Table 3 Characteristics of PROMs
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] |
|---|---|---|---|---|---|---|---|
Suitable population | Patients aged 5–18 years with type I diabetes | Patients aged 8–12 years with type I diabetes | Patients aged 10–18 years with type I diabetes | Patients aged 8–16 years with asthma, arthritis, epilepsy, cerebral palsy, type I diabetes, atopic dermatitis, or cystic fibrosis | Patients aged 8–16 years with asthma, arthritis, epilepsy, cerebral palsy, type I diabetes, atopic dermatitis, or cystic fibrosis | Patients aged 10–18 years with type I diabetes | Children with subclinical hypothyroidism |
Number of items | 28 | 11 Child self-reported 16 Parent reported | 21 | Diabetes module = 15 | 37 | 36 | 16 |
Mode of completion | Clinical assessment: Age 5–7: administered by a research assistant Age 8–18: Self-administered Telephone assessment: Questionnaires were read to the child or parent verbatim | Online questionnaire completion | All questionnaires were completed confidentially and returned in a sealed envelope during a routine clinic visit | Completed at the hospital or at home | The questionnaires were filled in by the children and their parents either at hospital or at home and returned by post | Either online questionnaires or semi-structured interviews | Mode of completion not stated |
Method of reporting | Patient and parent reported | Patient and parent reported | Patient reported only | Patient and parent reported | Patient and parent reported | Patient reported only | Patient reported only |
Method of development | Focus groups, individual focus interviews, cognitive interviewing, pretesting and field testing | Simplification of language in the teen version of the Problem Areas In Diabetes survey by paediatric psychologists. Field testing and factor analysis performed to remove items for low communalities. | Exploratory and confirmatory factor analysis of the original 52 item DQOLY questionnaire | Literature review, focus groups, cognitive interview, item selection, translations, pilot study, field study, implementation study | Literature review, focus groups, translation, pilot study, field study | Modified from DQOLY-SF, with addition of components from PedsQL, Diabetes Family Conflict Scale (DFCS), Confidence in Diabetes Self-care-Youth (CIDS-Youth) and Eating Disorders Examination- Questionnaire (EDE-Q) | Modified from a hypothyroidism symptom score for adults |
Item categories | Child self-report: Diabetes symptoms Treatment barriers Treatment adherence Worry Communication Parent proxy-report: Same domains | Child self-report: Emotional burden Regimen specific distress Parent proxy-report: Negative emotions Keeping up with chronic demands Personal regimen-specific distress Child regimen-specific distress | Impact of diabetes Worries about diabetes Satisfaction with treatment Satisfaction with life Health perception | Impact Treatment | Mental independence Mental emotion Social exclusion Social inclusion Physical limitation Physical treatment | Social impact Parents Diabetes control perceptions Responsibility Worries Treatment satisfaction Body image and eating behaviour | Hypothyroidism symptoms |
Languages available | English and Spanish | English | 14 languages (not specified) | German, French, English, Swedish, Greek, Dutch | German, French, English, Swedish, Greek, Dutch | English and Dutch | English |
Reliability as measured by Cronbach’s alpha | Child self report Diabetes symptoms = 0.81 Treatment barriers = 0.66 Treatment adherence = 0.66 Worry = 0.63 Communication = 0.77 Parent reported Diabetes symptoms = 0.81 Treatment barriers = 0.68 Treatment adherence = 0.73 Worry = 0.81 Communication = 0.84 | Child self-reported Overall = 0.91 Emotional burden = 0.86 Regimen-specific distress = 0.87 Parent reported Overall = 0.92 Emotional burden = 0.91 Child regimen-related distress = 0.85 | Future worries scale = 0.82 Parental influence scale = 0.79 Impact on activities scale = 0.65 Symptom impact scale = 0.51 Impact of treatment scale = 0.47 | Overall: 0.75–0.89 Diabetes module: Impact domain = 0.84 Food domain = 0.76 Injections domain = 0.82 | 0.70–0.87 | Overall: 0.8 Social impact = 0.68 Parents = 0.64 Diabetes control perceptions = 0.76 Responsibility = 0.36 Worries = 0.64 Treatment satisfaction = 0.79 Body image and eating behaviour = 0.38 WHO-5 = 0.78 | Cronbach’s alpha not calculated |