Palliative care is increasingly viewed as a care option that should not only be offered to patients very near the end of life. An important question is whether increased use of palliative care soon after a patient's referral will improve patient functioning, an aspect of quality of life.
The aim of this study was to determine if increased use of palliative care is associated with increased patient functioning.
The Carolinas Palliative Care Database Consortium collects palliative care encounter data from a variety of providers, settings, and patients, and it measures patient functioning, allowing us to test the hypothesis that increased use of palliative care early in a patient's palliative care experience will improve patient functioning.
After controlling for other factors that could explain patient functioning, we find that each additional palliative care visit during the first month of follow-up increases patient functioning measured using an area under the curve (AUC) approach (0.008 per visit, p=0.01). However, patient functioning as measured at the initial visit is a far stronger predictor of subsequent functioning (0.52, p<0.001) than are additional palliative care visits.
Increased use of palliative care was associated with improved patient functioning. This held true at very low as well as very high levels of initial functioning. The strongest predictor of subsequent patient functioning is their initial status. Accounting for patient-specific differences to precisely determine the impact of palliative care on patient functioning is difficult.
The authors found that cost-related medication nonadherence was prevalent among patients with cancer who sought financial assistance.
The relationship between prescription medication adherence and financial burden is understudied, particularly in patients seeking financial assistance.
We conducted a cross-sectional survey to examine the association between patient-reported prescription medication nonadherence and financial distress. Eligible patients were adults receiving treatment for solid malignancies enrolled between June 2010 and May 2011 from the HealthWell Foundation, a national copay assistance program. Nonadherence was defined as taking less medication than prescribed because of cost, not filling or partially filling a prescription because of cost, or taking medications prescribed for others. Logistic regression assessed associations between medication nonadherence and patient-reported, subjective financial distress.
Among 164 participants, 45% reported cost-related medication nonadherence. Four percent took medications prescribed for another person, 22% took less medication than prescribed, 25% filled a partial prescription, and 27% did not fill a prescription, all as a result of cost. Nonadherent participants were more likely than adherent participants to reduce spending on basics like food and clothing to pay for medication (P = .01), and borrow and/or use credit to pay for medications (P < .01). In adjusted analyses, financial distress did not change odds of nonadherence (odds ratio [OR] = 1.60; 95% CI, 0.71 to 3.60). Having a prescription drug plan (OR = 0.27; 95% CI, 0.09 to 0.83) and older age (OR = 0.48; 95% CI, 0.27 to 0.85) decreased odds of nonadherence. Being unemployed increased odds of nonadherence (OR = 6.28; 95% CI, 1.60 to 24.64).
Cost-related medication nonadherence was prevalent among cancer patients who sought financial assistance. Further investigation is needed to understand predictors of prescription medication adherence, a key component of quality care.
Concerns about unsustainable costs in the US Medicare program loom as the number of retirees increase and experiences serious and costly illnesses like cancer. Engagement of stakeholders, particularly cancer patients and their families, in prioritizing insured services offers a valuable strategy for informing Medicare coverage policy. We designed and evaluated a decision exercise that allowed cancer patients and family members to choose Medicare benefits for advanced cancer patients.
The decision tool, Choosing Health plans All Together (CHAT) was modified to select services for advanced cancer patients. Patients with a cancer history (N = 246) and their family members (N = 194) from North Carolina participated in 70 CHAT sessions. Variables including participants’ socio-demographic characteristics, health status, assessments of the exercise and results of group benefit selections were collected. Routine descriptive statistics summarized participant characteristics and Fisher’s exact test compared group differences. Qualitative analysis of group discussions were used to ascertain reasons for or against selecting benefits.
Patients and family members (N = 440) participated in 70 CHAT exercises. Many groups opted for such services as palliative care, nursing facilities, and services not currently covered by the Medicare program. In choosing among four levels of cancer treatment coverage, no groups chose basic coverage, 27 groups (39%) selected intermediate coverage, 39 groups (56%) selected high coverage, and 4 groups (6%) chose the most comprehensive cancer coverage. Reasons for or against benefit selection included fairness, necessity, need for prioritizing, personal experience, attention to family needs, holistic health outlook, preference for comfort, freedom of choice, and beliefs about the proper role of government. Participants found the exercise very easy (59%) or fairly easy (39%) to understand and very informative (66%) or fairly informative (31%). The majority agreed that the CHAT exercise led to fair decisions about priorities for coverage by which they could abide.
It is possible to involve cancer patients and families in explicit discussions of their priorities for affordable advanced cancer care through the use of decision tools designed for this purpose. A key question is whether such a conversation is possible on a broader, national level.
Medicare; Hospice benefit; Health priorities; Insurance benefits; Public participation
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.
Dementia costs; medicare; sensitivity; specificity
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.
Respondents to the National Longitudinal Caregiver Survey were wife caregivers of veterans with dementia who were identified through Veterans Affairs hospitals nationally.
Mean number of depressive symptoms as measured using the Center for Epidemiologic Studies Depression scale (CES-D, 20-item scale).
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.
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.
depression; caregiving; Latent Class Trajectory Analysis; dementia; spouses
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.
informal caregiving; longitudinal methods; burden of Alzheimer disease/dementia
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.
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.
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.
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.
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.
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.
Neoplasms; Cost; Chemotherapy; Indigency; Medical; Quality of health care; Financial support
To estimate the proportion of seniors with dementia from three independent data sources and their agreement.
The longitudinal Asset and Health Dynamics among the Oldest Old (AHEAD) study (n=7,974), Medicare claims, and death certificate data.
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.
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.
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.
Dementia; cognitive impairment; longitudinal health surveys; health surveys; Medicare claims data; death certificates; agreement
To determine whether difficulty walking and the strategies persons use to compensate for this deficit influenced downstream Medicare expenditures.
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).
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.
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).
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.
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.
Mobility impairment; disability; medicare; access; costs
To determine whether seniors understand their risk of moving to a nursing home.
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.
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.
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.
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.
Nursing home; long-term care; risk perception; insurance
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.
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.
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.
Efforts to encourage smoking cessation should emphasize the impact of these factors on quality of life.
Smoking; quality of life; years of healthy life; longitudinal study; middle aged; elderly
To determine whether health insurance expansions via a Medicare buy-in might plausibly increase mammography screening rates among women aged 50–64.
Two waves of the Health and Retirement Study (HRS) (1994, 1996).
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).
Our sample included women aged 50–62 in 1994 who answered the second and third HRS interview (n = 4,583).
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.
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.
Mammography; health insurance; Medicare buy-in; endogeneity
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.
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.
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.
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.
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.
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.
Cross sectional, exploratory study.
Disabled, cognitively-intact women ≥65 years old (n=1002), from the Women’s Health and Aging Study I.
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).
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.
Physical performance, self reported difficulty, health conditions, and contextual factors have complex effects on the way elders carry out mobility inside the home.
Rehabilitation; Geriatrics; Walking; Self-Help Devices
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.
Influenza is a common and serious public health problem among the elderly. The influenza vaccine is safe and effective.
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.
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))
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.
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.
Retrospective analysis of yearly data and projection of future trends.
England and Wales.
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.
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.
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