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The adaptation, face, and content validation of a needs assessment tool: progressive disease for people with interstitial lung disease

Boland, Jason W.; Reigada, Carla; Yorke, Janelle; Hart, Simon P.; Bajwah, Sabrina; Ross, Joy; Wells, Athol; Papadopoulos, Athanasios; Currow, David C.; Grande, Gunn; Macleod, Una; Johnson, Miriam J.

Authors

Jason W. Boland

Carla Reigada

Janelle Yorke

Sabrina Bajwah

Joy Ross

Athol Wells

Athanasios Papadopoulos

David C. Currow

Gunn Grande



Abstract

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.

Citation

Boland, J. W., Reigada, C., Yorke, J., Hart, S. P., Bajwah, S., Ross, J., …Johnson, M. J. (2016). The adaptation, face, and content validation of a needs assessment tool: progressive disease for people with interstitial lung disease. Journal of palliative medicine, 19(5), 549-555 . https://doi.org/10.1089/jpm.2015.0355

Journal Article Type Article
Acceptance Date Jan 3, 2016
Online Publication Date Feb 3, 2016
Publication Date 2016-05
Deposit Date Feb 11, 2016
Publicly Available Date Feb 11, 2016
Journal Journal of palliative medicine
Print ISSN 1096-6218
Electronic ISSN 1557-7740
Publisher Mary Ann Liebert
Peer Reviewed Peer Reviewed
Volume 19
Issue 5
Pages 549-555
DOI https://doi.org/10.1089/jpm.2015.0355
Keywords Interstitial lung disease, Needs assessment tool , ILD
Public URL https://hull-repository.worktribe.com/output/385287
Publisher URL http://online.liebertpub.com/doi/10.1089/jpm.2015.0355
Additional Information Copy of article first published in: Journal of palliative medicine, 2016.

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