Dataset Information

Assessing Patterns of Palliative Care Referral and Location of Death in Patients with Idiopathic Pulmonary Fibrosis: A Sixteen-Year Single-Center Retrospective Cohort Study.

ABSTRACT: Background: Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal lung disease with an unpredictable course and a median survival of three to four years. This timeline challenges providers to approach diagnosis, oxygen therapy, rehabilitation, transplantation, and end-of-life discussions in limited encounters. There is currently no widely accepted guideline for determining when IPF patients should be referred to palliative care (PC). Objective: We sought to describe the patient and clinical factors associated with PC referral, as well as its impact on mortality and location of death. We also aimed to examine temporal trends in PC referral in this population. Materials and Methods: Patient data were retrospectively extracted from the health system repository of our specialty referral center for all new IPF patients evaluated between 2000 and 2016 (n?=?828). Exclusion criteria included transplant recipients and patients who did not have IPF. Results: One hundred twelve (13.5%) IPF patients received formal PC referral. Recipients were older at diagnosis (72 years vs. 69 years, p?p?=?0.011), resided closer to our institution (16 miles vs. 54 miles, p?p?p?=?0.006) and more in-home and hospice death (56% vs. 40%, p?=?0.006). Conclusions: IPF patients referred to PC were older with more severe comorbidities, resided closer to our specialty referral center, and had more outpatient follow-up. This was associated with more in-home and hospice deaths. The patient-provider relationship and frequency of follow-up visits likely play important roles in the introduction of end-of-life discussions.

SUBMITTER: Zou RH

PROVIDER: S-EPMC7869870 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Assessing Patterns of Palliative Care Referral and Location of Death in Patients with Idiopathic Pulmonary Fibrosis: A Sixteen-Year Single-Center Retrospective Cohort Study.

Zou Richard H RH Nouraie Mehdi M Chen Xiaoping X Saul Melissa I MI Kaminski Naftali N Gibson Kevin F KF Kass Daniel J DJ Lindell Kathleen O KO

Journal of palliative medicine 20190107 5

Background: Idiopathic pulmonary fibrosis (IPF) is a progressive and fatal lung disease with an unpredictable course and a median survival of three to four years. This timeline challenges providers to approach diagnosis, oxygen therapy, rehabilitation, transplantation, and end-of-life discussions in limited encounters. There is currently no widely accepted guideline for determining when IPF patients should be referred to palliative care (PC). Objective: We sought to d ...[more]

PMID: 30615545

Similar Datasets

Project description:Background: The American Society of Clinical Oncology's recommendation for "dedicated palliative care services, early in the disease course, concurrent with active treatment" for cancer patients is a challenge for cancer centers to accommodate. Despite demonstrated benefits of concurrent care, disparities among socioeconomic and ethnic groups in access to supportive care services have been described. The aim of this project was to evaluate: (a) how insurance coverage and ethnicity impact patient symptom burden and, (b) how those factors influence palliative access for patients at a South Texas NCI-designated cancer center. Methods: During a 5-month prospective period, 604 patients from five ambulatory oncology clinics completed the 10 question Edmonton Symptom Assessment Scale (ESAS) surveys during their clinic visit. Patient demographics, ESAS scores, palliative referral decisions, and time to palliative encounters were collected. We compared symptom burden and time to consult based on ethnicity and insurance status (insured = Group A; under-insured and safety net = Group B). Results: The mean ESAS score for all patients at the initial visit was 19.9 (SD = 18.1). Safety net patients were significantly more likely to be Hispanic, younger in age, and have an underlying GI malignancy in comparison to insured patients; however, the symptom severity was similar between groups with over 40% of individuals reporting at least one severe symptom. Twenty-one referrals were made to palliative care. On average, Group B had 33.3 days longer wait times until their first potential visit (p < 0.01) when compared to Group A. Time to actual visit was on average 57.6 days longer for patients in Group B compared to patients in Group A (p = 0.01), averaging at 73.8 days for safety net patients. Conclusions: This project highlights the high symptom burden of oncology patients and disparities in access to services based on insurance coverage. This investigation revealed a 4-fold increase in the time to the first scheduled palliative care visit based on whether patients were insured vs. under-insured. While this study is limited by a small sample size, data suggest that under-insured oncology patients may have significant barriers to palliative care services, which may influence their cancer care quality.

Project description:Amyloidosis of the gastrointestinal tract, with biopsy-proven disease, is rare. We reviewed a series of patients who presented with biopsy-proven gastrointestinal amyloidosis and report their clinical characteristics, treatments, and survival. This is a retrospective review of data prospectively collected from January 1998 to December 2011 in a tertiary referral center; 2,334 patients with all types of amyloidosis were evaluated during this period. Seventy-six patients (3.2%) had biopsy-proven amyloid involvement of the gastrointestinal tract. Their median age was 61 years (range, 34-79). Systemic amyloidosis with dominant gastrointestinal involvement was present in 60 (79%) patients, whereas the other 16 (21%) patients had amyloidosis localized to the gastrointestinal tract without evidence of an associated plasma cell dyscrasia or other organ involvement. Of the 60 systemic cases, 50 (83%) had immunoglobulin light-chain, five (8%) had familial lysozyme, three (5%) had wild-type transthyretin, and two (3%) had mutant transthyretin amyloidosis. The most frequent symptoms for all patients were weight loss in 33 (45%) and gastrointestinal bleeding in 27 (36%). Incidental identification of amyloidosis on routine endoscopic surveillance played a role in the diagnosis of seven patients with systemic immunoglobulin light-chain, and four patients with immunoglobulin light-chain localized to the gastrointestinal tract. Amyloid protein subtyping was performed in 12 of the cases of localized disease, and all had lambda light chain disease. Of the 50 patients with systemic immunoglobulin light-chain amyloidosis, 45 were treated with anti-plasma cell therapy. The median survival has not been reached for this group. For the 16 patients with localized gastrointestinal amyloidosis, supportive care was the mainstay of treatment; none received anti-plasma cell therapy. All 16 are alive at a median follow-up of 36 months (range, 1-143). Patients with biopsy-proven gastrointestinal amyloidosis often present with weight loss and bleeding. In localized cases, all that underwent typing were due to lambda light chain amyloidosis and none progressed to systemic disease during the period of follow-up. Most patients with systemic disease had immunoglobulin light-chain, and their tolerance of therapy and median survival were excellent. Although a rare manifestation of amyloidosis, staining for amyloid should be considered in patients undergoing gastrointestinal biopsy who have unexplained chronic gastrointestinal symptoms.

Dataset Information

Assessing Patterns of Palliative Care Referral and Location of Death in Patients with Idiopathic Pulmonary Fibrosis: A Sixteen-Year Single-Center Retrospective Cohort Study.

Publications

Assessing Patterns of Palliative Care Referral and Location of Death in Patients with Idiopathic Pulmonary Fibrosis: A Sixteen-Year Single-Center Retrospective Cohort Study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets