Considering the balance: development of a scale to assess patient views on trade-offs in competing health outcomes.

OBJECTIVES: To describe the development of a scale assessing participant attitudes regarding two commonly encountered trade-offs: quality versus quantity of life and present versus future health. DESIGN: Observational cohort study. SETTING: Community. PARTICIPANTS: Three hundred and fifty-seven community-dwelling adults aged 65 and older. MEASUREMENTS: An initial set of 20 items rated on a 5-point Likert scale of agreement was reduced using principal components analysis. Construct validity was evaluated through comparison of the scale with other tools addressing the same trade-offs and analysis of participant characteristics associated with attitudes favoring quality over quantity of life and present over future health. Internal consistency was assessed using Cronbach alpha. Test-retest reliability was assessed using intraclass correlation coefficients (ICCs). RESULTS: The scale consists of two subscales, each addressing one trade-off, with a total of 10 items. All factor loadings were 0.5 and greater, and subscale scores were significantly different (P ≤ .05) in the expected directions when comparing with other tools and with participant race, education, and religious identity. Internal consistency was good (Cronbach α 0.85 and 0.84), and test-retest reliability was fair (ICCs 0.63 and 0.47). Subscale score medians fell near the middle of each scale, with narrow interquartile ranges, but more than 15% of the sample scored at an extreme of each subscale. CONCLUSION: This new scale captures views on two common trade-offs in health care. Although test-retest reliability was modest, its high validity suggests that this tool can be used to familiarize people with common trade-offs and further explore influences on attitudes.

Cognitive impairment in older adults with heart failure: prevalence, documentation, and impact on outcomes.

BACKGROUND: Despite the fact that 80% of patients with heart failure are aged more than 65 years, recognition of cognitive impairment by physicians in this population has received relatively little attention. The current study evaluated physician documentation (as a measure of recognition) of cognitive impairment at the time of discharge in a cohort of older adults hospitalized for heart failure. METHODS: We performed a prospective cohort study of older adults hospitalized with a primary diagnosis of heart failure. Cognitive status was evaluated with the Folstein Mini-Mental State Examination at the time of hospitalization. A score of 21 to 24 was used to indicate mild cognitive impairment, and a score of ≤20 was used to indicate moderate to severe impairment. To evaluate physician documentation of cognitive impairment, we used a standardized form with a targeted keyword strategy to review hospital discharge summaries. We calculated the proportion of patients with cognitive impairment documented as such by physicians and compared characteristics between groups with and without documented cognitive impairment. We then analyzed the association of cognitive impairment and documentation of cognitive impairment with 6-month mortality or readmission using Cox proportional hazards regression. RESULTS: A total of 282 patients completed the cognitive assessment. Their mean age was 80 years of age, 18.8% were nonwhite, and 53.2% were female. Cognitive impairment was present in 132 of 282 patients (46.8% overall; 25.2% mild, 21.6% moderate-severe). Among those with cognitive impairment, 30 of 132 (22.7%) were documented as such by physicians. Compared with patients whose cognitive impairment was documented by physicians, those whose impairment was not documented were younger (81.3 vs 85.2 years, P<.05) and had less severe impairment (median Mini-Mental State Examination score 22.0 vs 18.0, P<.01). After multivariable adjustment, patients whose cognitive impairment was not documented were significantly more likely to experience 6-month mortality or hospital readmission than patients without cognitive impairment. CONCLUSIONS: Cognitive impairment is common in older adults hospitalized for heart failure, yet it is frequently not documented by physicians. Implementation of strategies to improve recognition and documentation of cognitive impairment may improve the care of these patients, particularly at the time of hospital discharge.

Religion, risk, and medical decision making at the end of life.

OBJECTIVE: The purpose of this study is to present empirical evidence about whether religious patients are more or less willing to undergo the risks associated with potentially life-sustaining treatment. METHODS: At least every 4 months 226 older community-dwelling persons with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease were asked questions about several dimensions of religiousness and about their willingness to accept potentially life-sustaining treatment. RESULTS: Results were mixed but persons who said that during their illness they grew closer to God (odds ratio [OR] = 1.79; 95% confidence intervals [CI] = 1.15, 2.78) or those grew spiritually (OR = 1.61; 95% CI = 1.03, 2.52) were more willing to accept risk associated with potentially life-sustaining treatment than were persons who did not report such growth. DISCUSSION: Not all dimensions of religiousness have the same association with willingness to undergo potentially life-sustaining treatment. Seriously ill older, religious patients are not especially predisposed to avoid risk and resist treatment.

Testing measurement reliability in older populations: methods for informed discrimination in instrument selection and application.

OBJECTIVE: The authors recommend confidence intervals as measures of precision for reliability coefficients, regression modeling as supplements for such omnibus reliability statistics, and unreliability detection as a goal of reliability testing distinct from reliability inference. METHODS: Illustrative reliability analyses are conducted on measures selected from a study of clinical features associated with urinary tract infection in older nursing home residents. RESULTS: Standard methods for reliability testing (e.g., kappa coefficients) are often inappropriate for small samples, and exact methods or descriptive reliability statistics are viable alternatives. DISCUSSION: Supplementation of omnibus statistics by loglinear regression modeling is especially appropriate for aging research because it facilitates tests of marginal homogeneity and comparisons of reliability results for relatively young and old subgroups. Latent class regression analysis is useful for older samples because multifactorial health conditions are often measured in multiple ways and assessment of their reliability can be integrated, granting certain assumptions, with validity assessment.

Changes in preferences for life-sustaining treatment among older persons with advanced illness.

BACKGROUND: There are conflicting assumptions regarding how patients' preferences for life-sustaining treatment change over the course of serious illness. OBJECTIVE: To examine changes in treatment preferences over time. DESIGN: Longitudinal cohort study with 2-year follow-up. PARTICIPANTS: Two hundred twenty-six community-dwelling persons age > or =60 years with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease. MEASUREMENTS: Participants were asked, if faced with an illness exacerbation that would be fatal if untreated, whether they would: a) undergo high-burden treatment at a given likelihood of death and b) undergo low-burden treatment at a given likelihood of severe disability, versus a return to current health. RESULTS: There was little change in the overall proportions of participants who would undergo therapy at a given likelihood of death or disability from first to final interview. Diversity within the population regarding the highest likelihood of death or disability at which the individual would undergo therapy remained substantial over time. Despite a small magnitude of change, the odds of participants' willingness to undergo high-burden therapy at a given likelihood of death and to undergo low-burden therapy at a given likelihood of severe cognitive disability decreased significantly over time. Greater functional disability, poorer quality of life, and lower self-rated life expectancy were associated with decreased willingness to undergo therapy. CONCLUSIONS: Diversity among older persons with advanced illness regarding treatment preferences persists over time. Although the magnitude of change is small, there is a decreased willingness to undergo highly burdensome therapy or to risk severe disability in order to avoid death over time and with declining health status.

Prospective study of health status preferences and changes in preferences over time in older adults.

BACKGROUND: Instructional forms of advance care planning depend on the ability of patients to predict their future treatment preferences. However, preferences may change with changes in patients' health states. METHODS: We conducted in-home interviews of 226 older community-dwelling persons with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease at least every 4 months for up to 2 years. Patients were asked to rate whether treatment for their illness would be acceptable if it resulted in 1 of 4 health states. RESULTS: The likelihood of rating as acceptable a treatment resulting in mild (odds ratio [OR], 1.11; 95% confidence interval [CI], 1.06-1.16) or severe (OR, 1.06; 95% CI, 1.03-1.09) functional disability increased with each month of participation. Patients who experienced a decline in their ability to perform instrumental activities of daily living were more likely to rate as acceptable treatment resulting in mild (OR, 1.23; 95% CI, 1.08-1.40) or severe (OR, 1.23; 95% CI, 1.11-1.37) disability. Although the overall likelihood of rating treatment resulting in a state of pain as acceptable did not change over time (OR, 0.98; 95% CI, 0.96-1.01), patients who had moderate to severe pain were more likely to rate this treatment as acceptable (OR, 2.55; 95% CI, 1.56-4.19) than were those who did not have moderate to severe pain. CONCLUSIONS: For some patients, the acceptability of treatment resulting in certain diminished states of health increases with time, and increased acceptability is more likely among patients experiencing a decline in that same domain. These changes pose a challenge to advance care planning, which asks patients to predict their future treatment preferences.

Valuing the outcomes of treatment: do patients and their caregivers agree?

BACKGROUND: Treatment outcomes are an important determinant of patients' treatment preferences. Although studies have examined how well surrogates agree with patients' preferences for specific treatment interventions, agreement regarding the valuation of health states as treatment outcomes is unknown. METHODS: Cross-sectional cohort study consisting of in-home interviews with 193 persons 60 years or older and seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers. Patients were asked whether, facing an exacerbation of illness, they would find a series of health states acceptable as a result of treatment (a rating of "unacceptable" meant they would prefer to die than to receive treatment). Caregivers were asked whether they would find these states acceptable for the patient. RESULTS: There was 80% or greater agreement for health states that were overall rated either acceptable (current health, mild memory impairment, mild pain, or other symptoms) or unacceptable (coma). There was 58% to 62% agreement (kappa = 0.10-0.25) about states with more severe physical or cognitive impairment. When disagreement occurred, caregivers were more likely to rate the state as acceptable. There was 61% to 65% agreement (kappa = 0.20-0.28) about states with severe pain or other symptoms. When disagreement occurred, caregivers and patients were equally likely to rate the state as acceptable. CONCLUSIONS: Patient-caregiver agreement about the acceptability of health states with functional or cognitive impairment, severe pain, or other symptoms was poor. Caregivers making surrogate decisions based on considerations of treatment outcomes may not effectively represent patients' preferences.

Assessment of patient preferences: integrating treatments and outcomes.

OBJECTIVES: The purpose of this study was to develop a patient-centered measure of treatment preference applicable across a range of diseases and treatment decisions. METHODS: Instrument development was based on previous research supplemented by open-ended interviews and focus groups. Psychometric properties of the instrument were determined by administration to 125 persons aged 60 or older with a limited life expectancy secondary to congestive heart failure, chronic obstructive pulmonary disease, or cancer. Test-retest and inter-rater reliability were established using intraclass correlation coefficients. Construct validity was established by examining associations of the measure with a single-item question regarding treatment goals and with age, ethnicity, and functional impairment, characteristics known to be associated with preferences. The Willingness to Accept Life-Sustaining Treatment instrument (WALT) consists of 6 scenarios in which respondents weigh treatment burden against treatment outcomes expressed in terms of the likelihood of different health states and length of life following treatment. RESULTS: Inter-rater reliability ranged from .73 to .95 and test-retest reliability from .49 to .93. WALT scores were significantly associated with a simpler measure of preference and with age, ethnicity, and functional impairment. CONCLUSIONS: The WALT measures patients' treatment preferences, assessed in the context of treatment burden and multiple aspects of treatment outcome with sound psychometric properties.

Pain-related disability among older male veterans receiving primary care.

BACKGROUND: Pain is common among older persons and is associated with substantial disability, but factors that increase the risk for pain-related disability remain poorly defined. We sought to identify factors associated with disability due to pain in a sample of older veterans receiving primary care. METHODS: Participants (N = 494) in this cross-sectional study included male veterans aged 65 years and older who were enrolled in a Veterans Affairs primary care clinic and who reported pain within the prior 12 months. Candidate factors included demographic, psychological, medical, and pain (e.g., intensity, site, duration) characteristics and were ascertained during face-to-face interviews. We assessed participants' level of pain-related disability by asking them to rate on a 0 to 10 scale the extent to which pain interfered with their ability to do daily activities (0 = no interference at all and 10 = no longer doing daily activities due to pain). Patients with scores of 0, 1-6, and 7-10 (approximate upper quartile) were classified as having no, low/moderate, and high pain-related disability. RESULTS: The distribution of pain-related disability was none = 149 (30%), low/moderate = 210 (43%), and high = 135 (27%). Factors associated with high (vs no) pain-related disability included the presence of depressive symptoms, defined as a score of 16 or greater on the Center for Epidemiologic Studies-Depression scale (adjusted odds ratio [AOR] = 3.12, 95% confidence interval [CI] = 1.42-6.85), and pain intensity, defined as a one-unit increase on a 0-10 numeric rating scale (AOR = 1.84, 95% CI = 1.61-2.12). Other factors associated with high pain-related disability included the presence of pain on most days of every month (AOR = 3.59, 95% CI = 1.82-7.08) and low back pain (AOR = 2.36, 95% CI = 1.13-4.94). Depressive symptoms, pain intensity, and the presence of pain on most days of every month were also significantly and independently associated with low/moderate (vs no) pain-related disability. CONCLUSIONS: Pain-related disability is common among older male veterans receiving primary care. As modifiable factors, depressive symptoms and pain intensity are associated with pain-related disability and represent appropriate targets for intervention efforts among older persons with pain.

Understanding the treatment preferences of seriously ill patients.

BACKGROUND: The questions patients are asked about their preferences with regard to life-sustaining treatment usually focus on specific interventions, but the outcomes of treatment and their likelihood affect patients' preferences. METHODS: We administered a questionnaire about treatment preferences to 226 persons who were 60 years of age or older and who had a limited life expectancy due to cancer, congestive heart failure, or chronic obstructive pulmonary disease. The study participants were asked whether they would want to receive a given treatment, first when the outcome was known with certainty and then with different likelihoods of an adverse outcome. The outcome without treatment was specified as death from the underlying disease. RESULTS: The burden of treatment (i.e., the length of the hospital stay, extent of testing, and invasiveness of interventions), the outcome, and the likelihood of the outcome all influenced treatment preferences. For a low-burden treatment with the restoration of current health, 98.7 percent of participants said they would choose to receive the treatment (rather than not receive it and die), but 11.2 percent of these participants would not choose the treatment if it had a high burden. If the outcome was survival but with severe functional impairment or cognitive impairment, 74.4 percent and 88.8 percent of these participants, respectively, would not choose treatment. The number of participants who said they would choose treatment declined as the likelihood of an adverse outcome increased, with fewer participants choosing treatment when the possible outcome was functional or cognitive impairment than when it was death. Preferences did not differ according to the primary diagnosis. CONCLUSIONS: Advance care planning should take into account patients' attitudes toward the burden of treatment, the possible outcomes, and their likelihood. The likelihood of adverse functional and cognitive outcomes of treatment requires explicit consideration.