Table 9 Patient Reported Outcomes and Quality of Life Scale details and scheduling
Patient Reported Outcomes | Domains | Function | Age Group | Timing Schedule (Days) |
|---|---|---|---|---|
CHU 9D (Child Health Utility 9D) | 9 | Health-related Quality of Life | Paediatric but validated for use in adolescents and used previously in adults [6, 7] | 14 |
PedsQLâ„¢ Multidimensional Fatigue Scale | General Fatigue Sleep Fatigue Cognitive Fatigue | Fatigue Measure | Age specific scales | 30 |
Perceived Stress Scale | 10 | Perception of ‘stress’ | Adolescents & Adults | 30 |
Global Self Worth (subscale from ‘Self-perception Profile for Children’) [8] | 6 | Self-esteem | Children aged 8 yr-14 yrs | 60 |
Rosenberg Self Esteem [9] | 10 | Self-esteem | Adults | 60 |
REM Sleep Behaviour Disorder Questionnaire [10] | 10 | Detection of REM Sleep Behaviour Disorder | Adults | Baseline |
Pittsburgh Sleep Quality Index [11] | 7 | Identification of problematic sleep | Adults | Baseline |
Sleep Disturbance Scale for Children [12] | 6 | Identification of type of sleep disorder in children | Children | Baseline |