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

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

doi:10.1089/jpm.2015.0355

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

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

^*Corresponding author for this work

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Research output: Contribution to journal › Article › peer-review

24 Citations (Scopus)

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.

Original language	English
Pages (from-to)	549-555
Number of pages	7
Journal	Journal of Palliative Medicine
Volume	19
Issue number	5
Early online date	3 Feb 2016
DOIs	https://doi.org/10.1089/jpm.2015.0355
Publication status	Published - 1 May 2016

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Boland, J. W., Reigada, C., Yorke, J., Hart, S. P., Bajwah, S., Ross, J., Wells, A., Papadopoulos, A., Currow, D. C., Grande, G., Macleod, U., & 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

@article{45d011cdff6b4f0eb18b10e2ad0c77d3,

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

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.",

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

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doi = "10.1089/jpm.2015.0355",

language = "English",

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Boland, JW, Reigada, C, Yorke, J, Hart, SP, Bajwah, S, Ross, J, Wells, A, Papadopoulos, A, Currow, DC, Grande, G, Macleod, U & Johnson, MJ 2016, 'The Adaptation, Face, and Content Validation of a Needs Assessment Tool: Progressive Disease for People with Interstitial Lung Disease', Journal of Palliative Medicine, vol. 19, no. 5, pp. 549-555. https://doi.org/10.1089/jpm.2015.0355

TY - JOUR

T1 - The Adaptation, Face, and Content Validation of a Needs Assessment Tool

T2 - Progressive Disease for People with Interstitial Lung Disease

AU - Boland, Jason W.

AU - Reigada, Carla

AU - Yorke, Janelle

AU - Hart, Simon P.

AU - Bajwah, Sabrina

AU - Ross, Joy

AU - Wells, Athol

AU - Papadopoulos, Athanasios

AU - Currow, David C.

AU - Grande, Gunn

AU - Macleod, Una

AU - Johnson, Miriam J.

PY - 2016/5/1

Y1 - 2016/5/1

N2 - 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.

AB - 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.

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U2 - 10.1089/jpm.2015.0355

DO - 10.1089/jpm.2015.0355

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AN - SCOPUS:84968735711

SN - 1096-6218

VL - 19

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JO - Journal of Palliative Medicine

JF - Journal of Palliative Medicine

IS - 5

ER -

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

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