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Routine use of patient-reported experience and outcome measures for children and young people: a scoping review

Systematic Reviews volume 13, Article number: 293 (2024) Cite this article

Abstract

Background

Patient-reported outcome measures (PROMs) measure people’s views of their health status whereas patient-reported experience measures (PREMs) are questionnaires measuring perceptions of their experience whilst receiving healthcare. PROMs/PREMs have the potential to enable children and young people (CYP) to be involved in decisions about their care and improve the quality of their care but it is not clear how often PROMs/PREMs are incorporated as part of standard care of CYP in the hospital setting. The aims of this scoping review were to understand the extent of the literature and map available evidence on the use, benefits, barriers and facilitators of PROMs/PREMs as part of standard care and treatment of CYP in hospitals.

Methods

The Joanna Briggs Institute review process was used to map existing evidence on the use of PROMs/PREMs in routine care of CYP in different hospital settings worldwide. Key search terms were developed and Ovid (Emcare, Embase MEDLINE, APA PsychInfo), Scopus and Web of Science were searched. Data were analysed using frequency counts and basic content analysis for thematic mapping according to the research questions. We undertook an initial search in February 2021 and updated this in April 2023.

Results

The search yielded 68,004 studies, 388 were eligible for full text review and 172 met the inclusion criteria. PROMs were more commonly used than PREMs in routine care of CYP in hospitals; these were mostly collected using electronic collection and concentrated in specific specialities, settings, contexts and countries. The findings mapped the use of PROMs/PREMs, including how data are applied in clinical practice and used for service development, but this was not consistently reported. There are specific challenges in the implementation of PROMs/PREMs in routine care of CYP that need to be considered.

Conclusion

PROMs/PREMs have the potential to improve care for CYP in hospital settings contributing to different aspects of care. A better understanding of their use, how results can be applied in clinical practice and contribute to service development will enable meaningful employment. The popularity of electronically collected and captured PROMS/PREMs warrants further investigation to enable their meaningful use in routine care of CYP.

Systematic review registration

Not pre-registered.

Peer Review reports

Introduction

Children and young people (CYP) want to be heard and involved in decisions about their health and care; however, they sometimes feel that they lack the understanding and confidence to contribute or do not feel that they are allowed to [1]. Patient-reported measures, such as patient-reported outcome measures (PROMs) or patient-reported experience measures (PREMs), are standardised measures that have the potential to involve CYP directly (including those as young as 5 years old) [2] and/or their parents/carers in decisions about their care [3]. PROMs are reports of symptoms, functioning, health perceptions and/or health-related quality of life (QoL) [4, 5], whereas PREMs are reports of people’s experiences of the process of care that may cover themes including communication with staff, care received, shared decision-making and consideration of hospital or ward environment [5, 6]. In pediatric care, PROMs/PREMs can enhance the quality of care by improving communication and health-related QoL, identify unmet needs and facilitate shared decision-making [3, 7,8,9,10]. A previous review highlighted the potential benefits of integrating PROMs as part of standard care [7]; however, it did not investigate the impact after implementation. Another review explored the types of PREMs used as part of pediatric care [8]; however, this review focused on high-income countries and the use of validated measures only. Additionally, from both reviews, it is unclear whether the intended benefits of using PROMs/PREMs are realised once implemented, where they are being implemented, and whether there are differences in how PROMs and PREMSs are used as part of routine pediatric care.

The use of PROMs/PREMs in routine care does present opportunities to improve care for CYP but may also present distinct challenges that may influence the implementation of routine collection. CYP of varying ages, developmental and cognitive abilities may not reliably complete PROMs/PREMs as intended [2, 11]. Furthermore, the care of CYP typically involves families/caregivers which introduces ethical concerns in relation to privacy and consent [9]. However, the extent to which these challenges affect the routine use of PROMs/PREMs in the pediatric hospital setting is unclear. Therefore, it is also possible that there are specific barriers and facilitators to the use of PROMs/PREMs in pediatric care.

The aims of our scoping review were to understand the extent of the literature and map the available evidence on the use, benefits and barriers and facilitators of PROMs/PREMs as part of standard care and treatment of CYP in hospital. A scoping review was chosen because our research questions were explorative in nature and it allowed us to objectively summarise the breadth of the literature (including different sources) and identify knowledge gaps within this field [12].

Review questions

  1. 1.

    How are PROMs/PREMs used to assess the experience and outcomes of CYP’s care and treatment in hospital?

  2. 2.

    How are PROMs/PREMs data applied in clinical practice?

  3. 3.

    How do PROMs/PREMs contribute to service development?

  4. 4.

    Are there any patient groups for whom PROMs/PREMs are not an integral part of routine care provision?

  5. 5.

    What is the evidence on the availability and utilisation of reports generated from CYP and proxies?

  6. 6.

    What are the barriers and facilitators to the utilisation of PROMs/PREMs in routine hospital care for CYP?

Methods

This scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) methodology for scoping reviews [13] building on Arksey and O’Malley [14] and Levac et al. [15]. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Review (PRISMA-ScR) [16] checklist was used to guide the reporting. A review protocol was not published.

Eligibility criteria

The eligibility criteria were established in relation to the research questions and using the population, concept and context framework (PCC). The full inclusion and exclusion criteria can be found in Additional File 1.

Participants

Studies were included if the data were from CYP, or their proxies (e.g. parents, carers or guardians). CYP are defined for this purpose as from birth (including neonatal) to 25 years old [17] in children’s or adolescent and young adult (AYA) settings. Studies including clinicians working with children and young people or their proxies were also included.

Concept

PROMs measure patients’ views of their health status; PREMs are questionnaires measuring the patients’ perceptions of their experience whilst receiving care [5]. Included studies described routine collection of PROMs/PREM data.

Context

CYP treated by professionals based in pediatric hospital settings were included, including virtual clinics. This included AYA settings where data from those <25 years could be separated from those >25 years of age. Patients not treated in children’s or AYA settings and those whose treatment was not led by hospital-based services or who were seen in other clinical settings; e.g., primary care were excluded.

Type of sources

Only studies in English language were included. We included descriptive observational study designs including cohort studies, case series, individual case reports and descriptive cross-sectional studies, and qualitative studies. A pragmatic decision was made to include studies published since 2008 as this marked the start of routine collection of PROMs in the UK [18]. Both published and unpublished literature (e.g. conference proceedings) were considered for inclusion.

Data primarily collected as part of a research study (e.g. randomised controlled trials), rather than routine clinical care, were excluded. Systematic reviews were also excluded. Text and opinion pieces and theses were reviewed but if they did not include explicit details about PROM/PREM use in a relevant setting, were a commentary on another article or comprised a series of published articles (e.g. a thesis), they were also excluded. For theses and opinion pieces cited, literature was considered for inclusion.

Search strategy and information sources

An initial search was performed on 21 February 2021 and included sources published from 1 November 2008. To capture the most recent evidence at the time, an updated search was performed for the period 22 February 2021 to 4 April 2023. The databases Embase, EMcare, MEDLINE, PsycINFO, CINAHL Plus (EBSCOhost), Scopus and Web of Science were searched. The final search terms including an example of a search strategy are included in Additional File 2.

Study selection and charting the data

Following the searches, all identified citations were collated and uploaded into Covidence (Veritas Health Innovation, Melbourne, Australia) and duplicates removed. Titles and abstracts were screened independently by two reviewers for assessment against the inclusion criteria for the review. Potentially relevant sources were retrieved in full. The full text of selected citations was assessed in detail against the inclusion criteria by two or more independent reviewers. Reasons for exclusion of sources of evidence at full text that did not meet the inclusion criteria were recorded. Disagreements between reviewers were resolved through discussion, or with an additional reviewer/s.

Data extraction

Data were extracted from the selected sources by one reviewer using a data extraction tool developed by the review team, and a minimum of 10% was reviewed by a second reviewer. The extraction form (Additional File 3) is based on Peters et al. [13].

Data analysis

Data were analysed using frequency counts for different demographic characteristics of included studies and basic qualitative content analysis in relation to the research questions. An inductive approach was taken as recommended by Pollock et al. [19]. Frequency counts were undertaken in R (code available on GitHub) or Excel. Basic qualitative content analysis was undertaken in Mural, with categorization available in Mural.

Results

The PRISMA ScR flow diagram summarises the process of study selection (Fig. 1). The search identified 68,004 references, and after the removal of duplicate titles and abstracts (n=37,901), 30,103 sources were screened. A total of 387 were eligible for full text review and 172 met criteria for inclusion in the final review. A total of 147 (85%) sources included data on PROM use only [20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105,106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123,124,125,126,127,128,129,130,131,132,133,134,135,136,137,138,139,140,141,142,143,144,145,146,147,148,149,150,151,152,153,154,155,156,157,158,159,160,161,162,163,164,165]; 11 (6%) included data on PREM use only [166,167,168,169,170,171,172,173,174,175,176] and 14 (8%) included data on both PROM and PREM use [9, 177,178,179,180,181,182,183,184,185,186,187,188,189]. Details about the study (country, type of data collection, inpatient/outpatient setting and participants) are provided in Table 1. A detailed summary of details of the included studies can be found in Additional File 4, and full characteristics including measures used can be found in Table 2.

Fig. 1
figure 1

PRISMA ScR flow diagram

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Table 1 Summary characteristics of included studies
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Table 2 Characteristics of all include studies
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Most studies were conducted in one of four countries (USA, The Netherlands, UK and Canada), with a further 15 countries undertaking between one to five studies each. Amongst studies that collected PROMs/PREMs, 32% (n=56) did not report the type of collection, but the majority reported some form of electronic data capture (n= 80, 47%), such as the KLIK PROM portal, an online portal for PROMs, developed in the Netherlands (n=22, 13%). Figure 2 shows the increase in the number of publications per year regarding PROMs/PREMs, and also changes in method of collection over time.

Fig. 2
figure 2

Number of new publications over time by type of collection

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Most sources did not state whether the hospital setting was inpatient and/or outpatient (n=80, 47%); however, amongst those that did, outpatient was the most common setting (n=73, 42%). A diverse range of individual specialties were represented, of which 28 different types were reported; oncology (n=17; 10%), endocrinology (n=12; 7%) and mental health (n=11; 6%) were the most frequently reported single specialities. A total of 120 (70%) reports described use of PREMs and/or PROMs in a single centre, 34 (20%) were multicentre and 13 (7%) either did not report the centre details or described data collection as part of standard care but then contributing to a registry or network (n=5, 3%).

Participants included CYP, parent/carer proxies and health professionals with numbers of participants varying from a single case study to 19,289 children. Participant groups and numbers were not always reported or were unclear.

Which PROMs/PREMs were being used?

Some studies collected generic PROMs whereas other collected disease specific, symptom reporting, or psychosocial screening PROMs. The Pediatric Quality of Life Inventory (PedsQL) (n=42) was the most commonly collected and a range of non-validated measures of health-related quality of life were also used (n=14).

There were many different types of PREMs reported and only two studies used the same type of PREM (National Health Service patient survey). Five studies used PREMs that were either developed for a specific clinic, or department, or to evaluate a quality improvement initiative.

How are PROMs/PREMs used to assess the experience and outcomes of CYP’s care and treatment in hospital?

Table 3 shows the summary of the themes in relation to all of the research questions. Full characteristics of included studies in relation to how PROMs/PREMs are used can be found in Additional File 5. The most common uses of PROMs/PREMs were for screening/monitoring to track patient outcomes and satisfaction longitudinally and to identify or detect problems/issues early [29, 34,35,36, 57,58,59, 62, 66, 70, 74, 76,77,78, 83, 86, 88,89,90, 94, 98, 109, 115, 133, 139, 141, 149, 156, 158, 161, 164, 166, 168, 174, 181, 184]. Some studies reported using PROMs/PREMs to assess changes in outcomes and experiences often associated with specific types of treatment or care plan [35, 39, 50, 69, 106, 109, 131, 137, 159, 168, 171,172,173, 177, 185, 187] whereas others used the results to provide further insight into QoL, functioning and/or symptoms that could be related to disease activity or outcomes [21, 24, 29, 49, 58, 85, 91, 116, 127, 140, 153]. PROM results were sometimes used to compare across other patient/population groups [32, 35, 51, 67, 74, 132, 133, 152]. PROMs/PREMs were also used in clinical encounters [9, 43, 61, 109, 141, 146, 150, 153, 155, 190] and as part of quality improvement initiatives [9, 37, 40, 96, 111, 172, 173, 175, 176] or to provide real-time advice or PROM/PREM results that could be incorporated within electronic health records [61, 134, 160]. This is particularly relevant for how the data are applied in clinical practice.

Table 3 Summary of themes in relation to the research questions by study type
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How are PROM/PREM data applied in clinical practice?

PROM/PREM results can be directly applied in clinical practice to help guide or involve patients and their parents/carers in the conversation with clinicians and add information besides clinical judgement [9, 24, 31, 45, 46, 53, 56, 60, 68, 71, 76, 91, 99, 151, 153, 160, 165, 180, 183]. PROM/PREM results were also used to help tailor treatment plans, care pathways and referral to other services with patients’ goals [20, 24, 29, 33, 34, 48, 59, 61, 66,67,68, 73, 74, 76, 86, 89,90,91,92, 96, 98, 101, 104, 106, 131, 134, 141, 143, 145, 155, 156, 160, 161, 163, 182, 183, 186,187,188]. The results were also used to determine the frequency of contact with services, for example, telePRO use to determine timing of follow-up instead of fixed appointments or contact [67]. How data are applied in clinical practice was influenced by access to data. Some PROMs/PREMs were only reviewed during or before clinical encounters [47, 60, 63, 76, 79, 80, 104, 122, 124, 126, 134, 141, 142, 150, 152,153,154, 156, 157, 160, 163, 180, 181]. Others were analysed automatically, which triggered certain actions [21, 74, 86, 90, 91, 161, 188]—for example, if a threshold (a certain score) was reached, an automatic communication was sent to relevant clinicians (such as the primary clinician or location based social worker [86]. Storing PROM data in electronic health records to facilitate access and the availability of results was also described [21, 59, 74, 86, 186]. This was not restricted to those with electronic collection; for example Hacker et al. (2017) collected PROMs through pen and paper but scores and recommended interventions were documented in electronic health records [59]. PREM data were integral for quality improvement initiatives [172, 174, 185]. The full characteristics of the included studies can be found in Additional File 6.

How do PROMs/PREMs contribute to service development?

Experiences or outcomes can be used as part of service planning, to decide on resource allocation [9]. Implementation of PROMs was seen to reduce use of services without compromising care [128]. Results from PROMs/PREMs collected in routine care can be used to identify changing needs of individual patients or patient cohorts [165], or as part of wider research initiatives for observational or translational research [165, 181], or to share best practices across health systems [102]. Overall, results are embedded as part of quality improvement projects or service audits, especially the use of PREMs where there is the ability to compare performance between services [9, 34, 96, 111, 150, 172]. The full description of the included studies can be found in Additional File 7.

Are there any patient groups for whom PROMs/PREMs are not an integral part of routine care provision?

Many studies included in this review encompass the implementation stages, where the collection was part of standard clinical care, hence their inclusion. Furthermore, the common ‘bottom-up’ approach to implementation meant that routine collection was often for specific services [26, 43, 53, 63, 75, 134, 136, 154, 155], clinicians [108, 125] or areas [169]. However, in addition, there were also measure-specific restrictions for specific patient groups. Language was the most common restriction; for example, if patients did not speak or understand the majority language, they were not able to participate in the PROM/PREM data collection [23, 54, 86, 107, 126, 164, 176, 185, 187, 188, 190]. There were also other criteria for inclusion/exclusion which could reduce representation of the patient cohort, such as not including CYP if orthopaedic surgery was on the dominant hand or only including CYP with severe skin disease [25, 29, 40, 75, 78, 164], cognitive and/or developmental abilities in the normal range [34, 54, 77, 86, 131, 185] or those in a particular age group [54, 75, 185]. The full description of the included studies can be found in Additional File 8.

What is the evidence on the availability and utilisation of reports generated from CYP and proxies?

Thirty-seven studies reported both proxy and self-reports [21, 25, 27, 33, 36, 45, 46, 54, 60, 63, 65, 72, 75, 80, 81, 84, 88, 98, 107, 115, 121, 125, 139, 142, 143, 145, 149, 161, 170, 180, 182, 186]. There were also some situations where either proxy reports [45, 70, 73, 79, 80, 95, 98, 112, 113, 160, 161, 163, 167, 169, 175,176,177, 188, 189] or patient reports only were standard [86, 117, 136]. Other studies only used proxies in certain situations, such as for younger children (typically under 7 years) [46, 79, 80, 124, 125, 149, 154, 170, 180, 181]. Parents and clinicians also sometimes helped children complete the measures [76, 88].

Having both proxy and self-reports can result in discrepancies in reporting [50, 51, 54, 55, 75, 83, 106, 110]. Parents sometimes felt that they needed to correct the children’s responses [110], and often clinicians viewed the proxy reports as adding information to the measures that could sometimes be more accurate than that from children’s reports [22, 48, 50, 75, 110]. However, this can create complexity in consultations if clinicians are unclear on which reports to use [33] and when to disclose results [150], especially if the child sees the measures as sharing secret information with the clinician [76]. The full description of the included studies can be found in Additional File 9.

What are the barriers and facilitators to the routine utilisation of PROMs/PREMs in hospital care for CYP?

Figure 3 shows the symmetry between barriers and facilitators in relation to clinicians, the implementation process, organisational processes and patients/proxies. Key barriers relevant to pediatric care included privacy concerns, specifically patients ‘providing false information if their parents could access their […] score’ [190] or concerns of how to ‘discuss PROs in the presence of parents/child’ [150]. McCabe et al. [9] further suggested having ‘separate portals for parents and caregiver [….] to give the clinician the ability to control which pieces of information are available to parents and children’. Furthermore, children might sometimes need help from their parents to complete the measures, which could influence their scores [23, 33, 110]. Having both proxy and child measures was a key facilitator [9, 33].

Fig. 3
figure 3

Barriers and facilitators to routine use of PROMs and PREMs in the care of CYP

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Discussion

Key findings

This review sought to understand the use and benefits of PROMs/PREMs collected within routine care of CYP in hospitals. Overall, PROMs are more commonly used than PREMs. These measures are generally collected using electronic methods and there are specific specialties, settings, context and countries that are leading the efforts to embed them in their routine collection and use. Results of PROMs/PREMs can be applied in clinical practice and/or service development, but whether and how this is done are not consistently reported. The use of PROMs/PREMs gives CYP, and their families/carers, the opportunity to be involved in their care and to help tailor treatment/care decisions based on their perspectives. However, specific challenges remain in the use of PROMs/PREMs for CYP that need to be considered in their routine implementation.

The use of PROMs/PREMs with CYP introduces complexities due to children’s varying age, cognitive and developmental abilities and the addition of proxy measures. This review demonstrates that both self and proxy measures tend to be collected and that children sometimes need help completing their own measures, but children and young people have their own individual perspectives which should be heard. This can generate specific barriers such as privacy issues of sharing and influencing the results between children, young people and their parents/carers and practical issues such as how to resolve discrepancies between reports. In addition, there is the relative weight that clinicians may give to CYP and proxy reports from adult caregivers. Careful consideration is needed when choosing the most appropriate measures and access to results and further support may be needed to understand how to use and discuss or weight self and proxy reports as part of standard care for CYP [9]. As such, it is important to explore context-specific factors within any organisation as this could influence the potential barriers encountered and effective facilitators needed to address these [10].

To our knowledge, this is the first review to explore the use of both PROMs and PREMs. We demonstrate similarities in how PROMs/PREMs are used but, ultimately, they are distinct in how they contribute to different aspects of routine care. PROMs can be directly applied to clinical practice to help guide and add to the consultation or tailor care, whereas PREMs are integral for quality improvement initiatives and facilitate comparisons between services. The synchronous use of PROMs/PREMs can facilitate a comprehensive capture of the patient perspective [3, 5]. However, this review also found that the routine use of PREMs is far less commonly reported than the routine use of PROMs in the literature, the reasons for which are beyond the scope of this review. This is consistent with the existing literature in pediatric care [191,192,193] and may reflect the lack of understanding of what PREMs are, their value, and how they can facilitate quality improvement initiatives [193]. Additionally, views on implementing and valuing PREMs in pediatric care warrant further exploration.

The findings of this review mirror findings in recent reviews showing that PROMs in pediatric care settings can be used to identify CYP’s needs, facilitate better communication and lead to improvements in the quality of care [7, 10]. We now extend this by demonstrating the evolving landscape of the routine implementation in the pediatric care setting. There is growing interest and progress in the implementation of routine collection of PROMs but this scoping review highlights that this is skewed towards single centres, specific specialties, settings and countries. Consequently, the current bottom-up approach to implementation suggests that more progress is needed to make routine collection and use of PROMs more accessible across different contexts, specialties, settings and countries. This also includes understanding how to make the results interoperable across different health systems. These steps may be important in healthcare providers and policymakers recognising the potential role and value of using PROMs and PREMs in routine care, to support scalability and wider implementation. Furthermore, it was noticeable that representation from low- and middle-income countries was poor.

Previous evidence recommends the use of electronic measures for CYP [2]; this is reflected in the findings of this review whereby PROMs/PREMs were predominantly collected through electronic measures. This is mostly led by specific systems such as the KLIK PROM portal; however, such standalone systems can be expensive and resource intensive to implement. Therefore, it is unclear whether a widespread adoption of electronic collection can be sustained across different settings and health systems. Additionally, the scoping review found that ‘pen and paper’ or mixed methods of data collection can also act as a facilitator, which raises the question of suitability of preference for electronic collection only. Similarly, the review also identified incorporation of PROMs/PREMs data into electronic health records as a facilitator and that this aids the availability and use of results. The integration of PROMs/PREMs into electronic health records is not always guaranteed for electronic collection and can also happen for those collected via pen and paper. Consequently, this suggests the need for further understanding of what is meant by electronic PROMs/PREMs and whether electronic collection and capture of results are viewed as interchangeable. Furthermore, the popularity of electronic collection and capture warrants further investigation on how to capitalise on these technological advancements to facilitate meaningful use of PROMs/PREMs in routine practice.

Strengths and limitations

By exploring PROMs/PREMs together in pediatric hospital care, we offer insights on the extent to which outcomes and experiences of CYP and their families/carers are collected and utilised to inform their care. This scoping review was explorative in nature; it included an array of sources including conference proceedings from a variety of conditions, settings, contexts and countries and allowed us to extract information from all sections of the publication [19], which meant that this review was able to capture an extensive view of the existing literature. Furthermore, this review represents searches from two adjacent time periods, thereby demonstrating the changing nature of this field, whilst also facilitating further analyses of how terms have changed over time [194].

As this is a scoping review, the quality of evidence was not evaluated; therefore, we cannot comment on the risk of bias. Furthermore, it is unclear to what extent potential bias can arise from the high number of publications from certain groups, hospitals or countries. Similarly, due to the nature of routine collection, some studies reported different aspects of the same cohort; therefore, this may overrepresent routine collection. In addition, this scoping review did not include studies not published in the English language and it was sometimes difficult to conclude whether PROMs/PREMs were routinely collected and how they were used in routine practice. These may contribute to an underrepresentation of the available evidence. Furthermore, it is highly likely that there is an underreporting of routine use of PROMs/PREMs, particularly the latter, and results may not always be published. More comprehensive and systematic reporting is needed on the routine collection and use of PROMs/PREMs in the treatment and care of CYP to fully understand and leverage the potential benefits. Finally, we did not register the protocol on a public database, but we do appreciate that this is now best practice for scoping reviews, as well as systematic review protocols.

Conclusion

PROM/PREM data have the potential to improve the quality of care of children and young people in hospitals but introduce specific challenges that need to be considered in their implementation as part of standard care. PROMs/PREMs contribute to different aspects of patient care but the potential for PREMs to improve patient care may be underutilised. More progress has been made on the routine use of PROMs; however, this is concentrated within specific specialties, settings, contexts and countries. Better understanding is needed of the use of PROMs/PREMs and of how findings are being applied to routine care, particularly with electronic collection and capture, to enable meaningful use.

Data availability

Majority of the data extracted from the studies and analysed in the review are included in this published article (Table 2) and its additional files (Additional files 5–9). The categorisation of themes and data extract is available on Mural (https://app.mural.co/embed/e708d9c9-3f9d-4de5-8606-7e11e7ed86de) and the codes used for the categorisation of the frequency counts are available on GitHub (https://github.com/HFAnalyticsLab/PROMs_PREMs_in_CYPs_Scoping_Review).

Abbreviations

PROMs:

Patient-reported outcome measures

PREMs:

Patient reported experience measures

CYP:

Children and young people

QoL:

Quality of life

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Acknowledgements

All research at Great Ormond Street Hospital NHS Foundation Trust and UCL GOS Institute of Child Health is supported by the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre (NIHR GOSH BRC). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health, or UKRI.

Funding

There was no funding specifically for this work. GD is supported by a personal fellowship from UKRI (MR/T041285/1). AA is funded on a CIRP PhD studentship by Great Ormond Street Charity (Award VS0618).

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Author notes

  1. Gwyneth Davies and Jo Wray contributed equally as co-senior authors.

Authors and Affiliations

  1. UCL Great Ormond Street Institute of Child Health, London, UK

    Anne Alarilla & Gwyneth Davies

  2. The Health Foundation, 8 Salisbury Square, London, UK

    Anne Alarilla

  3. Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID), Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

    Katharine Terrell, Paula Kelly, Faith Gibson, Debbie Sell & Jo Wray

  4. Great Ormond Street Institute of Child Health Library, University College London, London, UK

    Heather Chesters

  5. School of Health Sciences, University of Surrey, Guildford, Surrey, UK

    Faith Gibson

  6. DRIVE, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

    Geralyn Oldham

  7. Respiratory Medicine, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK

    Gwyneth Davies

  8. Institute of Cardiovascular Science, University College London, London, UK

    Jo Wray

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  1. Anne Alarilla
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Contributions

AA ran the second search, updated the data extraction from the first search, completed the data extraction and reviews from the second search, analysed and interpreted the data and drafted the initial manuscript. KT ran the and completed the data extraction from the first search and critically reviewed the manuscript. FG, DS and GO conceptualised and designed the review, performed reviews from the first search and critically review and revised the manuscript. HC developed the search strategy for the review and ran the searches in the individual databases. GD performed reviews for the 2nd search and critically reviewed and revised the initial draft of the review. JW conceptualised and designed the review, performed reviews in the first and second searchers and critically reviewed and revised the initial draft of the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all the aspects of the work.

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Correspondence to Anne Alarilla.

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Competing interests

GD reports speaker honoraria from Vertex Pharmaceuticals and Chiesi Ltd, and institutional fees for clinical trial leadership and advisory board roles, outside the submitted work.

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Alarilla, A., Terrell, K., Kelly, P. et al. Routine use of patient-reported experience and outcome measures for children and young people: a scoping review. Syst Rev 13, 293 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s13643-024-02706-x

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Keywords

Systematic Reviews

ISSN: 2046-4053