Patient-reported outcome (PRO) tools used in studies of patients with chronic thromboembolic pulmonary hypertension (CTEPH)
| PRO tool [ref.] | Type | Items | Domains | Scoring | MID# | Validation | Correlations | Recall period |
| MOS/Rand 36-item Short Form (SF-36) [26] | Generic | 36 | Physical functioning Role physical Bodily pain General health Vitality Social functioning Role emotional Mental health | 0–100 where 50 is equal to the population norm | In patients with PAH: Physical functioning=13 Role physical=25 Social functioning=21 Vitality=15 [27] | Validated by the IQOLA project in 15 countries | 6MWD, NYHA FC, haemodynamics | 4 weeks |
| MOS 12-item Short Form (SF-12) [28] | Generic | 12 | Physical functioning Role physical Bodily pain General health Vitality Social functioning Role emotional Mental health | 0–100 where 50 is equal to the population norm | In patients with COPD: Physical component score 3=units, mental component score=3.5 units [29] | Validated by the IQOLA project in nine countries | Corresponding scores in the SF-36 | 4 weeks |
| EuroQol-5D (EQ-5D)/EQ-Visual Analogue Scale (VAS) [30] | Generic | 5 | Mobility Self-care Usual activities Pain/discomfort Anxiety/depression | −0.59–1.00, where 1.00=full health VAS from 0 (worst possible health) to 100 (best possible health) | Utility=0.074 [31] VAS=7–12 [32] | Validated in six countries in eight patient groups with chronic conditions (cardiovascular disease, respiratory disease, depression, diabetes, liver disease, personality disorders, arthritis, and stroke) and a student cohort | 6MWD, NYHA FC, haemodynamics | Day of data collection |
| Minnesota Living With Heart Failure (MLHF) [33, 34] | Heart failure-specific | 21 | Physical Socioeconomic Emotional/psychological | Total 0–105 Physical 0–40 Emotional 0–25 Higher scores indicate worse HRQoL | Total score=5–7 points [35] | Validated by the International Health-Related Quality of Life Outcomes Database | SF-36, 6MWD and NYHA FC | 4 weeks |
| Living with Pulmonary Hypertension (LPH) [36] | PH-specific | 21 | Physical Emotional | Total 0–105 Physical 0–40 Emotional 0–25 Higher scores indicate worsening HRQoL | Total score=7 points Subscales=3 points | Validated in patients with PAH using blinded data from a double-blind phase III clinical trial | The physical dimension correlates with Borg dyspnoea score | 1 week |
| Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) [37–40] | PH-specific | 65 | Symptoms Functioning QoL | Symptoms 0–25 Functioning 0–30 QoL 0–25 Higher scores indicate worsening HRQoL | Not available However, the CAMPHOR Utility Index, a tool derived from CAMPHOR to enable cost utility analyses has a MID of 0.09 | Validated in patients with PAH, CTEPH and PH associated with connective tissue disease and heart failure Developed from interviews with patients with PH Validated in the UK, USA, Austria, Sweden, France, Germany, Switzerland, Australia, New Zealand and Canada | EQ-5D, SF-36, 6MWD | At the moment |
| Mahler dyspnoea index [41, 42] | Respiratory disease | 3 | Dyspnoea Magnitude of task Magnitude of effort | Baseline dyspnoea index: 5 grades per domain, 4 (no impairment) to 0 (very severe impairment) Transitional dyspnoea index: 6 grades per domain, −3 (major deterioration) to +3 (major improvement) | 1 unit | Validated in PAH, CTEPH, COPD and interstitial lung disease | Dyspnoea diary score; symptom and activity domains of SGRQ | During the past 2 weeks |
| Borg CR10 dyspnoea score [43, 44] | Respiratory disease | 1 | Dyspnoea | 12-unit scale from 0 (nothing at all) to 10 (maximal) or 10 plus maximal | 1 unit | Validated in PAH, CTEPH, heart failure, COPD and other respiratory diseases | The physical dimension of the LPH questionnaire | The past 24 h |
MOS: Medical Outcomes Study; MID: minimally important difference; PAH: pulmonary arterial hypertension; IQOLA: International Quality of Life Assessment; 6MWD: 6-min walking distance; NYHA: New York Heart Association; FC: functional class; COPD: chronic obstructive pulmonary disease; HRQoL: health-related quality of life; PH: pulmonary hypertension; QoL: quality of life; SGRQ: St George's Respiratory Questionnaire. #: MID is the smallest change or improvement that would justify an alteration in a patient's management and/or indicate a clinically significant improvement.