Outcome measures used
| Baseline characteristic/outcome | Instrument/measure |
|---|---|
| Patient | |
| Patient palliative care needs | Palliative Care Outcome Scale15 with additional questions for breathlessness, cough, fatigue, insomnia (to be completed by patient and carer) |
| Patient breathlessness at best/worst | D12 scale16 |
| Patient quality of life | Kings Brief Interstitial Lung Disease questionnaire17 and SGRQ18* |
| Patient functional ability | Medical Research Council breathlessness scale19 |
| Patient anxiety | Hospital Anxiety and Depression Scale20 |
| Patient use of other services | Service use questions |
| Preferred place of care and death | |
| Carer | |
| Carer quality of life | Caregiver Quality of Life Index21 |
| Carer anxiety | Hospital Anxiety and Depression scale20 |
| Carer’s assessment of patient’s use of services | Service use questions |
| Carer burden | Zarit 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.