Validation of a palliative needs assessment tool in ILD (NA-ILD study)
Research type
Research Study
Full title
The validation of an assessment tool to identify the palliative care needs of people with irreversible interstitial lung disease for use in every day clinical practice.
IRAS ID
146427
Contact name
Miriam Johnson
Contact email
Sponsor organisation
R&D Department, Hull and East Yorkshire Hospitals NHS Trust
Research summary
The purpose of this study is to test the reliability of and validate a clinical needs assessment tool for people with interstitial lung disease (ILD). This will help identify palliative needs and those patients who need referral to specialist palliative care services.
ILD is a group of conditions resulting in lung fibrosis which causes a progressive loss of functional ability and death from respiratory failure. Most patients experience serious symptoms and psycho-social, financial and spiritual distress in the last year of life. Despite national guidelines recognising that patients have specific palliative care needs, routine assessments of these are not part of clinical practice, and palliative care is rarely accessed. The needs assessment tool-progressive disease - cancer (NAT:PD-C), developed for use in oncology, is an ”aide-memoire” designed to help busy clinicians identify patients with palliative needs in daily practice. It has been shown to reduce unmet palliative care needs and has been adapted for heart failure patients. A clinician-rated tool, for this purpose which can be used in the clinic or ward round is currently missing in ILD management. We have adapted this tool for use in people with ILD and now wish to test its reliability and validity in practice.
Aim
To test and validate the adapted NAT:PD-ILD.Methods:
We are a three site collaborative (Hull, London, Manchester).This will be a three stage project:
1. Test the NAT:PD-ILD for face validity (does it appear to cover the relevant clinical issues?).
2. Test the NAT:PD-ILD for inter-rater and test-retest reliability using video-recorded patient consultations (are the results reliable between testers and on repeat testing?).
3. Test the construct validity of the NAT:PD-ILD against agreed comparator constructs using health related quality of life instruments in use for people with ILD (does it accurately identify patient-rated concerns?).REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
14/NE/0127
Date of REC Opinion
22 Apr 2014
REC opinion
Favourable Opinion