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

Boland, JW; Reigada, C; Yorke, J; Hart, SP; Bajwah, S; Ross, J; Wells, A; Papadopoulos, A; Currow, DC; Grande, G; Macleod, U; Johnson, MJ

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

Boland, JW Reigada, C Yorke, J Hart, SP Bajwah, S Ross, J Wells, A Papadopoulos, A Currow, DC

Grande, G Macleod, U Johnson, MJ

Permalink

Publication Type:: Journal Article
Citation:: Journal of Palliative Medicine, 2016, 19 (5), pp. 549 - 555
Issue Date:: 2016-05-01

Closed Access

	Filename	Description	Size
	jpm.2015.0355.pdf	Published Version	138.5 kB	Adobe PDF	View/Open

Copyright Clearance Process

Recently Added
In Progress
Closed Access

This item is closed access and not available.

Full metadata record

Field	Value	Language
dc.contributor.author	Boland, JW	en_US
dc.contributor.author	Reigada, C	en_US
dc.contributor.author	Yorke, J	en_US
dc.contributor.author	Hart, SP	en_US
dc.contributor.author	Bajwah, S	en_US
dc.contributor.author	Ross, J	en_US
dc.contributor.author	Wells, A	en_US
dc.contributor.author	Papadopoulos, A	en_US
dc.contributor.author	Currow, DC https://orcid.org/0000-0003-1988-1250	en_US
dc.contributor.author	Grande, G	en_US
dc.contributor.author	Macleod, U	en_US
dc.contributor.author	Johnson, MJ	en_US
dc.date.issued	2016-05-01	en_US
dc.identifier.citation	Journal of Palliative Medicine, 2016, 19 (5), pp. 549 - 555	en_US
dc.identifier.issn	1096-6218	en_US
dc.identifier.uri	http://hdl.handle.net/10453/105382
dc.description.abstract	© Jason Boland, et al., 2016; Published by Mary Ann Liebert, Inc. 2016. Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n = 7; n = 4); one caregiver (n = 3); and one clinician (n = 8). There was a single caregiver interview, and an expert consensus group - academics (n = 3), clinicians (n = 9), patients (n = 4), and caregivers (n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.	en_US
dc.relation.ispartof	Journal of Palliative Medicine	en_US
dc.relation.isbasedon	10.1089/jpm.2015.0355	en_US
dc.subject.classification	Gerontology	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Lung Diseases, Interstitial	en_US
dc.subject.mesh	Palliative Care	en_US
dc.subject.mesh	Reproducibility of Results	en_US
dc.subject.mesh	Needs Assessment	en_US
dc.subject.mesh	Caregivers	en_US
dc.title	The Adaptation, Face, and Content Validation of a Needs Assessment Tool: Progressive Disease for People with Interstitial Lung Disease	en_US
dc.type	Journal Article
utslib.citation.volume	5	en_US
utslib.citation.volume	19	en_US
utslib.for	1103 Clinical Sciences	en_US
utslib.for	1110 Nursing	en_US
utslib.for	1117 Public Health and Health Services	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	closed_access
pubs.issue	5	en_US
pubs.publication-status	Published	en_US
pubs.volume	19	en_US

Abstract:

© Jason Boland, et al., 2016; Published by Mary Ann Liebert, Inc. 2016. Background: Irrreversible interstitial lung disease (ILD) is associated with high morbidity and mortality. Palliative care needs of patients and caregivers are not routinely assessed; there is no tool to identify needs and triage support in clinical practice. Objective: The study objective was to adapt and face/content validate a palliative needs assessment tool for people with ILD. Methods: The Needs Assessment Tool: Progressive Disease-Cancer (NAT:PD-C) was adapted to reflect the palliative care needs identified from the ILD literature and patient/caregiver interviews. Face and content validity of the NAT:PD-ILD was tested using patient/caregiver focus groups and an expert consensus group. Participants in the study were two English tertiary health care trusts' outpatients clinics. There were four focus groups: two patient (n = 7; n = 4); one caregiver (n = 3); and one clinician (n = 8). There was a single caregiver interview, and an expert consensus group - academics (n = 3), clinicians (n = 9), patients (n = 4), and caregivers (n = 2). Each item in the tool was revised as agreed by the groups. Expert consensus was reached. Results: Overall, the tool reflected participants' experience of ILD. Each domain was considered relevant. Adaptations were needed to represent the burden of ILD: respiratory symptoms (especially cough) and concerns about sexual activity were highlighted. All emphasized assessment of caregiver need as critical, and the role of caregivers in clinical consultations. Conclusions: The NAT:PD-ILD appears to have face and content validity. The inclusion of the family caregiver in the consultation as someone with their own needs as well as a source of information was welcomed. Reliability testing and construct validation of the tool are ongoing.

Please use this identifier to cite or link to this item:

http://hdl.handle.net/10453/105382