Symptoms and Symptom Clusters in End Stage Chronic Disease

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DESCRIPTION (provided by applicant): Patients in the advanced stage of several chronic eventually-fatal diseases, including heart disease, obstructive lung disease, cancer, cerebral vascular disease, chronic liver disease and dementia may experience multiple concurrent symptoms caused by the disease, disease treatment, or their combination. Yet, the complex relationships between and among symptoms in these major chronic diseases have not been well described and the impact of multiple symptoms on important outcomes have not been evaluated. This pilot exploratory study focuses on symptoms experienced by older adults in the advanced stage of one chronic eventually-fatal disease, heart failure (HF), using the innovative approach of symptom clusters analysis. Symptom cluster analysis is a multivariate statistical technique, which will identify clusters of individuals with similar patterns across symptoms based on their ratings of symptom distress. A longitudinal descriptive design will be used. A sample of 120 patients with end-stage HF will be recruited from three settings: a hospice and palliative program, a heart failure case management program, and a heart failure treatment clinic. Data will be collected once in participants' homes using an interview format. Patient variables include symptoms (including frequency, severity and distress), all sites of pain, physical, social, and psychological functioning, and co-morbidities. Longitudinal follow-up will occur in 6 months with an analysis of death certificates to determine who in the sample has died. By identifying participants who die, we will be able to determine whether symptom clusters differ for those who do and do not die, and among those who die, whether symptoms clusters vary as a function of the number of months prior to death. Analyses include correlation of individual symptoms and symptom clusters to selected variables, and multivariate analysis to determine symptom cluster predictors of time before death. The results of this study will provide the foundation for future longitudinal studies of symptoms in patients with end-stage HF and in patients with other chronic eventually-fatal conditions. Study results may suggest potential direction for identifying underlying causative mechanisms. Information on symptoms and their patterns in the months preceding death will be essential for developing the much-needed palliative strategies for HF. PUBLIC HEALTH RELEVANCE: As one of the leading causes of death in the U.S. and the only heart disease whose incidence, prevalence, and mortality are increasing, HF is a growing public health concern. Symptom burden is high in end-stage HF and adds to the suffering of patients and families and to the cost of medical care.