Table 1 Characteristics of included studies
From: A systematic review of patient-reported outcome measures in paediatric endocrinology
Patient reported outcome measure | PedsQL Diabetes Module [16] | Problem Areas In Diabetes Scale - Child Version [17] | Diabetes Quality of Life for Youth scale - Short Form [18] | DISABKIDS condition-specific modules [19] | DISABKIDS chronic generic module [20] | Monitoring Individual Needs in Diabetes Youth Questionnaire [21] | Hypothyroidism symptom score [22] |
|---|---|---|---|---|---|---|---|
Endocrine condition(s) | Type I Diabetes | Type I Diabetes | Type I Diabetes | Asthma, arthritis, epilepsy, cerebral palsy, type I diabetes, atopic dermatitis, cystic fibrosis | Asthma, arthritis, epilepsy, cerebral palsy, type I diabetes, atopic dermatitis, cystic fibrosis | Type I Diabetes | Subclinical Hypothyroidism |
Date conducted | March 2003 | 2014–2015 | March–August 1998 | April–July 2003 | 2002–2003 | 2012 | December 2014 |
Location | USA | USA | 18 countries in Europe, Japan and North America | Austria, France, Germany, Greece, Sweden, Netherlands, United Kingdom | Austria, France, Germany, Greece, Sweden, Netherlands, United Kingdom | Netherlands | Turkey |
Number of participants | 300 children 308 parents | 804 children 968 parents | 2077 children | Total = 1152 children Diabetes module = 207 children Number of parents not stated | 1153 children 1061 parents | 84 children online 22 children face to face | 27 children |
Age | Mean = 12.47 +/− 4.04 Range = 2–18 (ages 2–4 were parent responses only) | Mean = 10.3 +/− 1.1 years Range = 8–11.9 years | Mean = 14.3 +/− 2.1 years Range = 10–18 years | Mean = 12.2 +/− 2.8 years Range = 8–16 years | Mean = 12.2 +/− 2.8 years Range = 8–16 years | Mean = 14.4 +/− 2.2 years Range = 10–18 years | Mean = 10 +/− 6.9 years |
Gender | 43.9% Male 56.1% Female | 48.4% Male 51.6% Female | 52% Male 48% Female | 52% Male 48% Female | 51% Male 49% Female | 48% Male 52% Female | 59% Male 41% Female |
Recruitment locations | Children presenting at hospital based diabetes clinics and children presenting at paediatricians offices for scheduled well-child checks | 42 Diabetes ‘camps’ across USA | 22 paediatric diabetes centres | Paediatric clinical settings from the 7 participating countries | Paediatric clinical settings from the 7 participating countries | Two paediatric outpatient clinics | Outpatient paediatric endocrinology clinic |