Table 3.
Generic PROMs
| PROM | Number of studies included | Year developed | Target population | Languages* | Number of items and domains | Psychometric properties |
| EuroQol-5 Dimension (EQ-5D)21 31 43 70 75–77 | 7 | 1990 | EuroQol-5 Dimension-3 Level (EQ-5D-3L) (16+) | English | Number of items: 5 | Validity: discriminates between CF and non-CF population Ceiling effects: 44%–67% |
| EuroQol-5 Dimension-5 Level (EQ-5D-5L) (16+) | French | Domains: mobility, self-care, usual activities, pain/discomfort, anxiety/depression | ||||
| EuroQoL-5 Dimension-Youth (EQ-5D-Y) (8–15 years, self report and proxy) | German | |||||
| Hungarian | ||||||
| Italian | ||||||
| Spanish | ||||||
| Swedish | ||||||
| Bulgarian | ||||||
| Paediatric Quality of Life Inventory20 22 23 48 86 | 5 | 1998 | Child (8–12 years, self report and proxy) | English Hungarian Persian |
Number of items: 23 | Reliability: α=0.68–0.93 |
| Domains: physical, emotional, school, social | Validity: discriminates between CF and asthma or non-CF population | |||||
| Short Form Survey-36 (SF-36)50 63 64 95 | 4 | 1990 | Adult (14+) | English German Italian Polish |
Number of items: 36 | Known groups validity with age and time after lung transplant Ceiling effects up to 67.7% in some domains |
| Domains: physical functioning, role—physical, role—emotional, bodily pain, general health, vitality, social functioning, mental health | ||||||
| UK Sickness Impact Profile3 | 1 | 1975 | Adult (18+) | English | Number of items: 136 | Reliability: α=0.87–0.9 Test–retest reliability† 0.57–0.84 Convergent validity with Cystic Fibrosis Quality of Life Questionnaire |
| Domains: sleep and rest, eating, work, home management, recreation and pastimes, ambulation, mobility, body care, social interaction, alertness behaviour, emotional behaviour, communication | ||||||
| World Health Organization Quality of Life Scale54 | 1 | 1996 | Adult (16+) | Portuguese | Number of items: 26 | Not reported |
| Domains: physical health, psychological, social relationships, environment | ||||||
| Single Item Scale71 | 1 | 2011 | Adult (18+) | English | Number of items: 1 | Test–retest reliability† 0.78 |
| Quality of Life Profile for the Chronically Ill63 | 1 | 2000 | Adult (18+) | German | Number of items: 40 | Not reported |
| Domains: physical capacity, psychological capacity, social capacity, psychological well-being, social well-being | ||||||
| Core Outcome Measures40 | 1 | 1993 | Adult (16+) | English | Number of items: 34 | Convergent validity with CFQ-R |
| Domains: well-being, symptoms, functioning, risk | ||||||
| KINDL52 | 1 | 1994 | Child (3–17 years) | Turkish | Number of items: 40 | Convergent validity with CFQ-R |
| Domains: psychosocial well-being, physical state, social relationships, functional capacity (76) |
*Languages included in this review.
†Test–retest reliability measured by intraclass correlation coefficient.
CF, cystic fibrosis; CFQ-R, Cystic Fibrosis Questionnaire—Revised; PROM, patient-reported outcome measure.