Palliative Care for the Interstitial Lung Disease Patient a Must and Not Just a Need

Chaaban, Said; McCormick, John R.; Gleason, Debra; McFarlin, Jessica

doi:10.1177/10499091211040232

Cited by 5 publications

(11 citation statements)

References 37 publications

(96 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Since the course of IPF is unpredictable early palliative care interventions can be beneficial in a multiplicity of ways including symptom management, (16, 79) emotional support and in the initiation of advance care planning conversations. (53)…”

Section: Resultsmentioning

confidence: 99%

“…(55, 76) Startingly, despite these recommendations, patients with IPF do not receive optimal palliative care over the course of their disease resulting in high symptom burden and decreased quality of life for patients with ILD. (60, 79) There is increasing evidence that patients with IPF do not always have access to palliative care input and when it is introduced the timeline is rarely optimal. (17, 28)There continues to be poor referral and access to palliative care specialists with some healthcare professionals reporting a lack of training in palliative care, (53) insufficient communication training in facilitating these conversations, variations in the disease trajectory (54) and patients preferences to have these conversations.…”

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF)

Bramhill,

Langan,

Mulryan

et al. 2023

Preprint

View full text Add to dashboard Cite

TitleA scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF).AimsPatients diagnosed with IPF have a high symptom burden and numerous needs that remain largely unaddressed despite advances in available treatment options. There is a need to comprehensively identify patients’ needs and create opportunities to address them. This scoping review aimed to synthesise the available evidence and identify gaps in the literature regarding the unmet needs of patients diagnosed with IPF.MethodsThe protocol for the review was registered with Open Science Framework (DOI 10.17605/OSF.IO/SY4KM). A systematic search was performed in March 2022, in CINAHL, MEDLINE, Embase, PsyhcoInfo, Web of Science Core Collection and ASSIA Applied Social Science Index. A comprehensive review of grey literature was also completed. Inclusion criteria included patients diagnosed with IPF or PF; English language only and date range 2011-2022. A range of review types were included. Data was extracted using a data extraction form. Data was analysed using descriptive and thematic analysis. A total of 884 citations were reviewed. Ethical approval was not required.Results52 citations were selected for final inclusion. Five themes were identified: psychological impact of an IPF diagnosis; adequate information and education: at the right time and in the right way; high symptom burden support needs; referral to palliative care and advanced care planning (ACP) and health service provision-a systems approach.ConclusionThis review highlights the myriad of needs patients with IPF have and highlights the urgent need for a systems approach to care, underpinned by an appropriately resourced multi-disciplinary team. The range of needs experienced by patients with IPF are broad and varied and require a holistic approach to care including targeted research, coupled with the continuing development of patient-focused services and development of a clinical care programme.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF)

Bramhill,

Langan,

Mulryan

et al. 2023

Preprint

View full text Add to dashboard Cite

show abstract

“… 16 17 Many patients also require complex respiratory care toward the latter part of the disease course, leading to an increased burden on patients, their families and the healthcare system. 17 …”

Section: Introductionmentioning

confidence: 99%

“…Patients diagnosed with IPF have an uncertain prognosis, high symptom burden and may experience significant physical and emotional impacts related to potential comorbidities, including other pulmonary conditions, culminating in significant deterioration in quality of life 16 17. Many patients also require complex respiratory care toward the latter part of the disease course, leading to an increased burden on patients, their families and the healthcare system 17…”

Section: Introductionmentioning

confidence: 99%

Exploration of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis: a scoping review protocol

et al. 2023

View full text Add to dashboard Cite

IntroductionInterstitial lung diseases consist of a range of lung disorders, the most prevalent being idiopathic pulmonary fibrosis (IPF). IPF is a chronic, progressive disease, resulting in loss of lung function and potentially significant impacts on quality of life. There is an increasing need to address unmet needs in this population as there is evidence that unmet needs may impact quality of life and health outcomes. The key objective of this scoping review is to define the unmet needs of patients living with a diagnosis of IPF and to identify gaps in the literature relating to unmet needs. Findings will inform the development of services and the introduction of patient-centred clinical care guidelines for IPF.Methods and analysisThis scoping review is guided by the methodological framework for conducting scoping reviews developed by the Joanna Briggs Institute. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist is used for guidance. The following databases will be searched: CINAHL, MEDLINE, PsycINFO, Web of Science, Embase and ASSIA and include a comprehensive grey literature search. The review will report on adult patients >18 with a diagnosis of IPF or pulmonary fibrosis and be limited to publications from 2011 onwards, with no language restrictions applied. Two independent reviewers will screen articles in consecutive stages for relevance against the inclusion and exclusion criteria. Data will be extracted using a predefined data extraction form and analysed using descriptive and thematic analysis. Findings will be presented in tabular form, coupled with a narrative summary of the evidence.Ethics and disseminationEthics approval is not required for this scoping review protocol. We will disseminate our findings using traditional approaches that include open access peer-reviewed publications and scientific presentations.

show abstract

“…Patients diagnosed with IPF, have an uncertain prognosis, high symptom burden and may suffer from complications related to multiple potential comorbidities including other pulmonary conditions resulting in impaired quality of life 21 22 . In many cases, patients also require complex respiratory care particularly at the end of life 23 .…”

Section: Introductionmentioning

confidence: 99%

An exploration of the unmet needs of patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF): a scoping review protocol

Bramhill

Langan

Mulryan

et al. 2022

Preprint

View full text Add to dashboard Cite

Introduction: Interstitial lung diseases (ILDs) consist of a range of lung disorders with the most prevalent being Idiopathic pulmonary fibrosis (IPF) 1 2. Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive disease, resulting in loss of lung function and potentially significant Impacts on quality of life 1. There is an increasing need to address unmet needs in this population as there is evidence that unmet needs may impact quality of life and health outcomes. The key objective of this scoping is to define the unmet needs of patients living with a diagnosis of IPF and to identify gaps in the literature relating to unmet needs. Findings will inform the development of services and the introduction of patient-centred clinical care guidelines for Idiopathic Pulmonary Fibrosis (IPF). Methods and Analysis: This scoping review is guided by the methodological framework for conducting scoping reviews developed by the Joanna Briggs Institute 3. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist is used for guidance. The following databases will be searched CINAHL, MEDLINE, PsyhcoInfo (EBSCO platform), Web of Science (Core Collection), Embase (Elsevier), ASSIA Proquest). A comprehensive review of grey literature will be completed. Two independent reviewers will screen articles in consecutive stages from title/abstract screening to full-text screening for relevance against the inclusion and exclusion criteria. Data will be extracted using a predefined data extraction form. Data will be analysed using descriptive and thematic analysis. Findings will be presented in a general descriptive overview and tabular summaries coupled with a narrative summary of findings. Ethics and dissemination: Ethics approval is not required for this scoping review protocol. This protocol was peer reviewed by Academics as part of the doctoral programme of study. We will disseminate our findings using traditional approaches that include open access peer-reviewed publication and scientific presentations. Keywords: Idiopathic Pulmonary Fibrosis, Pulmonary Fibrosis, Unmet needs, support, barrier

show abstract

Palliative Care for the Interstitial Lung Disease Patient a Must and Not Just a Need

Cited by 5 publications

References 37 publications

A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF)

A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF)

Exploration of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis: a scoping review protocol

An exploration of the unmet needs of patients diagnosed with Idiopathic Pulmonary Fibrosis (IPF): a scoping review protocol

Contact Info

Product

Resources

About