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Symptom Distress Among Diverse Patients Referred for Community-Based Palliative Care: Sociodemographic and Medical Correlates
Authors:Lara Dhingra  Malcolm Barrett  Helena Knotkova  Jack Chen  Alexa Riggs  Bernard Lee  Barbara Hiney  Maureen McCarthy  Russell Portenoy
Affiliation:1. MJHS Institute for Innovation in Palliative Care, New York, New York, USA;2. Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York, USA;3. University of Southern California, Los Angeles, California, USA;4. MJHS Hospice and Palliative Care, New York, New York, USA;5. The Center for Hospice & Palliative Care, New York, New York, USA;6. Department of Neurology, Albert Einstein College of Medicine, Bronx, New York, USA
Abstract:

Context

Community-based palliative care programs are appearing in the U.S. Many of these programs, particularly those in large cities, serve highly diverse populations. Information about the sources of variation in the conditions that drive illness burden, like symptom distress, may be useful in program planning.

Objectives

To characterize variation in symptom distress among highly diverse patients referred for palliative care in an urban setting.

Methods

This is a retrospective cross-sectional survey of data obtained from patients at the time of enrollment in a community-based palliative care program. Symptom distress was measured using the Condensed Memorial Symptom Assessment Scale. Severe distress was defined as reporting either “quite a bit”/“very much” or “frequently”/“almost constantly” for one or more symptoms. Multivariate analysis evaluated the associations between symptom distress and sources of patient variability.

Results

Patients (n = 1532) were aged 72.2 years on average; 60.0% were women, 56.4% were African-American or Hispanic, and 30.8% were non-English speaking. Most had cancer or congestive heart failure (68.6%); 90.2% had a Karnofsky Performance Status score of 40–70. The most prevalent symptoms were fatigue (71.8%), pain (47.3%), and sadness (41.6%); the most distressing symptoms were fatigue (58.5%), worrying (54.8%), and weight loss (52.1%). In multivariate analyses, Caucasian race, non-Asian language, low Karnofsky Performance Status scores, and cancer diagnosis predicted severe symptom distress.

Conclusion

In a diverse urban population receiving community-based palliative care, symptoms were highly prevalent and distressing, and both sociodemographic and medical factors predicted severe distress. Program planning should consider the needs of subpopulations at risk for high symptom burden.
Keywords:Community-based palliative care  specialist care  health disparities  symptom distress  symptom prevalence  Condensed Memorial Symptom Assessment Scale  AUC
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