Table 2 Characteristics of all include studies
Author | Type | Country | Collection | Context | Participant Details | PROMs | PREMs | Speciality |
|---|---|---|---|---|---|---|---|---|
Ng 2020 [99] | PROMs | Multiple countries | Pen and paper | Registry network | Liver transplant recipients aged 8-18years old >1-year post first isolated pediatric liver transplant | Pediatric liver transplant quality of life (PeLTQL) | Transplant | |
Naranjo 2017 [98] | PROMs | United States | Not stated | Single centre | 113 families All pts aged ≥ 12 years (n=54) All caregivers also screened if caregivers of patients <12 screened positively for depression or anxiety, the patients were also screened (ages 8-11) or interviewed (ages 6-8) | PHQ-9 GAD-7 | Respiratory | |
Mims 2019 [183] | PROMs and PREMs | United States | Not stated | Single centre | 256 patients | 3 pro questions, focusing on health, QOL and treatment burden | 1 question on satisfaction with team interactions | Respiratory |
Murphy 2017 [96] | PROMs | United Kingdom | Not stated | Multicentre | 17 patients with erythropoietic protoporphyria (aged unknown) | Erythropoietic protoporphyria quality of life (EPP-QOL) | Dermatology | |
Mentrikoski 2018 [88] | PROMs | United States | Electronic | Single centre | All patients (and their caregivers) who received treatment through the inpatient and outpatient burn centres. | Quality of life (specific tool not stated) | Burn | |
Maxwell 2015 [87] | PROMs | United States | Not stated | Single centre | 20 young people aged over 10 | PedsQL sickle cell disease module (PedsQL SCD) | Haematology | |
Mager 2019 [84] | PROMs | Canada | Not stated | Single centre | CYP (and parents) aged 8-17y (18m/17f) who underwent liver transplantation | Pediatric liver transplant quality of life questionnaire (PeLTQL) parent proxy and child reports | Transplant | |
Limperg 2013 [80] | PROMs | Netherlands | Electronic | Single centre | 106 children and their parents | TNO-AZL Preschool children Quality of Life (TAPQoL) - Pediatric Quality of Life Inventory (PedsQL) - Strength and Difficulties Questionnaire (SQD) | Haematology | |
Limperg 2017 [81] | PROMs | Netherlands | Electronic | Single centre | TNO-AZL Preschool Children Quality of Life (TapQoL) - Pediatric Quality of Life Questionnaire (PedsQL) - Hemophilia Quality of Life (Haemo-QoL) - Hemophilia Self-Efficacy Scale (HSES) - Strengths and Difficulties Questionnaire (SDQ) - Pediatric Hemophilia Activities List (Ped-HAL) | Haematology | ||
Limperg 2012 [79] | PROMs | Netherlands | Electronic | Single centre | 40 children under 18 with congenital bleeding disorders | TNO-AZL Preschool children Quality of Life, TAPQOL or Pediatric QoL inventory; PedsQL); SDQ | Haematology | |
Lewer 2011 [78] | PROMs | Australia | Not stated | Single centre | 31 CYP aged 2-17years with atopic dermatitis | Edsel | Immunology | |
L'estrange-snowden 2018 [170] | PREMs | United Kingdom | Pen and paper | Multicentre | 18,687 patients aged 0-15 who received care between Oct and Dec 2016 | Children and young people’s inpatient and day case survey | Multiple specialties | |
Kuijlaars 2019 [75] | PROMs | Netherlands | Pen and paper | Not stated | 73 boys aged 5.4-18.0 years with moderate-severe haemophilia and their parents | Pediatric hemophilia activities list (pedHAL) (53 items, 7 domains) | Haematology | |
Kroupina 2020 [73] | PROMs | United States | Not stated | Single centre | 10 patients under 1 year old and their parents | Ages & Stages Questionnaires: Social-Emotional (ASQ:SE) (2nd ed) | Mental health | |
Knottnerus 2017 [72] | PROMs | Netherlands | Electronic | Single centre | 15 patients | Basic lto PedsQL PedsQL fatigue | Endocrinology | |
Schepers 2017 [126] | PROMs | Netherlands | Electronic | Single centre | 205 children/proxies aged 0-18years and 28 clinicians | Generic HRQOL PROMs PedsQL 3.0 acute cancer module | Oncology | |
Schepers 2016 [123] | PROMs | Multiple countries | Not applicable | Single centre | 352 health care professionals (hcps) (43% male) -pediatric oncologist/hematologist, nurse practitioner, pediatric (neuro)surgeon, pediatrician, pediatric neurologist | None reported | Oncology | |
Schepers 2014 [122] | PROMs | Netherlands | Electronic | Multicentre | 74 parents of children; 21 pediatric oncologists | TAPQOL PedsQL 4.0 | Oncology | |
Kermarrec 2015 [70] | PROMs | United Kingdom | Not stated | Single centre | Ages and stages questionnaire (ASQ) | Occupational therapy | ||
Katsicas 2011 [182] | PROMs and PREMs | Argenti | Not stated | Single centre | 12 patients, age at onset 96 (9-18 months) | Outcome measures designed and applied | A proposed set of quality measures for the process of care in JSS was designed and applied (unclear if PREM) | Rheumatology |
Santana 2015 [118] | PROMs | Netherlands | Not applicable | Single centre | Training directed at pediatricians utilizing KLIK. no details provided of numbers participating in training patients (children) and /or parents completed questionnaires at home via website | PedsQL KLIK | Multiple specialties | |
Salmond 2020 [117] | PROMs | United Kingdom | Not stated | Single centre | 67 young people aged 12-18years old | Revised child anxiety and depression scale (RCADS) Young person’s clinical outcomes in routine evaluation (YP CORE) Moods and feelings questionnaire (MFQ) | Mental health | |
Haverman 2013 [63] | PROMs and PREMs | Netherlands | Electronic | Multicentre | 176 children aged 0-18years with juvenile idiopathic arthritis visiting clinic between Feb 2009-Feb 2010 | Netherlands Organisation for Applied Scientific Research-Academisch Ziekenhuis Leiden (TNO-AZL) Preschool Children Quality of Life (TAPQOL) PedsQL Generic Core Scale (Generic HRQoL scale) Self-composed measure based on DISABKIDS arthritis module Childhood Health Assessment Questionnaire (CHAQ) Visual Analogue Scale (VAS) (pain and overall well-being) | Adapted patient satisfaction questionnaire on vas, covering: (1) meeting needs, (2) active involvement, (3) provided information, (4) (emotional) support, and (5) overall satisfaction with care provided during the consultation | Rheumatology |
Haverman 2017 [181] | PROMs and PREMs | Netherlands | Electronic | Multicentre | -Over 1100 patients in 13 patient groups; 113 professionals from 5 centres (2014) -Over 1450 patients in 17 patient groups; 160 professionals (2014); -Over 6500 patients in 61 patient groups; 500 professionals from 11 hospitals (2017) | As of Aug 2013: HRQOL Generic: - Pediatric Quality of Life Inventory (PedsQL) PedsQL Fatigue module TNO-AZL Preschool children Quality of Life (TAPQOL) HRQOL Disease-specific: PedsQL Transplant module: nephrology PedsQL Cancer module: oncology Childhood Health Assessment Questionnaire (CHAQ): rheumatology Dutch Defecation Questionnaire (DDL): gastroenterology Questionnaire Juvenile Idiopathic Arthritis Medication and appearance after kidney transplant Medication and transition questions HIV MIND Youth Questionnaire (MY-Q): diabetes Questionnaire Cleft lip - Satisfaction with Appearance (SwA): cleft lip - Questionnaire Spherocytosis Psychosocial screening tools: Strengths and Difficulties Questionnaires (SDQ) Children’s Revised Impact of Event Scale (CRIES) Child Behavior Checklist (CBCL) Behavior Rating Inventory of Executive Function (BRIEF) Questionnaire for Behavioral Problems in Children (VvGK) Other: Course of Life questionnaire (LVJV/CoL) Questions about school | Evaluation of KLIK ePROfile | Multiple specialties |
Haverman 2013 [180] | PROMs | Netherlands | Electronic | Single centre | 20 families screened - 19 mothers, 16 fathers, 4 children (all 8years or above) | Hrqol, distress, ptsd | Multiple specialties | |
Haverman 2015 [64] | PROMs | Netherlands | Electronic | Single centre | Young adults | Not stated | Transition/Gender Services | |
Hacker 2017 [59] | PROMs | United States | Pen and paper | Single centre | PHQ-9 | Respiratory | ||
Gmuca 2019 [54] | PROMs | United States | Electronic | Single centre | 65 pts aged 8-17 years with juvenile fibromyalgia syndrome (jfms) and their proxies | Pediatric quality of life short form 15 generic core scales (PedsQL SF-15 | Multiple specialties | |
Devereux 2009 [37] | PROMs | United Kingdom | Not stated | Single centre | Children’s dermatology life quality index (CDLQI) | Dermatology | ||
Riobueno-ylor 2019 [107] | PROMs | United States | Electronic | Multicentre | Parents of 147 children 5-18years old; clinicians in outpatient setting (physicians, nurse practitioner, registered nurse), 79 clinicians in surgical setting (physicians 100%) | Parent reported - burn outcomes questionnaire for children ages 5-18 years (BOQ 5-18) Pediatric symptom checklist (PSC-17) | Burn | |
Einaudi 2013 [44] | PROMs | France | Not stated | Single centre | 78 clinicians: 19 obstetricians, 45 neontologists and 14 pediatric neurologists | Not stated | Multiple specialties | |
Eilander 2016 [43] | PROMs | Netherlands | Electronic | Multicentre | 10 diabetes teams (26 members incl. diabetes nurses, pediatricians, psychologists and dieticians) were interviewed - 36 team members, 29 adolescents and 66 parents surveyed | Mind-youth (monitoring individual needs in young people with diabetes) (DM-Y) questionnaire (MY-Q) | Endocrinology | |
De Wit 2010 [38 ] | PROMs | Netherlands | Not stated | Single centre | Dawn mind youth | Endocrinology | ||
Davis-dao 2020 [167] | PREMs | United States | Mixed | Single centre | Children receiving urological care between 2017-2019, median age 5y, 78% male | National research corporation health patient survey in English and Spanish. | Urology | |
Dharmaraj 2019 [40] | PROMs | Canada | Not stated | Single centre | 86 post-liver transplant patients > 8 years old (median range 10-12 years old) | Pediatric liver transplant quality of life (PeltQL) | Transplant | |
Cunningham 2018 [34] | PROMs | United States | Pen and paper | Single centre | Patients aged 8-18 years old with functional abdominal pain disorder -Survey completed by 18 gastroenterology providers who routinely see CYP with functional abdominal pain disorders | Screen for child anxiety and related disorders (scared)-child report Functional disability inventory (FDI)-child version Numeric rating scale for pain levels | Gastroenterology | |
Cassidy 2017 [30] | PROMs | United States | Not stated | Single centre | 17 patients ≥12 years old participating in exercise program and have completed Mental Health Screening | Patient health questionire-9 (PHQ-9) Generalized anxiety disorder-7 (GAD-7) Cystic fibrosis questionnaire-revised (CFQ-R) Habitual activity estimation scale (HAES) | Mental health | |
Carberry 2016 [29] | PROMs | United States | Electronic | Single centre | Not stated | Not stated speciality | ||
Bower 2020 [26] | PROMs | United States | Pen and ppr | Single centre | 55 patients over 3-month study period; 49 completed prom (89%) | Memorial symptom assessment scale | Palliative | |
Caddell 2015 [166] | PREMs | Canada | Not stated | Single centre | Parents of all new outpatients in June, July, August 2012 were asked for satisfaction data - 85% (n=74) responded | Adapted from Margaritis et al. exceeding parent’s expectations in ear, nose and throat outpatient facilities: the development and analysis of a questionnaire. Evaluation program planning. 24 item questionnaire, Likert scoring (strongly disagree-strongly disagree + category) | Cardiology | |
Burden-teh 2013 [28] | PROMs | United Kingdom | Not stated | Multicentre | Consultants (one representative per centre). Of 79 respondents, 56 filled in questionnaire | Dermatology life quality index (DLQI) | Not stated speciality | |
Blaauboer 2017 [25] | PROMs | Netherlands | Not applicable | Single centre | 54 children (all children with severe skin disease at the setting), mean age 9.5 years, sd = 5.2, 42.6% female (4-18 years) | Pediatric quality of life inventory for children (PedsQL 4.0, 6-18 years) | Dermatology | |
Racine 2018 [104] | PROMs | Canada | Not stated | Single centre | 16-year-old female with cancer | Pediatric quality of life inventory (PedsQL) 4.0 | Not stated speciality | |
Anthony 2021 [22] | PROMs | Canada | Electronic | Multicentre | 63 participants: 20 patients, 22 caregivers, 21 hcps (all English speaking with no severe cognitive impairment) | Participants reviewed PedsQL generic core scales and PedsQL transplant module. The eProm platform was also reviewed | Transplant | |
Roesler 2018 [112] | PROMs | United States | Not stated | Single centre | Pts aged 6-18y with pediatric illness associated with psychiatric comorbidity, and their families | Family assessment device | Not stated speciality | |
Murphy 2011 [95] | PROMs | United States | Electronic | Single centre | Parents of 183 children aged under 18y (105m, 78f) | Pediatric symptom checklist (PSC) (parent-report) - 35 items rated from 0 (never) to 2 (often) | Psychiatry | |
Wray 2020 [176] | PREMs | United Kingdom | Not applicable | Single centre | 565/1876 parents of children receiving cardiothoracic care | 14 different PREMs developed for each ward/service | Not stated speciality | |
Stevens 2012 [135] | PROMs | Canada | Not stated | Multicentre | 3,822 children aged 0 to 18 years hospitalized for more than 24 hours | 28% of pain assessments used measures validated for that age group; 5.4% of pain assessments use validated pain measure that was age inappropriate | Not stated speciality | |
Marker 2019 [86] | PROMs | United States | Electronic | Multicentre | Settings 4 clinics at 4 hospital sites & outreach clinics | Patient Heath Questionnaire (phq-2, phq-4, phq-9) | Endocrinology | |
Maasalo 2017 [83] | PROMs | Finland | Not stated | Single centre | 62 psychiatric patients aged 5-12years | Parent-rated strengths and difficulties questionnaire (SDQ) (25 item instrument measuring emotional and behavioral problems) | Psychiatry | |
Edbrooke-childs 2016 [42] | PROMs | United Kingdom | Not applicable | Single centre | 28 clinicians who attended 1-day training (25f, 3m) incl. psychotherapists (5), clinical leads (3), trainee psychotherapists (3), mental health workers (2) | Not stated | Mental health | |
Brann 2018 [27] | PROMs | Australia | Pen and ppr | Single centre | 532 adolescents (12-17years, mean 15.3years, sd=1.3) and 125 young adults (18-25years, mean 19.1years, sd=1.6) seen for an initial outpatient appointment in a mental health service between July 2012 and June 2014. 71% female | Young adult strengths and difficulties questionnaire (SDQ) | Mental health | |
Sharma 2020 [130] | PROMs | Multiple countries | Not applicable | Multicentre | 109 allergists | None specified | Allergy | |
Hall 2014 [60] | PROMs | United Kingdom | Not stated | Multicentre | 10 clinicians (5 clinical psychologists, 2 mental health nurses, 1 nurse prescriber, 1 consultant psychiatrist, 1 trainee psychiatrist; 8f, 2m); 8 admin staff; 15 families - young people aged 11-19y (m=5=15years, sd1.9; 8f, 7m) | Strengths and difficulties questionnaire (SDQ) | Mental health | |
Haverman 2019 [65] | PROMs | Not stated | Electronic | Not stated | Around 300 proms available on KLIK website in the following categories: Generic HRQOL [eg, pediatric quality of life inventory (PedsQL)] Disease-specific HRQOL (eg, PedsQL transplant module) Daily functioning [eg, child health assessment questionnaire (CHAQ)] Cognitive functioning [eg, behavior rating inventory of executive functioning (BRIEF)] Symptoms [eg, pediatric ulcerative colitis activity index (PUCAI)] Psychological screening [eg, strengths and difficulties questionnaire (SDQ), hospital anxiety and depression scale (HADS)] Transition [eg, skills for growing up nephrology (SGU-N) tool] | Not stated speciality | ||
Aldekhyyel 2018 [21] | PROMs | United States | Electronic | Single centre | 2,447 CYP who had at least one pain medication administered in 22-month period (11 months before and 11 months after implementation of new system) of the patients/parents who used the system: 45% aged 10-18 54% male 75% white | 27,224 times the PMI triggered pain assessment. 6.5% of these (1767 times) were responded to by 608 unique patient/parents | Pain | |
Griffiths 2017 [56] | PROMs | United Kingdom | Not stated | Single centre | 161 young people who had face-to-face contacts with clinicians in 2-year period at three services | World health organization quality of life-brief (WHOQOL-BREF) Subscales from beck youth inventories Positive and negative syndrome scale Beck depression inventory-ii | Multiple speciality | |
Gerhardt 2018 [53] | PROMs | United States | Electronic | Single centre | Not stated | Not stated speciality | ||
Fullerton 2018 [52] | PROMs | United Kingdom | Not stated | Single centre | 41 clinical supervisors (31f, 10m) - psychologists (22%), family therapists (12%), counsellors (10%), child and adolescent psychotherapists (7%), other unqualified staff (7%), occupational therapists (5%), medics (5%), nurses (5%), primary mental health workers (5%), creative therapists (2%), educational professionals (2%), other qualified staff (2%), unspecified (16%) | None reported | Mental health | |
Engelen 2012 [46] | PROMs | Netherlands | Electronic | Single centre | Children with cancer (0-18 years) shortly (0-3 months) after completion of treatment (stem cell transplantation), their parents and treating pediatric oncologists | PedsQL generic core scale (pediatric quality of life inventory) TapQOL (TNO-AZL preschool children quality of life) | Oncology | |
Engelen 2010 [45] | PROMs | Netherlands | Electronic | Single centre | Pediatric oncologists | PedsQL Tapqol | Oncology | |
Engelen 2012 [47] | PROMs | Netherlands | Not stated | Multicentre | 94 patients (intervention); 99 patients (control); 34 oncologists (47.1% female) | Pediatric quality of life inventory (PedsQL) generic core scale TNO-AZL preschool children quality of life (TapQOL) | Oncology | |
Edbrooke‐Childs 2017 [41] | PROMs | United Kingdom | Not applicable | Multicentre | 109 clinicians, 85% female, median age 53-44years | Not stated | Mental health | |
Cox 2021 [33] | PROMs | United States | Not applicable | Single centre | Health system leaders (56%), including directors of clinical or academic programs and initiatives Measurement implementers (72%), and ambulatory pediatric clinicians (39%) generalists or subspecialists in areas like endocrinology, neuropsychology, or pediatric surgery most employed in academic medical institutions (83%) | Not stated | Not stated speciality | |
Perito 2021 [102] | PROMs | United States | Electronic | Registry network | 114 parent-child dyads | Pediatric liver transplant quality of life (PeltQL) | Transplant | |
Kemp 2018 [169] | PREMs | Canada | Telephone | Multicentre | 3389 parents/guardians of patients under 18years old, (55.1%m, 44.9%f) | Modified child hospital consumer assessment of healthcare providers and systems (child HCAHPS) | Mental health | |
Barthel 2016 [23] | PROMs | Germany | Electronic | Multicentre | 312 children and adolescents (mean age 12.5years, sd=2.8, 47.1% female) with asthma (18.5%), diabetes (65.9%) or rheumatoid arthritis (15.6%), and 8 pediatricians (mean age 43.4years, range 38-52), 4 from each clinic, 50% female, with sub-specialties in diabetology, pulmonology or rheumatology | Kids-cat - first German cat measuring HRQOL in children and adolescents aged 7-17 years. The kids-cat tool covers the five dimensions of physical well-being, psychological well-being, parent relations, social support and peers, and school well-being, which follow the domain structure of kidscreen-27 | Multiple speciality | |
Wolfe 2014 [188] | PROMs and PREMs | United States | Electronic | Multicentre | 104 patients and their parent/s and clinicians | PQ memorial symptom assessment scale (MSAS) Pediatric quality of life inventory 4.0 generic core scales (PedsQL 4.0) Sickness question developed asking how sick the child felt in the last week, between "not sick at all" and "very sick" | Child and parent surveys assessing satisfaction with the PQ intervention, adapted from existing questionnaires | Oncology |
Teela 2020 [142] | PROMs | Netherlands | Electronic | Single centre | 104 patients with chronic kidney disease | Pediatric quality of life inventory for children (PedsQL) TNO-AZL preschool children quality of life (TapQOL) | Nephrology | |
Swales 2016 [136] | PROMs | United Kingdom | Pen and ppr | Single centre | 43 young people in dialectical behavior therapy (dbt), aged 14-18y with 5 or more bpd criteria including recent self-harm | Euroqol 5 dimensions (EQ-5D) | Psychology | |
Aberdeen 2019 [20] | PROMs | United States | Not applicable | Single centre | 72 members of pediatric research in sports medicine society (prism) - Orthopaedic surgeons (56; 78%), sports medicine primary care physicians (14; 19%), nurse practitioners/physician assistants (3; 4%) | Neck-specific PROs Back-specific PROs Shoulder-specific pros (Dash, Quickdash and other "other" (incl. activity and fear avoidance scales)) Hip-specific PROs Knee-specific PROs (IKDC, Pedi-IKDC, LEFS, knee outcome survey, KOOs, KOOs-Child, Other) Ankle pros Additional PROs Affective domain/QOL scales (Pedi-Fabs, ACL-RSI, PROMIS) | Orthopaedic | |
Huang 2012 [68] | PROMs | United States | Not stated | Single centre | 453 physicians of general pediatrics (n=182) and 7 selected pediatric subspecialties (n=271) | Not stated | Not stated speciality | |
Hames 2016 [61] | PROMs | United Kingdom | Electronic | Single centre | 187 young people aged 15-23y (mean 18.0y), 52.9% female | Imparts core set includes: Patient Health Questionnaire (PHQ9) Generalized Anxiety questionnaire (GAD7) The Liver Transition Battery additionally includes: Brief Illness Perception questionnaire (BIPQ) A modified distress thermometer (DT) | Transition | |
Bjertnaes 2018[ 177] | PROMs and PREMs | Norway | Pen and ppr | Registry network | Parents of 2606 patients registered in the Norwegian childhood diabetes registry, aged 0-17, with type 1 diabetes, with 1 outpatient consultation in previous year | No PROM used, however the PREM includes 5 items relating to outcomes | Developed for this trial. Includes organization, consultation, equipment, nurse contact, doctor contact and outcome. | Endocrinology |
Zia 2016 [165] | PROMs | United States | Pen and ppr | Single centre | Adolescent girls aged up to 21years old | PedsQL | Haematology | |
Bele 2022 [190] | PROMs | Canada | Electronic | Multicentre | 17 clinicians and administrators from the Alberta children's hospital (ACH) outpatient asthma and community clinics. 13 working at ACH outpatient asthma clinics | Pediatric quality of life inventory (PedsQL) version 4.0 generic core scales and PedsQL asthma specific module | Respiratory | |
Cheng 2022 [32] | PROMs | United States | Electronic | Multicentre | 40,603 adults and 19,289 children | Patient-reported outcomes measurement information system (PROMIS)- pediatric mobility version 1.0 or 2.0, upper extremity version 1.0, pain inference version 1.0 or version 2.0, pediatric peer relationships version 1.0 | Orthopaedic | |
Chua 2023 [178] | PROMs and PREMs | Singapore | Electronic | Single centre | 451 patients with adolescent idiopathic scoliosis and 279 underwent bracing. mean age 14.6 years in observation group, mean age also 14.6 years in bracing group | Scoliosis research society-22 revised (SRS-22r) European quality of life five dimension five-level version (EQ-5d-5l) EQ-visual analogue scale scores | Using own institution outpatient experience feedback form adapted from the hospital consumer assessment of healthcare providers and system survey | Not stated speciality |
Dalton 2022 [35] | PROMs | United Kingdom | Not stated | Single centre | 519 parents and 248 children (age 7-16) with single suture craniosynostosis | Surgical outcome questions- asked about how noticeable the child's head shape is and how much this bothers the parent and/or child | Neurology | |
Delgiudice 2022 [179] | PROMs and PREMs | Netherlands | Not stated | Single centre | 239 patient questionnaires and 238 parents' questionnaires from 440 patients with jia diagnosed according to the ILAR criteria and enrolled in pharmachild | Juvenile arthritis multidimensional assessment report (jamar) Satisfaction with disease outcome (ja-cass or ja-pass) Available as parent proxy report of child self-report (suggested age range of 7-18 years) | Rheumatology | |
Dhar 2021 [39] | PROMs | India | Not stated | Multicentre | 25 patients above 11 years who have received Dupilmab treatment | Efficacy was assessed by comparing scorad ('scoring atopic dematitis') and EASI (eczema area and severity index). The dermatology life quality index (DLQI) | Dermatology | |
Wheatbutt 2014 [161] | PROMs | United States | Not stated | Single centre | 40 caregivers completed parent-reports, 25 youth and 51 adults completed self-reports | Strengths and difficulties questionnaire Revised children’s anxiety and depression scale Patient health questionnaire (PHQ9) and GAD-7 | Respiratory | |
Fernandez-Quintana 2021 [48] | PROMs | Sweden | Not stated | Multicentre | 111 psychiatric outpatients | ADHD self-report scale for adolescents (ASRS-A) ASRS-A-P for parent | Mental health | |
Fischer 2020 [49] | PROMs | Not stated | Electronic | Multicentre | 203 patients part of the diabetic sub sample (from a clinical sample of 248 patients aged 7-17 years) | Kids-CAT | Not stated speciality | |
Fischmeister 2021 [50] | PROMs | Austria | Electronic | Single centre | 98 children with cancer and 124 corresponding parents completed assessment before and after rehabilitation | PedsQL (children older than 5 years completed self-report version and parents provided proxy-responses) | Rehabilitation | |
Franklin 2021 [51] | PROMs | United States | Electronic | Single centre | 24 patient-parent dyads, patients are athletes with sports injuries | Patient reported outcome measurement information system (PROMIS) | Orthopaedic | |
Graham 2023 [55] | PROMs | Canada | Electronic | Single centre | 35 participants including 2 thalassemia patients, 4 thalassemia caregivers, 2 hemophilia patients, 6 hemophilia caregivers, 3 Sickle Cell Disease patients, 4 Sickle Cell Disease caregivers, 3 immune thrombocytopenia patients, 5 immune thrombocytopenia caregivers, and 6 Health Care Professionals | TranQOL for patients with thalassemia PEDSQL Hemophilia quality of life questionnaire (Haemo-QOL) Canadian hemophilia outcomes-kids' life assessment tool (CHO-KLAT) PedsQL SCD module Kids ITP tool (KIT) | Haematology | |
Gupta 2023 [58] | PROMs | Canada | Mixed | Registry network | 5435 adolescent and young adults (15-29 years) with cancer | Edmonton symptom assessment system (ESAS) | Oncology | |
Hanmer 2021 [62] | PROMs | United States | Electronic | Single centre | 45 practices participated | Routine questionnaires considered during well children care (WCC) visits Modified checklist for autism in toddlers (M-CHAT; 18 and 30 months) The patient health questionnaire (PHQ-2) for ages 11+ to screen for depression. The PHQ-9 was administered if PHQ-2 was positive The screening to brief intervention (S2BI) for ages 11+ to screen about alcohol, tobacco and marijuana. If 3 item S2BI was positive, it continued to the 12 item For children with asthma, an age appropriate asthma control test (act) | Not stated speciality | |
Henning 2022 [66] | PROMs | Europe | Not applicable | Single centre | Clinicians who are part of the European reference network for rare and complex epilepsies (EPICARE) - 4 psychologists, 24 physicians. 11 worked with children and nine with adults and eight with both children and adults | QOL- Quality of Life in Epilepsy 10 (qolie-10) (n = 9), QOLIE 31 (n = 9), and QOLIE 89 (n =5) Psychiatric comorbidity- beck depression inventory (n = 15), beck anxiety inventory (n = 10), hospital anxiety and depression scale (HADs) (n = 9), neurological disorders depression inventory for epilepsy (NDDI-E) (n = 5), general anxiety disorder-7 (GAD-7) (n = 5), and aberrant behaviour checklist (ABC) (n = 5) Wechsler scale of intelligence (WPPSI IV, WISC IV, WAIS IV), Mini-mental status examination MMSE (n = 8), Epitrack (n = 7), Boston Ming test (n = 6), Montreal cognitive assessment MoCA (n = 6), EPItrack (n = 5), and behaviour rating inventory of executive function brief (n = 5) for cognitive dysfunction Adverse events profile (AEP), Liverpool adverse events profile (ILAEP) and complaints assessment scale (CAS) were used to screen for adverse effects of anti-seizure medications (ASM) Arizona sexual experiences scale (ASEX) to measure sexual dsyfunction | Neurology | |
Hjollund 2023 [67] | PROMs | Denmark | Electronic | Single centre | 349 children (mean age 10.7, 36.1% female) | For children-> pain NOS (proxy report) | Pain | |
Wang 2018 [160] | PROMs | United States | Electronic | Not stated | Parents of children with a burn injury involving a 5% of the total body surface area (TBSA) or a critical area (face, hands, feet, genitalia) | Burn outcomes Questionnaire (BOQ) for children aged 5-18 plus pediatric symptom checklist-17 (BOQ-17) (BOQ+p) | Burn | |
Holzman 2021 [168] | PREMs | United States | Electronic | Multicentre | Not stated | NRC health patient survey (completed by parents or guardians) | Urology | |
Jalilova 2023 [69] | PROMs | Turkey | Not stated | Not stated | 41 youth started HCL for diabetes care completed 6th month follow up survey | Pediatric quality of life inventory (PedsQL) diabetes module 3.0 child and parents (8-12 years) Quality of life for youth (13-18 years) Strengths and Difficulties Questionnaire (SDQ) Hypoglycemia fear survey (HFS) for children The revised child and anxiety and depression scale (R-CADS) A-HCLS specific expectation and satisfaction survey | Endocrinology | |
Kliems 2020 [71] | PROMs | United States | Not stated | Multicentre | 20 healthcare providers (physicians, nurse practitioners, social workers, and health psychologists) who care for children with asthma, type 1 diabetes, and sickle cell disease | The patient-reported outcomes measurement information system (PROMIS) family relationships short form | Not stated speciality | |
Kuhn 2022 [74] | PROMs | United States | Electronic | Not stated | 620 patients, 90 received the electronic version | Peess v2.0-disease | Gastroenterology | |
Pasulo 2023 [100] | PROMs | Not stated | Electronic | Single centre | 167 patients in the transition phase to adulthood | Psychological and QOL testing | Transplant | |
Yao 2019 [163] | PROMs | United States | Electronic | Single centre | 178 parents of children (mean age 5.5years old) | Pediatric quality of life inventory (PedsQL) 3.2 diabetes module | Endocrinology | |
Provini 2021 [103] | PROMs | United States | Pen and ppr | Single centre | 293 patients aged 13-18 years | Cutaneous body image (CBI) | Dermatology | |
Pryde 2021 [173] | PREMs | United Kingdom | Telephone | Single centre | 24/45 families responded | Questionnaire looked at satisfaction, advantages/disadvantages over face to face and opinions on continuation of virtual appointments | Neurology | |
Riedl 2022 [106] | PROMs | Austria | Electronic | Single centre | 236 children and 478 parents who are cancer survivors, mean age 11 (age range 5-22) and 139 are male | Pediatric quality of life inventory (PedsQL) 4.0 generic core scales PedsQL 3.0 cancer Children between 5-21 years completed the self-report version and parents independently completed a proxy version | Rehabilitation | |
Ross 2021 [114] | PROMs | United States | Electronic | Single centre | 20 parents of children with asthma aged 5-11 years, 19 portal users, and 1 portal nonuser 17% Asian, 23% African American, 58% Caucasian, and 11% Native American (including mixed races) and 41% were Hispanic/Latino ethnicity | Not stated | Respiratory | |
Lassen 2023 [76] | PROMs | Denmark | Electronic | Single centre | 20 children with t1d aged 11-18 years; 9 male, 11 female; 18 t1d, 2 secondary diabetes. | Diabetes eating problem survey (deps-r) The generic WHO-5 well-being | Endocrinology | |
Leahy 2021 [77] | PROMs | Not stated | Electronic | Not stated | 7-18 year olds pediatric patients | pediatric patient-reported outcomes version of the common terminology criteria for adverse events (ped-pro-ctcae) | Transplant | |
Wray 2019 [175] | PREMs | United Kingdom | Not applicable | Single centre | 1876 parents were asked, 30% responded | Questionnaires for parents developed for services individually, including service/condition-specific questions | Cardiology | |
Luijten 2020 [82] | PROMs | Netherlands | Electronic | Not stated | 12 PROMIS pediatric banks translated | Not stated speciality | ||
Wray 2017 [189] | PROMs and PREMs | United Kingdom | Not stated | Single centre | Parents of 98 infants (96% response) completed prem; PedsQL data for 64 infants (69%) | Infant PedsQL (Generic QoL measure) | Not stated | Surgery |
Mandell 2021 [85] | PROMs | United States | Not stated | Single centre | 164 pediatric burn patients, 81 females, 83 males mean age at injury is 6.9 years (median 6.4) | Patient reported outcomes measurement information system (PROMIS) peer relationship | Burn | |
Woodward 2020 [162] | PROMs | United States | Not applicable | Single centre | Clinicians/leaders (9 in focus group, 2 interviewed) | Not stated | Psychology | |
Mccabe 2023 [9] | PROMs and PREMs | Canada | Not stated | Multicentre | 23 interviews from study 1 and 2; 2 allied health professionals, 5 researchers, 10 clinician scientists (all physicians), 2 evaluation specialists and 4 Alberta health services administrators | Not specified | Not specified | Rehabilitation |
Meryk 2021 [89] | PROMs | Austria | Electronic | Single centre | 12 patients aged 5-18 years age (median 7.2 years) who were treated with chemotherapy and 25% were female | ePROtect monitors patients' symptom burden during and after treatment | Oncology | |
Meryk 2022 [90] | PROMs | Austria | Electronic | Single centre | 10-year-old male patient diagnosed with Burkitt leukemia | 6-8 questions adapted from the pediatric quality of life inventory (PedsQL) | Oncology | |
Meryk 2022 [91] | PROMs | Austria | Electronic | Single centre | 40 children (35 aged 5-18 years and 5 proxies for children aged 1-4 years). all were white | Questions about pain, nausea, appetite loss, physical functioning, and sleep disturbance | Not stated speciality | |
Meyerheim 2022 [92] | PROMs | Germany | Electronic | Single centre | Self-report symptoms scales and diary entries | Multiple specialties | ||
Morris 2023 [93] | PROMs | United Kingdom | Electronic | Single centre | Caregivers of CAMHS patients aged 4-18 years with a diagnosis of autism spectrum disorder (ASD). 98 completed the myHealthE and 98 completed the standard practice. 74% of children are males and mean age of 14.3 | Strength and difficulties questionnaire- p for caregiver completion | Mental health | |
Munaretto 2021[94] | PROMs | Italy | Mixed | Single centre | 18 caregivers and 50 patients 25% f with mean age of 16.4 years | Patient-reported outcomes measurement information system (PROMIS) questionnaire (parent proxy profile and pediatric profile) | Haematology | |
Musterd 2021 [97] | PROMs | Netherlands | Not stated | Single centre | 120 patients aged 8-18 years | Juvenile arthritis multidimensional assessment report evaluation of quality of life (JQL) Checklist individual strength-8 (cis-9) | Rheumatology | |
Ndokera 2021 [171] | PREMs | United Kingdom | Not stated | Multicentre | 67 carers | Focusing on experiences of attending the hospital and the impact of the necessary changes | Cardio, obstetrics neonatology, intensive, multiple | |
Ng 2023 [184] | PROMs and PREMs | Multiple countries | Mixed | Registry network | 41 patient-parent dyads across 5 Starzl Network for Excellence in Pediatric Transplantation (SNEPT) sites for the first phase, 109 patient-parent dyads across 10 SNEPT sites for the second phase, 8 parents for phase 3 and 23 completed the PeltQL on a data-enabled FCC android device at one SNEPT site for phase 4. one year follow up in phase 1 and 2, only 2 of 10 SNEPT sites continued PeltQL administration | Pediatric liver transplant quality of life (PeltQL-self and proxy-versions) | User experience survey employed at various aspects of the implementation. all surveys to clinicians and parent stakeholders send via online survey platform | Transplant, multiple |
Nordlind 2022 [172] | PREMs | Sweden | Mixed | Single centre | Variety of questionnaires used, some developed locally at the hospital whereas others were developed only for a specific department or ward in Electronic or paper formats. some were targeted to special patient group whereas others focused on experiences of hospitality participation and patients' satisfaction. Some had questionnaire only for children whereas other had just proxy or both | Not stated speciality | ||
Saldana 2022 [116] | PROMs | United States | Not stated | Single centre | 163 pediatric burn patients | Patient-reported outcomes measurement information system (PROMIS) | Respiratory | |
Santucci 2022 [119] | PROMs | United States | Not stated | Single centre | 84 patients (aged 11-21 years, median age 16y, 71% female, 93% Caucasian) | Abdominal pain index (api Nausea severity scale (nss), Functional disability inventory (fdi) Pittsburgh sleep quality index (psqi) Children’s somatic symptoms inventory (cssi) Patient-reported outcomes measurement systems (PROMIS) Pediatric anxiety-short form Pediatric depression-short form scale | Pain | |
Santucci 2022 [119] | PROMs | United States | Not stated | Single centre | 395 patients ages 8-18 years mean 14.82, 90% Caucasian and 76% females | Pain (pain intensity) Anxiety [screen for child anxiety related disorders (scared)] Patient-reported outcomes measurement systems (promis)-short form scales), Depression and/or suicidal ideation (phq-9) | Gastroenterology | |
Schlenz 2022 [127] | PROMs | Not stated | Not stated | Not stated | 89 adolescents and young adults with sickle cell disease between ages 13-25 | Ratings of sleep quality, overall pain, and 2 measures of pain related impairment (pain impact and pain burden). | Haematology | |
Schougaard 2019 [128] | PROMs | Denmark | Electronic | Single centre | Patients with epilepsy, 15 and over | Not stated | Neurology | |
Sheikh 2021 [131] | PROMs | United States | Pen and ppr | Single centre | 21 patients aged between 13-25. 57% male. 17 completed first phase and 4 completed second phase | Adolescent md Anderson Symptom Inventory (mdasi-adol) | Oncology | |
Simpson 2020 [132] | PROMs | United States | Not stated | Single centre | 233 patients had completed parent stress data, 44 had completed the GAD-7 and PHQ-9. mean age of 8.31, range between 2-20.4, 52.5% female | Parental stress scale (PSS) Pediatric Health Questionnaire (PHQ-9) General anxiety disorder (GAD-7) | Neurology | |
Smyth 2021 [133] | PROMs | Other | Electronic | Single centre | 351 patients in the IBD program | The Pediatric Quality of Life Inventory version 4.0 short form generic core scale (PedsQL) | Gastroenterology | |
Stephens 2021 [174] | PREMs | United States | Electronic | Multicentre | 7018 parents/guardians of children, 6584 were less than 18 years old | Press Ganey outpatient medical practice survey (PGOMPS) | Not stated speciality | |
Stratton 2022 [185] | PROMs and PREMs | Canada | Electronic | Single centre | PROMs-the 88 surveys analyzed belonged to 69 respondents, 32 were patients and 37 were parents/guardians. Of the 88 surveys, 42 were patients and 46 were parents/guardians. 56 were patient-parent dyads. Patients age ranged from 10-17 years | Patient and parent/guardian proxy metrics for pain location, duration, and intensity Relevant patient-reported outcomes measurement information system (PROMIS) metrics (pain intensity, sleep disturbance, pain interference, anxiety, depressive symptoms) Parent proxy short form anxiety and depressive symptoms Pain Catastrophizing Scale Child (PCS-C) and parent (PCS-P) | Post-questionnaire satisfaction survey to ascertain their priorities in the assessment of their transition pain | Pain |
Swales 2022 [137] | PROMs | United Kingdom | Not stated | Single centre | 8/13 children discussed in MDT | 4 week seizure diaries 1 week diary of sleep, school attendance, and other activities, QOL questioners includes impact of epilepsy questionnaire and PedsQL | Rheumatology | |
Taxter 2022 [140] | PROMs | United States | Electronic | Single centre | 58 patients with an incident diagnosis of jia during study period. 66% were female and 34% had oligoarticular juvenile idiopathic arthritis. Median age 10.8 years, between 6.5-14.9 years. | Pain Energy Patient disease activity Psychiatric symptoms Difficulties falling or staying asleep Patient global disease activity score part of CJADAS-10 | Rheumatology | |
Teela 2019 [141] | PROMs | Netherlands | Electronic | Multicentre | 8 children and 17 parents participated in the focus group | Not stated | Not stated speciality | |
Tyack 2020 [144] | PROMs | Australia | Electronic | Multicentre | 30 interviews were conducted (14 children with life-altering skin conditions (burn scars, infantile hemangiomas and dermatological conditions), 16 clinicians). field notes involved 51 child and caregiver participants | Not stated but a measure of health-related quality of life | Dermatology | |
Vangorp 2021 [149] | PROMs | Netherlands | Electronic | Single centre | 799 (caregivers of) children with cancer). Of these participating families, the mean age of the child was 9.4 and 55% was male. Hematological cancer was the most frequent diagnosis group (45% before treatment and 64% after treatment) | Dutch proxy- (2-7 years old) or self-report (age: 8-18 years) Pediatric quality of life inventory and Multidimension fatigue scales (PedsQL generic and fatigue scales) Distress thermometer for parents (DT-P) | Oncology | |
Vanmuilekom 2019 [150] | PROMs | Netherlands | Electronic | Not stated | Focus group - 8 adolescents (12-18 years) with chronic health conditions and parents (of children 0-18 years) registered on the KLIK website. | Questionnaires about health related quality of life (HRQOL) | Multiple speciality | |
Vanmuilekom 2021 [151] | PROMs | Netherlands | Electronic | Single centre | Children (8-12y) and adolescents (13-17y) from the general population (n=966) and from the pediatric population (n=1209) | PedsQL 4.0 (self-report) for children (8-12 years) and adolescent (13-17 years) | Multiple speciality | |
Vanmuilekom 2021 [152] | PROMs | Netherlands | Electronic | Not stated | 28 clinicians participated (n=5) focus groups. Mean time in years as a KLIK user is 5.2 years with range of 0.3-7.4 includes medical doctor, psychologists, nurse or social worker | Patient-reported outcomes measurement information system (PROMIS) | Not stated speciality | |
VanOers 2021 [156] | PROMs | Netherlands | Electronic | Multicentre | Not stated | Health related quality of life | Multiple speciality | |
Vansonsbeek 2021 [187] | PROMs and PREMs | Netherlands | Electronic | Single centre | Adolescents aged 12-17 years old, and parents of children aged 4-17 years | Strength and difficulties questionnaire (SDQ) Kidscreen-52 child version and Kidscreen-27 parent version to measure child or adolescent's quality of life Treatment support measure (TSM), for parents (TSM-P) and youth (TSM-Y) | Youth thermometer- to measure satisfaction with the treatment they had received. the youth thermometer- child version consists of 28 items. the youth thermometer -parent versions ask about child's treatment and training in parenting skills (if applicable), so 31 or 32 items, respectively. subscales included appraisal information, appraisal participation, appraisal of the clinician (child's and parents' clinician), appraisal of treatment result and background information. | Mental health |
Veltkamp 2022 [157] | PROMs | Netherlands | Electronic | Single centre | 121 patients/parents registered themselves on the KLIK PROM portal. 112 completed at least one PROM | TNO-AZL preschool children quality of life (TAPQOL) for children under the age of 5, parents complete the questionnaires Pediatric Quality of life inventory (PedsQL), generic scale 4.0. Proxy reporting for children aged 2-7 years and self-reports for children aged 8-18 years | Nephrology | |
Vuong 2022 [159] | PROMs | Netherlands | Electronic | Single centre | 109 children with media age of 11.8 years | Pediatric quality of life inventory | Haematology | |
Verkleij 2020 [158] | PROMs | Netherlands | Not stated | Single centre | 15 primary ciliary dyskinesia patients aged 6-18years old | GAD-7 PHQ-9 QOL-PCD | Respiratory | |
Zachar-tirado 2021 [164] | PROMs | United States | Not stated | Single centre | 101 children and adolescents with traumatic brain injury (mean age 15.4 years), 55% were male 88% were white | Physical health questionnaire (PHQ), 9 items (PHQ-9) and PHQ adolescent version (PHQ-A) and the short version of PHQ-A (PHQ-A-2) | Rehabilitation | |
VanOers 2013 [154] | PROMs | Netherlands | Electronic | Single centre | 17 children with home parenteral nutrition (aged 8-18) (hpn) or their parents (children aged 0-7) | HRQOL | Gastroenterology | |
Vanoers 2018 [155] | PROMs | Netherlands | Electronic | Single centre | 37 healthcare professionals (12 pediatricians, 14 nurses, 6 psychologists, 3 physiotherapists, 1 dietician, 1 social worker) | Not stated | Multiple speciality | |
Vangorp 2021 [149] | PROMs | Netherlands | Electronic | Single centre | 799 pts (and their carers), mean age 9.4y (sd 4.9), 55% male | Dutch pedsql proxy or self-report | Oncology | |
Vandersluijsveer 2013 | PROMs | Netherlands | Electronic | Not stated | Children with congenital hypothyroidism | Not stated | Endocrinology | |
Vandecrommert 2015 [147] | PROMs | Netherlands | Not stated | Single centre | Roughly 90 children with congenital adrenal hyperplasia (cah) | Qol tool | Endocrinology | |
Valles 2017 [146] | PROMs | Spain | Electronic | Multicentre | 136 patients with type 1 diabetes (t1d) (72 girls, mean age 13.4y) | Kidscreen-27 (online) | Endocrinology | |
Uzark 2013 [145] | PROMs | United States | Not stated | Single centre | - 176 patients, aged 8.2-18.9years old (mean 12.8years old), 103m, 73m - 3 cardiologists | Cardiology | ||
Townley 2019 [143] | PROMs | Canada | Not stated | Single centre | CYP aged 5-17 | Self-report and proxy versions of the patient reported outcomes measures information systems (PROMIS) | Rehabilitation | |
Tollit 2019 [186] | PROMs and PREMs | Australia | Electronic | Single centre | Approx. 600 young people aged 3-17years old (prospective cohort) | Gender identity questionnaire Gender preoccupation and stability Questionnaire Gender slider Body image scale Social transition questionnaire Gender voice questionnaire Chest dysphoria scale Additional questions about effects of hormonal treatment designed by project team Youth self-report Short mood and feelings questionnaire Spence children's anxiety scale DASS21 Social phobia scale Gender minority stress and resilience measure Brief resilience scale Self-harm questionnaire Columbia-suicide severity rating scale Branched eating disorders test Social responsiveness scale-2 Psychological sense of school membership Gatehouse bullying scale Child health utility 9d (chu-9d) General functioning 12-item subscale of the McMaster family assessment device Questions adapted from communities that care survey and the childhood to adolescence transition study Items developed by the trans20 team and items based on the victorian population health survey | Not stated speciality | |
Spraggs-hughes 2018 [134] | PROMs | United States | Electronic | Multicentre | Not known | Varies according to population and subspecialties | Orthopaedic | |
Taxter 2018 [139] | PROMs | United States | Electronic | Single centre | 615 clinic visits march-dec 2017 | Questions about current symptoms, pain, fatigue, disease activity, function, and interest in research (in English and Spanish) | Rheumatology | |
Schepers 2013 [121] | PROMs | Netherlands | Not applicable | Single centre | 118 patients/proxies; 31 clinicians | Generic PedsQL | Oncology | |
Schepers 2016 [123] | PROMs | Netherlands | Not applicable | Single centre | 110 families | Physical/psychological ePROMs via KLIK | Oncology | |
Schepers 2016 [124] | PROMs | Not stated | Electronic | Single centre | 29 clinicians | Not stated | Oncology | |
Scharrer 2013 [121] | PROMs | United Kingdom | Not stated | Single centre | 50 pts randomly chosen under 12years with atopic eczema | Children’s dermatology life quality index (CDLQI) or infant’s dermatitis quality of life (IDQOL), plus pro forma to audit performance against nice guidelines | Dermatology | |
Segerdahl 2008 [129] | PROMs | Sweden | Pen and ppr | Multicentre | 16,309 day surgeries in children 1-16years old | Visual analogue scale (VAS) Numerical scale rating (NRS) Wong scale | Surgery | |
Ryan 2013 [115] | PROMs | United States | Not stated | Single centre | 112 pts aged 7-18years old (m=14.45, sd=2.92) with IBD and their parents | Pediatric quality of life inventory, version 4.0 (PedsQL 4.0) Children’s depression inventory: short version (CDI-S) Beck depression inventory second edition (BDI-II) | Gastroenterology | |
Romo 2016 [113] | PROMs | United States | Electronic | Single centre | Parents of 19 children aged 5-18years old | Burn outcomes questionnaire (BOQ - Plus pediatric symptom checklist (BOQ+P) | Burn | |
Robinson 2017 [111] | PROMs | United Kingdom | Pen and ppr | Single centre | All patients aged 5-19years (mean 13years) attending Sheffield children's hospital pain clinic for the first time between December 2009 and December 2014 | Bath adolescent pain questionnaire (BAPQ) and version for parents (BAPQ-P) Daily functioning (physical and social) Emotional functioning (depression, general and pain related anxiety), Family functioning Development Only validated for age 11-18y but also used for 5-10y | ||
Robertson 2020 [109] | PROMs | United Kingdom | Not applicable | Single centre | 18 clinicians completed survey, 27 took part in the focus group. clinicians are part of a multi-professional team comprising of opthalmologists, orthoptists, optometrists, clinical vision scientists, nurses and an eye clinic liaison officer | Vision-related quality of life (VQOL-CYP) Functional vision (FVQ-CYP) | Ophthalmology | |
Robertson 2020 [109] | PROMs | United Kingdom | Mixed | Single centre | 93 pts aged 8-17years old, mean age 11years old (sd=2.4), 48 (52%) were male and 51 (55%) were white British. Forty-four (47%) were visually impaired and 10 (11%) were severely visually impaired or blind | Vision-related quality of life (VQOL CYP) and the functional vision (FYP CYP) | Ophthalmology | |
Robertson 2019 [108] | PROMs | United Kingdom | Not applicable | Single centre | 18 clinicians | Ophthalmology | ||
Richardson 2016 [105] | PROMs | United States | Not stated | Single centre | 59 patients with acute kidney injury/also collected from other patients | HRQOL | Nephrology | |
Pennisi 2013 [101] | PROMs | Australia | Not stated | Multicentre | 81 pts aged 14-18years old (mean 15years old sd 1.46), 34 male | Diabetes attitudes wishes and needs, monitoring individual needs in diabetes (dawnmind) youth questionnaire (my-q) who 5 well-being component | Endocrinology |