ADAPTATION, FACE AND CONTENT VALIDATION OF A PALLIATIVE CARE NEEDS ASSESSMENT TOOL FOR PEOPLE WITH INTERSTITIAL LUNG DISEASE

IntroductionPatients with progressive idiopathic fibrotic interstitial lung disease (ILD), such as those with idiopathic pulmonary fibrosis (IPF), can have an aggressive disease course, with a median survival of only 3–5 years from diagnosis. The palliative care needs of these patients are often unmet. There are calls for new models of care, whereby the patient’s usual respiratory clinician remains central to the integration of palliative care principles and practices into their patient’s management, but the optimal model of service delivery has yet to be determined.MethodsWe developed a novel, collaborative, multidisciplinary team (MDT) meeting between our palliative care, psychology and ILD teams with the principal aim of integrating specialist care to ensure the needs of persons with ILD, and their caregivers were identified and met by referral to the appropriate service. The objective of this study was to assess the effectiveness of this novel MDT meeting on the assessment of a patient’s palliative care needs.ResultsSignificant increases in advance care planning discussions were observed, in conjunction with increased referrals to community courses and teams, following introduction of this novel MDT.ConclusionsOur results suggest that our collaborative MDT is an effective platform to address patients’ unmet palliative care needs. Further work is required to explore the effect of our model on achieving the preferred place of death and reductions in unplanned hospital admissions.

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The Adaptation, Face, and Content Validation of a Needs Assessment Tool: Progressive Disease for People with Interstitial Lung Disease

Journal of Palliative Medicine ◽

10.1089/jpm.2015.0355 ◽

2016 ◽

Vol 19 (5) ◽

pp. 549-555 ◽

Cited By ~ 16

Author(s):

Jason W. Boland ◽

Carla Reigada ◽

Janelle Yorke ◽

Simon P. Hart ◽

Sabrina Bajwah ◽

...

Keyword(s):

Interstitial Lung Disease ◽

Lung Disease ◽

Needs Assessment ◽

Progressive Disease ◽

Assessment Tool ◽

Content Validation

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Psychometric validation of the needs assessment tool: progressive disease in interstitial lung disease

Thorax ◽

10.1136/thoraxjnl-2017-210911 ◽

2017 ◽

Vol 73 (9) ◽

pp. 880-883 ◽

Cited By ~ 5

Author(s):

Miriam J Johnson ◽

Armita Jamali ◽

Joy Ross ◽

Caroline Fairhurst ◽

Jason Boland ◽

...

Keyword(s):

Interstitial Lung Disease ◽

Lung Disease ◽

Needs Assessment ◽

Assessment Tool ◽

Clinical Effectiveness ◽

Psychometric Validation ◽

Care Needs ◽

Carer Support ◽

St George's Respiratory Questionnaire ◽

Test Retest Reliability

The inter-rater/test–retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George’s Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test–retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall’s tau-b, 0.24–20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23–20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated.

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The palliative care needs for fibrotic interstitial lung disease: A qualitative study of patients, informal caregivers and health professionals

Palliative Medicine ◽

10.1177/0269216313497226 ◽

2013 ◽

Vol 27 (9) ◽

pp. 869-876 ◽

Cited By ~ 85

Author(s):

Sabrina Bajwah ◽

Irene J Higginson ◽

Joy R Ross ◽

Athol U Wells ◽

Surinder S Birring ◽

...

Keyword(s):

Palliative Care ◽

Interstitial Lung Disease ◽

Qualitative Study ◽

Lung Disease ◽

Health Professionals ◽

Informal Caregivers ◽

Care Needs ◽

Palliative Care Needs

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Palliative Care Needs Assessment Tool

PsycTESTS Dataset ◽

10.1037/t47529-000 ◽

2008 ◽

Author(s):

A. Waller ◽

A. Girgis ◽

D. Currow ◽

C. Lecathelinais

Keyword(s):

Palliative Care ◽

Needs Assessment ◽

Assessment Tool ◽

Care Needs ◽

Palliative Care Needs

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

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211040232 ◽

2021 ◽

pp. 104990912110402

Author(s):

Said Chaaban ◽

James McCormick ◽

Debra Gleason ◽

Jessica M. McFarlin

Keyword(s):

Palliative Care ◽

Interstitial Lung Disease ◽

Lung Disease ◽

Disease Patient ◽

Care Needs ◽

Life Planning ◽

Palliative Care Consultation ◽

End Of Life Planning ◽

Planning Methods ◽

Palliative Care Needs

Patients with interstitial lung disease (ILD) have many unmet palliative care needs. The majority of patients with chronic ILD have poor access to a specialist in palliative medicine and that is due to several barriers. The mortality for the ILD patient is high and reaches up to 80% if admitted to the ICU with respiratory failure. Palliative care addresses symptoms in diseases where cure is unlikely or impossible. Palliative care consultation also ensures communication among patients, caregivers and providers regarding treatments, prognosis, and end of life planning. Methods: We performed a literature review on palliative care and ILD, accessing articles published since 2002. We found 71 articles related to the topic. We chose 37 that were most relevant and with no redundancy of information to include in this review. Objectives: Summarize the palliative care needs of patients with ILD, discuss the barriers to receiving palliative care, and summarize clinical practice for providing palliative care to this patient population.

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Palliative care needs-assessment and measurement tools used in patients with heart failure: a systematic mixed-studies review with narrative synthesis

Heart Failure Reviews ◽

10.1007/s10741-020-10011-7 ◽

2020 ◽

Vol 26 (1) ◽

pp. 137-155

Author(s):

Bader Nael Remawi ◽

Amy Gadoud ◽

Iain Malcolm James Murphy ◽

Nancy Preston

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Needs Assessment ◽

Assessment Tool ◽

Cochrane Library ◽

Patient Needs ◽

Care Needs ◽

Patients With Heart Failure ◽

Measurement Tools ◽

Palliative Care Needs

AbstractPatients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.

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