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


The interstitial lung diseases (ILD) are a group of non-malignant conditions resulting in incurable lung fibrosis. Severe breathlessness, cough, fatigue and pain are experienced by most in the last year of life with psycho-social, financial and spiritual distress. Despite national guidelines recognising that patients have palliative needs, routine assessments do not occur and palliative care is rarely accessed. The needs assessment tool-progressive disease (NAT:PD-C), developed in oncology, is an "aide-memoire" designed to help a busy clinician identify patients with palliative needs in daily practice. Use of the NAT:PD-C has been shown to reduce unmet palliative needs. Our group has adapted this tool for people with ILD from data from a systematic literature review and a previous patient/care interview study. 

Aims of the research: 

To psychometrically test and validate a needs assessment tool (NAT:PD-C) adapted for use in people with ILD (NAT:PD-ILD). 


 The objectives of the study are:

  1. To test the psychometric properties (face validity, inter-rater and test-retest reliability, and construct validity) of the NAT: PD-ILD. 
  2. To examine the acceptability of the NAT: PD-ILD by clinicians. 


This three stage project will take place in the ILD services in 3 centres: Hull – Castle Hill hospital, Hull and East Yorkshire Hospitals NHS Trust; London - Royal Brompton & Harefield NHS Foundation Trust; Manchester - Pennine Acute Hospitals NHS Trust, Aintree University Hospitals NHS Foundation Trust, University Hospital South Manchester. 

Stage 1: Test the adapted NAT (NAT:PD-ILD) for face validity and identify barriers and facilitators to implementation. This will be conducted in two parts: a) focus groups of patients, carers and clinicians, and b) and expert consensus group of stakeholders including PPI representative. 
Stage 2: Test the NAT:PD-ILD for inter-rater and test-retest reliability using video-recorded patient consultations. 
Stage 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, and assess the acceptability of the NAT-PD:ILD by clinicians. 

Eligibility criteria: 

  1. Clinicians: clinicians in ILD services in secondary care willing to participate 
  2. Patients/carers: patients with interstitial lung disease, and their carers, able to provide informed consent and complete study questionnaires 

Sample size: 

  1. Face validity testing (Hull): 2 groups of ILD patients (n=5-8); 2 groups of their carers (n=5-8); 1 group of clinicians (n=8-12) 
  2. Reliability testing. We need 10 video recorded consultations (London team) and 25 clinicians consenting to complete reliability testing (across all 3 centres) 
  3. Construct validation (across all 3 centres): 60 clinician and patient +/-carer consultations