scholarly journals Comparison of Palliative Care Models in Idiopathic Pulmonary Fibrosis

2021 ◽  
Vol 11 (19) ◽  
pp. 9028
Author(s):  
Sarah Younus ◽  
Jeffrey A. Bakal ◽  
Janice Richman-Eisenstat ◽  
Ghadah Alrehaili ◽  
Sharina Aldhaheri ◽  
...  
Keyword(s):  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Symptom Management ◽  
Care Delivery ◽  
Referral Criteria ◽  
Location Of Death ◽  
Specialist Referral ◽  
Care Models ◽  
Eol Care

Introduction: Palliative care (PC) is recommended in idiopathic pulmonary fibrosis (IPF) patients but poorly implemented. Integration of PC into routine management by pulmonologists may improve overall and end-of-life (EOL) care, but the optimal model of PC delivery is unknown. Objective: To describe three PC care delivery models and their impact on EOL; the Multidisciplinary Collaborative ILD clinic, Edmonton, Canada (EC) and the Bristol ILD Service, UK (BC) that provide primary level PC; and the Queen’s University ILD Clinic, Kingston, Canada (QC), which refers IPF patients to a specialist PC Clinic using specific referral criteria. Methods: A multicenter retrospective observational study of IPF patients receiving care in the identified clinics (2012–2018) was designed. Demographics; PC delivery, including symptom management; advance care planning (ACP); and location of death data were examined. Results: 298 IPF patients were included (EC 95, BC 84, and QC 119). Median age was 71 years with 74% males. Overall, 63% (188) patients received PC. Primary PC approach in EC and BC led to more patients receiving PC (98% EC, 94% BC and 13% QC (p < 0.001/<0.001)) with earlier initiation compared to QC. Associated higher rates of non-pharmacologic dyspnea management [98% EC, 94% BC, and 2% QC (p < 0.001/<0.001); opioids (45% EC and BC, and 23% QC (p < 0.001/<0.001)); and ACP (100% EC and BC, and 13% QC patients (p < 0.001/<0.001))] were observed. Median follow up (IQR) was 16 months (5–28) with 122 deaths (41%). Primary PC model in EC and BC decedents was associated with more PC delivery (91% EC, 92% BC and 19% QC (p < 0.001)) with more symptoms management, oxygen, and opiate use than QC (p < 0.001; p = 0.04; p = 0.01). EOL discussions occurred in 73% EC, 63% BC, and 4% QC decedents (p = 0.001). Fifty-nine% (57) died at home or hospice and 38% (36) in hospitals. Concordance rate between preferred and actual location of death was 58% in EC (0.29 (−0.02–0.51)) and 37% in BC models (−0.11 (−0.20–0.15)). Conclusions: Primary PC approach for IPF is feasible in ILD clinics with concurrent disease management and can improve access to symptom management, ACP, PC and EOL care. Reliance on PC specialist referral for PC initiation outside of the ILD clinic can result in delayed care.

scholarly journals Lived experiences of patients with idiopathic pulmonary fibrosis: navigating through the complex healthcare system

2019 ◽  
Author(s):  
Yang Lyu ◽  
Yanrui Jia ◽  
Fengli Gao ◽  
Yaling Huang ◽  
Frances Lin
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Lived Experience ◽  
Health Care Professionals ◽  
Lived Experiences ◽  
Care Delivery ◽  
Tertiary Hospital ◽  
Care Needs ◽  
Care Models ◽  
Health Demands

Abstract Background : Over the last decade, idiopathic pulmonary fibrosis (IPF) has been attracting health care professionals’ attention worldwide due to its impact on poor survival rate and quality of life, such as ongoing physical and emotional distress experienced by patients and their families. The diagnosis and management of IPF patients often remain as a significant challenge for clinicians. Therefore, it is imperative to gain an in-depth understanding on experiences of IPF patients during their disease journey in order to improve the care delivered to this vulnerable group. The aim of this study was to explore the lived experiences of the disease journey and care needs of patients with IPF. Methods : A semi-structured face-to-face one on one interview was conducted with a purposive sampling of 16 IPF patients admitted to a respiratory medicine department of a tertiary hospital in Beijing, China. The consolidated criteria for reporting qualitative research checklist was used. Results : Four themes emerged from the qualitative data included the long and confusing journal to reach diagnosis, living with the disease, understanding the disease and treatment, and desire for continuity of care. Conclusions : The findings provide an in-depth understanding of the lived experience of the disease journey and the care needs in patients with IPF. There is an urgent need to improve the care delivery to this vulnerable population. To meet the health demands of this group of patients, it is of paramount importance to develop effective education programs for health professionals and IPF patients and also to improve the care models of healthcare systems, especially in the remote area in order to enhance the principle of continuing care for IPF patients in the communities.

scholarly journals Palliative Care and Location of Death in Decedents With Idiopathic Pulmonary Fibrosis

CHEST Journal ◽  
2015 ◽  
Vol 147 (2) ◽  
pp. 423-429 ◽  
Author(s):  
Kathleen O. Lindell ◽  
Zhan Liang ◽  
Leslie A. Hoffman ◽  
Margaret Q. Rosenzweig ◽  
Melissa I. Saul ◽  
...  
Keyword(s):  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Location Of Death

scholarly journals The Role of Palliative Care in Reducing Symptoms and Improving Quality of Life for Patients with Idiopathic Pulmonary Fibrosis: A Review

2020 ◽  
Vol 6 (1) ◽  
pp. 35-46 ◽  
Author(s):  
Richard H. Zou ◽  
Daniel J. Kass ◽  
Kevin F. Gibson ◽  
Kathleen O. Lindell
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Symptom Management ◽  
End Of Life Care ◽  
Current Data ◽  
Life Care

AbstractIdiopathic pulmonary fibrosis (IPF) is a progressive fibrotic lung disease with a median survival of 3–4 years from time of initial diagnosis, similar to the time course of many malignancies. A hallmark of IPF is its unpredictable disease course, ranging from long periods of clinical stability to acute exacerbations with rapid decompensation. As the disease progresses, patients with chronic cough and progressive exertional dyspnea become oxygen dependent. They may experience significant distress due to concurrent depression, anxiety, and fatigue, which often lead to increased symptom burden and decreased quality of life. Despite these complications, palliative care is an underutilized, and often underappreciated, resource before end-of-life care in this population. While there is growing recognition about early palliative care in IPF, current data suggest referral patterns vary widely based on institutional practices. In addition to focusing on symptom management, there is emphasis on supplemental oxygen use, pulmonary rehabilitation, quality of life, and end-of-life care. Importantly, increased use of support groups and national foundation forums have served as venues for further disease education, communication, and advanced care planning outside of the hospital settings. The purpose of this review article is to discuss the clinical features of IPF, the role of palliative care in chronic disease management, current data supporting benefits of palliative care in IPF, its role in symptom management, and practices to help patients and their caregivers achieve their best quality of life.

scholarly journals Lived experiences of patients with idiopathic pulmonary fibrosis: navigating through the complex healthcare system

2020 ◽  
Author(s):  
Yang Lyu ◽  
Yanrui Jia ◽  
Fengli Gao ◽  
Ya-ling Huang ◽  
Frances Lin
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Continuity Of Care ◽  
Lived Experiences ◽  
Care Delivery ◽  
Tertiary Hospital ◽  
Care Needs ◽  
Face To Face ◽  
Care Models

Abstract Background: Over the last decade, idiopathic pulmonary fibrosis (IPF) has been attracting healthcare professionals’ attention worldwide due to its impact on poor survival rate and quality of life, such as ongoing physical and emotional distress experienced by patients and their families. The diagnosis and management of IPF patients often remain a significant challenge for clinicians. Therefore, it is imperative to gain an in-depth understanding on experiences of IPF patients during their disease journey in order to improve the care delivered to this vulnerable group. We aimed to explore the lived experiences of disease journey and care needs of patients with IPF. Methods: Semi-structured face-to-face interview were conducted with a purposive sampling of sixteen IPF patients admitted to the department of respiratory medicine in a tertiary hospital in China. The consolidated criteria for reporting qualitative research was followed. Results: Four themes emerged from thematic analysis of the qualitative data included: the long and confusing journey to reach diagnosis, living with the disease, understanding the disease and treatment, and desire for continuity of care. Conclusions: There is an urgent need to improve the care delivery to this vulnerable population in China. To meet their health needs, it is of paramount importance to develop effective education programs for health professionals and IPF patients and to improve care models of healthcare systems, especially in the remote area in order to improve the continuity of care in the communities.

Where Patients With Cancer Die: A Population-Based Study, 1990 to 2012

2018 ◽  
Vol 34 (4) ◽  
pp. 224-231 ◽  
Author(s):  
Roger W. Hunt ◽  
Katina D’Onise ◽  
Anh-Minh Thi Nguyen ◽  
Kamalesh Venugopal
Keyword(s):  
Palliative Care ◽  
Nursing Homes ◽  
Care Delivery ◽  
Young Patients ◽  
Population Based ◽  
Place Of Death ◽  
Patients With Cancer ◽  
Metropolitan Hospital ◽  
Care Models ◽  
At Home

Aims:To describe changes in the place of death of patients with cancer from 1990 to 2012, and to identify issues for their end-of-life care.Materials and Methods:Population-based descriptive study, with analyses of place of death patterns, using the South Australian Cancer Registry records of 86 257 patients with cancer who died from 1990 to 2012.Results:From 1990 to 2012, the proportion of cancer deaths in hospital decreased from 63.4% to 50.9%, and in nursing homes increased from 8.2% to 22.5%. After the year 2000, the proportions in hospices and at home were both below 15%. Multivariate analyses showed that young patients with cancer were more likely to die in a hospice or at home, compared to elderly patients with cancer who were more likely to die in a nursing home; the likelihood of dying in a hospice increased with socioeconomic status; patients with a short survival time or a hematological malignancy were more likely to die in a metropolitan hospital.Conclusions:Compared to most other countries, the proportion of cancer deaths at home was low, and many patients would not have died at their preferred place. The trend for more cancer deaths to occur in nursing homes is likely to continue, but nursing homes generally lack the resources and skilled staff to provide quality palliative care. Models of palliative care delivery should take account of patient preferences, the growth of terminal cancer care in nursing homes, and apparent inequities.

Action plans in idiopathic pulmonary fibrosis: a qualitative study—‘I do what I can do’

2021 ◽  
pp. bmjspcare-2020-002831
Author(s):  
Meena Kalluri ◽  
Sarah Younus ◽  
Nathan Archibald ◽  
Janice Richman-Eisenstat ◽  
Charlotte Pooler
Keyword(s):  
Qualitative Study ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Lung Disease ◽  
Self Efficacy ◽  
Symptom Management ◽  
Management Strategies ◽  
Self Management ◽  
Chronic Obstructive ◽  
Action Plans

BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.AimTo explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.DesignA qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.ResultsThirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.ConclusionsThe approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.

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