Including Symptom Burden Research Articles

Hospital-level variation in angina and mortality at 1 year after myocardial infarction: insights from the Translational Research Investigating Underlying Disparities in Acute Myocardial Infarction Patients' Health Status (TRIUMPH) Registry.

Despite calls to expand measurement of acute myocardial infarction (AMI) outcomes to include symptom burden, little has been done to describe hospital-level variation in this patient-centered outcome, or its association with mortality. Understanding the relationship between symptoms and longer-term mortality could inform the importance of these outcomes for monitoring quality of care. Among 4316 patients with AMI treated at 24 hospitals participating in the Translational Research Investigating Underlying Disparities in Acute Myocardial Infarction Patients' Health Status (TRIUMPH) study, we assessed risk-standardized 1-year symptom burden as measured by the Seattle Angina Questionnaire Angina Frequency Score and mortality attributed to the hospital that provided AMI care. Median odds ratios were used to assess outcome variation and reflect the relative odds of an outcome for 2 patients with identical covariates at different, randomly selected, hospitals. We then evaluated the correlation between hospital-level mortality and angina. Finally, we determined the extent to which variation in mortality and angina was explained by achievement of AMI performance measures. We observed hospital variation in risk-adjusted 1-year mortality (range, 4.9%-8.6%; median odds ratio, 1.30; P=0.01) and angina (range, 17.7%-29.4%; median odds ratio, 1.34; P<0.001). At the hospital level, mortality and angina at 1 year were weakly correlated (r=0.40; 95% confidence interval, 0.00-0.68; P=0.05). Accounting for the quality of AMI care did not attenuate variation in risk-adjusted 1-year mortality or angina. Symptom burden and mortality vary at the hospital level after AMI and are only weakly correlated. These findings suggest that symptom burden should be considered a separate quality domain that is not well captured by current quality metrics.

Self-Efficacy and Health Status in Patients With Coronary Heart Disease: Findings From the Heart and Soul Study

To examine the relationship between cardiac self-efficacy and health status, including symptom burden, physical limitation, quality of life, and overall health among outpatients with stable coronary heart disease (CHD). We hypothesized that lower self-efficacy would predict worse health status, independent of CHD severity and depression. We performed a cross-sectional study of 1024 outpatients with CHD, who were recruited between 2000 and 2002 for the Heart and Soul Study. We administered a validated measure of cardiac self-efficacy, assessed cardiac function using exercise treadmill testing with stress echocardiography, and measured depressive symptoms using the Patient Health Questionnaire. Health status outcomes (symptom burden, physical limitation, and quality of life) were assessed using the Seattle Angina Questionnaire, and overall health was measured as fair or poor (versus good, very good, or excellent). After adjustment for CHD severity and depressive symptoms, each standard deviation (4.5-point) decrease in self-efficacy score was independently associated with greater symptom burden (adjusted odds ratio (OR) = 2.1, p = .001), greater physical limitation (OR = 1.8, p < .0001), worse quality of life (OR = 1.6, p < .0001), and worse overall health (OR = 1.9, p < .0001). Depressive symptoms and poor treadmill exercise capacity were also associated with poor health status, but left ventricular ejection fraction and ischemia were not. Among patients with CHD, low cardiac self-efficacy is associated with poor health status, independent of CHD severity and depressive symptoms. Further study should examine if self-efficacy constitutes a useful target for cardiovascular disease management interventions.

Symptom burden in cancer survivorship

The subjective experience of cancer survivorship can be assessed by various patient-reported outcome (PRO) methods, including measures of symptom burden and health-related quality of life (HRQOL). Symptom burden includes the presence and severity of multiple symptoms and the level of distress caused by symptoms that go untreated or unrelieved. The concept of symptom burden is more limited in scope than HRQOL but may provide information that better describes the status of various stages of survivorship. This paper contrasts symptom burden with general HRQOL and addresses the importance of including symptom burden as research tool throughout the trajectory of cancer survivorship. We summarized studies that illustrate both HRQOL and symptoms as outcomes of treatment and of descriptive studies of cancer survivorship. Survivorship was operationally defined as beginning at the completion of primary anticancer treatment. HRQOL and symptom burden measures both provide meaningful but conceptually different data. Both types of measures are important in portraying aspects of cancer survivorship over time, although symptom burden may provide sufficient information to inform treatment decisions and identify long-term effects of cancer therapies. Cancer survivors are at risk for multiple severe and persistent symptoms, and assessing and monitoring the severity and impact of these multiple symptoms is critical to understanding the survivorship experience. The inclusion of multiple symptom measures along with the development of new and better methods of long-term symptom tracking in survivors is a critical step in improving the heath status of survivors. Late and long-term effects seen in cancer survivors have historically been understudied. Symptom burden is an important area of assessment that can be used to specifically describe the symptoms that distress survivors. More descriptive data in this growing population may help identify biological processes in symptom production and maintenance, and facilitate in the development of better treatment and prevention to enhance cancer survivorship.

Integrating Case Management and Palliative Care

Most seriously ill Americans live at home under the care of their primary physician and with the support of family caregivers. To reduce costs while simultaneously improving the quality of patient care, insurers have increasingly turned to the concept of case management. While case management is targeted to individuals with life-threatening illnesses, palliative care assessment and interventions are typically not included in the management protocols. An academic/care management/health plan partnership between Mount Sinai School of Medicine, Franklin Health, a care management organization, and South Carolina Blue Cross Blue Shield, was formed in 1998 to test the utility of integration of case management with formal palliative care assessment, feedback and recommendations to treating physicians, and ongoing support for implementation of a palliative care plan. The goal of the project was to ensure identification and optimal care of seriously ill patients' complex needs, while facilitating doctor-patient continuity, improving patient/family/physician communication, providing assistance with decision-making, ensuring quality care at home, and promoting efficient use of health care resources. Care management nurses were randomly assigned to a control (usual care) group or to the intervention (palliative care) group. Intervention nurses were trained in formal palliative care assessment and interventions, supported by treatment protocols and communication strategies with treating physicians. Measurements included symptom burden, prescribing practices, advance care planning status, satisfaction, and health care utilization. These results are pending completion of study run-out and analysis. Preliminary programmatic results indicate that combining palliative care with the case management approach is a logical, feasible, and effective strategy to improve the care of seriously ill patients living in the community. Franklin Health has offered the program to their entire client base because they feel that the integration of palliative care into their case management program improved the standard of patient care. Blue Cross Blue Shield of South Carolina has also chosen to sustain this enhanced model of care management for seriously ill patients.

Depressive symptoms and health-related quality of life: the Heart and Soul Study.

Little is known regarding the extent to which patient-reported health status, including symptom burden, physical limitation, and quality of life, is determined by psychosocial vs physiological factors among patients with chronic disease. To compare the contributions of depressive symptoms and measures of cardiac function to the health status of patients with coronary artery disease. Cross-sectional study of 1024 adults with stable coronary artery disease recruited from outpatient clinics in the San Francisco Bay Area between September 2000 and December 2002. Main Measures Measurement of depressive symptoms using the Patient Health Questionnaire (PHQ); assessment of cardiac function by measuring left ventricular ejection fraction on echocardiography, exercise capacity on treadmill testing, and ischemia on stress echocardiography; and measurement of a range of health status outcomes, including symptom burden, physical limitation, and quality of life, using the Seattle Angina Questionnaire. Participants were also asked to rate their overall health as excellent, very good, good, fair, or poor. Of the 1024 participants, 201 (20%) had depressive symptoms (PHQ score > or =10). Participants with depressive symptoms were more likely than those without depressive symptoms to report at least mild symptom burden (60% vs 33%; P<.001), mild physical limitation (73% vs 40%; P<.001), mildly diminished quality of life (67% vs 31%; P<.001), and fair or poor overall health (66% vs 30%; P<.001). In multivariate analyses adjusting for measures of cardiac function and other patient characteristics, depressive symptoms were strongly associated with greater symptom burden (odds ratio [OR], 1.8; 95% confidence interval [CI], 1.3-2.7; P =.002), greater physical limitation (OR, 3.1; 95% CI, 2.1-4.6; P<.001), worse quality of life (OR, 3.1; 95% CI, 2.2-4.6; P<.001), and worse overall health (OR, 2.0; 95% CI, 1.3-2.9; P<.001). Although decreased exercise capacity was associated with worse health status, left ventricular ejection fraction and ischemia were not. Among patients with coronary disease, depressive symptoms are strongly associated with patient-reported health status, including symptom burden, physical limitation, quality of life, and overall health. Conversely, 2 traditional measures of cardiac function-ejection fraction and ischemia-are not. Efforts to improve health status should include assessment and treatment of depressive symptoms.

Historical criteria that distinguish syncope from seizures.

We prospectively sought evidence-based criteria that distinguished between seizures and syncope. Loss of consciousness is usually due to either seizures or syncope. There are no evidence-based historical diagnostic criteria that distinguish them. A total of 671 patients with loss of consciousness completed a 118-item historical questionnaire. Data sets were complete for all subjects. The data set was randomly divided into two equal groups. The contributions of symptoms to diagnoses in one group were estimated with logistic regression and point scores were developed. The accuracy of the decision rule was then assessed using split-half analysis. Analyses were performed with and without inclusion of measures of symptom burden, which were the number of losses of consciousness and the duration of the history. The scores were tested using receiver-operator characteristic analysis. The causes of loss of consciousness were known satisfactorily in 539 patients and included seizures (n = 102; complex partial epilepsy [50 patients] and primary generalized epilepsy [52 patients]) and syncope (n = 437; tilt-positive vasovagal syncope [267 patients], ventricular tachycardia [90 patients] and other diagnoses such as complete heart block and supraventricular tachycardias [80 patients]). The point score based on symptoms alone correctly classified 94% of patients, diagnosing seizures with 94% sensitivity and 94% specificity. Including symptom burden did not significantly improve accuracy, indicating that the symptoms surrounding the loss of consciousness accurately discriminate between seizures and syncope. A simple point score of historical features distinguishes syncope from seizures with very high sensitivity and specificity.