Table 1 Summary of characteristics of included studies

Anthony (2021); Canada; Qualitative [91]

To elicit perceptions from patients, caregivers, and professionals about the potential role of PROMs in the clinical care of paediatric transplant patients to inform effective implementation in this setting

N = 63; Tertiary Hospital; 9–17 years; Organ Transplant

PedsQL4.0 Generic Core Scales/PedsQL4.0 Transplant Module; Completed on Dutch ePROM platform by patients and parents prior to appointment

Some adolescents did not want to share concerns about mental health and children did not always see the benefit. It was felt that bringing well-being into the clinical care conversation was a positive in terms of improving patient communication and engagement and informing practice. Ensuring the accurate interpretation of data was important to professionals and the need for a multi-disciplinary team to achieve this was highlighted both for interpretation and intervention

Barthel (2016); Germany; Mixed Methods [106]

To describe the implementation process of the Kids-CAT in clinical settings, focusing on the experience of children and adolescents regarding the user-friendliness and comprehensibility of the Kids-CAT and the experience of paediatricians with integrating the Kids-CAT Report into daily clinical routine

N = 32; Tertiary Hospital; 7–17 years; asthma/diabetes/rheumatoid arthritis

Kids-CAT; study nurses supervised CYP while filling out the Kids-CAT in the clinic prior to consultation

Most participants felt the measure had a positive impact if patient-physician communication. Patient difficulties were better able to be identified and reports enhanced clinical patient data. Feasibility scores across perceived ease, need for help, and readability all indicated good feasibility. Paediatricians felt the measure would be desirable to integrate into routine practice and the computer-based application would facilitate this. Clinicians highlighted concerns when difficulties highlighted by the measure were outside their expertise or they lacked the resources to address them; multi-disciplinary joined-up working would better facilitate the use of the measure in practice

Batty (2013); UK; Mixed Methods [72]

To report on the implementation of Routine Outcome Measurement within three CAMHS affiliated to CAMHS Outcome Research Consortium

N = 127; Secondary Care; children and adolescents unspecified; Mental Health

HoNOSCA/SDQ-parent/SDQ-teacher/SDQ-self/Conner' rating scale-teacher/Conners' rating scale-parent/C-GAS/CHI-ESQ/CAF; Measures included both self-report and parent/teacher proxy completion

Barriers to use included: lack of training, lack of awareness, lack of resources, and not valuing the measure. Completion of outcome measures was viewed by some as a ‘tick box exercise’ with little clinical or patient utility. Others felt that outcome measure were an important and useful way of recording progress. More information and training would better support the use of measures in practice as would integration with electronic patient records, and sufficient administrative support and resources

Practical difficulties included low rates of completed questionnaires being returned. Some outcome measures also were not appropriate for some groups of children e.g., developmental difficulties, and often overlooked the impact of the child’s conditions on parents and carers

Bear (2021); UK; Cross Sectional [73]

To develop a self-report measure of practitioner attitudes to ROM in order to better understand the barriers to successful implementation in CAMHS

N = 184; Secondary Care; children and adolescents unspecified; Mental Health

Standardized tools (e.g., SDQ)/Goals measures/ symptom tracking measures; Measures included both self-report and parent/teacher/ professional proxy completion

Professionals who frequently used outcome measures mostly felt service users were happy to complete them whereas those that used them infrequently, were less likely to endorse this. Professionals who frequently used outcome measures were more likely to describe them as helpful for planning support, deciding treatment approaches, and supporting shared descried making. Those in the frequent user group felt there was a strong evidence base for the use of outcome measures, were more likely to have attended external accredited training, and found training helpful compared to the infrequent user group

Berger-Jenkins (2019); USA; Quality Improvement [42]

To implement comprehensive screening for child behaviour and social determinants of health in an urban paediatric practice, and explore rates of referrals, and follow-up for positive screens

N = 349; Primary Care; 6 months-10 years; healthy and medical/ developmental/behavioural/ psychiatric comorbidities

SWYC; parent-proxy completion only; both paper and electronic versions administered by clinic staff

Logistical/resource barriers included running out of photocopies of paper screens and staff unsure of eligibility for screening. There were also difficulties with integrating the electronic version of the measure into the electronic medical record. Other issues included families losing or forgetting to deliver completed screenings to providers. Education of front desk staff of the eligibility criteria increased screening rates as did including a reminder to return screens for families

Berry (2014); USA; Quality Improvement [43]

To increase knowledge, focusing on intent to change practice and implementation of routine early childhood developmental screening

N = n/a; Primary Care; 0–3 years; developmental delay

ASQ-3/ASQ-SE/PEDS/M-CHAT/EPDS/PSC/PHQ-9/HITS-Domestic Violence Questions/Addressing Mental Health Concerns in Primary Care: A Clinicians Toolkit; administered by professionals; parent-proxy completion only

A number of barriers to implementation and challenges to use in practice were identified including parental inability to complete screens due to language barriers, low literacy, and distraction of other children; high staff turnover; lack of an identified lead clinician (champion); not having sufficient resources or awareness of services professionals can refer to if children screen positive and both monetary and time costs of screening. Team meetings helped professionals better determine how to implement the screening process

Bhandari (2016); USA; Non-randomised experimental study [44]

To describe the first application of CHOIR in a paediatric pain clinic (Peds-CHOIR), with emphasis on the dual-tracking capacity for patient and caregiver reported outcomes

N = 352; Tertiary Hospital; 8–17 years; pain

Peds-CHOIR (includes: Demographic and Pain History Questionnaire, Graphical body map; PCS-C/PCS-P, patient- and parent- reported PROMIS domains: mobility, pain interference, fatigue, peer relationships, anxiety, and depression); measures were administered through the CHOIR system; both child and parent-proxy completion were included

Clinical staff, patients and families all felt positively about the implementation of the Peds-CHOIR battery. Patients appreciated the ease of administration, short completion time, and visuals such as graph tracking of progress over time. When adherence dropped after 18 months, additional training and education for professionals in relation to its clinical utility and the benefits for patients facilitated an increase in use again. Completion by families at home before attending appointments improved clinic flow. Implementing and integrating Peds-CHOIR into clinic systems cost approximately $50,000, with $5,000- $7,000 estimated for annual maintenance

Bose (2021); USA; Quality Improvement [45]

To improve the identification and management of adolescent depression by implementing a practice-based, universal depression screening

N = 184; Primary Care; 12–18 years; depression

PHQ-9 (Adolescents); implemented during annual wellness visits; completed by adolescents only

Implementation of the measure led to a statistically and clinically significant increase in diagnoses of depression and the percentage of adolescents who started treatment compared to pre-implementation

Brodar (2021); USA; Qualitative [46]

To describe paediatric diabetes care providers’ views on the relationship between psychosocial stress and diabetes, their experiences with psychosocial screening and psychological consultation within their clinic, and their suggestions for mental health professionals working with youth who have diabetes

N = 7; Tertiary Hospital; 12–18 years; Diabetes

PHQ-A/GAD-7/eating disorders/diabetes stress/family conflict/ life satisfaction/ intrinsic motivation/ insulin adherence; routine screening for psychosocial concerns annually or more often during clinic consultations; adolescents only

A few professionals raised concerns around adolescents completing screens honestly and accurately, and there were some concerns around not having time to complete screens in busy clinics. Professionals felt the screen may help identify problems that would have previously not been identified in an efficient way and appreciated the inclusion of a diabetes specific measure. To better facilitate implementation and use in practice, professionals wanted more advance notice of which patients needed to be screened as well as more training and education related to the screening procedures. Screening information was perceived as positively impacting care, and further sharing of results with other team members was raised as something that would further improve care

Butz (2017); USA; Quality Improvement [47]

To demonstrate the capacity of a high-volume paediatric psychology outpatient clinic to reliably collect a quality-of-care measure

N = n/a; Secondary Care; paediatric unspecified; Psychological

PedsQL Core 4.0; parent proxy and CYP completion; provided by clinic staff and first and fourth visit

After training participating professionals, completion of the measure by families increased and by enlisting registration staff to identify missing forms, completion rates increased further. Automated alerts and reports for missing data supported further interventions to improve measurement collection and use of the process map suggested other areas of delegation by which supportive staff could aid clinicians in obtaining the data from families. Computerised administration facilitated the implementation of the measure. A shift in leadership led to a shift in focus away from the project

Campbell (2017); USA; Quality Improvement [49]

To assess changes in quality of care for children at risk for ASD due to process improvement and implementation of a digital screening form

N = 1205; Primary Care; 16–30 months; Autism

M-CHAT / M-CHAT-R / M-CHAT-R/F; parent-proxy completion only; completed digitally on a tablet and screen report provided to clinician ahead of appointment

During the intervention 0% [n = 10] of clinicians felt using the M-CHAT disrupted workflow. Clinicians generally felt the M-CHAT added useful information to the clinical picture. 90% [n = 10] of clinicians felt that the digital M-CHAT-R/F improved autism assessment post intervention and 90% [n = 10] preferred the digital version and report to the paper version. Pre-intervention 88% [n = 16] clinicians felt the M-CHAT was easy for parents/caregivers and post-intervention this increased to 100% [= 10]

Campbell (2021); USA; Quality Improvement [48]

To increase the proportion of visits with screening for autism and the proportion of visits with referrals for autism evaluation

N = n/a; Primary Care/Community; 16–30 months; Autism

M-CHAT-R/POSI; parent-proxy only; delivered by professionals at well child visits

The proportion of referrals increased 1.5-fold in intervention clinics (from 1.3% to 3.3%) but not in community clinics

Effective interventions included training the staff to administer a more sensitive screening instrument, prompting referral for scores suggestive of autism, adding reminders to the EHR, and adding autism evaluation in intervention clinics

Chen (2022); USA; Cross-sectional [50]

To characterize paediatricians’ perceived barriers and areas of confidence in assessing PROs in the U.S., and to test associations of these factors with implementing PRO assessment

N = 458; Tertiary Hospital; Paediatrics unspecified; cardiology/endocrinology/ gastroenterology/haematology-oncology/nephrology/pulmonology/ rheumatology

N/A

Barriers included (n = 158) long length of PRO instruments (76.0%), limited skills on scoring PRO results (73.7%), limited ability to interpret PRO results (71.7%), Varying capabilities of children (66.8%). Only 26% of the paediatricians were confident in their ability to administer PRO instruments. 44% of paediatricians felt confident that PRO assessment provides more benefits to patients than relying on clinical judgement alone and 40% of the paediatricians indicated that PRO assessment is compatible with standard practice. Paediatricians in academic settings had more interest in assessing all PRO domains (except emotional and social well-beings) compared to those who worked in private settings (all p-values < 0.05). By paediatrician characteristics, those aged over 40 years reported more barriers to PRO assessment than aged 20–40 years

Corathers (2013); USA; Quality Improvement [51]

to evaluate the prevalence of depressive symptoms adolescents with type 1 diabetes, to quantify the number referrals generated from screening and to evaluate patient and staff acceptance of screening

N = 541; Tertiary Hospital; 13–17 years; Type 1 diabetes

CDI; CYP completion only; CYP completed the screen in the examination room simultaneous to nursing intake

The majority (91.5%) of patients felt depression screening was important and all staff felt depression screening was highly important

Cox (2021); USA; Qualitative [52]

To understand the real-world barriers to PROMIS Paediatric clinical use as identified by clinicians and health system leaders

N = 18; Tertiary Hospital; Paediatric unspecified; population unspecified

PROMIS measures; CYP and parent proxy-report

Concerns around wording of items and language barriers for non-English speaking CYP/parents and understanding of items were raised as potential issues. Inadequate privacy mechanisms or lack of communication about privacy mechanisms can result in patients/parents not completing measures. Engaging stakeholders, communicating the purpose of PROMIS measures to clinicians and patients, and training providers and other staff on how to administer, score, and interpret measures were identified as facilitators. There were logistical issues noted with integrating measures into EHR systems and the resources required for doing so meaning some health systems relied on pen-and-paper administration

Cunningham (2020); Canada; Non-randomised experimental study [92]

To present one example of implementation science in a preschool speech-language service system

N = 45; Secondary Care; 0–6 years; speech and language

FOCUS/FOCUS-34; parent proxy completion only; administered by Speech-Language Pathologists at six-month intervals

Positive ratings increased across the survey items post webinar intervention relating to regular use of outcome measures, recognition of the evidence relating to the development and validation of the FOCUS, how to implement, use, score, and interpret FOCUS, the benefits and value FOCUS has

Cunningham (2018); USA; Quality Improvement [53]

To evaluate the presence of anxiety, pain, and functional disability in patients presenting with abdominal pain; replicate past research that revealed an association between anxiety, pain, and disability in a large clinical population; create a systematic approach to managing youth with FAPD on the basis of risk status; and quantify the number of psychological referrals generated after routine screening

N = 5221; Primary Care; 9–18 years; functional abdominal pain disorders

SCARED child report/FDI-child version/The numeric rating scale for pain; Child self-report only; screens were administered during the pilot by paper and pencil by clinical staff, and then during larger scale implementation a web-based assessment process was conducted on a table provided at clinic check-in

Professionals felt screening revealed important information that would not have been identified in a standard visit, helped to frame the conversation with patients and was a positive experience that created a systematic approach to care and increased referral rates (After implementing the screening, psychological referrals rose from an average of 8.3 per 1000 patients per month to15.2 per 1000 patients per month). However, time, consistency, and limited resource access created barriers to implementation and use in practice

Davies (2021); South Africa; Non-randomised experimental study [101]

To demonstrate that mHealth technologies have the potential to improve the management of epilepsy in Africa

N = 40; Tertiary Hospital; 4–16 years; Epilepsy

CHU9D/EQ-5D-Y/custom medication adherence, ketogenic diet, and sleep questionnaires; Child and parent proxy report;

Aparito app on smart phone with linked wearable wrist worn device pushed notifications to prompt questionnaire completion every 30 days, and every day for a yes/no sleep question

There were a number of costs to patients including the cost of data for mobile app, phones, and repairs and for the institution costs relating to platform configuration, cloud hosting, personnel, devices and replacements. 87% of participants had to be given smartphones with better capabilities upon enrolling into the study as they either did not have smartphones or had phones that were not compatible with Bluetooth. Three phones were lost, three were stolen and ten stopped functioning. Nine participants had handsets re-paired or changed, but lost or stolen phones were not replaced

Edbrooke-Childs (2017); UK; Cross-sectional [74]

To examine the association between PROM, use and clinician demographic characteristics, attitudes and efficacy

N = 109; Secondary Care; children and adolescents unspecified; mental health

N/A

Mean scores for PROM use and PROM self-efficacy were higher for clinicians who reported having received training in the use of PROMs than for clinicians who reported not having received training. However, there was not a significant difference in PROM attitudes between clinicians who reported having received training and those who reported not having received training. Clinicians with more positive attitudes or self-efficacy regarding PROMs had higher levels of PROM use than clinicians with less positive attitudes or self-efficacy regarding PROMs

Eilander (2016); The Netherlands; Mixed Methods [82]

To assess whether monitoring QoL improves well-being and care satisfaction of adolescents with type 1 diabetes

N = 157; Tertiary Hospital; Adolescents Unspecified; type 1 diabetes

DM-Y/ MY-Q; CYP and parent-proxy completion; measures were administered by professionals prior to consultation in clinic

All teams struggled with the logistics of DM-Y, including room to complete the MY-Q, requesting adolescents to come earlier for this purpose, problems with the web-based MY-Q, time to consult and discuss within the regular appointment. Motivations for use included: focus on the broader context of the child, recognition of interactions between physical and psychosocial factors, external motivations (guidelines), endorsement by external association, partnership between clinics, financial benefits, being able to objectify their clinical impression of QoL of their patients, usability. According to 75.0%, DM-Y did not interfere with regular medical care (19.4% neutral). Collaboration within teams with regard to DM-Y was considered good by 61.1%

Engelen (2010); The Netherlands; Case Report [18]

To provide a thorough description of the development and implementation of a PRO on HRQoL‚ the QLIC-ON PROfile, in clinical paediatric oncology practice

N = 84; Tertiary Hospital; 0–18 years; cancer

QLIC-ON-PROfile: PedsQL/TAPQOL; included both child and parent-proxy completion; measures were completed electronically

Training programmes and engagement of clinicians in the development process supported implementation and use in practice. For CYP and families, explanations of what, why, and how to complete facilitated measure completion

Fäldt (2019); Sweden; Mixed Methods [99]

To investigate nurses, experiences and sense of competence when using the ITC communication screening at the 18-month health visit

N = 36; primary care; 18 months; communication disorders

ITC; parent proxy completion only; administered by nurses at health visit

The length of the ITC as well as the language used were considered potential barriers, both in terms of the time it would take to complete, as nurses noted they often did not have time. For parents with reading difficulties, cognitive disorders, or those who were not proficient in Swedish, it would be difficult to understand. A low percentage of parents completed and brought the ITC to visits, and this was in part due to the check list having been implemented in the context of research. ITC led to more referrals and gave nurses an objective measure, making them feel more secure in the developmental check-ups

Fält (2020); Sweden; Mixed Methods [100]

To describe a facilitation programme developed to support the introduction of SDQ in clinical practice and evaluate how nurses perceived the facilitation strategies used

N = 68; Primary Care; 3–5 years; mental health

SDQ; parent and teacher proxy completion (only included data regarding parent proxy completion; Nurses administered SDQ to parents

More than half (58%) of the nurses reported of encountering negative reactions from parents in relation to the SDQ. Other issues with items included them not being age-appropriate or difficult to interpret, as well as language barriers when Swedish was not their first language. Nurses felt the SDQ improved quality of the check-ups, providing more structure, and a basis for discussion with parents (particularly for discussing sensitive topics) and increased focus on the child, as well as increasing their knowledge of the child’s mental health more broadly. At the end of the trial, 96% stated it was now an integral part of routine practice. Nurses appreciated the facilitation strategies. In the survey, educational meetings and educational outreach visits received ‘very important’ scorings, at 41% and 33%, respectively

Fein (2010); USA; Non-randomised experimental study [54]

To determine the adoption rate of the Web-based BHS-ED system during routine clinical practice in a paediatric ED, and to assess this system’s effect on identification and assessment of psychiatric problems

N = 857; Tertiary Hospital; 14–18 years; mental health

BHS-ED; CYP completion only; emergency department nurses or technicians asked patients to complete a web-based screen in private where possible after patient medical assessment

After implementing the screen, there was a significant increase in identification of patients with psychiatric illness (2.5% to 4.2%) indicating that even when not all patients can be screened, the implementation of this process can increase the likelihood of discovering psychiatric illnesses in the emergency department

Fenikilé (2015); USA; Qualitative [55]

To explore potential barriers to adoption of recommended screening for autism by family physicians at 18- and 24-month well-child visits

N = 15; Primary Care/Community; 18–24 months; autism

Autism screening tools (M-CHAT); parent proxy completion only; administration of screen in well-child care visits

In general, participants who have been in practice longer did not agree with the American Academy of Paediatrics’ universal screening recommendation for a specific condition. Some participants indicated that they were not aware of any Association guideline recommending routine screening for autism. Some participants viewed screening for a specific condition to be an inefficient use of a physician’s time due to time constraints of clinic visits, and lack of resources

Friedel (2020); Belgium; Qualitative [105]

To assess the face and content validity, acceptability and feasibility of a French version of the CPOS

N = 44; Tertiary Hospital/Community; 9–18 years; Life-limiting and life-threatening conditions

C-POS/adapted C-POS/ SEIQoL/QOLLTI-F; both CYP and parent proxy completion

CPOS was perceived as a useful tool that shined a ‘warning light’ on overlooked domains, helping professionals to individualize and to improve the care provided. Parents and children all expressed positive feelings about the interviews. Furthermore, parents said that it allowed them to identify what helped them and to express to one another their mutual sense of gratitude

Fullerton (2018); UK; Mixed Methods [75]

To examine the impact of training supervisors in using PROMs on clinical practice, given the importance of leadership when changing behaviour

N = 50; Secondary care; children unspecified; mental health

N/A

Supervisors had more positive attitudes to administering PROMs and using feedback from PROMs and had higher levels of self-efficacy about using PROMs in supervision, after UPROMISE training. Supervisees commented that supervisors used PROMs to a greater extent after training. Supervisees commented that supervisors were more confident in their use of PROMs in supervision

Gerhardt (2018); USA; Case Report [56]

To describe the development and implementation of a PRO program at Cincinnati Children’s Hospital Medical Centre that can serve as a standardized approach for the use of PROs in a clinical setting

N = n/a; Tertiary Hospital; children unspecified; multiple condition groups including: asthma, allergy, Autism, diabetes, anxiety, cardiology, nephrology, depression

26 Generic PRO Instruments (covering emotional health, behavioural health, social health, physical health, overall health (PedsQL), and care management)/42 disease-specific PRO instruments; child self-report and parent-proxy measures included

Components identified as essential to successful PRO implementation: Commitment (Identification of a committed clinical team leader and team)‚ Instrument Selection (Selection of an instrument that addresses the identified outcome of interest), Scores (specification of threshold scores that indicate when an intervention is needed), Interventions (identification of clinical interventions to be triggered by threshold scores), Training (training for providers and staff involved in the PRO implementation process—Trained staff ensures continued use), Reliability and Use (Measurement and monitoring for PRO reliability and use—Too many questions is too burdensome)

Godoy (2021); USA; Qualitative Research [57]

To describe barriers to, and facilitators of, universal MH screening implementation, the perceived impact of such screening, impressions of a screening-focused QI Learning Collaborative, and lessons learned

N = 11; Primary Care; 3 moths-18 years; mental health

ASQ:SE/SDQ/PHQ-9; child and parent proxy completion; administered by PCCs in well-child visits

Provider capacities/characteristics that facilitated implementation included factors such as PCC knowledge, understanding, attitudes, and confidence related to identifying and addressing mental health (MH) issues. Patient capacities/characteristics that acted as barriers to successful screening and referral included language, literacy, and parent motivation, previous child and family experiences of mental health issues, and the family’s ability to navigate resources

Harding (2019); UK; Qualitative [76]

To elicit views on the domains/items to include in a PCOM, implementation challenges and requirements for use in routine care by practitioners

N = 36; Tertiary Hospital/Community; paediatric unspecified; Life Limiting Conditions/Life Threatening Illness

N/A

Measures should be able to be used by CYP with a wide range of cognitive abilities and also demonstrate proxy validity and responsiveness. Measures should be child friendly, engaging and brief and applicable throughout the child’s life and into end-of-life phases of illness. There should be appropriate mechanism developed to allow results to be shared across multiple agencies and services involved in care but there must be clarity on who would have access to data with clear guidelines on storage, access and use of the data. The perception of the tool is key to implementation: it must not be seen as a ‘test’ of the quality of informal parent care provision nor raise unrealistic expectations of care. The purpose of outcome measurement should be clearly aligned to improving person-centred care. professionals should be trained in how to interpret results at an individual and population level

Hardy (2015); UK; Non-randomised experimental study [77]

To introduce a screening service that would provide earlier identification of the social and emotional difficulties of CiC aged under 5 years in a 12-month period and to gain a greater understanding of the level and type of needs among this population

N = 63; Secondary Care/Community; 6 weeks-65 months; social/emotional wellbeing

SEGC/ASQ-SE/PCIS; parent/carer proxy completion only; administered by community paediatrician at initial health assessment home visit for children in care

Independent reviewing officers, social workers, and foster carers provided feedback on the screen out of 5 (5 being a great deal). In terms of the screen adding understanding of the child’s needs the mean scores were 4, 3.7, and 3.5 respectively. In relation to the screen contributing to care planning the mean score from independent reviewing officers was 4.3 and the mean score for social workers was 3.3. The implementation of the screening increased the proportion of children identified with difficulties significantly

Haverman (2014); The Netherlands; Case report [83]

To provide a thorough description of the implementation of ePROs in daily paediatric clinical practice in line with the methodological recommendations and decisions described in the International Society for Quality-of-Life Research guidelines

N = n/a; multiple settings; 0–18 years; 17 paediatric patient groups including: rheumatology, nephrology, coagulation disorders, HIV, cystic fibrosis, and oncology

KLIK eProfile (TAPQOL/ PedsQL Generic Core Scale); CYP and parent-proxy report; parents/patients are invited to register on the website, before the consultation with the paediatrician, Patients without home Internet access or who do not complete the questionnaires prior are given the opportunity to complete the questionnaires at the clinic

The biggest issue was clinicians forgetting to discuss results with patients. Clinicians felt the KILK adds value and patients, and parents recognise this and that graphs representing score changes overtime were beneficial. The web security and patient privacy of the platform facilitated its used as did tools to support scoring and training for clinicians

Haverman (2013); The Netherlands; Cohort Study [84]

To investigate the effectiveness of ePROs in clinical paediatric rheumatology care

N = 176; Tertiary Hospital; 0–18 years; juvenile idiopathic arthritis

KLIK (TAPQOL/ PedsQL Generic Core Scale/ PedsQL parent report/ The Dutch CHAQ/ 100-mm VAS for the evaluation of pain and overall well-being/ DISABKIDS arthritis module; CYP and parents were provided login details for the KLIK website to self-complete the PROMs ahead of clinic appointments

Overall, the evaluation of the use of the ePROs was positive. In 88% (first intervention) and 80% (second intervention) of the consultations, the parents regarded the ePROfile as useful. They regarded the ePROfile as helpful for themselves and as helpful for their child. In 94% of the first intervention consultations and in 91% of the second intervention consultations parents felt the PROfile reflected their child’s HRQoL adequately. The Paediatric Rheumatologists reported that they were more satisfied with the provided care during the consultations in the domains of emotional support for parents and child, meeting the needs of the child. CYP reported that discussing the ePROfile with the clinician was ‘normal’

Herbert (2019); USA; Mixed Methods [58]

To evaluate the acceptability and usefulness of brief mental health screening during paediatric subspecialty clinic visits

N = 523; Tertiary Hospital; 5–17 years; mental health in allergy/immunology/haematology

PROMIS profile; child and parent proxy completion; administered on iPads in clinic waiting rooms before appointments

Most of the professional interviews (n = 67; 87%) indicated that medical providers referred to the PROMIS Patient Summary to guide at least part of the visit. Most parents agreed or strongly agreed that it was easy to fill out on the iPad, the length was appropriate, and the questions asked were appropriate for the care of their child. However, some parent noted difficulty completing the PROMIS Paediatric Profile in the waiting room and/or concern that it was not used by their clinician

Hinds (2013); USA; Cross Sectional [59]

To assess the ability of children and adolescents with cancer to complete the PROMIS paediatric measures electronically and to establish preliminary validity estimates of the PROMIS paediatric measures in paediatric oncology

N = 200; Tertiary Hospitals; 9–17 years; cancer

Eight PROMIS paediatric measures (Physical Functioning, Mobility, Physical Functioning, Upper Extremity, Pain Interference, Fatigue, Depression, Anxiety, Peer Relationships, and Anger); child completion; electronically administered using laptops or computers available in the clinical settings

There was generally little difficulty with completion, however there were three cases where parents had some difficulty manipulating the computer screens and two cases of children under 11 years old where one took an unusually long time to complete the measure and the other required assistance to stay focused

Jonsdottir (2020); Iceland; Mixed Methods [107]

To study the implementation of an early detection program for ASD within well-childcare in PHCs and to evaluate its initial outcome

N = 1596; Primary Care; 30 months; Autism

M-CHAT-R/F; parent proxy completion only; Administered during well-child visits

All the nurses expressed having positive experiences and expressed a positive attitude towards the adoption of universal screening for Autism, and there was an interest in doing so at both the 18- and 30-month well- child visits. Although there was also an interest in training, there were concerns as to the extra time this would require

Kazak (2017); USA; Qualitative [60]

To identify how multidisciplinary paediatric oncology health-care providers perceive psychosocial risk screening to identify factors in uptake and implementation

N = 15; Tertiary Hospital; children unspecified; cancer

PAT; CYP and parent-proxy completion; initial screening using the PAT was conducted between 24 h after diagnosis to up to 1 month later, usually administered on a tablet computer

Successful implementation requires planning including determining who should administer the screener as well as how results can be effectively communicated to key health-care team members. professionals must recognise, understand, and appreciate the importance of screeners (’buy-in’ or ‘ownership’). Accessible training resources to facilitate the use of the PAT, including guidance on scoring, interpretation, and clinical care were seen as valuable next steps that could further enable broader implementation. Engaging families in a process of screening, characterized by relationships of trust, was identified as an important requisite as well as its acceptability to families. Time to complete screening, from the perspective of both the family and staff, is a challenge. Concern was expressed about Survey fatigue, and the logistics of families completing a screener in a busy clinic, as well as language and literacy barriers where families would require additional staff support to complete the screen

Kazak (2019); USA; Non-randomised experimental study [61]

To facilitate implementation of the PAT in English and Spanish in oncology in three states in the South-eastern United States

N = 16; Tertiary Hospital; paediatric unspecified; Cancer/Stem Cell and Organ Transplant/ Histiocytosis/ Sickle Cell Disease/Cardiac Disease

PAT; child and parent proxy completion; measure was administered by a clinician and then reviewed by a social worker or psychologist

Most programs (78%) indicated that the PAT was very or extremely useful in their clinical work. With respect to using the PAT results to guide intervention, more than half of the programs indicated that they always used it to guide intervention and most used it at least some of the time to do so. Participants were very positive about potential benefits of using the PAT. Both before and after the workshop professionals felt that PAT implementation would facilitate communication among staff and with families. They also all indicated that PAT would facilitate clinical care, deliver care efficiently, and promote positive medical and psychosocial outcomes. Open text comments show how participants viewed the PAT as an asset to their clinical work. The most common expected challenges were related to reimbursement, technical issues, and integrating the results in the EHR. At post-implementation challenges were reported related to support from the medical team and champions

Kendall (2019); UK; Qualitative [78]

To evaluate the acceptability and understanding of the ASQ-3 in England by health professionals and parents

N = 125; Community Services; 2–2.5 years; Healthy/Developmental Delays

ASQ-3; parent proxy completion only; administered to parent by community professionals

Parents and HPs were equally positive about the opportunity to work in partnership in relation to the child's development. In general, most parents and HPs accepted the ASQ-3 as a measure that provides useful information about a child's development at 2 years. However, some parents indicated that they had been worried before or during completion of the ASQ-3 and perceived it as a’test’ and worried that their child might ‘fail’; regularly ticking ‘not yet’ caused most anxiety. The language was also considered very American. There was wide variation, both across and within sites, in how the ASQ-3 was being used in part due to how it was introduced conceptually to HPs (at management level)

Kip (2022); Malawi; Qualitative [108]

To assess barriers and facilitators to implementing HEADSS for adolescents with HIV attending Teen Club Program in four selected health facilities in Malawi

N = 20; Community Services; adolescents unspecified; HIV/AIDS

HEADSS; CYP completion only; administered by professionals in Teen Club clinics

The participants acknowledged that this psychosocial screening tool can guide better systematic counselling, build better client provider relationship, improve quality of care, and be good for holistic psychological assessment of ALHIV. Many of the participants further indicated that the HEADSS screening could fit into their existing work practice and was described as not very complex to implement. The majority had some reservations because the tool was not culturally specific to Malawi context, which was viewed as a barrier for the implementation. Participants also indicated that the screening tool was in English and could not easily translate the contents into the local language. Some of the participants believed that ALHIV will be suspicious that the HCPs are policing on them when they ask them questions. HCPs might be willing to implement HEADSS screening if they were given some incentives in a form of cash

Krishna (2019); USA; Quality Improvement [62]

To implement computerized diagnostic and history assessments for outpatient mental health visits in the ambulatory psychiatric clinic of a large paediatric health system

N = 1489; Secondary Care; paediatric unspecified; psychiatric

Diagnostic screener/ Computerized assessments; administered to patients on iPads before appointments

Provider response was highly positive. Average provider response on the 5-point Likert scale was 4.36 (5 = strongly agree 3 = neutral). 67% of the providers believed that the data changed how they approached their diagnostic visits. 78% of providers indicated that the assessment improved the efficiency of their visits. On average, they reported that 16 min of time has been saved of a 90-min assessment. Providers overwhelmingly reported that this extra time was utilized for improved patient care. Providers rated it as easy to use, with useful and relevant questions. A core team and champions team served a support function, passing on their experience with the implementation process to other clinics, providers, and staff

Kwok (2022); Canada; Qualitative [93]

To investigate commonly experienced facilitators of and barriers to implementing the FOCUS in clinical practice from the perspectives of SLPs

N = 37; Secondary Care; 0–5 years; Communication Disorders

FOCUS; parent proxy report only; delivered by Speech-Language Pathologists in the PSL programme (mandated by programme)

Barriers included: integrating FOCUS into already busy sessions, incompatible schedule between FOCUS and clinic visits, workload burden due to complex and redundant steps, FOCUS data did not impact clinical practice, FOCUS data were not used to make system-level decisions, FOCUS data were not valid, damaging rapport with family, forgetting to administer the FOCUS, not feeling confident in answering specific questions, uncertain how to interpret and explain items on the FOCUS, not knowing administrative schedule, FOCUS contradicted professional roles, negative emotions, lack of optimism. Domains where more facilitators than barriers to implementation were identified included optimism, intentions, behavioural regulation. Facilitating factors included: creating a reminder system, keeping resources available in session, adjusting as needed, personnel support, technology support, internalised intention, FOCUS as a tool to gather parents' perspectives, not an 'onerous' task, developing skills, associating FOCUS with an assessment, awareness of importance

Lalloo (2014); Canada; Qualitative [94]

To assess the clinical feasibility of the PQ from the perspective of adolescents with chronic pain and members of their interdisciplinary paediatric health team in the context of a follow-up chronic pain clinic appointment

N = 25; Tertiary Hospital; 12–18 years; Chronic Pain

PQ; CYP completion only; CYP completed the PQ and clinic comparator tool on a laptop computer in a quiet study rom in clinic ahead of their scheduled appointment

Adolescents described the PQ as useful for initiating and promoting clear communication with the health team and providing a more complete understanding of pain experience. 4 adolescents (24%) referred to a sense of ownership and control over creating their own pain record and described using it as easy or very easy. Given a choice of methods for communicating their pain in the clinic, 15 (88%) adolescents preferred the PQ. Professionals also noted the ease of interpreting the adolescent-generated PQ pain records. The transferability of the PQ software across different web platforms was seen as beneficial. Ensuring patients privacy as they completed the tool was a challenge; technology requirements (Internet-connected computer; printer if hard copies are desired), adjusting workflow to accommodate patient completion and team interpretation of the PQ were also potential barriers to implementation and use

Lynch-Jordan (2010); USA; Quality Improvement [63]

To illustrate the process of using improvement science methodology to put into practice an efficient, clinically useful measurement tool to evaluate patient functional status before, during, and at the conclusion of treatment among children and adolescents referred for outpatient, behavioural. pain management

N = 107; Tertiary hospital; M = 15.2 years; Chronic Pain

FDI; CYP completion; psychologists administered the FDI to every patient referred for pain in the session or it was self-administered in the waiting room

The biggest barrier to regular FDI administration was clinician forgetfulness (96.5%) related to time constraints (i.e., patients arriving late) and excessive paperwork (i.e., during the initial evaluation). Graphical representation of data in charts were viewed by psychologists as logical, compelling markers of patient progress. The addition of this component to the treatment session was not viewed as prohibitive in terms of efficiency or effort. Psychologists denied any adverse reactions by patients. Psychologists provided qualitative feedback that described the FDI as easy to administer and score; non-disruptive to the flow of the treatment session; and valuable in providing a quick measure of functional status to the psychologist and patient. It served both as an indicator of patient progress but also reportedly enabled psychologists to clearly identify areas of deficits (e.g., physical activity and sleep) that could be targeted for specific intervention in treatment. Psychologists’ observations were that patients became encouraged if their scores/run charts visibly dropped (indicating less functional disability), and they frequently remembered their scores from previous sessions without clinician prompting

Mansour (2020); USA; Quality Improvement [64]

To implement a standardised questionnaire to improve screening for depression by 60% in adolescents from 12 to 17 years of age

N = 109; Primary Care; 12–17 years; depression

PHQ-A; CYP self-report only; administered by professionals in session

By the end of the study period, screening rate had increased from 0 to 70%. Lack of resident education causing poor adherence was identified as a barrier. Sending emails to residents with instructions on how to use the depression screening questionnaire increased screening rate from 0 to 31%. Microsoft PowerPoint was used to create educational lectures regarding depression screening, and the need for implementing the PHQ-A was high-lighted. Literature supporting the use of a standardised tool was reviewed during the presentation—screening rate increased from 31 to 81%. Language barriers with patients was identified as a challenge to adherence. Highlighting patients between 12 and 17 years of age on the printed patient schedule for each resident daily was a visual reminder for adolescents to be screened for depression led to the screening rate increasing. Residents were encouraged to continue using the screening tool even after the conclusion of the QI study

McCarthy (2016); Australia; Mixed Methods [103]

To investigate the feasibility of administering the PAT2.0 psychosocial screener to parents following their child’s cancer diagnosis and to examine oncology health-care professionals (HCPs) perspectives on the of the PAT2.0 screening tool in their clinical setting

N = 162; 0–18 years; Tertiary Hospital; Cancer/cancer-related haematological disease

PAT2.0; parent proxy completion only; Clinical social workers approach families following diagnosis to complete the PAT2.0 and return it directly to their social worker or in a sealed envelope to outpatient or inpatient administrative staff

Eighty-five percent (n = 87) of parents reported they had no concerns about the PAT2.0 being stored in their child’s medical chart. The overall return response rate of 83.25% indicates that the PAT2.0 was acceptable to the majority of families. The majority of parents reported that the PAT2.0 was easy (82.0%) or somewhat easy (18.3%) to complete. Of the HCPs individually interviewed, 53.06% felt the communication summary provided them with new information and 69.64% reported this was useful in providing clinical services to families (i.e., raised issues that would otherwise not be detected, opened communication about the family’s concerns). However, only a minority (22.81%) of HCPs felt that the information received from the PAT2.0 impacted their clinical decision-making. Social workers also reported several perceived barriers to administering the PAT2.0, including delay in children receiving a cancer diagnosis, delay in families returning the completed PAT2.0, and additional workload. In particular, social workers commonly reported having to follow up with families sometimes several times to obtain the PAT2.0

Meryk (2021); Austria; Cohort Study [104]

To evaluate the feasibility and value of daily patient-reported outcome measures (PROMs) by children receiving chemotherapy for cancer

N = 12; Tertiary Hospital; 6–18 years; Cancer

ePROtect patient portal (multiple symptoms PROMS including. pain, appetite loss/nausea, physical functioning, sleep quality); CYP completion only; Patients were instructed to complete the symptom monitoring once per day during the study period on a mobile device or tablet and, patients were reminded during inpatient treatment to complete the questionnaire each day before the morning round

Children rated the PROMs as useful and easy to use and gave a high rating for satisfaction

Orava (2019); Canada; Mixed Methods [95]

To evaluate the implementation supports and adoption of the Chronic Pain Assessment Toolbox for Children with Disabilities (the Toolbox) to enhance pain screening and assessment practices within a paediatric rehabilitation and complex continuing care hospital

N = 224; Tertiary Hospital; children unspecified; Chronic pain/Cerebral palsy

Body diagram/CALI/ PPP/PPIS; CYP and parent proxy completion; routine screening for pain on admission or during a visit with a professional, followed by an assessment using a systematic approach and validated tools

Implementation of the Toolbox led to an increased in the number of CYP who had a conversation about pain (presence/absence of pain) recorded. Advantages of the tools included being able to gather information about a pain history; objectively measuring the site, source, and ways in which chronic pain interfered with daily living activities; and helping clients, families and HCPs describe different instances of pain (such as during cramping, tightness, and dystonia); as well as promoting joined up working, and communication/information sharing. professionals reported Toolbox was thorough and helpful, particularly clinical practice points and tools coring resources, visual prompts also helped to remind professionals to use it. Challenges reported included: difficulty using PROMs, paper copies not being available, and finding time to complete in busy clinic

Purbeck (2020); USA; Mixed Methods [65]

To examine the acceptability, appropriateness, adoptability, and feasibility of an MBC effort, the CIMI, across several child-serving settings (e.g., community mental health centre, residential treatment facility)

N = 70; Secondary Care/Community; children unspecified; trauma/mental health

CIMI; CYP and parent proxy; used by clinic staff in consultations with children and families

Characteristics that facilitated implementation included the support of external change agents (implementation purveyors who were helpful in providing advice and sharing resources), formally appointed internal implementation leaders (supported staff becoming more comfortable using assessment battery), and CIMI champions (who kept staff on task and was supportive). For some, the assessment battery felt too long or intense. The availability of measures was also challenging with some noting that not all versions were available electronically and had to be done on paper with results manually entered. Complexity and design quality and packaging (e.g., structure and layout of the technology) made implementation challenging for some sites there were accessibility issues within sites whereby not all staff were able to access the CIMI. Generally, CIMI was considered acceptable, appropriate and feasible although staff did not fully feel that the technology enhanced their work

Robertson (2020); UK; Mixed Methods [79]

To investigate ophthalmic clinicians’ prior experience of, and future training needs for, using PROMs and their views about the barriers and enablers to future implementation in paediatric ophthalmology practice

N = 45; Tertiary hospital; children unspecified; ophthalmology

VQoL_CYP/FVQ_CYP; child self-report

Only 22.2% had experience of using PROMs. PROMs were considered useful for detecting problems and concerns clinical assessments may not identify; making decisions; monitoring condition and response to treatment; and improve communication and joint decision making with patients and families. However, clinicians lacked confidence in explaining what scores mean or how they would be used

Santana (2015); The Netherlands; Non-randomised experimental study [85]

To describe the development and implementation of three programs for training clinicians to effectively use PRO data in routine practice

N = n/a; Tertiary hospital; children unspecified; population unspecified

KLIK PROMs; CYP and parent proxy reporting; administered electronically through KLIK portal

1-h group training with a theoretical and practical parts, including video material & a training manual was created to enhance effective use of the PROfile in clinical practice. Professionals sometimes forget to discuss the ePROfile. Professionals were positive about the use of KLIK and recognize the value added. They felt that parents and patients do not mind completing the questionnaires and benefit from using KLIK. The motivation of the multidisciplinary team was an important factor for this success, plus targeted initial support by the KLIK team. Patients were given direct feedback after they completed the questionnaires, helping them to understand the goal and motivating them to complete the questionnaires again

Schepers (2017a); The Netherlands; Cohort Study [87]

To determine the feasibility of the use of the ePAT in Dutch clinical practice approximately 1-month post-diagnosis, to evaluate the usability of the PAT ePROfile, and to determine possible differences in feasibility and usability for families with a universal versus an elevated (targeted or a clinical) risk score

N = 75; Tertiary Hospital; 0–18 years; Cancer

ePAT/PAT 2.0; parent-proxy completion only; families registered online at the KLIK website, one parent per family completed the ePAT preferably within 1-month post-diagnosis

The following reasons were indicated by families that did not want to participate: too much effort; too many other things on our mind; no desire to complete extra questionnaires; we do not want to commit to anything extra than just the standard treatment. Reasons declared by the psychosocial team for not reviewing or discussing the PAT ePROfile results were as follows: logistics (i.e., too busy and/or no team meeting), psychosocial team members did not think it was necessary to discuss results because of a universal PAT score, no additional information derived from the PAT that had to be shared with the team, and that the family was not known to anyone from the psychosocial team

Schepers (2017b); The Netherlands; Mixed Methods [86]

To determine the of the KLIK method as implemented in outpatient paediatric cancer care and to study health care professional (HCP) reported barriers and facilitators for implementation

N = 233; Tertiary Hospital; 0–18 years; Cancer

KLIK PROM (generic HRQoL questionnaires/ PedsQL 3.0 Acute Cancer Module); CYP and parent proxy completion; administered electronically on the KLIK online system

The reported facilitating factors were as follows: HRQoL problems were efficiently detected using KLIK method (87%), social support from KLIK coordinators (83%), normative beliefs around expectations of use (96%), simplicity of the KLIK method (86%), having sufficient knowledge to use it as intended (86%), 100% considered the opinions of patients/parents regarding the use of KLIK PROM as important and this was a motivating factor. HCP reported barriers were: social support (25% did not receive support), descriptive norms (25% indicated only a minority of their colleges actually used the KLIK method), 39% did not consider the opinions of the management team important thus reducing motivation to comply. Organizational (hospital) barriers were as follows: lack of formal ratification by managers, no replacement when staff left, lack of time available, unsettled organisation/organisational changes, lack of feedback to professionals about the implementation progress. Another perceived barrier to the intervention (KLIK method) was compatibility (24% of HCPs indicated that the KLIK method did not fit well with current routines)

Schreiber (2015); USA; Case Report [66]

To describe the use of a KT program to improve the knowledge and frequency of use of standardized outcome measures by paediatric physical therapists practicing in an outpatient clinic

N = 17; Secondary Care; 0–18 years; conditions unspecified

GMFM-66/GMFM- 88; GMFCS and motor curves/PEDI TUG/TUDS/ 30-s walk test; administered to patients/families by physical therapists in clinic

The knowledge Translation programme increased professionals’ knowledge of test selection, administration, interpretation, and sharing of results

Schulte (2019); Canada; Non-randomised experimental study [96]

To implement standardized screening tools in a busy clinic setting; to assess the feasibility of administering these tools based on recruitment rates and acceptability; and to evaluate the psychometric criteria of these tools (i.e., construct validity, test–retest reliability and discriminative validity) at each stage of the cancer continuum (on treatment, off treatment)

N = 190; Tertiary Hospital; 1–18 years; cancer

DT/PATrev/PedsQL generic core 4.0; CYP and parent proxy completion; on-treatment patients were approached by their social workers or a research assistant during in-patient stays or at clinic appointments/off-treatment patients were approached by research assistants during clinic appointments

The acceptability of the DT was rated significantly better by families off treatment compared to families who were on treatment

Sharples (2017); UK; Qualitative [80]

To explore clinician attitudes to outcome measures and, in particular, the facilitators and barriers to implementing outcome measures

N = 9; Secondary Care; Children and young people unspecified; Mental health

Unspecified outcome measures; CYP completed; clinician administered in sessions

Barriers included resources (in terms of information systems, administrative processes and time within sessions), clinicians and service users struggling to use measures when they were not seen as appropriate, and the structured content of measures as resulting in them, at times, being misinterpreted by service users, or causing distress and disengagement. Facilitating factors included training in and practical experience of using outcome measures with ongoing support needed to sustain use, recommendations to support use in the future at service level, and the structured content of measures was also described as being useful to service users to help frame discussions of presenting problems and treatment planning

Silver (2017); USA; Qualitative [67]

To describe the dynamic processes that support and/or hinder the implementation of early childhood screening by analysing prospective, longitudinal, qualitative data from a grant-funded project that integrated early childhood screening within two urban paediatric primary care clinics serving high-risk families

N = 63; Primary Care; 0–8 years; mental health

CWS (ASQ-3, ASQ-SE; ECSA, PEDS, PSC); parent-proxy only; CWS-eligible children and families were approached upon clinic entry and completed CWS tools and summary forms were filed in the child’s medical record

Both Pediatrics and Implementation stakeholders mentioned improved coordination over time, because of increased communication, more positive interactions and. relationships, and integrating the screenings into the EMR (at one site) to support collaboration. Being able to scan in and add screen to EMR was helpful but there were barriers to integrating. Being able to bill for screens also to supported sustainability. However, there were concerns about family’s perceptions of being asked to complete CWS (e.g., stigma), and the reading level required to complete it being too high. Staff also struggled with having enough time to complete it, score it, and feed it back to families in visits, clinicians found it difficult to interpret results. Low physician buy-in of CWS and their ownership over the screening process was a barrier that remained even with increased positive perceptions of the screening overtime, raising concerns about sustainability of the intervention. Limited resources, in terms of space, computers and staff was a barrier. Funding was also noted as a necessity for sustainability

Stinson (2012); North America; Mixed Methods [110]

To develop and test the feasibility of SUPER-KIDZ

N = 204; Tertiary Hospital; 4–18 years; pain/rheumatology

SUPER-KIDZ; CYP and parent-proxy completion; measures were administered by research assistants prior to rheumatology appointments on paper, and electronically on handheld devices and on laptop computers

There was no difference in the overall preferred medium for youth or parents. There was however a significant difference in the preferred medium for children (p = 0.008) with 65% (n = 13) of parents reported their child preferred using the computer because the computer was the simplest and fun to use. The computer or paper assessments were perceived to be quicker than the handheld device by the majority of CYP (87%; n = 67; p = 0.001) and parents (91%; n = 21; p = 0.019). The majority of parents (91%; n = 21) also found the computer or paper to be easier to understand than the handheld device (p = 0.032) and 78% (n = 60) of CYP found the computer or paper more useful for describing pain than the hand-held device (p = 0.027). The majority of physicians (60%; n = 9) would recommend the computer-generated summary

Townsend (2020); USA; Non-randomised experimental study [68]

To present initial validity data on three web-based computerized versions of the Kiddie Schedule for Affective Disorders and Schizophrenia (KSADS-COMP)

N = 158; Secondary Care; 9–17 years; Affective Disorders/ Schizophrenia

KSADS-COMP self-administered (child and parent)/KSADS-COMP clinician administered/ PHQ-9/ BCMS/GAD-7/SWAN/ Primary Care PTSD Screen; CYP and parent proxy-completion; half were randomly assigned to complete the adolescent and parent self-administered KSADS-COMP, and half were randomly assigned to complete the clinician-administered KSADS-COMP, those who met criteria for MDD, a bipolar diagnosis, ADHD, ODD or CD, PTSD, a substance use disorder, or no lifetime diagnoses during the first assessment were invited for a second study visit to complete the alternate version of the KSADS-COMP within three weeks

The following statements were rated as agree or strongly agree by CYP and parents respectively: I was comfortable answering questions on the computer (91%, 99%), The questions were clearly stated and understandable (85%, 94%), The computer did a good job asking me about my feelings (90%, 96%), I felt less embarrassed answering these questions on the computer than I would have with a clinician (71%, 54%), I found the computer interview to be a helpful process to go through (89%, 96%). Both CYP and parents expressed high satisfaction with the technical features of the self-administered KSADS-COMP, and of the user-friendliness of the technology. 85% of CYP stated they were willing to be interviewed by computer again when asked if they would prefer to be asked these types of questions by computer or clinician after completing the self-administered KSADS-COMP, 54% said computer, 11% said clinician, and 35% had no preference. Among the parents, 99% (n = 132) said they would be willing to be interviewed again by computer. In terms of interview preference, 28% of the parents stated they preferred the computer, 22% stated they preferred a clinician, and 50% had no preference

Uzark (2013); USA; Non-randomised experimental study [69]

To evaluate the clinical utility of health related QOL assessment in a paediatric cardiology outpatient clinic

N = 179; Tertiary Hospital; 9–18 years; Cardiology

PedsQL 4.0 Generic Core Scales; CYP completion only; completed at a routine scheduled cardiology follow-up visit while waiting to see the cardiologist

Professionals felt information from QoL assessment was important and had a high impact on their practice including identifying concerns outside if physical functioning and influencing patient management decisions. The PedsQL was easy to use and understand and did not interfere with routine practice

van Bragt (2016); The Netherlands; Randomised Control Trial [88]

To assess the content of an intervention which integrates individual goals in outpatient clinic asthma management (based on self-management principles) of children 6–12 years of age

N = 42; Tertiary Hospital; 6–12 years; Asthma

Pelican; CYP completion only; CYP complete the questionnaire online before appointments with the asthma nurse

Nurses thought that children were often unable to distinguish between current and recent problems and often relied on old memories, especially when asthma-related problems had had a substantial emotional impact. Nurses also mentioned that some parents thought their child was unable to oversee his/her asthma-related problems and to provide reliable answers without parental help

Discussion: Children evaluated the Pelican instrument as easy to complete and fun to do

van der Merwe (2019); South Africa; Mixed Methods [102]

To describe the clinical utility and perceived value of a CCW-administered mHealth screening programme for early detection of developmental delays in vulnerable populations. Clinical utilities were examined in terms of referral rate, test duration and early detection

N = 148; Community; 1–38 months; HIV/AIDS/ developmental delay

PEDS/PEDS:DM; parent proxy completion only; administered by CCWs in caregivers preferred language electronically

CCWs [n = 10] reported the benefits of the mHealth tools included early referral, the positive impact on the community and the importance of developmental screening and surveillance. CCWs also reported increased knowledge regarding typical development and the importance of developmental surveillance. The perceived value of the screening programme was highlighted including aspects such as time-efficiency, convenience, practicality and overall enjoyable experience. 100% of community care works strongly agreed that the mhealth tool and screening had a positive impact on the community. 90% strongly agreed that the App instructions were clear; 100% agreed or strongly agreed that they had adequate training; 80% agreed or strongly agreed that it was both easy to administer and easy to administer in homes in the community; 100% agreed or strongly agreed that it was quick to administer, that caregivers understood the questions, and that it provided accurate results; and 90% agreed or strongly agreed that caregivers agreed with final results. No one responded with the disagree or strongly disagree options

van Muilekom (2021); The Netherlands; Mixed Methods (Questionnaire results not included as age range of CYP was 12–19 years) [89, 90]

To provide insight into patients’ and parents’ perspective on the use of the KLIK PROM portal in order to optimize its implementation in paediatric clinical practice

N = 25; Tertiary Hospital; 1–18 years; Juvenile idiopathic arthritis/Cystic Fibrosis/Cancer/Gastrointestinal diseases/Home parenteral nutrition/ Haemophilia/other chronic conditions

KLIK PROM; CYP and parent-proxy completion; PROMs on the profile are completed by CYP/parents before appointments and then discussed with clinician during appointment

Parents generally rated KLIK as positive in helping to prepare for consultations and provided insight into patients’ functioning, improving conversation content and adding value and efficiency to consultations. They felt that the KLIK was able to detect problems at an early stage and support was then able to be provided in a timely manner. Parents also liked the website layout, the security of the KLIK website is and how their data remains anonymous. Some patients and parents rated the content of PROMs positively, as they covered all important topics and are clear, but others felt that the questions in the PROMs are difficult to understand, repetitive and not relevant for every patient. Some patients rated completion time as good, but others felt it was time-consuming; there was ambiguity in responses about ease of use of KLIK and how often clinicians discussed results

Weidler (2021); USA; Qualitative [70]

To identify facilitators and barriers to implementing standardized outcome measurement in cleft care

N = 32; Tertiary Hospital; children unspecified; Cleft Lip and Palate

N/A

Providers and staff viewed standardized outcome measurement as the gold standard and believed that care should be delivered according to those set standards. Providers also viewed standardized outcome measurement as being the preferred method/approach to collecting the clinical information needed to guide treatment decisions. Participants viewed standardized outcome measurement as a complex intervention that would require overcoming numerous existing and potential barriers to be successfully implemented

Weiner (2016); UK; Non-randomised experimental study [81]

To explore the extent to which young people and their family members engaged with the screening of psychological well-being and whether young people and their family report concerns during their follow-up appointments

N = 21; Tertiary Hospital; 9–18 years; cancer

SDQ/SMFQ/EuroQoL/DT/EQ-VAS; parent proxy and CYP completion; questionnaires were completed after their clinic appointment with an assistant psychologist

CYP and parents rated the Questionnaires as interesting, relevant, and helpful and most found the follow-up appointments beneficial

Westergren (2021); Norway; Mixed Methods [109]

To examine how the core implementation components were adjusted for the “Starting Right” health service innovation, the success with tool adoption among staff in child and school health centres, and the success with tool acceptance among parents responding to health assessments

N = 208; Primary Care; 2–6 years; healthy/development delay

SDQ/KIDSCREEN-27; parent-proxy report only; administered online

Professionals raised concerns around whether hard to reach families with the most need would respond to the questionnaires and the language barrier for those who would not be able to complete the measures in Norwegian. Professionals noted it was time consuming to register families on the online system, to distribute questionnaires and schedule appointments but the tool was considered useful to create a dialogue with families in appointments and parents were positive. There were concerns from professionals around data protection. Professionals reported that integration between the electronic patient record and the online tool would have enhanced more seamless and effective working processes and the systems not being joined up was a barrier to implementation

Windham (2014); USA; non-randomised experimental study [71]

To describe screening implementation challenges and results by demographic and instrument characteristics to aid in assessing effectiveness in the real-world setting of a low-income, Hispanic population and for interpreting surveillance findings

N = 1760; Primary Care; 16–30 months; Autism

M-CHAT/ASQ; parent-proxy only; staff administered screens to parents in the waiting room

Professionals noted they did not have time to screen all their patients and that the ASQ was too long, so screens were often only used when Autism or other developmental concerns were already suspected. M-CHAT was endorsed by 85% of professionals for Autism screening as part of standard practice but that it was not as useful for Spanish speakers

Yamada (2017); Canada; Cross sectional [97]

To assess how organizational context moderates the effect of research use and pain outcomes in hospitalized children

N = 1743; Tertiary Hospital; children unspecified; acute procedural pain

PIPP/FLACC/FPS-R/NRS; CYP and parent-proxy report; administered by professionals in hospital

Research evidence increased valid pain assessment use, as did strong leadership/implementation leads, and the organisational culture

Pain assessment was greater in units with higher organizational context scores

Yu (2021); Canada; Quality Improvement [98]

to determine the equivalence of the paper and e-forms of CHAQ and QoML questionnaires and, identify potential benefits and barriers associated with using an e-form to capture PROMs, and gather feedback on user experience

N = 196; Tertiary Hospital; paediatric unspecified; rheumatology

Caregivers CHAQ/ QoML; administered both on paper and electronically; parent proxy and patient completion

Barriers to completing the electronic versions of the measures included poor Wi-Fi connectivity and the limited number of devices available, the need to disinfect devices after use and the potential theft of devices. The cost per patient for each paper measure was $1.23. The overall cost for the electronic versions was $500, which included the two electronic tablets used to administer the measures. Cost savings would be realized after 407 uses which would take approximately four weeks in the clinic