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1.
Support Care Cancer ; 28(12): 5995-6010, 2020 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-32285263

RESUMEN

PURPOSE: Palliative care is recommended for patients with metastatic cancer, but there has been limited research about embedded palliative care for specific patient populations. We describe the impact of a pilot program that provided routine, early, integrated palliative care to patients with metastatic colorectal cancer. METHODS: Mixed methods pre-post intervention cohort study at an academic cancer center. Thirty control then 30 intervention patients with metastatic colorectal cancer were surveyed at baseline and 1, 3, 6, 9, and 12 months thereafter about symptoms, quality-of-life, and likelihood of cure. We compared survey responses, trends over time, rates of advance care planning, and healthcare utilization between groups. Patients, family caregivers, and clinicians were interviewed. RESULTS: Patients in the intervention group were followed for an average of 6.5 months and had an average of 3.5 palliative care visits. At baseline, symptoms were mild (average 1.85/10) and 78.2% of patients reported good/excellent quality-of-life. Half (50.9%) believed they were likely to be cured of cancer. Over time, symptoms and quality-of-life metrics remained similar between groups, however intervention patients were more realistic about their likelihood of cure (p = 0.008). Intervention patients were more likely to have a surrogate documented (83.3% vs. 26.7%, p < 0.0001), an advance directive completed (63.3% vs. 13.3%, p < 0.0001), and non-full code status (43.3% vs. 16.7%, p < 0.03). All patients and family caregivers would recommend the program to others with cancer. CONCLUSIONS: We describe the impact of an embedded palliative care program for patients with metastatic colorectal cancer, which improved prognostic awareness and rates of advance care planning.


Asunto(s)
Directivas Anticipadas/estadística & datos numéricos , Neoplasias Colorrectales/terapia , Enfermería de Cuidados Paliativos al Final de la Vida/métodos , Cuidados Paliativos/métodos , Planificación Anticipada de Atención , Cuidadores , Estudios de Cohortes , Neoplasias Colorrectales/patología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Proyectos Piloto , Calidad de Vida/psicología , Encuestas y Cuestionarios
2.
Cancer Control ; 22(4): 465-74, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26678973

RESUMEN

BACKGROUND: Although much evidence has accumulated demonstrating its benefit, relatively little is known about outpatient palliative care in patients with cancer. METHODS: This paper reviews the literature and perspectives from content experts to describe the current state of outpatient palliative care in the oncology setting and current areas of innovation and promise in the field. RESULTS: Evidence, including from controlled trials, documents the benefits of outpatient palliative care in the oncology setting. As a result, professional medical organizations have guidelines and recommendations based on the key role of palliative care in oncology. Six elements of the practice sit at the frontier of outpatient oncology palliative care, including the setting and timing of palliative care integration into outpatient oncology, the relationships between primary and specialty palliative care, quality and measurement, research, electronic and technical innovations, and finances. CONCLUSIONS: Evidence of clinical and health care system benefits supports the recommendations of professional organizations to integrate palliative care into the routine treatment of patients with advanced cancer.


Asunto(s)
Neoplasias/terapia , Cuidados Paliativos/métodos , Humanos , Oncología Médica/métodos , Pacientes Ambulatorios , Calidad de Vida
3.
Cancer Control ; 22(4): 396-402, 2015 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-26678966

RESUMEN

BACKGROUND: The measurement and reporting of the quality of care in the field of palliation has become a required task for many health care leaders and specialists in palliative care. Such efforts are aided when organizations collaborate together to share lessons learned. METHODS: The authors reviewed examples of quality-improvement collaborations in palliative care to understand the similarities, differences, and future directions of quality measurement and improvement strategies in the discipline. RESULTS: Three examples were identified that showed areas of robust and growing quality-improvement collaboration in the field of palliative care: the Global Palliative Care Quality Alliance, Palliative Care Quality Network, and Project Educate, Nurture, Advise, Before Life Ends. These efforts exemplify how shared-improvement activities can inform improved practice for organizations participating in collaboration. CONCLUSIONS: National and regional collaboratives can be used to enhance the quality of palliative care and are important efforts to standardize and improve the delivery of palliative care for persons with serious illness, along with their friends, family, and caregivers.


Asunto(s)
Conducta Cooperativa , Atención a la Salud/métodos , Cuidados Paliativos/métodos , Humanos , Garantía de la Calidad de Atención de Salud/métodos
4.
Chest ; 2024 Aug 24.
Artículo en Inglés | MEDLINE | ID: mdl-39186972

RESUMEN

BACKGROUND: Patients with lung cancer, idiopathic pulmonary fibrosis (IPF), and COPD have high symptom burden, poor quality of life, and high health care use at the end of life. Although proactive integration of palliative care in lung cancer can improve outcomes, it is unclear whether similar practices have been adopted in COPD and IPF care. RESEARCH QUESTION: Do patients with COPD and IPF have different patterns of health care and palliative care use at the end of life compared with patients with lung cancer? STUDY DESIGN AND METHODS: We retrospectively identified deceased patients with lung cancer, COPD, or IPF with ≥ 1 outpatient visit at the University of California, San Francisco, in the last 6 months of life. We compared outpatient palliative care and opioid prescriptions, inpatient palliative care, hospitalizations, intensive care use, and in-hospital death in the last 6 months of life between each group. We used multivariable logistic regression to calculate adjusted ORs (aORs) of each outcome, with lung cancer as the reference group. RESULTS: Among 1,819 patients, patients with COPD and IPF were more likely to be male and older at the time of death compared with patients with lung cancer. Compared with patients with lung cancer, patients with COPD and IPF showed a lower adjusted odds (P < .001) of receiving outpatient palliative care (COPD: aOR, 0.26 [95% CI, 0.19-0.36]; IPF: aOR, 0.48 [95% CI, 0.32-0.70;), outpatient opioids (COPD: aOR, 0.50 [95% CI, 0.40-0.63]; IPF: aOR, 0.40 [95% CI, 0.29-0.54]), and a higher odds of end-of-life ICU use (COPD: aOR, 2.88 [95% CI, 2.11-3.93]; IPF: aOR, 4.15 [95% CI, 2.66-6.49]). Patients with IPF showed higher odds of receiving inpatient palliative care (aOR: 2.02 [95% CI, 1.30-3.13]; P = .002). INTERPRETATION: Patients with COPD and IPF are less likely to receive outpatient palliative care and opioid prescriptions and are more likely to use end-of-life intensive care than patients with lung cancer. Further research should explore health system barriers contributing to differences in care patterns to optimize quality of life and to align with patient goals of care.

5.
Artículo en Inglés | MEDLINE | ID: mdl-39111585

RESUMEN

OBJECTIVES: Bereaved care partner surveys typically focus on the experience with care in the final days of life. We sought to develop and pilot a novel bereaved care partner survey to understand experiences with ALS supportive care provided throughout the illness and identify opportunities for quality improvement. METHODS: We developed the survey using a multisite, interdisciplinary consensus process involving ALS and palliative care clinicians as well as patient advocates. We then piloted the survey at a single site via video interviews with care partners of patients who died from ALS between three and 15 months prior. Qualitative findings were analyzed using Rapid Qualitative Analysis. RESULTS: The survey includes 17 core questions and nine demographic items. Questions inquire about whether the patient and care partner received adequate help with physical symptoms, emotional and practical needs, education about the illness and how to provide hands-on care, preparing for what was to come, and bereavement. They also query whether care was person-centered and consistent with the patient's values and preferences. During the pilot with 18 bereaved care partners, the tool generated detailed feedback about aspects of care to preserve as well as how to improve ALS supportive care. DISCUSSION: We developed and piloted a bereaved care partner survey to understand and improve the quality of ALS supportive care, which was found to be feasible and acceptable. Next steps include testing it at additional centers in order to generate learnings that can advance ALS supportive care in ways that are meaningful to patients and care partners.

6.
JAMA Netw Open ; 7(7): e2420472, 2024 Jul 01.
Artículo en Inglés | MEDLINE | ID: mdl-38976269

RESUMEN

Importance: The Palliative Performance Scale (PPS) is one of the most widely used prognostic tools for patients with serious illness. However, current prognostic estimates associated with PPS scores are based on data that are over a decade old. Objective: To generate updated prognostic estimates by PPS score, care setting, and illness category, and examine how well PPS predicts short- and longer-term survival. Design, Setting, and Participants: This prognostic study was conducted at a large academic medical center with robust inpatient and outpatient palliative care practices using electronic health record data linked with data from California Vital Records. Eligible participants included patients who received a palliative care consultation between January 1, 2018, and December 31, 2020. Data analysis was conducted from November 2022 to February 2024. Exposure: Palliative care consultation with a PPS score documented. Main Outcomes and Measures: The primary outcomes were predicted 1-, 6-, and 12-month mortality and median survival of patients by PPS score in the inpatient and outpatient settings, and performance of the PPS across a range of survival times. In subgroup analyses, mortality risk by PPS score was estimated in patients with cancer vs noncancer illnesses and those seen in-person vs by video telemedicine in the outpatient setting. Results: Overall, 4779 patients (mean [SD] age, 63.5 [14.8] years; 2437 female [51.0%] and 2342 male [49.0%]) had a palliative care consultation with a PPS score documented. Of these patients, 2276 were seen in the inpatient setting and 3080 were seen in the outpatient setting. In both the inpatient and outpatient settings, 1-, 6-, and 12-month mortality were higher and median survival was shorter for patients with lower PPS scores. Prognostic estimates associated with PPS scores were substantially longer (2.3- to 11.7-fold) than previous estimates commonly used by clinicians. The PPS had good ability to discriminate between patients who lived and those who died in the inpatient setting (integrated time-dependent area under the curve [iAUC], 0.74) but its discriminative ability was lower in the outpatient setting (iAUC, 0.67). The PPS better predicted 1-month survival than longer-term survival. Mortality rates were higher for patients with cancer than other serious illnesses at most PPS levels. Conclusions and Relevance: In this prognostic study, prognostic estimates associated with PPS scores were substantially longer than previous estimates commonly used by clinicians. Based on these findings, an online calculator was updated to assist clinicians in reaching prognostic estimates that are more consistent with modern palliative care practice and specific to the patient's setting and diagnosis group.


Asunto(s)
Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Masculino , Femenino , Pronóstico , Anciano , Persona de Mediana Edad , Anciano de 80 o más Años , California , Neoplasias/mortalidad , Neoplasias/terapia , Adulto
7.
Support Care Cancer ; 21(11): 3031-7, 2013 Nov.
Artículo en Inglés | MEDLINE | ID: mdl-23794100

RESUMEN

PURPOSE: Although outpatient palliative care clinics are increasingly common, evidence for their efficacy remains limited. METHODS: We conducted an observational study at the palliative care clinic of an academic cancer center to assess the association between palliative care co-management and symptoms and quality of life. Two hundred sixty-six adult outpatients were seen for a minimum of two palliative care visits within 120 days. A subset of 142 patients was seen for a third visit within 240 days. Patients completed a questionnaire containing validated symptom, quality of life, and spiritual wellbeing questions at each visit. RESULTS: The first follow-up visit was on average 41 days after the initial visit; the second follow-up visit was on average 81 days after the initial visit. Between the initial and first follow-up visits, there was significant improvement in pain (p < 0.001), fatigue (p < 0.001), depression (p < 0.001), anxiety (p < 0.001), quality of life (p = 0.002), and spiritual wellbeing (p < 0.001), but not nausea (p = 0.14). For the subset of patients seen for a second follow-up visit, the improvements in pain, fatigue, depression, anxiety, quality of life, and spiritual wellbeing persisted (p ≤ 0.005 for trend of each symptom). Patients had similar improvement regardless of their gender, age, ethnicity, disease stage, disease progression, and concurrent oncologic treatments. CONCLUSIONS: Palliative care was associated with significant improvement in nearly all the symptoms evaluated. A sustained change in symptoms was observed in the subset of patients seen for a second follow-up visit. Members of all subgroups improved.


Asunto(s)
Fatiga/terapia , Náusea/terapia , Neoplasias/complicaciones , Neoplasias/terapia , Pacientes Ambulatorios/psicología , Cuidados Paliativos/métodos , Adulto , Anciano , Ansiedad/psicología , Ansiedad/terapia , Depresión/psicología , Depresión/terapia , Progresión de la Enfermedad , Fatiga/etiología , Fatiga/psicología , Femenino , Estudios de Seguimiento , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Náusea/etiología , Náusea/psicología , Neoplasias/psicología , Dolor/etiología , Dolor/psicología , Manejo del Dolor/métodos , Calidad de Vida , Encuestas y Cuestionarios
8.
Cancers (Basel) ; 15(21)2023 Oct 24.
Artículo en Inglés | MEDLINE | ID: mdl-37958296

RESUMEN

Telemedicine has the potential to improve access to cancer care, particularly for patients with functional limitations, high symptom burdens, or financial or geographic constraints. However, there is also a risk that telemedicine can widen healthcare disparities among patients facing systemic disadvantages like those with technological barriers, poor digital literacy, older age, or non-English language preferences. To optimize telemedicine usage, we must implement practical strategies like video onboarding programs, user-friendly technology platforms, optimizing the clinician's environment, and best practices for using interpreters. Policy changes such as state licensing requirements, controlled substance prescribing requirements, and payment parity are also crucial. This Perspective highlights these practical strategies and policy recommendations to ensure accessible and equitable cancer care augmented by telemedicine.

9.
J Pain Symptom Manage ; 66(2): e163-e176, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37084827

RESUMEN

CONTEXT: Little is known about equity in utilization of outpatient palliative care (PC). OBJECTIVES: To explore whether patient-level factors are associated with completing initial and follow-up visits among patients referred to outpatient PC. METHODS: Using electronic health record data, we generated a cohort of all adults referred to outpatient PC at University of California, San Francisco October 2017-October 2021. We assessed whether demographic and clinical characteristics were associated with completion of 1) an initial PC visit and 2) at least one follow-up visit. RESULTS: Of patients referred to outpatient PC (N = 6,871), 60% completed an initial visit; 66% of those who established care returned for follow-up. In multivariable models, patients who were less likely to complete an initial visit were older (OR per decade 0.94; 95% confidence interval [CI] 0.89-0.98), Black (OR 0.71; 95% CI 0.56-0.90), Latinx (OR 0.69; 95% CI 0.57-0.83), unpartnered (OR 0.80; 95% CI 0.71-0.90), and had Medicaid (OR 0.82; 95% CI 0.69-0.97). Among patients who completed an initial visit, those less likely to complete a follow-up visit were older (OR 0.88; 95% CI 0.82-0.94), male (OR 0.83; 95% CI 0.71-0.96), preferred a language other than English (0.71; 95% CI 0.54-0.95), and had a serious illness other than cancer (OR 0.74; 95% CI 0.61-0.90). CONCLUSION: We found that Black and Latinx patients were less likely to complete an initial visit and those with a preferred language other than English were less likely to complete a follow-up visit. To promote equity in PC, these differences and their impact on outcomes must be explored.


Asunto(s)
Neoplasias , Cuidados Paliativos , Adulto , Estados Unidos , Humanos , Masculino , Pacientes Ambulatorios , Atención Ambulatoria , Neoplasias/epidemiología , Neoplasias/terapia , Demografía , Estudios Retrospectivos
10.
J Palliat Med ; 26(3): 376-384, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-36608316

RESUMEN

Background: Family caregivers are essential to the care of patients with serious illness and supporting caregivers alongside patients is a core tenet of palliative care. While there is increasing recognition of the need to support family caregivers, there are limited resources to assess and support their needs in a systematic way in outpatient palliative care practice. Objectives: The aim of this study is to develop an approach to conducting assessments of routine needs and support of family caregivers in outpatient palliative care practice using a quality improvement framework. Setting: Seven, interdisciplinary, outpatient palliative care teams in California collaborated in this study. Measurements: Family caregivers were surveyed about levels of distress and support using a 10-point scale and asked about specific areas of need for support. Usefulness of a supportive caregiver resource was also measured on a 10-point scale, in addition to qualitative assessment of clinician satisfaction and feasibility of routine caregiver assessment and support. Results: Seven hundred thirty-six caregiver needs assessments were conducted and 44 supportive tool kits were distributed. A majority of family caregivers reported moderate or severe distress related to caregiving (score ≥4 on a 10-point scale). The most common sources of distress included emotional distress, worry caregiving was negatively impacting their own health, and planning for the future. Most caregivers reported feeling moderately or very well supported, most commonly by family, friends, and faith/spirituality. Caregivers rated the supportive tool kit an 8.4 on a 10-point usefulness scale and 92% would recommend it to others. Conclusions: We successfully developed and piloted practical clinical tools for routine family caregiver screening and support.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Cuidadores/psicología , Pacientes Ambulatorios , Atención Ambulatoria
11.
Respir Med ; 206: 107066, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-36470050

RESUMEN

BACKGROUND: Pulmonary arterial hypertension (PAH) is a life limiting disease with substantial symptom burden and healthcare utilization. Palliative care alleviates physical and emotional symptoms for patients with serious illness, and has been underutilized for these patients. OBJECTIVE: To characterize patients with PAH referred to palliative care and identify predictors of referral. METHODS: We conducted an observational study of adult patients enrolled in the Pulmonary Hypertension Association Registry from January 2015 through June 2021, performing descriptive statistics on patient characteristics at baseline for all patients and the subset referred to palliative care. These characteristics were modeled in a backwards elimination Cox regression with time to referral to palliative care as the primary outcome. RESULTS: 92 of 1,578 patients were referred to palliative care (5.8%); 43% were referred at their last visit prior to death. Referrals were associated with increasing age per decade (hazard ratio 1.35 [95% confidence interval 1.16-1.58]), lower body mass index (hazard ratio 0.97 [95% confidence interval 0.94-0.998]), supplemental oxygen use (hazard ratio 2.01 [95% confidence interval 1.28-3.16]), parenteral prostanoid use (hazard ratio 2.88 [95% confidence interval 1.84-4.51]), and worse quality of life, measured via lower physical (hazard ratio 0.97 [95% confidence interval 0.95-0.99]) and mental (hazard ratio 0.98 [95% confidence interval 0.96-0.995]) scores on the 12-item Short Form Health Survey. CONCLUSION: Patients with PAH are infrequently referred to palliative care, even at centers of excellence. Referrals occur in sicker patients with lower quality of life scores, often close to the end of life.


Asunto(s)
Hipertensión Pulmonar , Hipertensión Arterial Pulmonar , Adulto , Humanos , Hipertensión Pulmonar/epidemiología , Hipertensión Pulmonar/terapia , Cuidados Paliativos , Calidad de Vida , Hipertensión Pulmonar Primaria Familiar , Derivación y Consulta , Sistema de Registros
12.
J Pain Symptom Manage ; 66(3): 270-280.e8, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-37380147

RESUMEN

CONTEXT/OBJECTIVES: A critical frontier for palliative medicine is to develop systems to routinely and equitably address the palliative care (PC) needs of seriously ill populations. METHODS: An automated screen identified Medicare primary care patients who had serious illness based on diagnosis codes and utilization patterns. A stepped-wedge design was used to evaluate a six-month intervention through which a healthcare navigator assessed these seriously ill patients and their care partners for PC needs in the domains of 1) physical symptoms, 2) emotional distress, 3) practical concerns, and 4) advance care planning (ACP) via telephone surveys. Identified needs were addressed with tailored PC interventions. RESULTS: A total of 292/2175 (13.4%) patients screened positive for serious illness. A total of 145 completed an intervention phase; 83 completed a control phase. Severe physical symptoms were identified in 27.6%, emotional distress in 57.2%, practical concerns in 37.2%, and ACP needs in 56.6%. Twenty-five intervention patients (17.2%) were referred to specialty PC compared to six control patients (7.2%). Prevalence of ACP notes increased 45.5%-71.7% (p = 0.001) during the intervention and remained stable during the control phase. Quality of life remained stable during the intervention and declined 7.4/10-6.5/10 (P =0.04) during the control phase. CONCLUSION: Through an innovative program, patients with serious illness were identified from a primary care population, assessed for PC needs, and offered specific services to meet those needs. While some patients were appropriate for specialty PC, even more needs were addressed without specialty PC. The program resulted in increased ACP and preserved quality of life.


Asunto(s)
Planificación Anticipada de Atención , Enfermería de Cuidados Paliativos al Final de la Vida , Anciano , Humanos , Estados Unidos , Cuidados Paliativos/métodos , Calidad de Vida , Pacientes Ambulatorios , Medicare
13.
J Palliat Med ; 26(10): 1401-1407, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37001173

RESUMEN

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Medicina , Humanos , Estados Unidos , Cuidados Paliativos , Atención a la Salud
14.
Neurol Clin Pract ; 12(1): 68-75, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-36157626

RESUMEN

Background and Objectives: Palliative care (PC) is recommended for people with amyotrophic lateral sclerosis (ALS), but there is scant literature about how to best provide this care. We describe the structure and impact of a pilot program that integrates longitudinal, interdisciplinary PC into the care of patients with ALS. Methods: Observational cohort study of patients with ALS referred to outpatient PC and seen for at least 3 PC visits October 2017-July 2020. Results: Fifty-five patients met the inclusion criteria. Three-quarters (74.5%) were Caucasian, and 78.2% spoke English. Patients were referred for advance care planning (58.2%), support for patient/family (52.7%), and symptoms other than pain (50.9%). Patients had a mean of 5 scheduled PC visits, the majority occurred by video. A PC physician, nurse, social worker, and chaplain addressed pain (for 43.6% of patients), nonpain symptoms (94.5%), psychosocial distress (78.2%), spiritual concerns (29.1%), care planning (96.4%), and supported family caregivers (96.4%). With PC, the rate of completion of advance directives increased from 16.4% to 36.4% (p = 0.001) and Physician Orders for Life-Sustaining Treatment forms from 10.9% to 63.6% (p < 0.001). Of the 27 patients who died, 77.8% used hospice, typically for more than 30 days. Eleven patients obtained aid-in-dying prescriptions, and 8 took these medications, accounting for 29.6% of the deaths. Discussion: Integrating longitudinal, interdisciplinary PC into the care of patients with ALS is feasible, addresses needs in multiple domains, and is associated with increased rates of advance care planning. Controlled studies are needed to further elucidate the impact of PC on patients with ALS, their families, and clinicians.

15.
J Palliat Med ; 25(2): 213-218, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34348042

RESUMEN

Background: Patients with cirrhosis have significant morbidity and mortality, as well as substantial symptom burden. Objective: We investigated the relationship between symptom burden and inpatient health care utilization among patients with cirrhosis. Methods: Adult patients with cirrhosis being evaluated for or awaiting liver transplantation at an academic institution in the United States completed the Edmonton Symptom Assessment Scale (ESAS), a validated symptom evaluation tool with total scores ranging from 0 to 90. The outcomes of interest were emergency department (ED) visits, nonelective hospitalizations, hospital days, intensive care unit (ICU) admissions, and 30-day readmissions within 6 months. Adjusted incidence rate ratios (IRRs) were used to examine the relationship between ESAS scores and outcomes. Results: Of 233 patients (43% female, median age 61), the median total ESAS score was 16 (interquartile range 6-30). Higher total scores on the ESAS were associated with increased ED visits, hospitalizations, hospital days, and ICU days (all p < 0.04). After adjusting for age, gender, and Model for End-Stage Liver Disease-sodium, ESAS total score remained an independent predictor of ED visits (IRR 1.05, confidence interval [95% CI] 1.00-1.10, p = 0.03). Multivariate ESAS subscale analyses revealed that the physical symptom score was associated with ED visits (IRR 1.09, 95% CI 1.02-1.16, p = 0.01), but the psychological symptom score was not (IRR 1.03, 95% CI 1.00-1.08, p = 0.15). Conclusions: Patient-reported symptoms, particularly physical symptoms, are independently associated with ED visits among patients with cirrhosis being considered for liver transplantation. Further research is needed to examine whether addressing symptoms more aggressively, such as with palliative care co-management, could decrease ED utilization in this population.


Asunto(s)
Enfermedad Hepática en Estado Terminal , Adulto , Servicio de Urgencia en Hospital , Femenino , Hospitalización , Humanos , Cirrosis Hepática , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Evaluación de Síntomas , Estados Unidos
16.
J Palliat Med ; 25(10): 1468-1475, 2022 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-35442773

RESUMEN

Background: Despite substantial palliative care (PC) needs in people with serious illnesses other than cancer, outpatient PC is less available to these populations. Objectives: Describe the experience, impact, and lessons learned from implementing an outpatient PC service (OPCS) for people with noncancer illnesses. Design: Observational cohort study. Setting/Subjects: Patients seen by an OPCS at a United States academic medical center October 2, 2017-March 31, 2021. Measurements: Patient demographics and clinical characteristics, care processes, rates of advance care planning (ACP), and health care utilization. Results: During the study period, 736 patients were seen. Mean age was 66.7 years, 47.7% were women, and 61.4% were White. Nearly half (44.9%) had a neurologic diagnosis, 19.2% pulmonary, and 11.0% cardiovascular. Patients were most often referred for symptoms other than pain (62.2%), ACP (60.2%), and support for patient/family (48.2%). Three-quarters (74.1%) of visits occurred by video. A PC physician, nurse, social worker, and spiritual care provider addressed nonpain symptoms (for 79.2%), family caregiver needs (70.0%), psychosocial distress (69.9%), ACP (68.8%), care coordination (66.8%), pain (38.2%), and spiritual concerns (27.8%). Rates of advance directives increased from 24.6% to 31.8% (p < 0.001) and Physician Orders for Life-Sustaining Treatment forms from 15.6% to 27.3% (p < 0.001). Of 214 patients who died, 61.7% used hospice, with median hospice length-of-stay >30 days. Comparing the six months before initiating PC to the six months after, hospitalizations decreased by 31.3% (p = 0.001) and hospital days decreased by 29.8% (p = 0.02). Conclusions: Outpatient PC for people with noncancer illnesses is feasible, addresses needs in multiple domains, and is associated with increased rates of ACP and decreased health care utilization. Controlled studies are warranted.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Cuidados Paliativos , Anciano , Atención Ambulatoria , Femenino , Humanos , Masculino , Pacientes Ambulatorios , Dolor , Estados Unidos
17.
Eur J Gastroenterol Hepatol ; 33(1S Suppl 1): e395-e400, 2021 12 01.
Artículo en Inglés | MEDLINE | ID: mdl-33731588

RESUMEN

OBJECTIVES: Although patients with cirrhosis often experience debilitating symptoms, few are referred for palliative care. Frailty is increasingly incorporated in liver transplantation evaluation and has been associated with symptom burden in other populations. We hypothesized that frail patients with cirrhosis are highly symptomatic and thus are likely to benefit from palliative care. METHODS: Patients with cirrhosis undergoing outpatient liver transplantation evaluation completed the Liver Frailty Index (grip strength, chair stands and balance) and a composite of validated measures including the Edmonton Symptom Assessment Scale, distress and quality of life (QOL) measures. RESULTS: Of 233 patients (median age 61 years, 43% women), 22% were robust, 59% prefrail and 19% frail. Overall, 38% of patients reported ≥1 severe symptoms based on preestablished Edmonton Symptom Assessment Scale criteria. Higher frailty categories were associated with increased prevalence of pain, dyspnea, fatigue, nausea, poor appetite, drowsiness, depression and poor well-being (test for trend, all P < 0.05). Frail patients were also more likely to report psychological distress and poor QOL (all P < 0.01). In univariate analysis, each 0.5 increase in liver frailty index was associated with 44% increased odds of experiencing ≥1 severe symptoms [95% confidence interval (CI), 1.2-1.7, P < 0.001], which persisted (odds ratio, 1.3, 95% CI, 1.0-1.6, P = 0.004) even after adjusting for Model for End Stage Liver Disease-Sodium, ascites, hepatic encephalopathy and age. CONCLUSION: In patients with cirrhosis, frailty is strongly associated with physical/psychological symptoms, including pain and depression and poor QOL. Frail patients with cirrhosis may benefit from palliative care co-management to address symptoms and improve QOL.


Asunto(s)
Enfermedad Hepática en Estado Terminal , Fragilidad , Enfermedad Hepática en Estado Terminal/diagnóstico , Femenino , Fibrosis , Fragilidad/complicaciones , Fragilidad/diagnóstico , Fragilidad/epidemiología , Humanos , Cirrosis Hepática/complicaciones , Cirrosis Hepática/diagnóstico , Masculino , Persona de Mediana Edad , Dolor/diagnóstico , Dolor/epidemiología , Dolor/etiología , Calidad de Vida , Autoinforme , Índice de Severidad de la Enfermedad
18.
J Pain Symptom Manage ; 62(1): 28-38, 2021 07.
Artículo en Inglés | MEDLINE | ID: mdl-33246071

RESUMEN

CONTEXT: Understanding the unique needs of patients seen in clinic versus at home can help palliative care (PC) teams choose how to maximize available resources. OBJECTIVES: To compare the characteristics and PC needs of patients seen by PC teams in clinic versus at home. METHODS: We analyzed data from the Palliative Care Quality Network between August 2016 and September 2019 and compared demographics, diagnosis, reason for referral, PC needs, functional status, self-reported symptoms, and patient-reported quality of life. RESULTS: Compared to patients receiving PC in clinic, patients receiving PC at home were more likely to be of age 80 years or older (odds ratio [OR] 7.5, 95% CI 5.0, 10.9, P < 0.0001), have lower functional status (mean Palliative Performance Scale score 53% vs. 68%, P < 0.0001), and were less likely to screen positive for needing pain management (OR 0.31, 95% CI 0.22, 0.42, P < 0.0001) or other symptom management (OR 0.61, 95% CI 0.41, 0.90, P = 0.01). Patients receiving care at home were more likely to be referred for care planning (goals of care discussions or advance care planning) (OR 11.5, 95% CI 8.3, 16.0 P < 0.0001) and patient/family support (OR 5.9, 95% CI 4.2, 8.3, P < 0.0001). CONCLUSION: Patients seen by PC teams at home had worse function and were more likely to be referred for care planning, while patients seen in clinic had more PC needs related to pain and symptom management. Despite these differences, both populations have significant PC needs that support routine assessment and require appropriately staffed interdisciplinary teams to address these needs.


Asunto(s)
Planificación Anticipada de Atención , Enfermería de Cuidados Paliativos al Final de la Vida , Anciano de 80 o más Años , Humanos , Cuidados Paliativos , Calidad de Vida , Derivación y Consulta
19.
J Palliat Med ; 24(12): 1823-1832, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34115958

RESUMEN

Background: The morbidity and mortality of interstitial lung disease (ILD) is high, despite novel therapeutics. Recognizing unmet needs for symptom management, advance care planning (ACP), and support for people with ILD and their families, we developed a palliative care-ILD collaborative care pilot program to improve access to palliative care. Methods: In the quantitative arm of this mixed-methods study, we evaluated which patients were cared for through the palliative care co-management program and the impact of the program on rates of ACP and opioid prescribing. In the qualitative arm, we interviewed patients and family caregivers, as well as pulmonary and palliative care clinicians, to understand perceptions about palliative care. Results: Thirty-one patients were co-managed by the palliative care and ILD teams during the study period. Half (48.4%) had idiopathic pulmonary fibrosis. Mean forced vital capacity (FVC) was 61.7%. Nearly half (48.4%) received all of their palliative care via telehealth. With palliative care, the rate of ACP notes increased from 3.2% to 100% (p < 0.001), rate of advance directive completion increased from 22.6% to 35.5% (p = 0.046), and rate of physician orders for life-sustaining treatments (POLST) form completion increased from 0% to 35.5% (p = 0.001). Half (51.6%) were prescribed opiates, overwhelmingly short-acting opiates to use as needed for severe episodic dyspnea. Themes from the qualitative analyses included that the palliative care team was supportive and patient-centered, improved symptoms and medication side effects, and enhanced illness understanding. Clinicians reported how palliative care co-management improved patient care and clinician experience, but barriers to referral remain including misperceptions about palliative care on the part of providers and patients. Conclusions: Palliative care co-management for patients with moderately severe ILD holds promise, and our experience can inform groups at other centers who are interested in developing such care models. Ongoing challenges include systematically reaching all patients who are likely to benefit.


Asunto(s)
Planificación Anticipada de Atención , Enfermedades Pulmonares Intersticiales , Analgésicos Opioides/uso terapéutico , Humanos , Enfermedades Pulmonares Intersticiales/terapia , Cuidados Paliativos/métodos , Pautas de la Práctica en Medicina
20.
Europace ; 12(12): 1745-9, 2010 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-20852289

RESUMEN

AIMS: It remains unclear whether cardiac resynchronization therapy (CRT) device implantation during inpatient (IP) hospitalization affords the same benefit as elective outpatient (OP) implantation. We hypothesized that IPs undergoing CRT device implantation during acute hospitalization may have worse outcomes compared with elective OP implantation. METHODS AND RESULTS: We retrospectively separated patients undergoing CRT implants at Massachusetts General Hospital into OP (n= 196) and IP (n = 105) cohorts. Long-term outcomes, measured as heart failure (HF) hospitalization, all-cause mortality, ventricular assist device placement, or heart transplant over a 2-year follow-up period, were estimated by the Kaplan-Meier method. Propensity scores were generated to balance the baseline co-morbidities between IP and OP. Baseline age, gender, left ventricular ejection fraction, and aetiology of cardiomyopathy were comparable between OP and IP (66.8 ± 11.8 vs. 67.5 ± 13.4 years, 78 vs. 84% males, 24 vs. 23%, and 39 vs. 50% ischaemic, P = NS). Inpatients had greater burden of diabetes mellitus (40 vs. 27%, P = 0.028), renal insufficiency (47 vs. 25%, P< 0.001), and right ventricular dysfunction (54 vs. 39%, P = 0.026) compared with OPs. At 2-year follow-up, IP implant was associated with greater risk of HF hospitalization (HR 1.6, 95% CI 1.03-2.48, P = 0.038) compared with elective OP implants. After propensity score adjustment, there was no statistically significant difference in HF hospitalization between the IP and OP groups (HR 1.031, 95% CI 0.61-1.78, P = 0.91). CONCLUSION: Compared with OP CRT implants, IPs are at increased risk for recurrent HF hospitalization; however, the increased risk is attributable to greater co-morbidities in the IP population.


Asunto(s)
Dispositivos de Terapia de Resincronización Cardíaca , Terapia de Resincronización Cardíaca/métodos , Insuficiencia Cardíaca/diagnóstico , Insuficiencia Cardíaca/terapia , Pacientes Internos , Pacientes Ambulatorios , Anciano , Anciano de 80 o más Años , Estudios de Cohortes , Comorbilidad , Diabetes Mellitus/epidemiología , Femenino , Insuficiencia Cardíaca/mortalidad , Humanos , Estimación de Kaplan-Meier , Masculino , Persona de Mediana Edad , Pronóstico , Insuficiencia Renal/epidemiología , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Resultado del Tratamiento
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