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Psychometric validation of the needs assessment tool: progressive disease in interstitial lung disease
  1. Miriam J Johnson1,
  2. Armita Jamali2,
  3. Joy Ross3,
  4. Caroline Fairhurst4,
  5. Jason Boland1,
  6. Carla Reigada5,
  7. Simon Paul Hart5,
  8. Gunn Grande6,
  9. David C Currow1,7,
  10. Athol U Wells8,
  11. Sabrina Bajwah9,
  12. Thanos Papadopoulos10,
  13. J Martin Bland4,
  14. Janelle Yorke6
  1. 1 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK
  2. 2 Specialist Trainee in Palliative Medicine, Pembridge Palliative Care Unit, London, UK
  3. 3 St Christopher’s Hospice, London, UK
  4. 4 Department of Health Sciences, University of York, York, UK
  5. 5 Hull York Medical School, University of Hull, Hull, UK
  6. 6 Division of Nursing, Midwifery and Social Work, University of Manchester and The Christie NHS Foundation Trust, Manchester, UK
  7. 7 Faculty of Heath, University of Technology Sydney, IMPACCT, Sydney, New South Wales, Australia
  8. 8 Respiratory Medicine, Royal Brompton and Harefield NHS Trust, London, UK
  9. 9 Cicely Saunders Institute, Kings College London, London, UK
  10. 10 Kent Business School, University of Kent, Kent, UK
  1. Correspondence to Professor Miriam J Johnson, Hertford Building, Hull York Medical School, University of Hull, Hull HU6 7RX, UK; miriam.johnson{at}


The inter-rater/test–retest reliability and construct validity of a palliative care needs assessment tool in interstitial lung disease (NAT:PD-ILD) were tested using NAT:PD-ILD-guided video-recorded consultations, and NAT:PD-ILD-guided consultations, and patient and carer-report outcomes (St George’s Respiratory Questionnaire (SGRQ)-ILD, Carer Strain Index (CSI)/Carer Support Needs Assessment Tool (CSNAT)). 11/16 items reached at least fair inter-rater agreement; 5 items reached at least moderate test–retest agreement. 4/6 patient constructs demonstrated agreement with SGRQ-I scores (Kendall’s tau-b, 0.24–20.36; P<0.05). 4/7 carer constructs agreed with the CSI/CSNAT items (kappa, 0.23–20.53). The NAT:PD-ILD is reliable and valid. Clinical effectiveness and implementation are to be evaluated.

  • interstitial fibrosis
  • palliative care

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  • Contributors MJJ and DC conceived the study and design. MJJ, DCC, MB, JMB, JR, JY, GG and TP. MJJ, DCC and JY wrote the protocol. JR, AJ and JA led on reliability testing. JY led on construct. GG provided carer assessment expertise. JMB and CF conducted the analysis. All authors contributed to interpretation. MJJ wrote the first draft and all authors contributed to revisions and the final draft.

  • Funding This work was supported bythe Marie Curie Research Grants Scheme, grant (MCCC-RP-14-A16976)

  • Competing interests None declared.

  • Ethics approval National Research Ethics Service North East-Tyne & Wear South (14/NE/0127) and institutional approval was obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The corresponding author can be contacted regarding use of anonymised data.

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