Publications

We present a case study using the negative binomial regression model for discrete outcome data arising from a clinical trial designed to evaluate the effectiveness of a prehabilitation program in preventing functional decline among physically frail, community-living older persons. The primary outcome was a measure of disability at 7 months that had a range from 0 to 16 with a mean of 2.8 (variance of 16.4) and a median of 1. The data were right skewed with clumping at zero (i.e., 40% of subjects had no disability at 7 months). Because the variance was nearly 6 times greater than the mean, the negative binomial model provided an improved fit to the data and accounted better for overdispersion than the Poisson regression model, which assumes that the mean and variance are the same. Although correcting the variance and corresponding test statistics for overdispersion is a standard procedure in the Poisson model, the estimates of the regression parameters are inefficient because they have more sampling variability than is necessary. The negative binomial model provides an alternative approach for the analysis of discrete data where overdispersion is a problem, provided that the model is correctly specified and adequately fits the data.

OBJECTIVES

To examine the adequacy of caregiver-patient communication in serious illness and its relationship to caregiver burden.

DESIGN

Cross-sectional cohort study.

SETTING

Participants' homes.

PARTICIPANTS

One hundred ninety-three persons aged 60 and older seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers.

MEASUREMENTS

Communication concerns, measured in terms of agreement with statements regarding desire for and difficulty with communication about the patient's illness. Caregiver burden, measured using a 10-item subset of the Zarit Burden Inventory, with scores ranging from 0 to 40 and higher scores indicating greater burden.

RESULTS

Of caregivers, 39.9% desired more communication, and 37.3% reported that communication was difficult. Of patients, 20.2% desired more communication, and 22.3% reported that communication was difficult. Disagreement regarding communication concerns was frequent in caregiver-patient pairs; of caregivers who desired more communication, 83.1% of patients did not, and of patients who desired more communication, 66.7% of caregivers did not. Caregivers who desired more communication had significantly higher caregiver burden scores than did caregivers who did not (9.2 vs 4.7, P<.001), even after adjusting for patient's diagnosis, income, and functional status and caregivers' age, sex, and relationship to the patient.

CONCLUSION

A large proportion of caregivers and seriously ill older persons had an unmet desire for increased communication, although they frequently disagreed with each other about this desire. Caregivers' desire for increased communication may be a modifiable determinant of caregiver burden.

Brief symptom instruments are designed to assess symptoms while maintaining low respondent burden, but they may omit important information. Our objective was to determine whether a representative brief symptom instrument effectively captures the full symptom experience of older adults with advanced diseases. In this cross-sectional study, we interviewed 90 community-dwelling adults with cancer, congestive heart failure, or chronic obstructive pulmonary disease regarding the presence of symptoms in the prior 24 hours. Participants rated the intensity and bothersome nature of 15 symptoms--10 symptoms were included in the Edmonton Symptom Assessment Scale (ESAS) plus 5 supplemental symptoms. Participants reported similar proportions of ESAS and supplemental symptoms. Intensity and "bothersomeness" ratings frequently differed. Brief symptom instruments only provide a limited assessment of the respondent's symptom experience. The benefit obtained from incorporating both the intensity and bothersome nature of a longer list of symptoms may outweigh the potential increase in respondent burden.

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.

Persons with chronic disease experience multiple symptoms. Understanding the association between these symptoms and health outcomes would facilitate a targeted approach to symptom assessment and treatment. Our objectives were to determine the association of a range of symptoms with quality of life, self-rated health, and functional status among chronically ill adults, and to assess methods for evaluating the independent associations of symptoms that may be interrelated. We consecutively enrolled 226 cognitively intact, community-dwelling adults, aged 60 years or older with chronic obstructive pulmonary disease, heart failure, or cancer. Seven symptoms (physical discomfort, pain, fatigue, problems with appetite, feelings of depression, anxiety, and shortness of breath) assessed using the Edmonton Symptom Assessment Scale were examined for their association with self-rated quality of life, self-rated health, and functional status. Principal component analysis and logistic regression revealed similar results. The latter demonstrated that physical discomfort was associated with lower self-rated health (adjusted odds ratio [OR] 1.9; 95% confidence interval 1.2-2.9) and functional disability (adjusted OR 1.8; 95% confidence interval 1.2-2.7). Feelings of depression were associated with poorer quality of life (adjusted OR 1.7; 95% confidence interval 1.1-2.6), and shortness of breath was associated with lower self-rated health (adjusted OR 1.5; 95% confidence interval 1.1-2.0). The association between a range of symptoms and quality of life, self-rated health, and functional status differed across outcomes, but only three symptoms-physical discomfort, feelings of depression, and shortness of breath-maintained their associations when multiple symptoms were examined concurrently. These findings suggest that interventions targeting these symptoms could improve several health-related outcomes.

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.

OBJECTIVES

To determine whether an educational intervention would improve depression assessment and appropriate referral. Secondary analyses tested whether referral led to depression improvement.

DESIGN

Training in the Assessment of Depression (TRIAD) was a three-group, nurse-randomized trial. Researchers interviewed randomly selected patients at baseline and 8 weeks.

SETTING

Three certified home healthcare agencies in Westchester County, New York.

PARTICIPANTS

Fifty-three medical/surgical nurses were randomized within agency to three intervention groups: full, minimal, or control. Research contact with nurses' patients (aged >65; N=477) yielded 256 (53.7%) enrolled subjects, 84 (17.6%) ineligibles, and 120 (25.2%) refusals; 233 of the 256 (87.1%) enrolled patients completed follow-up interviews.

INTERVENTION

Nurse training in clinically meaningful use of depression sections of Medicare's mandatory Outcome and Assessment Information Set (OASIS).

MEASUREMENTS

Nurse-assessed mood or anhedonia (OASIS) versus research assessments using the Structured Clinical Interview for Axis I Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition Disorders (SCID); referrals for mental health evaluation (agency records), and depression severity (24-item Hamilton Depression Rating Scale; HDRS).

RESULTS

Referral rates for patients with (SCID) depressed mood or anhedonia (n=75) varied according to nurse group: 50.0% full intervention, 18.5% minimal, 21.4% control (P=.047). Rates for nondepressed patients (n=180) did not differ (4.9%, 2.0%, 5.8%, respectively; P=.60). In patients with major or minor depression (n=37), referral was associated with symptom improvement. Change in HDRS was 5 points greater in referred patients than others (P=.04). Concordance between OASIS and SCID did not differ between intervention groups.

CONCLUSION

TRIAD showed that training nurses to assess for depression using an approach developed in partnership with home healthcare agencies led to appropriate referral and care for depressed patients.

BACKGROUND

Symptoms are a central component of health status; however, little is known about the full range and trajectory of symptoms experienced by persons with chronic diseases other than cancer.

METHODS

Observational cohort study with interviews performed at least every 4 months for up to 2 years among community-dwelling persons 60 years or older with chronic obstructive pulmonary disease (COPD) or heart failure (HF). Seven symptoms rated as absent, mild, moderate, or severe were assessed at each interview.

RESULTS

Among the 79 participants with COPD, at least 50% reported shortness of breath, physical discomfort, fatigue, and problems with appetite and anxiety. Among the 59 participants with HF, at least 50% reported physical discomfort, fatigue, and problems with appetite at both their initial and final interviews. Both disease-specific and non-disease-specific symptoms increased in severity over time. The prevalence of individual symptoms did not differ according to whether the participants lived or died.

CONCLUSIONS

As a potentially modifiable contributor to poor health status, the high symptom burden among older persons with COPD and HF represents a large unmet need for improved symptom assessment and treatment. This need may not be met by current disease management guidelines, which focus on a small number of symptoms except for patients at the end of life.