Table 3.
Follow-up survey data collected
| Description | Non-missing observations, % | |
| Measurements and analyses | ||
| Modified Medical Research Council (mMRC) breathlessness scale23 | Functional impact of breathlessness (yes or no at each item) | 97 |
| mMRC-scale | Intensity of functional impact of breathlessness (0–10 at each item) | 97 |
| Dyspnoea-12 (D-12)24 | Multidimensional breathlessness | 95 |
| Multidimensional Dyspnoea Profile (MDP) total20 | Multidimensional breathlessness | 77 |
| MDP A1 unpleasantness | Breathing unpleasantness | 91 |
| MDP perception score | MDP A1 and five perception descriptors | 79 |
| MDP emotional response score | Five emotional descriptors | 89 |
| Short form 12 item (version 2) Health survey14 | Quality of life | 98 |
| Edmonton Symptom Assessment System, Revised (ESAS-r)25 | Associated symptoms | 98 |
| FACIT-Fatigue26 | Pathological tiredness | 98 |
| Hospital Anxiety and Depression Scale (HADS)27 | Anxiety and depression | 94 |
| WHO Performance Status 0–428 | Performance status | 97 |
| Custom items | ||
| Global impression of change (GIC)29 in breathlessness since baseline | Seven categories from very much better to very much worse | 99 |
| Global impression of change (GIC)29 in health since baseline | Seven categories from very much better to very much worse | 98 |
| Activities given up because of breathlessness | What activities have the participant giving up doe to breathlessness | 91 |
| Breathlessness unpleasantness | Likert scale, four categories from mild to severe | 93 |
| Breathlessness duration | How many years the participant have experience breathlessness | 89 |
| Proportion of awake time experiencing breathlessness | Five categories from none to whole time awake | 91 |
| Experiences temporary worsening breathlessness (how often, how long, when, causative factors). | 4–6 categories at each question | 94 |
| Self-reported treatments of breathlessness | Eight different possible treatments for breathlessness, and free text | 89 |
| Smoking status | Four categories (everyday, sometimes, former and never smoker) | 98 |
| Smoking frequency | Years of smoking, and number of cigarettes per day | 92 |
| Alcohol use | Amount of wine, beer and strong spirit a week | 84 |
| Quality and duration of sleep | Quality: 5 categories. Duration: 7 categories | 99 |
| Physical activity frequency | Four categories, from daily to never | 99 |
| Physical activity intensity | Four categories, from sedentary to intensity | 97 |
| Self-reported conditions | Nineteen different possible diseases and conditions | 95 |
| Self-reported height and weight now | cm and kg | 99 |
| Recall of height and weight at the age of 20 | cm and kg | 92 |