Table 1.
Overview of the characteristics of included studies.
| References | Country of origin | Study objective | Design | Duration | Chronic disease | Participants | PROM and type | PROM frequency and mode of administration | Evaluated outcomes | Quality score | |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Patients/family members | Health care providers | ||||||||||
| (30) | Netherlands | To test the effects of monitoring and discussing HRQOL in adolescents with type-1 diabetes in a multicenter randomized controlled trial | Randomized controlled trial | 12 Months | Type-1 diabetes | Pediatric patients (81) | Pediatricians (7) | Generic: PedsQL; Disease specific: PedsQL Diabetes—specific module | Three consultations (Prior to regular visits) Electronic | Physical and psychosocial well-being Depression Diabetes-specific family conflict Satisfaction with care Glycemic control | 22 |
| (31) | Netherlands | To investigate the effectiveness of an intervention that provides HRQOL scores of the patient (PRO tool) to the oncologists | Sequential cohort study | 45 Months | Cancers (Including leukemia, lymphoma, brain tumor, solid tumor, bone tumor etc.) | Pediatric patients (193) | Pediatric oncologists (N/R) | Generic: PedsQL (for 8–18); PedsQL parent proxy (For 6–7); TAPQOL (For 0–5) | Three consultations (Prior to consultation) Electronic | HRQOL Communication about HRQOL Domains Identification of HRQOL problems Consultation duration Referral rate | 16 |
| (32) | Netherlands | To investigate the content including type and number of psychosocial topics discussed during a pediatric oncology consultation | Sequential cohort study | 45 Months | Cancers (Including leukemia, lymphoma, brain tumor, solid tumor, bone tumor etc.) | Pediatric patients (193) | Pediatric oncologists (N/R) | Generic: PedsQL (for 8–18); PedsQL parent proxy (For 6–7); TAPQOL (For 0–5) | Three consultations (Prior to consultation) Electronic | Discussion on HRQOL domains | 16 |
| (33) | Netherlands | To investigate the effectiveness of a web-based intervention that provided an ePRO to the pediatric rheumatologists during consultation | Sequential cohort study | 13 months (3 months: control, 10 months: intervention) | Juvenile idiopathic arthritis | Pediatric patients (176) | Pediatric rheumatologists (5) | Generic: PedsQL (for 8–18); PedsQL parent proxy (For 6–7); TAPQOL (For 0–5); Disease specific: Self-composed questionnaire based on DISABKIDS arthritis module; CHAQ—Dutch version | Before each consultation (1,2) Electronic | Communication about HRQOL Satisfaction among parents Satisfaction among health care providers | 15 |
| (34) | USA | To determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life. | Randomized controlled trial | ~5 months (20 weeks) | Cancers (Patients with at least 2-week history of progressive, recurrent or non-responsive cancer or for whom there was a decision not to pursue cancer-directed therapy) | Pediatric patients (98) | 69 Oncologists (61: Physicians, 8: nurses) | Generic: an adapted version of the validated MSAS; PedsQL 4.0; An overall sickness questionnaire; Disease specific: PQ-MSAS | Ranged from once a week to once a month Electronic | HRQOL Satisfaction with the PROMs integration program Identification of HRQOL related issues Referral rate Consultation duration | 20 |
| (35) | Germany | To assess both the feasibility and acceptability of electronic PROs | Cohort study (+ Mixed methods) | 12 months | Asthma, Diabetes or rheumatic arthritis | Pediatric patients (312) | N/A, but eight subspecialist pediatricians were selected for qualitative study | Generic: Item bank approach but Kids-CAT tool followed the domain structure of KIDSCREEN-27 questionnaire | Four times (baseline, 3,6 and 12 months) Electronic | Communication about HRQoL Domains Consultation duration Impact on patient-physician communication Satisfaction with the PROMs integration program | 12 |
| (36) | Spain | To assess whether the systematic monitoring of HRQOL via internet in clinical practice in Spanish pediatric patients with T1DM helps improve their daily life with diabetes. | Randomized control trial | 12 months | Type-1 diabetes | Pediatric patients (119) | Endocrinologists (7) | Generic: KIDSCREEN-27 and KIDSCREEN-10; Disease specific: SDQ | Four times (baseline, 3, 6, and 12 months) in intervention group and 1 and 12 months in control group Electronic | HRQOL | 21 |
PRO, Patient-reported Outcome; PROM, Patient-reported outcome measure; HRQOL, Health-related quality of life; PedsQL, Pediatric Quality of Life; TAPQOL, TNO-AZL Preschool children Quality of Life; CHAQ, Childhood Health Assessment Questionnaire; PQ-MSAS, PQ Memorial Symptom Assessment Scale; SDQ, Strengths and Difficulties Questionnaire.