Table 1

Outcome measures used

Baseline characteristic/outcomeInstrument/measure
 Patient palliative care needsPalliative Care Outcome Scale15 with additional questions for breathlessness, cough, fatigue, insomnia (to be completed by patient and carer)
 Patient breathlessness at best/worstD12 scale16
 Patient quality of lifeKings Brief Interstitial Lung Disease questionnaire17 and SGRQ18*
 Patient functional abilityMedical Research Council breathlessness scale19
 Patient anxietyHospital Anxiety and Depression Scale20
 Patient use of other servicesService use questions
 Preferred place of care and death
 Carer quality of lifeCaregiver Quality of Life Index21
 Carer anxietyHospital Anxiety and Depression scale20
 Carer’s assessment of patient’s use of servicesService use questions
 Carer burdenZarit Burden Inventory22
  • *After completion of a background systematic review,11 it was decided to use SGRQ instead of the McGill Quality of Life questionnaire to enable comparison of outcomes with a number of other ILD studies. This amendment was made after recruitment and completion of the first patient in the trial.

  • ILD, interstitial lung disease; SGRQ, St Georges Respiratory Questionnaire.