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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.


Jason W. Boland

Carla Reigada

Janelle Yorke

Simon P. Hart

Sabrina Bajwah

Joy Ross

Athol Wells

Athanasios Papadopoulos

David C. Currow

Gunn Grande


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.

Journal Article Type Article
Publication Date 2016-05
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
APA6 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 .
Keywords Interstitial lung disease, Needs assessment tool , ILD
Publisher URL
Additional Information Copy of article first published in: Journal of palliative medicine, 2016.


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