Tests and questionnaires analysed in the study
| emPHasis-10 | This PH-specific HRQoL questionnaire consists of 10 items, each on a scale of 0–5. Scores range from 0 to 50, higher scores indicating poorer health status. For the purposes of this study, the key assessment is a change in score over time that may indicate that an individual’s condition has improved (lower score) or deteriorated (higher score)38 |
| Dyspnoea-12 | Each item in this 12-item questionnaire scores from 0 (never) to 3 (severe). It examines specific aspects of dyspnoea, with an emphasis on how people physically perceive the sensation and its emotional consequences. It uses simple summation scoring to provide scores from 0 to 36, higher scores corresponding to greater shortness of breath. The questionnaire has been validated for use in a number of cardiopulmonary conditions39 |
| Fatigue Severity Scale | This nine-item questionnaire was developed to evaluate disabling fatigue. Each item is rated on a seven-point Likert scale, which ranges from strongly disagree to strongly agree. All nine items are combined into a total score, higher total scores indicating a more pronounced effect of fatigue on everyday life40 |
| Medical Outcomes Study Sleep Index (MOS-Sleep Index) | The Sleep Problems Index used in this study consists of nine items that originate from the MOS-Sleep Scale. It assesses initiation (time to fall asleep), quantity (hours of sleep each night), maintenance, perceived adequacy, respiratory problems and somnolence. Scores are converted into 1–100, higher scores being indicative of worse sleep29 |
| Hospital Anxiety and Depression Scale | A widely used tool that assesses psychological distress (seven items measure anxiety, the score ranging from 0 to 21; and seven items measure depression, the score ranging from 0 to 21); higher scores indicate greater emotional distress, and scores >8 suggest the presence of clinically relevant anxiety/depression41 |
HRQoL, health-related quality of life; PH, pulmonary hypertension.