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

Background:

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). 

Objectives: 

 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. 

Methods:

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