Symptom Distress Among Diverse Patients Referred for Community-Based Palliative Care: Sociodemographic and Medical Correlates.

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.

A High-Touch Model of Community-Based Specialist Palliative Care: Latent Class Analysis Identifies Distinct Patient Subgroups.

CONTEXT: Community-based palliative care may support seriously ill homebound patients. Programs vary widely, and few studies have described the heterogeneity of the populations served or service delivery models. OBJECTIVES: To evaluate a diverse population served by an interdisciplinary model of community-based specialist palliative care and the variation in service delivery over time and identify subgroups with distinct illness burden profiles. METHODS: A retrospective cohort study evaluated longitudinal electronic health record data from 894 patients served during 2010-2013. Illness burden was defined by measures of performance status (Karnofsky Performance Status scale), symptom distress (Condensed Memorial Symptom Assessment Scale), palliative care needs (Palliative Outcome Scale), and quality of life (Spitzer Quality of Life Index). Service utilization included the frequency of visits received and calls made or received by patients. Latent class analysis identified patient subgroups with distinct illness burden profiles, and mixed-effects modeling was used to evaluate associations between patient characteristics and service utilization. RESULTS: The mean age was 72.3 years (SD = 14.0); 56.2% were women; 67.5% were English speaking; and 22.2% were Spanish speaking. Most had congestive heart failure (36.4%) or cancer (30.4%); 98.0% had a Karnofsky Performance Status score of 40-70. Four patient subgroups were identified: very low illness burden (26.2%); low burden (39.5%); moderate burden (13.5%); and high burden (20.8%). The subgroups differed in both baseline characteristics and palliative care service utilization over time. CONCLUSION: The population served by a community-based specialist palliative care program manages patients with different levels of illness burden, which are associated with patient characteristics and service utilization.

Hospice Enrollment After Referral to Community-Based, Specialist-Level Palliative Care: Incidence, Timing, and Predictors.

CONTEXT: Referral to community-based palliative care may increase the likelihood of hospice enrollment. OBJECTIVES: This retrospective cohort study evaluated the incidence, timing, and predictors of hospice enrollment after referral to a community-based palliative care program. METHODS: Data from 1505 homebound patients referred to community-based palliative care during 2010-2013 were analyzed using multivariate linear and logistic regression. RESULTS: Mean (SD) age was 70.4 (16.7) years; 58.8% were women, and race/ethnicity was diverse (white 32.9%, black 29.8%, Hispanic 28.6%, Asian 5.4%). Patients received palliative care services for a mean (SD) of 10.2 (10.2) months (median 6.9; range 0.03-52.2 months). A total of 362 patients (24.1%) were enrolled in hospice after receiving palliative care services for a mean (SD) of 4.8 (6.8) months (median 7.9; range 0.09-25.7 months). The median hospice length of stay was approximately twice as long as other patients enrolled in hospice during the same period. The probability of hospice enrollment increased with shorter duration of palliative care, cancer diagnosis, poorer performance status, and a lower likelihood of poverty. Similarly, significant predictors of a shorter duration of palliative care services before hospice enrollment included both sociodemographic and clinical factors. CONCLUSION: Almost one-quarter of patients were enrolled in hospice while receiving community-based palliative care, and hospice length of stay was relatively long for those who did. Both sociodemographic and clinical characteristics were associated with hospice-related outcomes. Studies are needed to further explore predictors and outcomes of hospice enrollment from palliative care.