Table 2 Patient and carer baseline and outcome measures for BIS Phase II RCT

Patient breathlessness

Modified Borg [19] at rest and on exertion & identification of activity that makes breathlessness worst

Patient breathlessness at best/worst

Visual Analogue Scale (VAS) [7]

Patient functional ability

WHO performance scale [16]

Patient social functioning

No. of times patient goes out of the house (average for last month)

Patient quality of life

SEIQoL-DW [17]

Patient satisfaction with the service

Qualitative (t1 – expectations of the BIS; t3/t5 – useful aspects of the service)

Patient critical incidents data

Qualitative (e.g. identification of examples of difficulty getting help/medication/advice needed)

Patient anxiety

Hospital Anxiety and Depression Scale [20]

Patient distress due to breathlessness

Visual Analogue Scale for distress caused by breathlessness [7]

Patient mastery of breathlessness

Mastery items from Chronic Respiratory Questionnaire [18]¹

Patient use of other services

Service use questions

CARER

Carer quality of life

SEIQoL-DW [17]

Carer satisfaction with the service

Qualitative (t1 – expectations of the BIS; t3/t5 – useful aspects of the service)

Carer critical incidents data

Qualitative (e.g. identification of examples of difficulty getting help/medication/advice needed)

Carer anxiety

Hospital Anxiety and Depression Scale [20]

Carer's assessment of patient's breathlessness

Modified Borg [19] at rest and on exertion & identification of activity that makes breathlessness worst

Carer's assessment of patient's breathlessness at best/worst

VAS adapted for carer

Carer distress due to patient's breathlessness

VAS adapted for carer – distress caused to carer by patient's breathlessness

Carer's assessment of patient's use of services

Service use questions

Carer's social functioning

No. of times carer goes out of the house (average for last month)

Caregiver burden

Burden Interview [21]

Caregiver Appraisal Scale [22]