Chronic Illness Therapy-Palliative Care Research Articles

The Role of Palliative Care in Heart Failure, Part 2: Characteristics of Patients Undergoing Outpatient Palliative Care Evaluation for Advanced Cardiac Therapies.

Background: Characteristics of patients undergoing outpatient evaluation for advanced cardiac therapies are largely unknown. Objective: To describe demographics, baseline quality of life, and frailty of patients undergoing evaluation for advanced therapies at the time of presentation for evaluation in an outpatient cardiac palliative care clinic and examine key quality of life differences across patients. Design: Retrospective chart review to report baseline demographics and quality of life. Settings/Subjects: Patients at a large academic medical center in the United States referred for advanced cardiac therapies in 2021. Measurements: Depression and anxiety were measured using the Hospital Anxiety and Depression Scale; quality of life was measured using the Functional Assessment of Chronic Illness Therapy-Palliative care (FACIT-Pal) tool; and frailty was measured using the Fried Frailty Phenotype. Differences in quality of life by disease etiology, demographic characteristics, and frailty were assessed. Results: Fifty-four patients were seen in the outpatient cardiac palliative care clinic for advanced therapy evaluation. Most were Caucasian (80%) and male (74%). Patients traveled an average of 61 minutes to the clinic. All but five lived in a rural, medically underserved, or health professional shortage area. Forty percent scored abnormal or borderline abnormal for anxiety; 22% scored abnormal or borderline abnormal for depression. The FACIT-Pal mean score was 129 (standard deviation 23), with emotional and functional well-being domains contributing most to poor quality of life. Seventy-one percent were frail. Patients with a nonischemic etiology had a 3.32 times higher rate of anxiety than nonischemic patients (95% confidence interval = 1.05-10.54, p = 0.041). Conclusion: As patients undergoing transplant evaluation have high levels of depression, anxiety, and frailty, interdisciplinary care teams will be needed to properly manage the needs of this complex population. These results can inform efforts to integrate palliative care into advanced cardiac therapy and improve patients' experiences.

Psychometric Properties of the Chinese Version of the Functional Assessment of Chronic Illness Therapy - Palliative Care (FACIT-Pal) in Patients With Advanced Cancer

ContextThe Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) has been widely used in assessing the quality of life (QOL) of patients with life-limiting illness. However, the Chinese version of the FACIT-Pal has not been psychometrically validated yet. ObjectivesThe purpose of this study was to psychometrically validate the FACIT-Pal in Chinese patients with advanced cancer. Methods160 patients with advanced cancer in mainland China participated in this cross-sectional study. The scalability of the instrument was determined by the item-total correlations and the reliability was tested by examining the Cronbach's alpha coefficients. The construct and concurrent validity of the FACIT-Pal were also examined. ResultsThe item-total correlation coefficients ranged from 0.25 to 0.72 (P < .01). Cronbach's alpha coefficient of the Chinese version of the FACIT-Pal was 0.94, ranging from 0.78 to 0.89 for subscales. Confirmatory factor analysis (CFA) results provided support for the measurement structure of the 26-item Functional Assessment of Cancer Therapy-General (FACT-G). Exploratory factor analysis (EFA) of the 19-item palliative care subscale identified five factors accounting for 62.21% of the total variance. Total/subscale scores of the FACIT-Pal were positively correlated with that of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being 12 Item Scale (FACIT-Sp-12) (r = 0.338–0.811, P < .01), as well as with the Karnofsky Performance Scale (KPS) scores (r = 0.163–0.273, P < .05), except for the correlation between social/family well-being subscale score and KPS score. ConclusionThe Chinese version of the FACIT-Pal demonstrates desirable psychometric properties for evaluating QOL in Chinese patients with advanced cancer.

Best Case/Worst Case: protocol for a multisite randomised clinical trial of a scenario planning intervention for patients with kidney failure

IntroductionGiven the burdens of treatment and poor prognosis, older adults with kidney failure would benefit from improved decision making and palliative care to clarify goals, address symptoms, and reduce unwanted...

Integrating specialist palliative care to improve care and reduce suffering: cystic fibrosis (InSPIRe:CF) – study protocol for a multicentre randomised clinical trial

IntroductionCystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional...

Validation of the Spanish Versions of FACIT-PAL and FACIT-PAL-14 in Palliative Patients.

Palliative patients require several types of care to improve their quality of life as much as possible, and valid and reliable assessment instruments are essential. The objective of this study is the Spanish validation of the Functional Assessment Chronic Illness Therapy-Palliative Care (FACIT-PAL) and its abbreviated version, FACIT-PAL-14, in palliative care patients. FACIT-PAL and FACIT-PAL-14 were translated into Spanish and administered to 131 terminal oncology patients in home palliative care units, hospital palliative care units, health center teams, and social health centers. The European Organization for Research and Treatment of Cancer questionnaire, EORTC-QLQ-C15-PAL version, was used to evaluate the criterion validity. The EORTC-QLQ-C15-PAL was employed as a “gold standard”, and it obtained significant results with FACIT scales. FACIT-PAL-14, FACIT-PAL, and its subscales reported high internal consistency, from 0.640 to 0.816. The exploratory factor analysis for FACIT-PAL-14 found a structure in three factors that explained the 70.10% variance, and the FACIT-PAL scale found a structure of five factors. Physical wellbeing from FACIT-PAL highly correlated to the EORTC-QLQ-C15-PAL (r = 0.700), but social and family wellbeing was correlated to a lesser extent (r = −0.323). FACIT-PAL and the TOI (Toi Outcome Index) were also highly correlated with the EORTC-QLQ-C15-PAL, with values of r = −0.708 and r = −0.709, respectively. The Spanish versions of FACIT-PAL and FACIT-PAL-14 were demonstrated to be valid and reliable scales in palliative care patients.

Characterizing anxiety, pain, sleep, and quality of life among patients in a state Medical Marijuana Program

BackgroundCannabis is increasingly used for symptom management, but its effects on health-related quality of life (QoL) have been inconclusive. ObjectivesThe goal of the present study was to characterize self-reported symptoms and QoL among patients certified to use medical cannabis. MethodsThese data are from the baseline assessment of a 12-month longitudinal study. The survey assessed certifying conditions, current medications, symptoms and symptom severity. QoL was assessed using the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) which includes Physical Well-Being (PWB), Social/Family Well-Being (SWB), Emotional Well-Being (EWB), Functional Well-Being (FWB), and the Palliative Care subscale. Higher scores indicated better QoL. ResultsOverall, 210 patients (114 female, 92 male, 3 non-binary, 1 refused) completed the survey. The most common certifying conditions were pain (48.6%), anxiety (36.7%), and PTSD (15.7%) and the most common symptoms were anxiety (65.2%), pain (56.7%), sleep disturbance (38.6%), and depression (31.4%). Compared to normative data, this sample reported lower QoL, specifically EWB and SWB scores (i.e., T-Scores<45). Opioid/benzodiazepine/sedative-hypnotic use was associated with lower QoL on all subscales (except SWB and FWB) (ps < 0.05). Greater number of self-reported symptoms and medical conditions were associated with lower QoL (ps < 0.01). ConclusionDespite mixed evidence regarding cannabis’ efficacy for anxiety, 36.7% of the current sample were certified by a physician for anxiety. Lower QoL was associated with more self-reported comorbid medical conditions, higher total symptom count, and reported use of an opioid and/or benzodiazepine. Future longitudinal data will provide critical information regarding the trajectory of these symptoms and QoL.

Symptoms, performance status and quality of life in cancer patients receiving palliative care

Aim: The aim of the study was to describe the symptoms experienced by cancer patients receiving palliative care, patients’ performance and the effects on their quality of life. Materials and Methods: This is a descriptive study and was conducted with 106 patients admitted to palliative care unit at a university hospital in Izmir, located in the west of Turkey, between December 2019 and April 2020. For data collection, Patient Information Form, “Eastern Cooperative Oncology Group (ECOG) Performance Status Scale”, “Edmonton Symptom Assessment Scale (ESAS)” and “Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) Scale” were applied. For data analysis, descriptive statistics, Chi-square test, Kruskall Wallis Analysis and linear regression analysis were used. Results: Patients reported that the most common symptoms experienced were fatigue, sense of being unwell, anxiety, sadness (depression) and pain. According to the regression analysis, there was a statistically significant difference between the total quality of life scores of the patients and pain, fatigue and nausea from the patients' ESAS symptoms. The quality of life scores were significantly lower in the patients who were hospitalized, had an advanced disease stage, did not have metastases or did not know their metastases status and had a low performance status ECOG. There was a statistically significant difference between patients' ECOG performance status and quality of life. Conclusion: Patients have multiple symptoms and poor quality of life. Our findings support the importance of symptom assessment and management to improve quality of life.

Symptom experience and care needs of Turkish palliative care patients.

Nurses need to focus on supporting patients' quality of life, supporting their families, reducing the morbidity rate, providing psychosocial support services to improve symptom management and delivering high-quality care. This study aimed to determine the symptom experience and care needs of Turkish patients who received inpatient treatment in palliative care units. This descriptive research was conducted between May 2019 and May 2020. The study sample was composed of 200 palliative care patients selected using a convenience-purposive sampling method. The personal and disease-related characteristics were collected using the Patient Information Survey and the Functional Assessment of Chronic Illness Therapy-Palliative Care scale. The mean age of the sample was 75±15 years, and 56.5% were women. The patients' overall quality of life scores were below average (mean 84.05±19.44). The functional wellbeing and other concerns subscales of the scale were affected the most adversely. The Physical Wellbeing subscale was affected minimally, while the Emotional Wellbeing and Social Wellbeing subscales were affected moderately. Conclusion: The palliative care patients mostly needed support for the prevention and management of infections, management of respiratory distress and swallowing problems, dealing with confusion and improving compliance with treatment. The low quality of life scores emphasise the importance of urgent interventions for improving the functional wellbeing and symptom management in these patients.

Race Differences in Quality of Life following a Palliative Care Intervention in Patients with Advanced Heart Failure: Insights from the Palliative Care in Heart Failure Trial.

Introduction: Black patients have a higher incidence of heart failure (HF) and worse outcomes than white patients. Guidelines recommend palliative care for patients with advanced HF, but no studies have examined outcomes in a black patient cohort. Methods: This is a post hoc analysis of the Palliative Care in Heart Failure trial, which randomized patients to usual care plus a palliative care intervention (UC+PAL) or usual care (UC). Quality of life (QoL) was measured using Kansas City Cardiomyopathy Questionnaire (KCCQ) and Functional Assessment of Chronic Illness Therapy-Palliative Care scale (FACIT-Pal). Results: Black patients represented 41% of the 148 patients. At six months, QoL improved more in UC+PAL than UC for both racial subgroups. The difference was greater for black than white patients (difference: KCCQ 10.8 vs. 2.5; FACIT-Pal: 14.8 vs. 3.9). However, the findings were not statistically significant. Conclusions: Larger studies are needed to assess the benefits of palliative care for black patients with HF. ClinicalTrials.gov Identifier: NCT01589601.

Effect of an Oncology Nurse–Led Primary Palliative Care Intervention on Patients With Advanced Cancer

Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services. To assess the effect of CONNECT (Care Management by Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes. This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle. The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care. The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale [HADS]: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted. A total of 672 patients were enrolled (mean [SD] age, 69.3 [10.2] years; 360 women [53.6%]). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 [28.2] vs 134.1 [28.1]; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 [16.6] vs 24.0 [16.1]; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 [3.4] vs 4.8 [3.7], adjusted mean difference, -0.08 [95% CI, -0.71 to 0.57], P = .82; HADS anxiety subscale score: 5.7 [3.9] vs 5.4 [4.2], adjusted mean difference, -0.31 [95% CI, -0.96 to 0.33], P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention. This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists. ClinicalTrials.gov Identifier: NCT02712229.

H.O.P.E. & Healing: a randomized pilot study of structured palliative care referrals in recurrent ovarian cancer

<h3>Objectives:</h3> The inclusion of palliative care (PC) across the cancer continuum has been identified as a marker of high-quality cancer care. With limited PC specialists, integrated approaches may be necessary with the primary oncologist providing this care. However, recurrent ovarian cancer patients often have significant physical and/or emotional needs that may be best addressed by PC specialists. Our primary objective was to test the effect of a structured PC intervention on quality of life (QOL) for patients with recurrent ovarian cancer. Secondary objective was to assess the effect of the structured PC approach on overall survival. <h3>Methods:</h3> This was an IRB approved prospective randomized controlled trial at 2 academic institutions and was registered with clinicaltrials.gov (NCT02090582). Eligible patients included those with platinum resistant ovarian cancer or platinum sensitive cancer with a sentinel clinical event (recent bowel obstruction, liver metastases, pleural effusion or ascites). Subjects were randomized 1:1 to usual care versus a structured palliative care intervention (see Figure 1). Quality of life was assessed using the Functional Assessment of Cancer Therapy-Ovarian (FACT-O) and Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-PAL) at baseline and 12-week intervals. Wilcoxon tests were used to detect differences between arms. Overall survival was analyzed using Kaplan-Meyer curves. <h3>Results:</h3> A total of 54 subjects were enrolled from 5/2014-4/2016; 26 in the intervention arm and 28 in the control arm. Median follow up was 6.5 months (Range: 2-12months). Median age of subjects was 63 with an ECOG performance status of 1. The majority of patients were Caucasian (44; 81.5%) and had platinum resistant disease (37; 68.5%). Most patients had received between 1-3 prior lines of chemotherapy (34/54; 63%); 5 patients (9.2%) had received ≥6 lines of therapy. There was no difference in overall or subset QOL in patients receiving usual care compared to those in the structured PC arm (p=0.14). There were no differences in hospital admissions (p=0.96), days from last chemo to hospice admission (p=1.0), days from hospice admission to death (p=0.41), place of death (p=0.68) or number of PC appointments (p=0.30) between the two arms. Patients enrolled in the 2nd half of the cohort were more likely to die at home rather than in the hospital or inpatient hospice (p=0.01) compared to subjects enrolled early in the study period. 81% of subjects randomized to the intervention arm completed at least 1 QDACT assessment (range 1-17). Similarly, there was no overall survival difference between the 2 arms (9.3m vs 10.1m; p=0.21). <h3>Conclusions:</h3> Structured integrated approaches between gynecologic oncology providers and PC specialists are feasible. The QDACT tool may be an effective, standardized measure to assess cancer symptom burden over time in this population. Further study is needed to identify interventions and collaborations that may have the greatest impact on QOL for recurrent ovarian cancer patients.

Rationale and design of the EPCHF trial: the early palliative care in heart failure trial (EPCHF)

The progressive nature of heart failure (HF) coupled with high mortality and poor quality-of-life (QoL) mandates greater attention to palliative care (PC) as a routine component of HF management. Limited evidence exists from randomized controlled trials supporting the use of interdisciplinary palliative care in the progressive course of HF. The early palliative care in heart failure trial (EPCHF) is a prospective, controlled, nonblinded, multicenter study of an interdisciplinary palliative care intervention in 200 patients with symptomatic HF characterized by NYHA ≥ 2. The 12-month EPCHF intervention includes monthly consultations by a palliative care team focusing on physical and psychosocial symptom relief, attention to spiritual concerns and advance care planning. The primary endpoint is evaluated by health-related QoL questionnaires after 12 months of treatment. First the functional assessment of chronic illness therapy palliative care (FACIT-Pal) score evaluating QoL living with a chronic disease and second the Kansas City cardiomyopathy questionnaire (KCCQ) measuring QoL living with heart failure will be determined. Secondary endpoints are changes in anxiety/depression (HADS), symptom burden score (MIDOS), spiritual well-being functional assessment of chronic illness therapy spiritual well-being scale (FACIT-Sp), medical resource and cost assessment. EPCHF will help evaluate the efficacy and cost-effectiveness of palliative care in symptomatic HF using a patient-centered outcome as well as clinical and economic endpoints. EPCHF is funded by the Bundesministerium für Bildung und Forschung (BMBF, 01GY17).

Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness

The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear. To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses. MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020. Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded. Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis. Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points). Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%). In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.

Quality of Life of Patients with Advanced Cancer in Palliative Therapy and in Palliative Care

Objective: To assess the quality of life of patients with advanced cancer in palliative therapy and in palliative care. Materials and Methods: Quantitative, observational, cross-sectional, and analytic study conducted in a teaching hospital in Paraná, Brazil, from January to June 2018, with 126 patients: 107 in palliative therapy; 19 in exclusive palliative care. The questionnaires for data collection were: Quality of Life Questionnaire-Core 15-Palliative, Functional Assessment of Chronic Illness Therapy-Palliative Care 14, and Edmonton Symptom Assessment System. The Spearman non-parametric coefficient test was used for the analysis. Results: The overall quality of life in palliative therapy and in palliative care was, respectively, 71.54/59.65; when correlating the total score of quality of life of the Quality of Life Questionnaire-Core 15-Palliative with the Functional Assessment of Chronic Illness Therapy-Palliative Care 14 (p = 0.001), and the Edmonton Symptom Assessment System (p = 0.001), significant difference of better quality of life was observed in the palliative therapy. Conclusion: Patients in palliative therapy have good overall quality of life, while the palliative care group reports regular quality of life. The symptoms were milder in the palliative therapy and more intense and with greater significance in palliative care; hence, knowing the compromise of quality of life will help professionals in planning interventions with transdisciplinary approach for patients and for their families.

QUALITY OF LIFE AND WELL-BEING: INTERNATIONAL PERSPECTIVES

AbstractQuality of life (QOL) for patients with chronic conditions at the end of life is a concern among policymakers and consumers, and has implications for improved care delivery outcomes. QOL indicators enable understanding of healthcare delivery beyond system oriented outcomes, shedding light on the effect of holistic, supportive care for those living with complex chronic illness in late life. In this mixed methods evaluation, we examine the effectiveness of a new patient-centered approach to late life care—LifeCourse intervention. A key component is ongoing, across-setting assistance by layperson care guides, supported by a clinical team. We investigate whether participation in LifeCourse improves QOL for patients, compared to usual care controls. QOL is assessed through quarterly administration of the Functional Assessment of Chronic Illness Therapy-Palliative Care survey (n=190 intervention patients and 157 controls). Data is presented as change in QOL indicators between baseline and 6 months. Mixed-methods analysis includes longitudinal examination of scores and qualitative data analysis. Multivariate analyses reveal that LifeCourse intervention had a significant positive effect on QOL for intervention patients when compared to controls. Additional analyses show that most changes happen for social quality of life domains. Interview data reveal that participants actively seek out ways to maintain QOL and exhibit resilience in the face of decline. Overall, our findings show that LifeCourse has a positive impact on QOL when compared to usual care patients. These trends indicate whole-person supportive care like LifeCourse is a promising approach for patients affected by complex chronic illness in late life.

Association Between Palliative Care and Patient and Caregiver Outcomes

The use of palliative care programs and the number of trials assessing their effectiveness have increased. To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. Randomized clinical trials of palliative care interventions in adults with life-limiting illness. Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-palliative care scale (FACIT-Pal) instrument (range, 0-184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0-90 [best-worst]; MCID, 5.7 points). Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95% CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, -0.66; 95% CI, -1.25 to -0.07; ESAS mean difference, -10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated but remained statistically significant (standardized mean difference, 0.20; 95% CI, 0.06 to 0.34; FACIT-Pal mean difference, 4.94), whereas the association with symptom burden was not statistically significant (standardized mean difference, -0.21; 95% CI, -0.42 to 0.00; ESAS mean difference, -3.28). There was no association between palliative care and survival (hazard ratio, 0.90; 95% CI, 0.69 to 1.17). Palliative care was associated consistently with improvements in advance care planning, patient and caregiver satisfaction, and lower health care utilization. Evidence of associations with other outcomes was mixed. In this meta-analysis, palliative care interventions were associated with improvements in patient QOL and symptom burden. Findings for caregiver outcomes were inconsistent. However, many associations were no longer significant when limited to trials at low risk of bias, and there was no significant association between palliative care and survival.

The Undergraduate Hospice Experience: A Way to Teach Pre-Med Students the Importance of Compassionate Patient Care (S725)

Methods. Secondary analysis of a randomized controlled trial of a palliative care intervention (Project ENABLE) for patients with advanced cancer and their primary FCGs. Structured tree analysis was used to identify variables associated with the presence or lack of a FCG. Sociodemographic and patient reported outcomes data were abstracted from baseline questionnaires of 122 patients who enrolled with a FCG and 85 patients who enrolled without a FCG. Sociodemographics included age, gender, education, race, social support (MSPSS: Multidimensional Scale of Perceived Social Support), and Karnofsky Functional status. Patient reported outcomes included symptom impact (QUAL-E Symptom Impact, score range: 4-20), quality of life (QOL) (Functional Assessment of Chronic Illness Therapy-Palliative Care), depression (Center for Epidemiological Studies-Depression Scale), perceived quality of care (Patient Assessment of Chronic Illness Care), and hospital days and emergency department visits in the past 3 months. Results. For patients with MSPSS scores 52.5 (n1⁄4105), 73% (n1⁄477) had a FCG. For female patients with MSPSS scores >77.5 (n1⁄429), 69% (n1⁄420) had a FCG. For female patients with MSPSS scores 126.1 (n1⁄425), 20% (n1⁄45) had a FCG. For female patients with MSPSS scores 26 (n1⁄410), 20% (n1⁄42) had a FCG. For female patients with MSPSS scores <77.5, QOL scores <126, and depression scores<26 (n1⁄426), 77% (n1⁄420) had a FCG. Conclusions. Having a FCG is associated with high levels of perceived social support, being male, and lower depression despite lower QOL. Implications for Research, Policy, or Practice. Advanced cancer patients with little social support require special arrangements to help them manage their illness.

Characteristics and outcomes of persons with advanced cancer associated with having a family caregiver: A classification tree analysis.

29 Background: Little is known about the impact that having a family caregiver (FCG) has on individuals with advanced cancer. We examined patient characteristics and outcomes most associated with having versus not having a primary FCG. Methods: Secondary data analysis of a randomized controlled trial of an early palliative care intervention (Project ENABLE [Educate, Nuture, Advise, Before Life Ends]) for patients with advanced cancer and their primary FCGs (10/2010-9/2013). Sociodemographic and patient reported outcomes data were abstracted from the baseline questionnaires of 122 patients who enrolled with FCG and 85 patients who enrolled without a FCG. Sociodemographic variables included age, gender, education, race, social support (MSPSS: Multidimensional Scale of Perceived Social Support, score range: 12-84), and Karnofsky Functional status. Patient reported outcomes included symptom impact (QUAL-E Symptom Impact, score range: 4-20), quality of life (QOL) (Functional Assessment of Chronic Illness Therapy-Palliative Care, score range: 0-184), depression (Center for Epidemiological Studies-Depression Scale, score range: 0-60), perceived quality of care (Patient Assessment of Chronic Illness Care, score range: 20-100), and hospital days and emergency department visits in the past 3 months. Structured tree analysis was used to identify a set of variables strongly associated with the presence or lack of a FCG. Results: In the final model, for patients with MSPSS scores &lt;52.5 (N=12), none had a FCG. For male patients with MSPSS scores &gt;52.5 (N=105), 73% (N=77) had a FCG. For female patients with MSPSS scores &gt;77.5 (N=29), 69% (N=20) had a FCG. For female patients with MSPSS scores &lt;77.5 and QOL scores &gt;126.1 (N=25), 20% (N=5) had a FCG. For female patients with MSPSS scores &lt;77.5, QOL scores &lt;126, and depression scores &gt;26 (N=10), 20% (N=2) had a FCG. For female patients with MSPSS scores &lt;77.5, QOL scores &lt;126, and depression scores &lt;26 (N=26), 77% (N=20) had a FCG. Conclusions: The final model suggests that having a FCG is highly associated with having high levels of perceived social support, being male, and lower levels of depression despite having lower QOL.

A Psychometric Evaluation of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) Scale With Palliative Care Samples in Three African Countries

ContextAlthough sub-Saharan Africa suffers the greatest burden of progressive illness, there are few outcome measures with adequate properties to measure needs and outcomes. ObjectivesTo examine the psychometric properties of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) among people receiving palliative care in three African countries. MethodsAdult patients in South Africa, Kenya, and Uganda gave self-reported data to the core FACIT-G plus Pal subscale. Data were subjected to factor analysis, corrected item-total correlations, and Cronbach's α for full scale and subscales. ResultsThe resulting four factors bear a strong similarity to the original Functional Assessment of Cancer Therapy-General in our sample of 461: physical symptoms, functional well-being, friends and family, and emotional well-being. Cronbach's α for the full 27-item scale was 0.90 and for the physical well-being, social/family well-being, emotional well-being, and functional well-being subscales, it was 0.83, 0.78, 0.80, and 0.87, respectively. Varimax rotation of the 19-item FACIT-Pal scale showed three clear interpretable factors. Factor 1, a sense of purpose and meaning in life; Factor 2, physical symptoms; and Factor 3, social integration. For the 19-item FACIT-Pal, Cronbach's α was 0.81, and individual corrected item-total correlations ranged from 0.24 to 0.61. Cronbach's α for the eight items comprising Factor 1 (meaning in life) was 0.83. For the other two factors, it was 0.70 (physical symptoms, six items) and 0.68 (social integration, three items). ConclusionThe FACIT-Pal is a reliable multidimensional scale for people with life-limiting incurable diseases in sub-Saharan Africa, and the observed factors are interpretable and clinically meaningful.

Preliminary Results of the Generation of a Shortened Quality-of-Life Assessment for Patients with Advanced Cancer: The FACIT-Pal-14

Shortened quality-of-life (QOL) tools are advantageous in palliative care patients. Development of such tools begins with the identification of issues relevant to a population. The purpose of this study was to identify the most important items of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) to create an abbreviated questionnaire for future palliative care trials. A convenience sample of patients and health care professionals (HCPs) assessed the relevance of each item of the FACIT-Pal and whether they would include the item in a final questionnaire. Patients and HCPs identified their top 10 most important issues and were asked whether items were inappropriate, upsetting, or irrelevant; a shortened questionnaire was generated from this input. Sixty patients and 56 HCPs participated. The median score in the Karnofsky Performance Scale (KPS) of patients was 70, and the majority of HCPs were radiation oncologists. The 46-item questionnaire was shortened to 14 questions, retaining several items from the Functional Assessment of Cancer Therapy-General (FACT-G) as well as issues pertaining specifically to palliative care patients. Items within the emotional, physical, and functional well-being subscales were retained along with those for various symptoms including constipation, nausea, dyspnea, and sleep. No new content beyond what is covered by the FACIT-Pal was identified consistently by either HCPs or patients. Similarly, no item was consistently rated as being inappropriate, upsetting, or irrelevant in the 14-item questionnaire. The FACIT-Pal-14, a shortened 14-item questionnaire has been generated for the palliative care population. Future studies should complete psychometric validation of this instrument for the assessment of QOL in palliative care patients.