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Biomedical subjects

Jason H T Karlawish

Publications and source records attributed to Jason H T Karlawish.

At least 19 recordsLinked to original sources
PubMed2006

Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person?

OBJECTIVE: The objective of this study was to identify what standard of decision making a family member uses when making medical decisions for their relative with advanced dementia. METHODS: Thirty family members of patients with advanced dementia from an Alzheimer disease center and a suburban long-term care facility were interviewed using a semistructured interview. All interviews were audiotaped, transcribed, and analyzed using qualitative data analysis techniques. RESULTS: Family members were split almost evenly in the standard they used when making medical decisions for their relative: substituted judgment (43%) or best interests (57%). However, few who used the substituted judgment standard viewed it as distinct from best interests. Instead, both standards were taken into consideration when making medical decisions. In addition to not having discussions about healthcare preferences, the reasons for not using a substituted judgment included: the need for family consensus, unrealistic expectations of the patient, the need to incorporate their relative's quality of life into the decision, and the influence of healthcare professionals. Family members who did not have discussions about healthcare preferences identified various barriers to the discussion, including waiting too long, avoiding the topic, and the patient's denial of dementia. CONCLUSION: These data suggest several reasons why surrogate decision-makers for persons with advanced dementia do not use the substituted judgment standard and the potential value of interventions that would allow patients with early-stage dementia and their family members to discuss healthcare preferences.

Aged↗
PubMed2005

Do Alzheimer's disease patients want to participate in a treatment decision, and would their caregivers let them?

PURPOSE: This study was designed to examine the factors associated with the preferences of Alzheimer's disease patients to participate in a decision to use an Alzheimer's disease-slowing medication and how involved their caregivers would let them be in this decision. DESIGN AND METHODS: Interviews were conducted with 48 patients in the mild-to-moderate stage of Alzheimer's disease and their caregivers. RESULTS: Ninety-two percent of patients indicated they would participate in an Alzheimer's disease treatment decision, whereas 71% of caregivers thought the patient would participate. Half of the caregivers who indicated that their relatives would participate had relatives who did not have the capacity to make the decision based on a consensus of three expert psychiatrists. Patients' insight into their diagnosis and prognosis, and having less cognitive impairment, being a female caregiver, and being a spousal caregiver were all associated with the likelihood that the patient would participate in the treatment decision. Patients talked about wanting to be involved in the process of making a treatment decision, whereas caregivers talked about assessing whether their relative could participate in the process of decision making. IMPLICATIONS: Mild-to-moderate stage Alzheimer's disease patients want to be involved in making treatment decisions, and caregivers are generally willing to involve them. Caregivers of Alzheimer's disease patients talk about patient participation in relation to elements of the capacity to make a treatment decision. Clinicians can provide guidance and education to assist caregivers in understanding how to assess their relatives' abilities to make decisions and navigate the decision-making process.

Aged↗
PubMed2005

Would caregivers of Alzheimer disease patients involve their relative in a decision to use an AD-slowing medication?

OBJECTIVES: The authors examined the factors associated with 1) caregivers' willingness to involve a relative with Alzheimer disease (AD) in a decision to use an AD-slowing treatment; and 2) how caregivers would resolve a disagreement over this decision with the their relative. METHODS: This was a cross-sectional interview study of 102 caregivers of patients with mild-to-severe-stage AD, enrolled in a University Memory Disorders Clinic. RESULTS: Forty-four percent of caregivers (45/102) said that his or her relative would participate in a decision to use an AD-slowing treatment. Logistic regression showed that having less dementia severity, being a female caregiver, and a spousal relationship were all associated with caregivers' involving their relative in this decision. Among the caregivers who said they would involve their relative, the majority said they would resolve disagreements over whether to use the treatment in favor of what the patient wanted, versus what the family wanted for the patient. Male caregivers were less likely to resolve disagreements in favor of the patients' preferences. CONCLUSION: Although most caregivers of patients in mild-to-moderate stages would include these patients in an AD treatment decision, certain caregiver characteristics, such as gender and relationship, are associated with not involving patients in this decision. Physicians working with dementia patients and their family members should take these characteristics into account when discussing treatment options and work with patient-caregiver dyads to improve the communication of preferences.

Adult↗
PubMed2005

How do patients with Alzheimer disease rate their overall quality of life?

OBJECTIVE: The authors asked how Alzheimer disease (AD) patients assess their overall quality of life (QOL) and sought to determine the characteristics associated with this assessment. METHODS: The authors performed a cross-sectional survey of 193 persons with mild-to-severe-stage AD in a University Memory Disorders Clinic using a single-item self-assessment of overall QOL. RESULTS: The 181 of 193 patients (94%) able to complete a single-item QOL self-rating had less severe dementia than patients not able to complete, but some had Mini-Mental State Exam scores as low as 0. Most patients rated their QOL as "good" (35%) or "very good" (36%). Latino patients, patients with less education, and depressed patients were more likely to rate their QOL lower. Among patients able to estimate how they thought their family caregiver would rate their QOL (N=173; 90%), there was moderate agreement between this estimate and their self-ratings. CONCLUSION: A single-item global rating of patient QOL could prove useful in assessing QOL of most mild-to-severe-stage AD patients. Affective impairment, more than cognitive or functional impairment, drives this assessment. Screening for and addressing depressive symptoms could improve AD patients' QOL. Despite impairments in insight, patients see a difference in how their caregivers would rate their QOL.

Aged↗
PubMed2004

Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials.

BACKGROUND: Paying patients to participate in clinical trials is ethically controversial. However, there has been no empirical documentation regarding whether payment represents an undue or unjust inducement. METHODS: To evaluate these questions, we described hypothetical placebo-controlled trials of a new antihypertensive drug to 126 patients with mild-to-moderate hypertension recruited from hypertension and general medicine clinics at a university hospital. Using a 3 x 3, within-subjects design, we altered a risk to participation (either adverse effect rate or rate of randomization to placebo) and the payment participants would receive ($100, $1000, and $2000) and asked patients to indicate their willingness to participate (WTP) in each trial using a 6-point scale. RESULTS: Clustered ordinal logistic regression models revealed that patients' WTP decreased with higher risk of adverse effects (P<.001), higher risk of being assigned to placebo (P =.02), and lower payment level (P<.001). There were no significant interactions between payment level and either risk variable, suggesting that increasing payments do not alter peoples' perceptions of risk. There was a trend toward a positive interaction between income and the influence of payment on WTP (P =.09), suggesting that payment more strongly influences WTP among wealthier people. Wealthier patients were more likely to state that payment was important in their participation decision (37% vs 20%, P =.05). CONCLUSION: Although higher payment motivates research participation, we found no evidence that commonly used payment levels represent undue or unjust inducements.

Antihypertensive Agents↗
PubMed2004

Are depressed patients more likely to share health care decisions with others?

OBJECTIVES: To determine whether psychological variables, particularly depression, influence patients' willingness to share medical decisions with family members or friends. DESIGN: Cross-sectional interviews. SETTING: Oncology and general geriatrics outpatient clinics of an urban VA medical center. PARTICIPANTS: Ninety-five patients with a Charlson comorbidity index score greater than 5. MEASUREMENTS: Subjects described the way that they make health care decisions with friends or family as a dichotomous variable ("shared" versus "not shared") and as a 5-point ordinal variable (the degree to which they share decisions). Patients also completed the 15-item version of the Geriatric Depression Scale (GDS), the Global Distress Index of the Memorial Symptom Assessment Scale, and selected tests of cognitive function and health literacy. RESULTS: Patients with a GDS score higher than 5 were more likely to share decision-making (16/26 versus 26/69; odds ratio 2.58; p = 0.040), as were patients who were married (23/35 versus 19/60; odds ratio 3.63; p = 0.001). In multivariable regression models, a short form GDS score higher than 5 was independently associated with a willingness to share decision with others. CONCLUSION: These results suggest that depression may have a clinically significant influence on patients' willingness to share health care decisions with others. Health care providers should be alert to this possibility, particularly when the decision at hand is significant.

Adult↗
PubMed2004

The development of a rapid screen for caregiver burden.

OBJECTIVES: To develop a shortened screen for burden associated with caring for a patient with Alzheimer's disease (AD). DESIGN: Cross-sectional. SETTING: The Memory Disorders Clinic of an AD center. PARTICIPANTS: Two hundred fifty-one AD patient-caregiver dyads. MEASUREMENTS: Screen for Caregiver Burden (SCB), Center for Epidemiologic Studies Depression scale, Medical Outcomes Short Form, Mini-Mental State Examination, and patient and caregiver characteristics. RESULTS: At least 25% of the sample endorsed eight of the 25 items in the SCB subjective burden (SB) scale. Of these eight items with a prevalence of 25% or greater endorsement, seven items had item-total correlations of 0.55 or greater. The shortened seven-item SCB SB had an alpha of 0.86, indicating that the shortened scale has good internal consistency (Full SCB SB alpha=0.88). The seven-item SCB SB was highly associated with depression and overall mental health measures. CONCLUSION: This shortened version of the SCB allows a clinician to rapidly assess the burden associated with caregiving for a person with AD.

Adult↗
PubMed2004

How does an Alzheimer's disease patient's role in medical decision making change over time?

As persons with Alzheimer's disease (AD) lose their ability to make decisions, someone else has to make decisions for them. We performed a prospective cohort study of 77 AD patient-caregiver dyads to examine when this transition occurs. When dementia severity surpassed a threshold marked by a Mini-Mental State Examination (MMSE) score less than 20, the level of caregiver-reported patient involvement in the medical decision-making process declined (Moderate [MMSE = 19-12]: Odds Ratio [OR] = 2.35, 95% confidence interval [95% CI] = 1.01-5.49; P =.048; Severe [MMSE < 12]: OR = 29.38, 95% CI = 5.98-144.25, P <.001). Furthermore, older patients (OR = 1.06, 95% CI = 1.00-1.12, P =.049) and mounting caregiver burden (OR = 1.12, 95% CI = 1.04-1.26, P =.003) were significant independent predictors of transitions to the caregiver-dominated medical decision-making process. These results provide clinicians with prognostic information that can help caregivers understand how their role in decision making will change over the course of a patient's dementing illness.

Age Factors↗
PubMed2003

Alzheimer disease: current concepts and emerging diagnostic and therapeutic strategies.

Alzheimer disease is a complex neurodegenerative dementing illness. It has become a major public health problem because of its increasing prevalence, long duration, high cost of care, and lack of disease-modifying therapy. Over the past few years, however, remarkable advances have taken place in understanding both the genetic and molecular biology associated with the intracellular processing of amyloid and tau and the changes leading to the pathologic formation of extracellular amyloid plaques and the intraneuronal aggregation of hyperphosphorylated tau into neurofibrillary tangles. The identification of disease-causing autosomal dominant mutations as well as gene polymorphisms that alter the risk for pathology indicate that Alzheimer disease is a genetically complex disorder. This progress in our understanding of the molecular pathology has set the stage for clinically meaningful advances in diagnosis and treatment. Emerging diagnostic methods that are based on biochemical and imaging biomarkers of disease-specific pathology hold the potential for accurately diagnosing Alzheimer disease at the earliest stage of the illness--the time when disease-modifying treatment will be most effective. Currently available cholinesterase inhibition therapy targets the cognitive symptoms. However, the goal of new therapies under development is halting the pathologic cascade and potentially reversing the course of the disease. If these new therapies are successful, they will represent a remarkable medical advance for patients and the families who care for them.

Alzheimer Disease↗
PubMed2003

Diagnostic evaluation of elderly patients with mild memory problems.

This case-based discussion focuses on the clinical presentation and diagnostic assessment of a uniquely challenging group of elderly patients: those with symptoms of mild memory problems. Such patients present a challenge to clinicians because of flux in our understandings of normal, age-related cognitive changes; of cognitive changes due to neurodegenerative illnesses; and of the relationships between depression and cognitive impairment. In addition, symptoms of memory problems may be reported by an observer rather than by the patient. These challenges warrant stepwise evaluation of elderly patients who present with symptoms of memory loss.

Activities of Daily Living↗
PubMed2003

Hypertensive patients' willingness to participate in placebo-controlled trials: implications for recruitment efficiency.

BACKGROUND: Underenrollment and selective enrollment plague many clinical trials. Little is known about why hypertensive patients agree or refuse to participate in placebo-controlled trials (PCT) of antihypertensive drugs, whether the prospect of receiving placebo influences willingness to participate (WTP), or whether patients who participate differ from those who do not. METHODS: We described a hypothetical PCT of a new antihypertensive drug to 126 patients who would be eligible for ongoing phase III trials. We solicited patient motivations and concerns regarding trial participation by using open-ended questions, assessed the patients' stated WTP, and used logistic regression to determine patient characteristics associated with WTP. We reassessed WTP in 62 patients after revealing, in random order, that 10%, 30%, and 50% of patients would receive placebo. RESULTS: The most commonly cited motivations for participating included personal health benefits (40%), helping other patients (37%), and contributing to scientific knowledge (15%). The most common concerns were having to stop current medications (56%), inconvenience/annoyance (38%), fear of known side effects (35%), and the possibility of receiving placebo (24%). Overall, 47% of patients (95% confidence interval, 38% to 56%) were willing to participate. Younger patients (57% versus 37%; P =.01), nonsmokers (50% versus 24%; P =.04), and patients who had participated in research previously (77% versus 20%; P =.009) were all significantly more willing to participate. Fewer patients were willing to participate as the percentage who would receive placebo increased (P =.02), but randomly assigning fully half of patients to placebo still yielded maximal recruitment efficiency. CONCLUSIONS: Hypertensive patients participate in trials for altruistic and personal health reasons. Differences between patients who do or do not participate may influence trial outcomes. The proportion of patients receiving placebo influences some patients' enrollment decisions but is not a key determinant of recruitment efficiency.

Altruism↗
PubMed2003

Conducting research that involves subjects at the end of life who are unable to give consent.

This paper examines the conditions that describe when it is appropriate to conduct research that enrolls a subject near the end-of-life who cannot provide an informed consent. Specifically, it describes conditions that justify when it is acceptable to expose a person to the risks, burdens or discomforts of an intervention that is not intended to benefit that person but to produce generalizable knowledge that will benefit other people. These conditions are: (1) acceptable research risks, (2) proxy decision making, (3) subject assent and dissent, and (4) subject advance consent.

Ethics, Research↗
PubMed2003

Identifying ambulatory cancer patients at risk of impaired capacity to consent to research.

Ethicists and others have expressed concerns that some patients with cancer might lack adequate decision-making capacity to give consent for research. Although this concern is plausible, it is not known what patient characteristics might be used to identify those patients who are at risk and who therefore should undergo a formal assessment of decision-making capacity. Forty-five patients with cancer were presented with a description of a randomized controlled trial, accompanied by an Institutional Review Board-approved consent form. Two raters who were blind to all patient characteristics assessed decision-making capacity using the MacArthur Competency Assessment Tool for Clinical Research. These scores were summarized in overall capacity judgments using criteria established by a panel of experts. Subjects also completed a symptom rating scale and a battery of neuropsychiatric tests. No relationship was observed between symptom severity and any domain of decision-making capacity (understanding, appreciation, reasoning, ability to express a choice) or summary judgments. However, several other patient characteristics, including age, education, and selected neuropsychiatric test results, were found to be strongly associated with capacity scores. These data suggest that several patient characteristics, such as age, education, and tests of cognitive functions, may help investigators to identify patients with impaired capacity to give consent for research.

Aged↗
PubMed2003

Why would caregivers not want to treat their relative's Alzheimer's disease?

OBJECTIVES: To determine family caregivers' willingness to use Alzheimer's disease (AD)-slowing medicines and to examine the relationships between this willingness, dementia severity, and caregiver characteristics. DESIGN: Cross-sectional survey. SETTING: In-home interviews of patients from the Memory Disorders Clinic of the University of Pennsylvania's Alzheimer's Disease Center. PARTICIPANTS: One hundred two caregivers of patients with mild to severe AD who were registered at an Alzheimer's disease center. MEASUREMENTS: Subjects participated in an in-home interview to assess their willingness to use a risk-free AD-slowing medicine and a medicine with 3% annual risk of gastrointestinal bleeding. RESULTS: Half of the patients had severe dementia (n=52). Seventeen (17%) of the caregivers did not want their relative to take a risk-free medicine that could slow AD. Half (n=52) did not want their relative to take an AD-slowing medicine that had a 3% annual risk of gastrointestinal bleeding. Caregivers who were more likely to forgo risk-free treatment of AD were older (odds ratio (OR)=1.7, P=.04), were depressed (OR=3.66, P=.03), had relatives living in a nursing home (OR=3.6, P=.02), had relatives with more-severe dementia according to the Mini-Mental State Examination (MMSE) (OR=2.29, P=.03) or Dementia Severity Rating Scale (DSRS) (OR=2.55, P=.002), and rated their relatives' quality of life (QOL) poorly on a single-item global rating (OR=0.25, P=.001) and the 13-item quality-of-life (QOL)-AD scale (OR=0.38, P=.002). Caregivers who were more likely to forgo a risky treatment were nonwhite (OR=6.53, P=.005), had financial burden (OR=2.93, P=.02), and rated their relative's QOL poorly on a single-item global rating (OR=0.61, P=.01) and the QOL-AD (OR=0.56, P=.01). CONCLUSION: These results suggest that caregivers are generally willing to slow the progression of their relative's dementia even into the severe stage of the disease, especially if it can be done without risk to the patient. Clinical trials and practice guidelines should recognize that a caregiver's assessment of patient QOL and the factors that influence it affect a caregiver's willingness to use AD-slowing treatments.

Alzheimer Disease↗