % vs. 7.0 %) due to cost; those with Medicaid also experienced cost-related barriers to seeing a specialist (14.6 % vs. 3.5 %) or getting recommended tests (15.6 % vs. 5.9 %). Those with Commonwealth Care Types 2 and 3 (greater cost sharing) reported significantly more cost-related barriers to obtaining care than the privately insured (45.0 % vs. 16.0 %), to seeing a primary care doctor (25.0 % vs. 6.0 %) or dental provider (58.3 % vs. 27.1 %), and to obtaining medication (20.8 % vs. 7.0 %). No differences in cost-related barriers to preventive care were found between the privately and publicly insured.
CONCLUSIONS
Access to care improved less than access to insurance following Massachusetts’ health care reform. Many newly insured residents obtained Medicaid or state subsidized private insurance; cost-related barriers to access were worse for these patients than for the privately insured.
Electronic supplementary material
The online version of this article (doi:10.1007/s11606-012-2173-7) contains supplementary material, which is available to authorized users.
doi:10.1007/s11606-012-2173-7
PMCID: PMC3475814  PMID: 22825807
access to care; health insurance; health disparities; health care reform; health care policy
18.  Health Insurance and Length of Stay for Children Hospitalized With Community-Acquired Pneumonia 
BACKGROUND
Disparities in patterns of care and outcomes for ambulatory-care sensitive childhood conditions such as community-acquired pneumonia (CAP) persist. However, the influence of insurance status on length of stay (LOS) for children hospitalized with CAP remains unexplored.
METHODS
Secondary analysis of children (<18 years) hospitalized with CAP sampled in the Kids’ Inpatient Database (KID) for years 1997, 2000, 2003, and 2006. Insurance status (private, public, uninsured) was based on claims data. Hospital LOS was calculated in days. Taking into account the complex sampling design, negative binomial regression models produced adjusted estimates of incidence rate ratios (IRR) for hospital LOS for children by insurance status.
RESULTS
There was little variation in the categories of insurance status of children hospitalized with CAP between 1997 and 2006, with at least 40% privately insured, at least 40% publicly insured, and at least 5% uninsured in each sampled year. In all years, publicly insured children had a significantly longer hospital stay than privately insured children, and uninsured children had a significantly shorter hospital stay than privately insured children. These observed differences persisted after multivariate adjustment.
CONCLUSIONS
Differences in LOS between uninsured, publicly insured, and privately insured children with CAP raise concerns about potential differences in hospital discharge practices related to insurance status and type. As healthcare reform is implemented, policy makers should strengthen efforts to reduce these disparities in order to achieve health for the population.
doi:10.1002/jhm.959
PMCID: PMC3877930  PMID: 21972214
19.  Physical activity among adult survivors of childhood lower extremity sarcoma 
INTRODUCTION
Adult survivors of childhood lower-extremity sarcoma are largely physically inactive, a behavior which potentially compounds their health burden. Altering this behavior requires understanding those factors that contribute to their physical inactivity. Therefore, this investigation sought to identify factors associated with inactivity in this subpopulation of cancer survivors.
METHODS
Demographic, personal, treatment and physical activity information from adult survivors of childhood lower-extremity sarcomas was obtained from the Childhood Cancer Survivor Study (CCSS) cohort. Generalized linear models were used to identify variables that best identified those individuals who were physically inactive.
RESULTS
Only 41% of survivors met Center for Disease Control (CDC) activity guidelines. Survivors were 1.20 (95% CI 1.11–1.30) more likely compared to CCSS sibling cohort and 1.12 (95% CI 1.10–1.15) times more likely than the general population to fail to meet CDC guidelines. Significant predictors of physical inactivity included female sex, hemipelvectomy surgery, and platinum and vinca alkaloid chemotherapy.
CONCLUSIONS
The primary findings of this study are that survivors of childhood onset lower-extremity sarcoma are 1) highly likely to be physically inactive and 2) less likely than their siblings or the general population to regularly exercise. This study has identified treatment related risk factors associated with inactivity that will help health and wellness practitioners develop successful exercise interventions to help these survivors achieve recommended levels of physical activity for health.
IMPLICATIONS FOR CANCER SURVIVORS
These results suggest that physical activity interventions for adult survivors of childhood lower-extremity sarcomas should be sex specific and responsive to unique physical late effects experienced by these survivors.
doi:10.1007/s11764-011-0187-5
PMCID: PMC3248971  PMID: 21681405
Childhood cancer; physical activity; exercise; late-effects; sedentary
20.  Usual Source of Care and Unmet Need Among Vulnerable Children: 1998–2006 
Pediatrics  2009;123(2):e214-e219.
OBJECTIVE
The purpose of this work was to identify the proportions of publicly (Medicaid and State Child Health Insurance Program) insured and uninsured children who did not identify a usual source of care from 1998 to 2006, spanning the State Children’s Health Insurance Program (1997 to present) and the President’s Health Center Initiative (2002 to present), and to characterize unmet medical need as it relates to insurance and a usual source of care for publicly insured and uninsured children.
METHODS
We conducted a secondary data analysis of multiple years of the National Health Interview Survey. We identified the proportion of publicly insured and uninsured children aged 0 to 17 years who did not identify a usual source of care and stratified according to the site of care. We described the odds of reporting an unmet medical need according to insurance status and usual source of care, compared with privately insured children with a usual source of care. Sample weights were used to derive national estimates.
RESULTS
From 1998 through 2006, there were significant increases in the proportions of children enrolled in Medicaid (16.7%–24.5%) and the State Child Health Insurance Program (2.0%–5.3%). The proportion of uninsured children has remained stable from 2002 to 2006 at ~10%. However, the proportion of uninsured reporting no usual source of care increased from 17.8% to 23.3%. Hispanic children had significant increases in the proportions of the uninsured and reporting no usual source of care by 2006. Hispanics constituted the largest proportion in both groups. Uninsured children and children without a usual source of care reported the highest odds of unmet need. Among the insured, publicly insured children had twice the odds of reporting an unmet need compared with privately insured children.
CONCLUSIONS
During the State Child Health Insurance Program and the President’s Health Center Initiative, growing proportions of uninsured children reported no usual source of care. Unmet medical need was the highest for the uninsured and those without a usual source of care. These findings suggest that initiatives designed to improve access to care must combine broadened insurance coverage with enhanced access to usual sources of care.
doi:10.1542/peds.2008-2454
PMCID: PMC2787198  PMID: 19171573
usual source of care; Medicaid; SCHIP; uninsured; children; health center
21.  Impact of health insurance status on vaccination coverage in children 19-35 months old, United States, 1993-1996. 
Public Health Reports  2004;119(2):156-162.
OBJECTIVES: To show how health insurance (privately and publicly insured, insured and uninsured) relates to vaccination coverage in children 19-35 months old, and how this can be used to better target public health interventions. METHODS: The National Health Interview Survey (NHIS) gathers information on the health and health care of the U.S. non-institutionalized population through household interviews. The authors combined immunization and health insurance supplements from the 1993 through 1996 NHIS, and classified children 19-35 months old by their immunization and insurance status. Results were compared using both bivariate and multivariate analyses, and the backwards stepwise selection method was used to build multivariate logistic regression models. RESULTS: Uninsured children tended to have lower vaccination coverage than those who had insurance, either private or public. Among those with insurance, publicly insured children had lower vaccination coverage than privately insured children. Backwards stepwise regression retained insurance status, metropolitan statistical area, and education of responsible adult family member as major predictors of immunization. Factors considered but not retained in the final model included child race/ethnicity, family poverty index, and region of country. CONCLUSIONS: Insurance status was a critical predictor of vaccination coverage for children ages 19-35 months. After controlling for confounders, the uninsured were about 24% less likely to receive all recommended shots than the insured and, among the insured, those with public insurance were about 24% less likely to receive all recommended vaccines than those with private insurance.
PMCID: PMC1497610  PMID: 15192902
22.  Childhood Cancer Survivors' Familiarity With and Opinions of the Patient Protection and Affordable Care Act 
Journal of Oncology Practice  2013;9(5):246-250.
Childhood cancer survivors have a low level of familiarity with the Patient Protection and Affordable Care Act (ACA) and are unaware of how it may affect them given their cancer history. These survivors require targeted education to increase knowledge about the ACA.
Purpose:
The Patient Protection and Affordable Care Act (ACA) offers avenues to increase insurance options and access to care; however, it is unknown whether populations with pre-existing conditions, such as cancer survivors, will benefit from the expanded coverage options. We explored childhood cancer survivors' familiarity with and opinion of the ACA to understand how survivors' insurance coverage may be affected.
Materials and Methods:
From April to July 2012 we conducted in-depth, semistructured telephone interviews with 53 adult survivors recruited from the Utah Cancer SEER Registry. Participants were randomly selected from sex, age, and rural/urban strata and were younger than 21 years at time of diagnosis. Interviews were recorded, transcribed, and analyzed with NVivo 9 by two coders (kappa = 0.94). We report on the 49 participants who had heard of the ACA.
Results:
Most survivors were unaware of ACA provisions beyond the insurance mandate. Few knew about coverage for children up to age 26 or pre-existing insurance options. Although one third believed the ACA could potentially benefit them via expanded insurance coverage, many were concerned that the ACA would lead to rising health care costs and decreasing quality of care. Survivors had concerns specific to their cancer history, including fears of future health care rationing if they developed subsequent health problems.
Conclusion:
Childhood cancer survivors have a low level of familiarity with the ACA and are unaware of how it may affect them given their cancer history. These survivors require targeted education to increase knowledge about the ACA.
doi:10.1200/JOP.2013.000919
PMCID: PMC3770506  PMID: 23943900
23.  Ambulatory care for cancer in the United States: results from two national surveys comparing visits to physicians' offices and hospital outpatient departments. 
BACKGROUND: Among the general population, type of health insurance has been reported to affect the location of ambulatory visits and the content of those visits. We examined where cancer patient visits occurred (physicians' offices or hospital clinics), and whether anticancer therapy is administered or prescribed. METHODS: Cross-sectional study using National Ambulatory Medical Care Survey and National Hospital Ambulatory Care Survey (NAMCS/NHAMCS) data to characterize ambulatory cancer patient visits from 2001-2003. Multivariable logistic regression analyses were performed to identify factors associated with where a cancer patient went for care (office practice versus hospital clinic) and anticancer therapy received. RESULTS: Thirteen percent of patients visited hospital clinics, with the remainder visiting office-based settings. Younger cancer patients and those with Medicaid were more likely to visit hospital clinics compared to older and privately insured cancer patients. Cancer patients with <6 visits in the last year were less likely to be seen in the office setting. Patients with lung cancer, lymphoma/leukemia and melanoma were less likely to have anticancer therapy administered or prescribed compared to breast cancer patients. The uninsured were less likely to have anticancer administered or prescribed compared with the privately insured. CONCLUSIONS: Cancer patients with Medicaid were more likely to visit hospital clinics than privately insured patients. Treatment was associated with cancer type, not where care occurred and health insurance type, though there was a trend for the uninsured and those insured by Medicaid to be less likely to be administered or be prescribed anticancer therapy.
PMCID: PMC2575934  PMID: 18229771
24.  Assessment of Quality of Cancer-Related Follow-Up Care From the Cancer Survivor's Perspective 
Journal of Clinical Oncology  2011;29(10):1280-1289.
Purpose
We assessed cancer survivors' perceptions of the quality of their follow-up care.
Methods
We surveyed a population-based cohort of leukemia, bladder, and colorectal cancer survivors diagnosed 2 to 5 years previously in northern California (N = 623; participation rate, 69.2%; overall response rate, 49.2%). Data were collected between April 2003 and November 2004. Ten scales assessed survivors' perceptions of different aspects of care in the last 12 months, and an eleventh scale measured their overall ratings of care.
Results
On nine of the 11 scales, mean scores ranged from 88 to 97 on a 0 to 100 response format, indicating very positive experiences. The two areas where quality perceptions were lower were discussions about health promotion and the physician's knowledge of the whole patient. In adjusted analyses, those without private health insurance (P = .02) and Hispanic and Asian survivors compared with whites (P < .001) reported worse timeliness of care. Survivors who had multiple comorbidities reported better scores on timeliness of care (P < .01) and physicians' knowledge (P = .05) than survivors without any comorbidity. Length of the patient-physician relationship was the variable most consistently found to be significantly associated with survivors' quality assessments. Physicians' information exchange had the strongest relationship with overall ratings of care, followed by physicians' affective behavior, their knowledge of the survivor, and survivors' perceptions of coordination of care (P < .001 for all).
Conclusion
Delivery of quality follow-up care to cancer survivors may require efforts to improve patient-centered communication and coordination. Special emphasis may need to be placed on health promotion discussions and adoption of a whole-person orientation.
doi:10.1200/JCO.2010.32.1554
PMCID: PMC3083996  PMID: 21357781
25.  The Association between Health Insurance Coverage and Diabetes Care; Data from the 2000 Behavioral Risk Factor Surveillance System 
Health Services Research  2005;40(2):361-372.
Objective
To describe the association between type of health insurance coverage and the quality of care provided to individuals with diabetes in the United States.
Data Source
The 2000 Behavioral Risk Factor Surveillance System.
Study Design
Our study cohort included individuals who reported a diagnosis of diabetes (n=11,647). We performed bivariate and multivariate logistic regression analyses by age greater or less than 65 years to examine the association of health insurance coverage with diabetes-specific quality of care measures, controlling for the effects of race/ethnicity, annual income, gender, education, and insulin use.
Principal Findings
Most individuals with diabetes are covered by private insurance (39 percent) or Medicare (44 percent). Among persons under the age of 65 years, 11 percent were uninsured. The uninsured were more likely to be African American or Hispanic and report low incomes. The uninsured were less likely to report annual dilated eye exams, foot examinations, or hemoglobin A1c (HbA1c) tests and less likely to perform daily blood glucose monitoring than those with private health insurance. We found few differences in quality indicators between Medicare, Medicaid, or the Department of Veterans Affairs (VA) as compared with private insurance coverage. Persons who received care through the VA were more likely to report taking a diabetes education class and HbA1c testing than those covered by private insurance.
Conclusions
Uninsured adults with diabetes are predominantly minority and low income and receive fewer preventive services than individuals with health insurance. Among the insured, different types of health insurance coverage appear to provide similar levels of care, except for higher rates of diabetes education and HbA1c testing at the VA.
doi:10.1111/j.1475-6773.2005.00361.x
PMCID: PMC1361145  PMID: 15762896
Quality of care; health insurance; diabetes

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