Lara Dhingra1, Malcolm Barrett2, Helena Knotkova3, Jack Chen4, Alexa Riggs4, Bernard Lee5, Barbara Hiney6, Maureen McCarthy7, Russell Portenoy8. 1. MJHS Institute for Innovation in Palliative Care, New York, New York, USA; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York, USA. Electronic address: LDhingra@mjhs.org. 2. University of Southern California, Los Angeles, California, USA. 3. MJHS Institute for Innovation in Palliative Care, New York, New York, USA; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York, USA. 4. MJHS Institute for Innovation in Palliative Care, New York, New York, USA. 5. Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York, USA; MJHS Hospice and Palliative Care, New York, New York, USA. 6. MJHS Hospice and Palliative Care, New York, New York, USA. 7. The Center for Hospice & Palliative Care, New York, New York, USA. 8. MJHS Institute for Innovation in Palliative Care, New York, New York, USA; Department of Family and Social Medicine, Albert Einstein College of Medicine, Bronx, New York, USA; 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.
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.
Authors: Laura S Porter; Gregory Samsa; Jennifer L Steel; Laura C Hanson; Thomas W LeBlanc; Janet Bull; Stacy Fischer; Francis J Keefe Journal: Clin Trials Date: 2019-02-19 Impact factor: 2.486
Authors: Lissi Hansen; Michael F Chang; Shirin Hiatt; Nathan F Dieckmann; Karen S Lyons; Christopher S Lee Journal: Dig Dis Sci Date: 2021-08-27 Impact factor: 3.487
Authors: Laura M Perry; Victoria Morken; John D Peipert; Betina Yanez; Sofia F Garcia; Cynthia Barnard; Lisa R Hirschhorn; Jeffrey A Linder; Neil Jordan; Ronald T Ackermann; Alexandra Harris; Sheetal Kircher; Nisha Mohindra; Vikram Aggarwal; Rebecca Frazier; Ava Coughlin; Katy Bedjeti; Melissa Weitzel; Eugene C Nelson; Glyn Elwyn; Aricca D Van Citters; Mary O'Connor; David Cella Journal: JMIR Res Protoc Date: 2022-09-21