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1.  The Financial Toxicity of Cancer Treatment: A Pilot Study Assessing Out-of-Pocket Expenses and the Insured Cancer Patient's Experience 
The Oncologist  2013;18(4):381-390.
The experiences of insured cancer patients requesting copayment assistance and the impact of health care expenses on well-being and treatment are examined. Insured patients undergoing cancer treatment and seeking copayment assistance were found to experience considerable subjective financial burden and were found to alter care to defray out-of-pocket expenses.
Learning Objectives
Describe the experiences of insured cancer patients requesting copayment assistance in order to better understand the challenges of underinsurance.Describe the impact of costs on the well being of insured cancer patients.Evaluate the impact of costs on the treatment received by insured cancer patients.
Purpose.
Cancer patients carry rising burdens of health care-related out-of-pocket expenses, and a growing number of patients are considered “underinsured.” Our objective was to describe experiences of insured cancer patients requesting copayment assistance and to describe the impact of health care expenses on well-being and treatment.
Methods.
We conducted baseline and follow-up surveys regarding the impact of health care costs on well-being and treatment among cancer patients who contacted a national copayment assistance foundation along with a comparison sample of patients treated at an academic medical center.
Results.
Among 254 participants, 75% applied for drug copayment assistance. Forty-two percent of participants reported a significant or catastrophic subjective financial burden; 68% cut back on leisure activities, 46% reduced spending on food and clothing, and 46% used savings to defray out-of-pocket expenses. To save money, 20% took less than the prescribed amount of medication, 19% partially filled prescriptions, and 24% avoided filling prescriptions altogether. Copayment assistance applicants were more likely than nonapplicants to employ at least one of these strategies to defray costs (98% vs. 78%). In an adjusted analysis, younger age, larger household size, applying for copayment assistance, and communicating with physicians about costs were associated with greater subjective financial burden.
Conclusion.
Insured patients undergoing cancer treatment and seeking copayment assistance experience considerable subjective financial burden, and they may alter their care to defray out-of-pocket expenses. Health insurance does not eliminate financial distress or health disparities among cancer patients. Future research should investigate coverage thresholds that minimize adverse financial outcomes and identify cancer patients at greatest risk for financial toxicity.
doi:10.1634/theoncologist.2012-0279
PMCID: PMC3639525  PMID: 23442307
Neoplasms; Cost; Chemotherapy; Indigency; Medical; Quality of health care; Financial support
2.  The Accuracy of Medicare Claims as an Epidemiological Tool: The Case of Dementia Revisited 
Our study estimates the sensitivity and specificity of Medicare claims to identify clinically-diagnosed dementia, and documents how errors in dementia assessment affect dementia cost estimates. We compared Medicare claims from 1993–2005 to clinical dementia assessments carried out in 2001–2003 for the Aging Demographics and Memory Study (ADAMS) cohort (n = 758) of the Health and Retirement Study. The sensitivity and specificity of Medicare claims was 0.85 and 0.89 for dementia (0.64 and 0.95 for AD). Persons with dementia cost the Medicare program (in 2003) $7,135 more than controls (P < 0.001) when using claims to identify dementia, compared to $5,684 more when using ADAMS (P < 0.001). Using Medicare claims to identify dementia results in a 110% increase in costs for those with dementia as compared to a 68% increase when using ADAMS to identify disease, net of other variables. Persons with false positive Medicare claims notations of dementia were the most expensive group of subjects ($11,294 versus $4,065, for true negatives P < 0.001). Medicare claims overcount the true prevalence of dementia, but there are both false positive and negative assessments of disease. The use of Medicare claims to identify dementia results in an overstatement of the increase in Medicare costs that are due to dementia.
doi:10.3233/JAD-2009-1099
PMCID: PMC3697480  PMID: 19542620
Dementia costs; medicare; sensitivity; specificity
3.  Identifying Trajectories of Depressive Symptoms for Women Caring for Their Husbands with Dementia 
OBJECTIVES
To use an innovative statistical method, Latent Class Trajectory Analysis (LCTA), to identify and describe subgroups (called trajectories) of caregiver depressive symptoms in a national sample of wives providing informal care for their husbands with dementia.
DESIGN
Longitudinal.
SETTING
Community.
PARTICIPANTS
Respondents to the National Longitudinal Caregiver Survey were wife caregivers of veterans with dementia who were identified through Veterans Affairs hospitals nationally.
MEASUREMENTS
Mean number of depressive symptoms as measured using the Center for Epidemiologic Studies Depression scale (CES-D, 20-item scale).
RESULTS
Overall mean depressive symptoms of wife caregivers were 6.2 of 20, below the cutpoint (8 or 9/20) associated with clinical depression. Four distinct trajectories of caregiver depressive symptoms were identified. The trajectory with the highest number of symptoms (11.9 of 20), contained one-third of the sample. Another third had mean depressive symptoms virtually identical to the overall sample mean. The final third were divided between two trajectories, low depressive symptoms (mean CES-D, 3.0/ 20, 22% of sample) and very low (mean CES-D, 0.8/20, 14% of sample). Approximately two-thirds of the sample members were in a depressive symptom trajectory, with substantially higher or lower numbers of symptoms than the overall mean. Two subjective measures asked of wife caregivers (desire for more help, life satisfaction) were significantly associated with membership in the highest depressive symptom trajectory.
CONCLUSION
LCTA identified important depressive symptom subgroups of wife caregivers. A population-averaging method identified a mean effect that was similar to the effect in one-third of the cases but substantially different from that in two-thirds of the cases.
doi:10.1111/j.1532-5415.2007.01558.x
PMCID: PMC3679900  PMID: 18179488
depression; caregiving; Latent Class Trajectory Analysis; dementia; spouses
4.  Trajectories of Caregiving Time Provided by Wives to Their Husbands With Dementia 
Spouses are often the first providers of informal care when their partners develop dementia. We used The National Longitudinal Caregiver Study (NLCS, 4 annual surveys, 1999 to 2002) and identified 3 distinct longitudinal patterns (trajectory classes) of total daily caregiving time provided by the wife to her husband using Generalized growth mixture models (GGMM). About 56.4% of the sample (N=828) was found to have an increase in the trajectory of total daily caregiving time (mean 252 min/d at baseline, rising to 471 min/d at time 4). Four hundred forty-four (30.3%) caregivers had a trajectory described by a moderate increase in caregiving time (an increase from a mean of 464 min/d at baseline to 533 at wave 4), whereas 195 (13.3%) had a sharply declining trajectory (a decline from a mean of 719 min/d at baseline to 421 at wave 4). There was no significant difference in the duration (time since onset) of caregiving at baseline for these 3 trajectories. GGMM are well suited for the identification of distinct trajectory classes. Here they show that there are large differences in caregiving time provided to persons with dementia, who seem to be quite similar.
doi:10.1097/WAD.0b013e31815bebba
PMCID: PMC3679901  PMID: 18525284
informal caregiving; longitudinal methods; burden of Alzheimer disease/dementia
5.  Identification of Dementia: Agreement among National Survey Data, Medicare Claims, and Death Certificates 
Health Services Research  2008;43(1 Pt 1):313-326.
Objective
To estimate the proportion of seniors with dementia from three independent data sources and their agreement.
Data Sources
The longitudinal Asset and Health Dynamics among the Oldest Old (AHEAD) study (n=7,974), Medicare claims, and death certificate data.
Study Design
Estimates of the proportion of individuals with dementia from: (1) self- or proxy-reported cognitive status measures from surveys, (2) Medicare claims, and (3) death certificates. Agreement using Cohen's κ; multivariate logistic regression.
Principal Findings
The proportion varied substantially among the data sources. Agreement was poor (κ: 0.14–0.46 depending upon comparison assessed); the individuals identified had relatively modest overlap.
Conclusions
Estimates of dementia occurrence based on cognitive status measures from three independent data sources were not interchangeable. Further validation of these sources is needed. Caution should be used if policy is based on only one data source.
doi:10.1111/j.1475-6773.2007.00748.x
PMCID: PMC2323140  PMID: 18211532
Dementia; cognitive impairment; longitudinal health surveys; health surveys; Medicare claims data; death certificates; agreement
6.  Access to Health Care Services for the Disabled Elderly 
Health Services Research  2006;41(3 Pt 1):743-758.
Objective
To determine whether difficulty walking and the strategies persons use to compensate for this deficit influenced downstream Medicare expenditures.
Data Source
Secondary data analysis of Medicare claims data (1999–2000) for age-eligible Medicare beneficiaries (N = 4,997) responding to the community portion of the 1999 National Long Term Care Survey (NLTCS).
Study Design
Longitudinal cohort study. Walking difficulty and compensatory strategy were measured at the 1999 NLTCS, and used to predict health care use as measured in Medicare claims data from the survey date through year-end 2000.
Data Extraction
Respondents to the 1999 community NLTCS with complete information on key explanatory variables (walking difficulty and compensatory strategy) were linked with Medicare claims to define outcome variables (health care use and cost).
Principal Findings
Persons who reported it was very difficult to walk had more downstream home health visits (1.1/month, p<.001), but fewer outpatient physician visits (−0.16/month, p<.001) after controlling for overall disease burden. Those using a compensatory strategy for walking also had increased home health visits/month (0.55 for equipment, 1.0 for personal assistance, p<.001 for both) but did not have significantly reduced outpatient visits. Persons reporting difficulty walking had increased downstream Medicare costs ranging from $163 to $222/month (p<.001) depending upon how difficult walking was. Less than half of the persons who used equipment to adapt to walking difficulty had their difficulty fully compensated by the use of equipment. Persons using equipment that fully compensated their difficulty used around $300/month less in Medicare-financed costs compared with those with residual difficulty.
Conclusions
Difficulty walking and use of compensatory strategies are correlated with the use of Medicare-financed services. The potential impact on the Medicare program is large, given how common such limitations are among the elderly.
doi:10.1111/j.1475-6773.2006.00509.x
PMCID: PMC1713211  PMID: 16704510
Mobility impairment; disability; medicare; access; costs
7.  Do Seniors Understand Their Risk of Moving to a Nursing Home? 
Health Services Research  2005;40(3):811-828.
Objective
To determine whether seniors understand their risk of moving to a nursing home.
Data Sources
We used longitudinal data from the Asset and Health Dynamics Among the Oldest Old (AHEAD) database. AHEAD is a nationally representative survey (n=8,203) of community dwellers aged 70+ years and their spouses.
Study Design
We followed respondents for 5 years from the date of the first interview fielded in 1993. Our primary dependent variable was whether respondents moved to a nursing home within 5 years of baseline; self-assessed probability of moving to a nursing home within 5 years, also assessed at baseline, was the primary explanatory variable.
Principal Findings
We found that seniors who believed they were more likely to move to a nursing home within 5 years were indeed more likely to do so, and that most elders overestimated their likelihood of moving to a nursing home.
Conclusions
Low rates of private long-term care insurance are not plausibly a result of seniors underestimating their personal risk of moving to a nursing home; such an assumption is inherent in many strategies to plan for the future long-term care needs of the baby boom generation.
doi:10.1111/j.1475-6773.2005.00386.x
PMCID: PMC1361169  PMID: 15960692
Nursing home; long-term care; risk perception; insurance
8.  The Effect of Smoking on Years of Healthy Life (YHL) Lost among Middle-Aged and Older Americans 
Health Services Research  2004;39(3):531-552.
Objective
To estimate the effects of smoking on quality of life over time, using the Years of Healthy Life (YHL) construct.
Data Sources/Study Setting
The Health and Retirement Study (HRS) survey (N = 12,652) of persons 50 to 60 years old and the Asset and Health Dynamics Among the Oldest Old (AHEAD) survey (N = 8,124) of persons≥70 years old, plus spouses regardless of age, followed from 1992/1993 to 2000.
Study Design
Years of healthy life from baseline to death were estimated. Regression models were developed with smoking as the main explanatory variable and with both YHL and years of life remaining as the outcome variables.
Principal Findings
Smoking was strongly and consistently related to YHL lost. In HRS, individuals who had quit smoking at least 15 years prior to baseline had a similar number of YHL left as never smokers.
Conclusions
Efforts to encourage smoking cessation should emphasize the impact of these factors on quality of life.
doi:10.1111/j.1475-6773.2004.00243.x
PMCID: PMC1361023  PMID: 15149477
Smoking; quality of life; years of healthy life; longitudinal study; middle aged; elderly
9.  Palliative Care Needs of Patients With Cancer Living in the Community 
Journal of Oncology Practice  2011;7(6):382-388.
The authors describe the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice.
Purpose:
With improved effectiveness of early detection and treatment, many patients with cancer are now living with advanced disease and associated symptoms. As cancer becomes a chronic illness, adequate attention to patients' symptoms and psychosocial needs in the community setting requires positioning of palliative care alongside cancer care. This article describes the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice.
Methods:
This secondary analysis used quality-monitoring data collected in three community-based palliative care organizations. Analyses focused on people with cancer-related diagnoses who were receiving palliative care during 2008 to 2011.
Results:
The analytic data set included 4,980 people, 10% of whom had cancer. Median age was 71 years. Forty-eight percent had been hospitalized at least once in the 6 months before palliative care referral. Forty-nine percent had a Palliative Performance Score (PPS) of 40% to 60%; 40% had PPS ≤ 30%. Although 81% had an estimated prognosis of ≤ 6 months, 58% were expected to live weeks to months. Thirty-three percent had no identified healthcare surrogate; 59% had no do-not-resuscitate order despite declining functional status and limited prognosis. Ninety-five percent reported ≥ 1 symptom, and 67% reported ≥ 3 symptoms; a substantial proportion did not receive treatment for symptoms.
Conclusions:
Patients referred to community-based palliative care experience multiple often-severe symptoms that have been insufficiently addressed. They tend to have declining performance status. Earlier palliative care intervention could improve outcomes but will require delivery models that better coordinate inpatient/outpatient oncology and community-based palliative care.
doi:10.1200/JOP.2011.000455
PMCID: PMC3219466  PMID: 22379422
10.  Health Insurance and Mammography: Would a Medicare Buy-In Take Us to Universal Screening? 
Health Services Research  2002;37(6):1469-1486.
Objective
To determine whether health insurance expansions via a Medicare buy-in might plausibly increase mammography screening rates among women aged 50–64.
Data Sources
Two waves of the Health and Retirement Study (HRS) (1994, 1996).
Study Design
A longitudinal study with most explanatory variables measured at the second wave of HRS (1994); receipt of mammography, number of physician visits, and breast self exam (BSE) were measured at the third wave (1996).
Data Extraction
Our sample included women aged 50–62 in 1994 who answered the second and third HRS interview (n = 4,583).
Principal Findings
From 1994 to 1996, 72.7 percent of women received a mammogram. Being insured increased mammography in both unadjusted and adjusted analyses. A simulation of universal insurance coverage in this age group increased mammography rates only to 75–79 percent from the observed 72.7 percent. When we accounted for potential endogeneity of physician visits and BSE to mammography, physician visits remained a strong predictor of mammography but BSE did not.
Conclusion
Even in the presence of universal coverage and very optimistic scenarios regarding the effect of insurance on mammography for newly insured women, mammography rates would only increase a small amount and gaps in screening would remain. Thus, a Medicare buy-in could be expected to have a small impact on mammography screening rates.
doi:10.1111/1475-6773.01312
PMCID: PMC1464038  PMID: 12546282
Mammography; health insurance; Medicare buy-in; endogeneity
11.  Lower Extremity Physical Performance, Self-Reported Mobility Difficulty and Use of Compensatory Strategies for Mobility by Elderly Women 
Objective
To describe the relationship between lower extremity physical performance, self-reported mobility difficulty and self-reported use of compensatory strategies for mobility inside the home.
Design
Cross sectional, exploratory study.
Setting
Community-dwelling elders.
Participants
Disabled, cognitively-intact women ≥65 years old (n=1002), from the Women’s Health and Aging Study I.
Interventions
N/A
Main Outcome Measures
Compensatory strategy (CS) scale: No CS, Behavioral Modifications (BM) only, Durable Medical Equipment (DME) with or without use of behavioral modifications, and any use of Human Help (HH); and 3 dichotomous CS measures: Any CS (vs none); DME±HH (vs BM only, among users of any CS); Any HH (vs DME only, among users of any DME/HH).
Results
Self reported mobility difficulty and physical performance were significantly correlated with one another (r=−0.57, p<0.0001) and with the CS Scale (r=0.51, p<0.001 and r=−0.54, p<0.0001 respectively). Sequential logistic regressions showed self reported difficulty and physical performance were significant independent predictors of each category of CS. For the Any CS and DME±HH models, the Odds Ratio (OR) for self reported difficulty decreased by ~50% when physical performance was included in the model, compared to difficulty alone (18.0 to 8.6 and 7.3 to 3.8 respectively), but both physical performance and difficulty remained significant predictors (p<0.0001). The effects of covariates differed for the various CS categories, with some covariates having independent relationships to compensatory strategy, and others appearing to have moderating or mediating effects on the relationship of self reported difficulty or physical performance to CS.
Conclusions
Physical performance, self reported difficulty, health conditions, and contextual factors have complex effects on the way elders carry out mobility inside the home.
doi:10.1016/j.apmr.2010.10.012
PMCID: PMC3072598  PMID: 21272718
Rehabilitation; Geriatrics; Walking; Self-Help Devices
12.  What price for-profit hospitals? 
PMCID: PMC111214  PMID: 12054409
13.  Genetic Testing For Alzheimer’s And Long-Term Care Insurance 
Health affairs (Project Hope)  2010;29(1):102-108.
A genetic marker known as apolipoprotein E provides a clear signal of a person’s risk of developing Alzheimer’s disease and thus that person’s future need for long-term care. People who find that they have the variant of the trait that increases Alzheimer’s disease risk are more likely to purchase long-term care insurance after receiving this information. If the information is widely introduced into the insurance market, coverage rates could be affected in different ways, depending on who possesses that information. Policymakers will eventually need to confront the issue of the use of this and other markers in the pricing of long-term care insurance.
doi:10.1377/hlthaff.2009.0525
PMCID: PMC2931337  PMID: 20048367
14.  Racial differences in influenza vaccination among older americans 1996–2000: longitudinal analysis of the Health and Retirement Study (HRS) and the Asset and Health Dynamics Among the Oldest Old (AHEAD) survey 
BMC Public Health  2003;3:41.
Background
Influenza is a common and serious public health problem among the elderly. The influenza vaccine is safe and effective.
Methods
The purpose of the study was to determine whether frequencies of receipt vary by race, age group, gender, and time (progress from 1995/1996 to 2000), and whether any racial differences remain in age groups covered by Medicare. Subjects were selected from the Health and Retirement Study (HRS) (12,652 Americans 50–61 years of age (1992–2000)) and the Asset and Health Dynamics Among the Oldest Old (AHEAD) survey (8,124 community-dwelling seniors aged 70+ years (1993–2000)). Using multivariate logistic regression, adjusting for potential confounders, we estimated the relationship between race, age group, gender, time and the main outcome measure, receipt of influenza vaccination in the last 2 years.
Results
There has been a clear increase in the unadjusted rates of receipt of influenza vaccination for all groups from 1995/1996 to 2000. However, the proportions immunized are 10–20% higher among White than among Black elderly, with no obvious narrowing of the racial gap from 1995/1996 to 2000. There is an increase in rates from age 50 to age 65. After age 70, the rate appears to plateau. In multivariate analyses, the racial difference remains after adjusting for a series of socioeconomic, health, and health care related variables. (HRS: OR = 0.63 (0.55–0.72), AHEAD: OR = 0.55 (0.44–0.66))
Conclusions
There is much work left if the Healthy People 2010 goal of 90% of the elderly immunized against influenza annually is to be achieved. Close coordination between public health programs and clinical prevention efforts in primary care is necessary, but to be truly effective, these services must be culturally appropriate.
doi:10.1186/1471-2458-3-41
PMCID: PMC320487  PMID: 14678561
15.  Retrospective analysis of census data on general practitioners who qualified in South Asia: who will replace them as they retire? 
BMJ : British Medical Journal  1999;318(7179):306-310.
Objectives
To determine the number and geographical distribution of general practitioners in the NHS who qualified medically in South Asia and to project their numbers as they retire.
Design
Retrospective analysis of yearly data and projection of future trends.
Setting
England and Wales.
Subjects
General practitioners who qualified medically in the countries of Bangladesh, India, Pakistan, and Sri Lanka and who were practising in the NHS on 1 October 1992.
Main outcome measures
Proportion and age of general practitioners who qualified in South Asia by health authority; the Benzeval and Judge measure of population need at the health authority level.
Results
4192 of 25 333 (16.5%) of all unrestricted general practitioners practising full time on 1 October 1992 qualified in South Asian medical schools. The proportion varied by health authority from 0.007% to 56.5%. Roughly two thirds who were practising in 1992 will have retired by 2007; in some health authorities this will represent a loss of one in four general practitioners. The practices that these doctors will leave seem to be in relatively deprived areas as measured by deprivation payments and a health authority measure of population need.
Conclusion
Many general practitioners who qualified in South Asian medical schools will retire within the next decade. The impact will vary greatly by health authority. Those health authorities with the greatest number of such doctors are in some of the most deprived areas in the United Kingdom and have experienced the most difficulty in filling vacancies. Various responses will be required by workforce planners to mitigate the impact of these retirements.
Key messagesCurrently, one in six general practitioners practising full time in the NHS qualified medically in a South Asian medical school; two thirds are likely to retire by 2007It is unlikely that doctors who qualify in South Asia will be a source of general practice recruitment in the futureThe posts from which South Asian qualifiers are retiring may be more difficult to fill because they are often in practices in areas of higher needThere is extreme variation in the proportion of total general practitioners who are South Asian qualifiers; flexibility for policy responses should be maintained
PMCID: PMC27716  PMID: 9924060

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