Table 2

Overview of the questionnaires and scales used in the BEAMS study

Breathlessness assessmentsIntensity of worst breathlessness over the previous 24 hours
  • NRS

  • 0–10 (11-point) scale

  • 0 = ‘no breathlessness’ to 10 = ‘worst possible breathlessness’

Unpleasantness of worst breathlessness over the previous 24 hours
  • NRS

  • 0–10 (11-point) scale

  • 0 = ‘breathing is not unpleasant’ to 10 = ‘most unpleasant breathlessness possible’

mMRC109 110
  • Five-point (0–4) categorical breathlessness scale

  • Descriptive measure of functional impairment due to breathlessness; lower scores indicate less breathlessness.

CRQ-DS111 112
  • Total of 20 questions covering social and emotional symptoms and perceptions of breathlessness in relation to five activities over the preceding 2 weeks

  • Higher scores indicate better respiratory function.

  • Assessment of perceived change in patient mastery over their breathlessness

  • Higher scores indicate better mastery.

Baseline assessmentsCCMI114
  • Severity and number of comorbid conditions incorporated into a single score.

  • Score will be unweighted and not include participants life-limiting illness.

  • Independent predictor of long-term survival115

  • 11-item questionnaire scored out of 30; testing memory, orientation, attention and executive functions

  • Score adjusted for school education.

  • Rating of severity of coexisting symptoms on a numeric rating scale from 0 to 10

  • Sum of scores is termed symptom distress score. Higher scores equate higher levels of distress.

Performance and activity assessorsActivity monitoring
  • Daily step count measured by Fitbit Charge HR wearable step count technology device

  • Provides data and insight into overall physical activity including steps per day, sleep minutes and sleep activity, activity and sedentary levels and total energy expenditure117

  • Motion sensors provide an objective, reliable, valid and responsive measure118 119

  • Validated variant of Karnofsky Performance Status

  • Scored 0–100 in increments of 10 assigned to participants based on ability to perform activities of daily living; higher scores imply better level of function.

Barthel Index (clinician rated)120–122
  • Assess impairment of ADLs through assessment of 10 variables

  • Higher scores indicate associated with increased independence with ADLs.

  • 14-item questionnaire consisting of two seven-item subscales looking at depression and anxiety, respectively

  • Higher scores are associated with greater morbidity.

Quality of life assessmentsQuality of Life EQ-5D-5L124
  • Standardised instrument for use as a measure of health outcome in both clinical and economic evaluation of healthcare

  • Five descriptive questions rated on a 5-point Likert scale and a single VAS rating overall health.

  • Validated measure of heath-status in COPD and is responsive to quality of life changes after an exacerbation and pulmonary rehabilitation.

  • Eight questions specific to COPD-related symptoms each rated on a 6-point scale.

  • Seven-point scale regarding participant perception of change since study commencement; graded from ‘very much worse’ to ‘very much improved’

  • Adapted for measurement of breathlessness from original127

  • Higher scores imply better global quality of life.

Sleep assessmentsESS128
  • Validated tool for characterising daytime sleepiness

  • Eight questions rated on a four-point scale

  • Validated tool for measuring changes in sleep such as going to sleep, perceived quality of sleep and morning alertness

  • Ten questions self-rated on 0–100 millimetre (mm) line

KSS130 131
  • Validated single question on a nine-point scale evaluating subjective sleepiness

  • Higher scores indicate higher perceived sleepiness at the time of scoring.

CaregiverZarit Burden Interview132
  • Caregiver well-being assessment 12-item short form questionnaire133

  • Commonly used questionnaire assessing level of subjective caregiver burden rated on a five-point Likert scale

Adverse effectsSOWS84
  • 16-point questionnaire rating presence of signs and symptoms of opioid withdrawal on a five-point Likert scale

  • Higher scores indicate increasing severity of opioid withdrawal.

  • ADLs, activities of daily living; AKPS, Australian-modified Karnofsky Performance Status; BEAMS, Breathlessness, Exertion And Morphine Sulfate; CCMI, Charlson Co-Morbidity Index; CAT, COPD Assessment Test; COPD, chronic obstructive pulmonary disease; CRQ-DS, Chronic Respiratory Questionnaire—Dyspnoea Subscale; CRQ-M, Chronic Respiratory Questionnaire—Mastery Subscale; ESAS, Edmonton Symptom Assessment System; ESS, Epworth Sleepiness Scale; GIC, Global Impression of Change; EQ-5D-5L, Five-Level EuroQol five dimensions questionnaire; HADS, Hospital Anxiety and Depression Scale; KSS, Karolinska Sleepiness Scale; LSEQ, Leeds Sleep Questionnaire; mMRC, modified Medical Research Council; NRS, Numerical Rating Scale; SOWS, Subjective Opioid Withdrawal Scale; SLUMS, St Louis University Mental Status Examination; VAS, Visual Analogue Scale.