Dr Miriam Johnson, Professor of Palliative Medicine, Supportive care, Early Diagnosis and Advanced disease (SEDA) Research Group, Hull York Medical School, University of Hull, UK. Professor Johnson explains how they are adapting and validating an assessment tool to identify the palliative needs of people with interstitial lung disease.
The interstitial lung diseases (ILD) are a group of conditions resulting in lung fibrosis. The biggest subgroup is idiopathic pulmonary fibrosis (IPF) with 5,000 new cases each year in England and Wales, with a similar number of deaths. IPF is a non-malignant, incurable, progressive disease, with a median survival of approximately three years.
We think that access to palliative care is a priority for these patients and carers. Many patients experience a progressive loss of functional ability and, ultimately, die from respiratory failure. Severe symptoms such as distressing breathlessness, cough, fatigue and pain, as well as psychosocial, financial and spiritual distress, become more common as the disease progresses.
The Supportive care, Early Diagnosis and Advanced disease (SEDA) research group at the University of Hull, were awarded a project grant (A16976) from Marie Curie Cancer Care – to adapt and validate an assessment tool (Needs Assessment Tool: Progressive Disease; NAT:PD) – to identify the palliative care needs of people with irreversible ILD, for use in everyday clinical practice. The NAT:PD was developed for use in cancer clinics as an ‘aide-mémoire’ for busy non-palliative care clinicians to help them identify patients with palliative needs in daily practice.1 It can be used in the clinic or ward and helps to identify physical, psychological, social and spiritual problems, and to ensure that these are addressed by the most appropriate member of the clinical team, including referrals to specialist palliative care if needed.
The NAT:PD-ILD is a one-page assessment tool that helps professionals to think about four main domains:
- Red flags – alert for unmet palliative care need
- Patient wellbeing
- Ability of carer or family to care for patient
- Carer and family wellbeing.
We believe that NAT:PD-ILD is an important tool to facilitate communication between primary and specialist care providers about patient needs and the actions needed to address these.
The adaptation and validation process involves three main stages: 1) Face and content validity, 2) Inter-rater reliability and 3) Construct validation.
|Face and Content Validity||Adapt the NAT:PD-cancer for use in people with interstitial lung disease (NAT:PD-ILD) and test to see whether patients, carers and clinicians agree that the tool covers the appropriate clinical issues|
|Inter-rater reliability||Test whether the NAT:PD-ILD gives reliable results even if different clinicians use it|
|Construct validation||Test whether the NAT:PD-ILD helps clinicians to identify the concerns that are bothering the patient and their carers|
We have now completed the adaptation and face/content validation, which was presented by poster at the Marie Curie Annual Conference (March 2015).2 We are now starting the 2nd stage of the project (having completed video recording with the London team – Joy Ross and Armita Jamali).
- Waller A, Girgis A, Lecathelinais C, Scott W, Foot L, Sibbritt D, Currow D. Validity, reliability and clinical feasibility of a Needs Assessment Tool for people with progressive cancer. Psychooncology 2010; 19: 726-733.
- Reigada, C., Bajwah, S., Ross, J., Boland, J., Wells, A., Yorke, J., Grande, G., Hart, S., Currow, D., Papadopoulos, T., Macleod, U., Johnson, M. (2015). Adaptation, face and content validation of a palliative care needs assessment tool for people with interstitial lung disease. BMJ Support Palliative Care; 5:111-112. doi:10.1136/bmjspcare-2014-000838.26.
- View a video presentation explaining the research project.
- The Supportive care, Early Diagnosis and Advanced disease (SEDA) research group.
- Marie Curie Cancer Care Research Programme.
More about the research team…
Our multidisciplinary research investigator team is a collaboration between the Hull York Medical School (University of Hull), Cicely Saunders Institute of Palliative Care and Rehabilitation (King’s College London), Hull and East Yorkshire Hospitals NHS Trust, University of Manchester, Royal Brompton & Harefield NHS Foundation Trust/London Palliative Care Service, University of York, University of Sussex and Flinders University, Australia. The research team includes Miriam J Johnson (principal investigator), Jason Boland, Una Macleod, Sabrina Bajwah, Simon Hart, Janelle Yorke, Gunn Grande, Joy Ross, Athol Wells, Martin Bland, Athanasios Papadopoulos, David Currow and Carla Reigada (post-doctoral research fellow).