PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT): A protocol for a consensus study

Heather Rostron; Simon Pini; Adam Galloway; Anthony Gilbert; Polly Livermore; Anthony Redmond

doi:10.3310/nihropenres.14191.1

Home Browse PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT):...

ALL Metrics

-

Views

6

Downloads

Get PDF

Get XML

Export

▬

✚

Study Protocol

PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT): A protocol for a consensus study

[version 1; peer review: awaiting peer review]

Heather Rostron^1,2, Simon Pini³, Adam Galloway¹, Anthony Gilbert⁴, Polly Livermore^5,6, Anthony Redmond^1,7

Heather Rostron^1,2, Simon Pini³, [...] Adam Galloway¹, Anthony Gilbert⁴, Polly Livermore^5,6, Anthony Redmond^1,7

PUBLISHED 14 Jan 2026

Author details Author details

¹ Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, England, LS7 4SA, UK
² Children's Clinical Research Team, Leeds Teaching Hospitals NHS Trust, Leeds, England, LS1 3EX, UK
³ Psychological and Social Medicine, University of Leeds School of Healthcare, Leeds, England, LS1 3EX, UK
⁴ Therapies Department, Royal National Orthopaedic Hospital, London, England, HA7 4LP, UK
⁵ NIHR Great Ormond Street Hospital Biomedical Research Centre, London, England, WC1N 3JH, UK
⁶ Infection, Immunity & Inflammation Department, University College London, London, England, WC1E 6BT, UK
⁷ NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals NHS Trust, Leeds, Please Select, LS7 4SA, UK

Heather Rostron
Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Writing – Original Draft Preparation, Writing – Review & Editing

Simon Pini
Roles: Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

Adam Galloway
Roles: Methodology, Writing – Review & Editing

Anthony Gilbert
Roles: Methodology, Supervision, Writing – Review & Editing

Polly Livermore
Roles: Methodology, Supervision, Writing – Review & Editing

Anthony Redmond
Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS AWAITING PEER REVIEW

Abstract

Background

Children and young people (CYP) cared for in rheumatology services are largely managed in the outpatient environment. Conditions such as Juvenile Idiopathic Arthritis are usually chronic and complex in nature, necessitating input from a range of multidisciplinary healthcare professionals. Technology Enabled Care (TEC) practices in paediatric rheumatology can be varied and may have the potential to better support families and clinical teams in managing rheumatological conditions. CYP people are known to be able users of technology but evidence-driven guidance to maximise the potential for technology enabled care remains limited. Drawing on previous PhD work package findings, the aim of this current project is to develop guidance through a modified Delphi consensus exercise.

Methods

Findings from previous PhD work packages will be synthesised into a list of statements around the concept of technology enabled care. Following assembly of a Study Advisory Group, stakeholders will be approached to undertake two online modified Delphi technique rounds. For Round 1, stakeholders will indicate their level of perceived importance using a Likert scale, for each statement. Statements not reaching consensus will be voted on again during a second Round. Stakeholders will then vote, in order of priority, on all statements reaching consensus. Descriptive quantitative analyses will be used to describe minimal stakeholder credentials and to demonstrate >75% consensus. The top 10-20 statements will be included in the final guidance.

Discussion

All project risks and benefits have been considered, minimised, and presented as part of the Research Ethics Committee (REC) application to the School of Medicine at the University of Leeds (REC project reference 2550). Project dissemination is planned for traditional routes through appropriate academic journals and paediatric specialty-specific conferences. Further dissemination will take place following ongoing collaboration with Patient and Public representatives.

Trial registration

Not applicable

Plain Language Summary

Background

Children and young people (CYP) with problems such as arthritis, are mainly cared for from the outpatient department. These CYP often need to be cared for by the multidisciplinary team (MDT) Eg. nurses, doctors, and physiotherapists etc. Technology Enabled Care (TEC) with these CYP can be very different. TEC may have the potential to better support CYP, parents and the MDT to manage CYP’s care better. CYP are known to be able to use technology well, but research to best guide TEC is limited. This is the final part of a PhD. It describes the use of previous results to ask stakeholders (CYP, parents, MDT healthcare professionals, and others), to vote on which results are the most important to be included in future TEC guidance.

Methods

Previous PhD findings will be brought together into a list of TEC statements. A team representing each stakeholder as described above, will come together to agree which statements should be voted on. Next, a larger number of stakeholders will be asked to vote twice against each statement. For the first time, stakeholders will vote on how important each statement is using a number scale. Statements not reaching consensus will be voted on again for a second time. Finally stakeholders will vote on the priority of each statement that has reached consensus. Statistics will describe stakeholders and show the agreed consensus. The top 10-20 statements will make up the final guidance.

Discussion

All project risks and benefits have been considered, minimised, and given the go-ahead by the School of Medicine Research Ethics Committee at the University of Leeds (SoMREC 2550). The project results will be written up in scientific journals and talked about at conferences to share with colleagues. CYP will be asked how they would like the results to be shared.

Keywords

Delphi, consensus, paediatric, paediatric rheumatology, rheumatology, healthcare technologies, technology enabled care, digital

Corresponding author: Heather Rostron

Competing interests: No competing interests were disclosed.

Grant information: This project is funded by the National Institute for Health and Care Research (NIHR) under a doctoral fellowship awarded to Heather Rostron (Grant Reference Number NIHR302999)]. The views expressed are those of the author(s) and not necessarily those of the NIHR, NHS or the Department of Health and Social Care.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright: © 2026 Rostron H et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

How to cite: Rostron H, Pini S, Galloway A et al. PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT): A protocol for a consensus study [version 1; peer review: awaiting peer review]. NIHR Open Res 2026, 6:10 (https://doi.org/10.3310/nihropenres.14191.1) First published: 14 Jan 2026, 6:10 (https://doi.org/10.3310/nihropenres.14191.1) Latest published: 14 Jan 2026, 6:10 (https://doi.org/10.3310/nihropenres.14191.1)

Introduction

Paediatric rheumatology context

Children and young people (CYP) cared for in paediatric rheumatology services often experience inflammatory conditions, with up to two-thirds of these CYP remaining in adult services^1,2. Other CYP experience a range of non-inflammatory musculoskeletal conditions. Consequently, CYP can have varying, chronic, painful symptoms, requiring ongoing outpatient management. Often with no cure, many CYP need long-term management with cytotoxic disease-modifying antirheumatic drugs and multi-disciplinary specialist input. CYP’s management can necessitate long travel distances and lead to reduced school and work attendance. One potential method of increasing service efficiencies and decreasing the burden for families within paediatric rheumatology may be to provide more services using technology enabled care (TEC).

Effects of Covid-19 on Technology Enabled Care (TEC)

Although some clinical teams were providing TEC Eg. remote services prior to COVID-19³, the pandemic forced a steep rise in using TEC for remote management^4,5. National Health Service (NHS) Trusts in the UK strived to reduce face-to-face appointments to 20%⁶. Furthermore, stipulations within NHS England required healthcare providers to minimise routine visits, resulting in a rapid move to remote management with limited training for safe implementation using TEC⁷. Therefore, there has been considerable variability in TEC to support such rapid changes⁸.

Learning from Covid-19 and continuation of Technology Enabled Care

There is a firm commitment in the UK to drive TEC^9–12. UK national plans are outlined in the NHS Blueprint and built into the NHS Long Term Plan to ensure TEC is provided in a ‘modern way’ to retain what is argued to be valuable adaptations to NHS services for some patients during COVID-19. A change in UK government in 2024 continued to highlight the need for change in the NHS, by launching a ‘rallying cry’ for members of the public and NHS staff to share thoughts about the future of the NHS. This exercise was underpinned by three big shifts, of which ‘analogue to digital’ was one¹³, and was incorporated into the 10-year Health Plan for England¹⁴. Furthermore, an independent investigation of the NHS found that while there is great potential for TEC to transform NHS services, there is much more work to do to realise its full potential¹³. As highlighted by the NHS Federated Data Platform, there has been minimal change over the last two decades, specifically with CYP and how their care is co-managed with parents¹⁵. Looking further afield, there is a drive to lead, retain and streamline healthcare technology innovations across Europe¹⁶ and to work together globally¹⁷.

Potential for Technology Enabled Care in child health

CYP are known to be avid, proficient users of all things technology-related, seen by the increased use of smartphone technologies¹⁸. Examples of TEC in action may include wearable technologies, e-patient reported outcome questionnaires, web-based tools for peer support, or the use of various online applications for provision of virtual clinics and medication reminders¹⁹. With these considerations in mind, it would therefore seem logical that TEC should be used routinely to support CYP, by empowering them to use their technological skills to develop self-management skills and to support their care decisions²⁰. For the purposes of this study, Technology Enabled Care is used as a collective term and is defined here by Norwegian colleagues:

“Telecare, telehealth, telemedicine, mobile (m)-, digital- and electronic (e) health services²¹.”

There has been some empirical work published describing the changing landscape of TEC with CYP in cardiology²², those with complex needs²³, and palliative care²⁴. Focusing on paediatric rheumatology, one survey found face-to-face consults more acceptable to parents²⁵, with other findings reporting on financial cost-savings for patients but not necessarily for healthcare providers when using TEC for remote services²⁶. Two systematic reviews have been published on the usability and effectiveness of electronic (e)-health²⁷ and mobile (m)-health²⁸ interventions for patients with juvenile idiopathic arthritis; these reviews were limited to studies only reporting on empirical research using quantitative methodologies.

Previous PhD work packages

This protocol paper sets out the process for a consensus study, linked to a wider PhD-related project (PeRFekT study), where the overall focus is on providing evidence-based guidance for TEC in paediatric rheumatology. This present protocol is intended to fulfil the final work package of the wider PhD programme. Previous work packages entailed the following:

• WP1 – a mixed methods systematic review (PROSPERO number: CRD42023443058; published protocol: https://bmjopen.bmj.com/content/14/2/e082515)²⁹.

Aim: To provide a comprehensive understanding and evaluation of the adoption of TEC by patients in paediatric rheumatology services, to establish best practices.

Status: Completed

• WP2 – an e-survey with industry partners.

Aim: To explore innovative technologies being developed for CYP’s healthcare to support TEC across the UK.

Status: Completed

• WP3 – a mixed methods study with rheumatology healthcare professionals, CYP and parents.

Aim: To investigate what Technology Enabled Care practices are taking place and how Technology Enabled Care can be used to support and improve the management of Children and Young People across UK paediatric rheumatology departments.

Status: Analysis almost complete

What this study will bring

This consensus study will bring together all previous work package findings, from which the consensus statements are currently being generated. The project is based upon the results of a large mixed methods systematic review. Although included papers in the review did not provide the opportunity to undertake a full quantitative analysis due to a lack of randomised controlled trials, a full narrative analysis has been performed inclusive of all types of paper. Furthermore, WP2 and 3 provide further robust evidence in generating consensus statements. Rather than relying solely on the literature, patients, parents, healthcare professionals or the lead author, this study will incorporate the views of a wide range of invested stakeholders for consensus input into a guidance framework.

The process to be used will follow similar principles to a recent clinical consensus format³⁰. The current, consensus project aim, is to agree upon, by multi stakeholder consensus, the strongest 10–20 Technology Enabled Care statements for inclusion into the final framework for use as guidance in paediatric rheumatology services.

Normalisation Process Theory (NPT)

This study is the 4th and final PhD work package, and NPT has been used throughout. NPT is a middle-range, evidence-based, consistent framework used to explain implementation factors when considering the late stage of adoption of innovations in healthcare³¹. As part of the wider programme of work the statements will be mapped to NPT.

Methods and analysis

Aim

The current, consensus project aim, is to agree upon, by multi stakeholder consensus, the strongest 10–20 Technology Enabled Care statements for inclusion into the final framework for use as guidance in paediatric rheumatology services.

Study design

The study design takes a consensus-based approach, by undertaking an online modified Delphi study, with various stakeholders.

Setting and sample

Characteristics of participants

Healthcare Professionals:

Healthcare Professionals from the multidisciplinary team in paediatric rheumatology departments (including but not limited to: Clinical Nurse Specialists, Consultants, Registrars, Youth Workers, Research Nurses, Psychologists and Allied Healthcare Professionals).

Families:

CYP aged 11–17 years cared for within acute paediatric rheumatology services and their parents.

Other Stakeholders:

A range of other stakeholders: NHS Commissioners and Business Managers (working within general paediatric or paediatric rheumatology services), charity workers and industry partners (working in the health tech or digital health space).

Previous Delphi studies have reported varying sample sizes from less than 20 and up to 80+^32,33, often based on sparse robust evidence and dependent perhaps upon diversity of participants and the project undertaken³⁴. Due to the lack of standardised approach, no formal sample size has been calculated. Drawing on previous PhD work packages and speaking with participants, as well as available literature, 16 participants from each of the above stakeholder groups (total 64) are anticipated to be recruited to allow for drop out between Rounds and to answer the research question.

Eligibility criteria

Inclusion criteria

Healthcare Professionals:

Multidisciplinary Team staff members who support the care of Children and Young People aged 11 – 17 years of age in paediatric rheumatology services in the UK.

CYP and their parents/guardians:

CYP aged 11 – 17 years inclusive who are cared for (regardless of diagnosis and length of time from diagnosis) in paediatric rheumatology services in the UK.

Other stakeholders:

NHS Commissioners and Business Managers, charity workers and industry partners.

All participants having the ability to read and understand the English language.

Exclusion criteria

There are no specific exclusion criteria, other than not being able to meet the above inclusion criteria.

Recruitment

Healthcare Professionals, CYP, parents/guardians and other stakeholders either taking part in the earlier stages of the PhD project or who have offered contact details to take part in further work, will be invited to take part during previous study interactions with the lead author. HCP participants will also be approached via national paediatric rheumatology professional groups, namely: Clinical Nurse Specialists, Clinical Psychology Network, Trainee Network, Allied Health Professionals Network, and the Barbara Ansell National Network for Adolescent Rheumatology (BANNAR). Recruitment materials will be sent to professionals (Eg. commissioners) to share across their networks.

Social media (X – formerly Twitter, Facebook and LinkedIn) will be used to maximise awareness, with the study link to the Participant Information Sheet and Consent Statement being made available via the study link. CYP in the Patient and Public Involvement group ‘Your Rheum’³⁵ will be approached by the group’s coordinator. Three charities have agreed to share the study on their social media channels +/- approach via official charity emails (Children's Chronic Arthritis Association – CCAA³⁶, National Rheumatoid Arthritis Society – NRAS³⁷, and Lupus UK³⁸).

A purposive sampling approach³⁹ will be used to target a range of participants Eg. in terms of professional background, age of CYP, CYP diagnosis, location and whether participants have taken part in previous PhD work packages (a mixture of both will be targeted). Please see Table 1–Table 4 for the Sampling Frameworks.

Table 1. Sampling Framework for 16 Healthcare Professionals.

Main sampling Category
1. Role: MDT	Doctor	Nurse	Other
2. Gender	Female	Male	Other
3. Centre type	Tertiary	District General Hospital
4. Ethnicity	White	Ethnic minority background
5. Participated in previous PhD work package	Yes	No

Table 2. Sampling Framework for 16 Children and Young People.

Main sampling Category
1. Gender	Female	Male	Other
2. Age	<13 years	14–15 years	16–17 years
3. Travel distance	<10 miles (<1/2 hour)	10–29 miles (1/2 hour – 1 hour)	>30 miles (>1 hour)
4. Ethnicity	White	Ethnic minority background
5. Centre type	Tertiary	District General
6. Exposure to TEC	Undertaken virtual clinic	Not undertaken virtual clinic
7. Participated in previous PhD work package	Yes	No

Table 3. Sampling Framework for 16 Parents.

Main sampling Category
1. Gender	Female	Male	Other
2. Ethnicity	White	Ethnic minority background
3. Participated in previous PhD work package	Yes	No

Table 4. Sampling Framework for 16 ‘other’ Stakeholders.

Main sampling Category
1. Professional background	Business Manager	Healthcare tech industry partner	Commissioner
2. Participated in previous PhD work packages	Yes	No

Consent

All potential participants will first be asked to assess their eligibility within Online Surveys (a web-based platform to distribute electronic questionnaires). Next, study documents will include a participant-specific Participant Information Sheet (PIS) and a Consent Statement (CS) and will be available within Online Surveys for all participants to read. Once the PIS and CS have been read, participants will enter their name and date, indicating their informed, digital consent to take part and providing contact details for the lead author to follow up with them. The lead author’s contact details will be provided within the study documents if any participants would like to discuss the study directly with a member of the research team.

All CYP aged 16 years and over will provide informed consent for themselves following the above method and using separate PIS’s and CS’s. Parents of CYP less than 16 years will provide consent on behalf of their child following the above method and using separate PIS’s and CS’s. As is best practice, CYP less than 16years will also be required to provide assent, or their agreement to take part, again following the above method and using separate PIS’s and CS’s.

If electronic consent +/- assent is difficult for a participant or would result in them being excluded in taking part, then every effort will be made to accommodate individual requirements (Eg. by collecting a wet ink signature via paid postage of the appropriate documents).

All consent discussions, recruitment etc will be carried out according to Good Clinical Practice principles. CYP and parents taking part in the study will be provided with a £20 voucher per completion of each of the online modified Delphi rounds (£40 total) to thank them for their time and providing their perspectives. CYP will also receive a certificate.

The Study Advisory Group and Participant Flow chart are included as Figure number 1.

Figure Number 1. Study advisory group and participant flow chart.

Data collection

Data collection will take place using an online modified Delphi technique⁴⁰. The format of the Delphi Rounds will follow a similar method used recently by the Study Advisory Group’s methodologist, Adam Galloway (AG)³⁰.

Study Advisory Group

A Study advisory group (SAG) has been convened, consisting of the lead author, the academic supervisory team, 2 PPI representatives (1 young person and 1 parent) and an experienced appropriate methodologist (AG). The SAG will meet to organise and streamline all TEC implementation factors and previous PhD work package findings prior to undertaking the consensus exercise. The streamlined statements/factors will be piloted on Online Surveys to check accessibility and formatting.

The SAG will meet again following Round 1 of the online modified Delphi exercise (see below) to discuss the outcomes of Round 1, incorporate any additional comments (by agreement with the SAG), and plan for Round 2.

Subsequent SAG meeting(s) will remain flexible and essentially used for discussion and agreement regarding any outliers or cases of uncertainty.

Study introduction video

All participants will be asked to view a short (10–15 mins) recorded introduction video made by the lead author. The video will introduce all previous related work to date and explain what is expected from participants during the online modified Delphi rounds and prioritisation ratings undertaken via email.

Online modified Delphi rounds

There will be 2 Rounds of online modified Delphi consensus exercises for all recruited and consented participants. Both Rounds will be conducted using Online Surveys. Round 1 is planned to take place during November/December 2025 and Round 2 at the start of 2026.

Round 1 Online modified Delphi consensus exercise

All participants will be asked to undertake an online consensus exercise. All streamlined statements agreed by the SAG will be listed within Online Surveys and participants will indicate their level of perceived importance using a 5-point Likert scale (1=very important – 5=very unimportant. A free text space will be available for each statement to suggest new statements/clarification. All statements reaching >75% level of consensus will be removed prior to Round 2 to reduce the burden on participants during Round 2. The exercise will remain open online for up to a month afterwards for pragmatic reasons, to give more opportunity for participants to complete it on their own.

Round 2 Online modified Delphi consensus exercise

All participants will be sent a summary of the Round 1 results prior to the Round 2 exercise. Only those statements not meeting consensus, plus any new considerations suggested by participants from Round 1, will be included in Round 2. There will be no free text options during Round 2 and the same Likert scale (1–5) will be used again. Otherwise, the exercise will follow the same format as Round 1.

All factors rated as ‘Important’ or ‘Very important’ by at least 75% of all respondents in Round 1 & Round 2 will be included in a prioritisation exercise.

Prioritisation

Ten to twenty statements are planned to be included in the final framework. Regardless of how many statements meet the >75% inclusion threshold, all participants will be asked to complete a prioritisation exercise. The exercise will indicate priority to implement statements into practice, based on importance, level of agreement, and perceived priority. The prioritisation exercise will be completed via email after Round 2. The top 10–20 prioritised statements will be included in the final framework guidance. The timescale for completing the prioritisation exercise is January 2026.

Data analysis

Data analysis

Free text responses offered during Round 1 of the online modified Delphi exercise will be analysed using content analysis⁴¹ and added to the comprehensive list of statements (if agreed by the SAG) either as a new statement in its own right or as a sub-factor within a broader theme.

Quantitative analysis will be used to describe minimal non-identifiable participant details and for Round 1 to report the level of consensus, to remove those factors >75% consensus from the Round 2 exercise. Quantitative analysis will then be used for Round 2 to identify >75% consensus, then all those factors reaching >75% consensus from both Round 1 and Round 2 will be included for the prioritisation exercise, again using quantitative analysis.

Normalisation Process Theory

As alluded to in the introduction, NPT is a sociological theory that can be used flexibly to explain implementation factors when integrating innovative interventions into healthcare settings³¹. It provides a framework as a tool using the domains ‘Coherence (understanding), Cognitive Participation (relational work that builds a community of practice around an intervention), Collective Action (operational work that people need to do to make an intervention successful), and Reflexive Monitoring (appraisal work). NPT also considers the context of implementation and outcomes.

Patient and Public Involvement

Patients and the public have been involved with the PhD at numerous stages, including overall design, data collection, and previous publication²⁹. For this specific sub-project, eligible PPI contributors will be invited to take part as participants in order for their views and opinions to be taken into account when providing guidance on TEC.

Dates of study

Study design and concept April 2024-January 2025; REC approval received April 2025; Participant approaches and consents received from June 2025 (ongoing); Data collection planned from October-February 2025/26; Data analysis planned for February 2026; Dissemination planned for submission March 2026.

Discussion

Strengths and limitations of this study

The range of different participants, inclusive of patients and parents, is viewed as a strength of the study
Consensus statements are based upon comprehensive evidence-based PhD project findings
Involvement of patients and the public throughout the project and earlier PhD findings has increased relevancy of the outcomes
Consensus is limited at the outset to two adapted Delphi rounds to incorporate a pragmatic approach, which may be seen as a study limitation

List of abbreviations

BANNAR: Barbara Ansell National Network for Adolescent Rheumatology

CCAA: Children's Chronic Arthritis Association

CS: Consent Statement

CYP: Children and Young People

PeRFekT: PaEdiatric Rheumatology FramEworK for Technology enabled care

PIS: Participant Information Sheet

PPI: Patient and Public Involvement

NHS: National Health Service

NPT: Normalisation Process Theory

NRAS: National Rheumatoid Arthritis Society

REC: Research Ethics Committee

SAG: Study Advisory Group

TEC: Technology Enabled Care

WP: Work Package

Declarations

Ethics approval and consent to participate

This consensus project has received ethical approval from the University of Leeds (School of Medicine ethical approval number 2550), with full consideration of ethical and safety implications outlined within the REC application. All participants will provide digitally recorded consent to take part. A full outcome report will be produced and published in a leading journal in this field. The review report will also be submitted to the British Society for Rheumatology conference and/or Paediatric Rheumatology European Society conference. Members of Your Rheum and Barbara Ansell National Network for Adolescent Rheumatology (BANNAR) will be invited to share their creative dissemination ideas. This consensus paper and overall PhD results are part of a wider programme of work aiming to create guidelines for implementing future TEC approaches.

Consent for publication

Not applicable.

Data availability

Repository name: Figshare

Persistent Identifier: https://www.doi.org/10.6084/m9.figshare.30862478

Description: The dataset contains all Participant Information Sheets and Consent Statements for the project

Licence: Creative Commons Attribution 4.0 International (CC-BY 4.0)

Acknowledgements

The authors wish to thank all stakeholders for their support of the project, particularly the charities listed under the ‘Recruitment’ section.

Faculty Opinions recommended

References

1. Stringer G: Musculoskeletal conditions. Why is it important? NHS England, 2019; [Accessed 3 May 2020]. Reference Source
2. Selvaag AM, Aulie HA, Lilleby V, et al.: Disease progression into adulthood and predictors of long-term active disease in juvenile idiopathic arthritis. Ann Rheum Dis. 2016; 75(1): 190–195. PubMed Abstract | Publisher Full Text
3. Healy P, McCrone L, Tully R, et al.: Virtual outpatient clinic as an alternative to an actual clinic visit after surgical discharge: a randomised controlled trial. BMJ Qual Saf. 2019; 28(1): 24–31. PubMed Abstract | Publisher Full Text
4. Greenhalgh T, Wherton J, Shaw S, et al.: Video consultations for COVID-19. BMJ. Publishing Group, 2020; 368: m998. PubMed Abstract | Publisher Full Text
5. RCPCH: Digital by default or digital divide? Virtual healthcare consultations with young people 10 – 25 years. RCPCH, 2020; [Accessed 15 Sep 2023]. Reference Source
6. Gilbert AW, Billany JCT, Adam R, et al.: Rapid implementation of virtual clinics due to COVID-19: report and early evaluation of a quality improvement initiative. BMJ Open Qual. 2020; 9(2): e000985. PubMed Abstract | Publisher Full Text | Free Full Text
7. NHS England: Supporting care with remote monitoring. NHS England, 2023; [Accesed 7 Oct 2023]. Reference Source
8. British Medical Association: COVID-19: video consultations and homeworking. BMA, 2020; [Accessed 20 May 2020]. Reference Source
9. NHS England: NHS long term plan. NHS England, 2020; [Accessed 29 Jul 2023]. Reference Source
10. NHS England: Blueprint launched for NHS and social care reform following pandemic. 2021; [Accessed 29 Jul 2023]. Reference Source
11. NHS England: A plan for digital health and social care. Policy Paper, 2022; [Accessed on 30 Aug 2022]. Reference Source
12. NHS England: What good looks like. 2021; [Accessed 26 Jul 2023]. Reference Source
13. NHS England: NHS Federated Data Platform (FDP): digitising and connecting data to transform health and care. 2024; [Accessed 03 Aug 2025]. Reference Source
14. Department of Health and Social Care and NHS England: 10 year Health Plan for England: fit for the future. 2025. Reference Source
15. NHS England: Digital child health transformation programme. 2024; [Accessed 25 Jul 2025]. Reference Source
16. Digitaleurope: A digital health decade: driving innovation in Europe. DigitalEurope, 2022; [Accessed 5 Sep 2023]. Reference Source
17. World Health Organisation: The European Commission and WHO launch landmark Digital health initiative to strengthen global health security. WHO, 2023; [Accessed 1 Oct 2023]. Reference Source
18. Madden M, Lenhart A, Duggan M, et al.: Teens and technology 2013. Pew Internet & American Life Project, 2005. Reference Source
19. Ahern DK, Kreslake JM, Phalen JM: What is eHealth (6): perspectives on the evolution of eHealth research. J Med Internet Res. 2006; 8(1): e4. PubMed Abstract | Publisher Full Text | Free Full Text
20. Catarino M, Charepe Z, Festas C: Promotion of self-management of chronic disease in children and teenagers: scoping review. Healthcare (Basel). 2021; 9(12): 1642. PubMed Abstract | Publisher Full Text | Free Full Text
21. Leonardsen ACL, Hardeland C, Helgesen AK, et al.: Patient experiences with digital health solutions. A systematic review. BMC Health Serv Res. 2020Publisher Full Text
22. Weatherburn G, Dowie R, Mistry H, et al.: An assessment of parental satisfaction with mode of delivery of specialist advice for paediatric cardiology: face-to-face versus videoconference. J Telemed Telecare. 2006; 12 Suppl 1: 57–9. PubMed Abstract | Publisher Full Text
23. Levy S, Henderson L, McAlpine C: Growing up with confidence: using telehealth to support continence self-care deficits amongst young people with complex needs. Inform Prim Care. 2014; 21(3): 113–7. PubMed Abstract | Publisher Full Text
24. Bradford NK, Young J, Armfield NR, et al.: Home telehealth and paediatric palliative care: clinician perceptions of what is stopping us? BMC Palliat Care. 2014; 13(1): 29. PubMed Abstract | Publisher Full Text | Free Full Text
25. Bullock DR, Vehe RK, Zhang L, et al.: Telemedicine and other care models in pediatric rheumatology: an exploratory study of parents’ perceptions of barriers to care and care preferences. Pediatr Rheumatol Online J. 2017; 15(1): 55. PubMed Abstract | Publisher Full Text | Free Full Text
26. Kessler EA, Sherman AK, Becker ML: Decreasing patient cost and travel time through pediatric rheumatology telemedicine visits. Pediatr Rheumatol Online J. 2016; 14(1): 54. PubMed Abstract | Publisher Full Text | Free Full Text
27. Butler S, Sculley D, Santos DS, et al.: Usability of eHealth and mobile health interventions by young people living with Juvenile Idiopathic Arthritis: systematic review. JMIR Pediatr Parent. 2020; 3(2): e15833. PubMed Abstract | Publisher Full Text | Free Full Text
28. Butler S, Sculley D, Santos D, et al.: Effectiveness of eHealth and mHealth interventions supporting Children and Young People living with Juvenile Idiopathic Arthritis: systematic review and meta-analysis. J Med Internet Res. 2022; 24(2): e30457. PubMed Abstract | Publisher Full Text | Free Full Text
29. Rostron H, Wright JM, Gilbert AW, et al.: Adoption of Technology Enabled Care to support the management of children and teenagers in rheumatology services: a protocol for a mixed-methods systematic review. BMJ Open. 2024; 14(2): e082515. PubMed Abstract | Publisher Full Text | Free Full Text
30. Galloway AM, Keene DJ, Anderson A, et al.: Clinical consensus recommendations for the non-surgical treatment of children with Perthes’ disease in the UK. Bone Joint J. 2024; 106-B(5): 501–507. PubMed Abstract | Publisher Full Text
31. May C, Finch T: Implementing, embedding, and integrating practices: an outline of normalization process theory. Sociology. 2009; 43(3): 535–554. Publisher Full Text
32. Niederberger M, Spranger J: Delphi technique in health sciences: a map. Front Public Health. 2020; 8: 457. PubMed Abstract | Publisher Full Text | Free Full Text
33. Manyara AM, Purvis A, Ciani O, et al.: Sample size in multistakeholder Delphi surveys: at what minimum sample size do replicability of results stabilize? J Clin Epidemiol. 2024; 174: 111485. PubMed Abstract | Publisher Full Text | Free Full Text
34. Nair R, Aggarwal R, Khanna D: Methods of formal consensus in classification/diagnostic criteria and guideline development. Semin Arthritis Rheum. Elsevier, 2011; 41(2): 95–105. PubMed Abstract | Publisher Full Text | Free Full Text
35. Versus Arthritis. 2025; [Accessed 15 May 2025]. Reference Source
36. CCAA: Supporting children with Juvenile Idiopathic Arthritis (JIA). 2024; [Accessed 20 Apr 2025]. Reference Source
37. NRAS: Is it RA? 2025; [Accessed 23 May 2025]. Reference Source
38. Lupus UK: Welcome to the home of Lupus UK. 2025; [Accessed 13 Jun 2025]. Reference Source
39. Coyne IT: Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs. 1997; 26(3): 623–30. PubMed Abstract | Publisher Full Text
40. White MD, Marsh EE: Content analysis: a flexible methodology. Library trends. 2006; 55(1): 22–45. Publisher Full Text
41. Beiderbeck D, Frevel N, von der Gracht HA, et al.: Preparing, conducting, and analyzing Delphi surveys: cross-disciplinary practices, new directions, and advancements. MethodsX. 2021; 8: 101401. PubMed Abstract | Publisher Full Text | Free Full Text

Comments on this article Comments (0)

Version 1

VERSION 1 PUBLISHED 14 Jan 2026

Author details Author details

¹ Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, England, LS7 4SA, UK
² Children's Clinical Research Team, Leeds Teaching Hospitals NHS Trust, Leeds, England, LS1 3EX, UK
³ Psychological and Social Medicine, University of Leeds School of Healthcare, Leeds, England, LS1 3EX, UK
⁴ Therapies Department, Royal National Orthopaedic Hospital, London, England, HA7 4LP, UK
⁵ NIHR Great Ormond Street Hospital Biomedical Research Centre, London, England, WC1N 3JH, UK
⁶ Infection, Immunity & Inflammation Department, University College London, London, England, WC1E 6BT, UK
⁷ NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals NHS Trust, Leeds, Please Select, LS7 4SA, UK

Heather Rostron
Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Writing – Original Draft Preparation, Writing – Review & Editing

Simon Pini
Roles: Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

Adam Galloway
Roles: Methodology, Writing – Review & Editing

Anthony Gilbert
Roles: Methodology, Supervision, Writing – Review & Editing

Polly Livermore
Roles: Methodology, Supervision, Writing – Review & Editing

Anthony Redmond
Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

This project is funded by the National Institute for Health and Care Research (NIHR) under a doctoral fellowship awarded to Heather Rostron (Grant Reference Number NIHR302999)]. The views expressed are those of the author(s) and not necessarily those of the NIHR, NHS or the Department of Health and Social Care.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Article Versions (1)

version 1

Published: 14 Jan 2026, 6:10

https://doi.org/10.3310/nihropenres.14191.1

Copyright

© 2026 Rostron H et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Download

Export To

metrics

VIEWS

31

downloads

6

Citations

0

SEE MORE DETAILS

CITE

how to cite this article

Rostron H, Pini S, Galloway A et al. PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT): A protocol for a consensus study [version 1; peer review: awaiting peer review]. NIHR Open Res 2026, 6:10 (https://doi.org/10.3310/nihropenres.14191.1)

NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.

track

receive updates on this article

Track an article to receive email alerts on any updates to this article.

Open Peer Review

Comments on this article Comments (0)

Version 1

VERSION 1 PUBLISHED 14 Jan 2026

Open Peer Review

Reviewer Status

AWAITING PEER REVIEW

Comments on this article

All Comments(0)

Add a comment

Sign up for content alerts

[1] 1. Stringer G: Musculoskeletal conditions. Why is it important? NHS England, 2019; [Accessed 3 May 2020]. Reference Source

[2] 2. Selvaag AM, Aulie HA, Lilleby V, et al.: Disease progression into adulthood and predictors of long-term active disease in juvenile idiopathic arthritis. Ann Rheum Dis. 2016; 75(1): 190–195. PubMed Abstract | Publisher Full Text

[3] 3. Healy P, McCrone L, Tully R, et al.: Virtual outpatient clinic as an alternative to an actual clinic visit after surgical discharge: a randomised controlled trial. BMJ Qual Saf. 2019; 28(1): 24–31. PubMed Abstract | Publisher Full Text

[4] 4. Greenhalgh T, Wherton J, Shaw S, et al.: Video consultations for COVID-19. BMJ. Publishing Group, 2020; 368: m998. PubMed Abstract | Publisher Full Text

[5] 5. RCPCH: Digital by default or digital divide? Virtual healthcare consultations with young people 10 – 25 years. RCPCH, 2020; [Accessed 15 Sep 2023]. Reference Source

[6] 6. Gilbert AW, Billany JCT, Adam R, et al.: Rapid implementation of virtual clinics due to COVID-19: report and early evaluation of a quality improvement initiative. BMJ Open Qual. 2020; 9(2): e000985. PubMed Abstract | Publisher Full Text | Free Full Text

[7] 7. NHS England: Supporting care with remote monitoring. NHS England, 2023; [Accesed 7 Oct 2023]. Reference Source

[8] 8. British Medical Association: COVID-19: video consultations and homeworking. BMA, 2020; [Accessed 20 May 2020]. Reference Source

[9] 9. NHS England: NHS long term plan. NHS England, 2020; [Accessed 29 Jul 2023]. Reference Source

[10] 10. NHS England: Blueprint launched for NHS and social care reform following pandemic. 2021; [Accessed 29 Jul 2023]. Reference Source

[11] 11. NHS England: A plan for digital health and social care. Policy Paper, 2022; [Accessed on 30 Aug 2022]. Reference Source

[12] 12. NHS England: What good looks like. 2021; [Accessed 26 Jul 2023]. Reference Source

[13] 13. NHS England: NHS Federated Data Platform (FDP): digitising and connecting data to transform health and care. 2024; [Accessed 03 Aug 2025]. Reference Source

[14] 14. Department of Health and Social Care and NHS England: 10 year Health Plan for England: fit for the future. 2025. Reference Source

[15] 15. NHS England: Digital child health transformation programme. 2024; [Accessed 25 Jul 2025]. Reference Source

[16] 16. Digitaleurope: A digital health decade: driving innovation in Europe. DigitalEurope, 2022; [Accessed 5 Sep 2023]. Reference Source

[17] 17. World Health Organisation: The European Commission and WHO launch landmark Digital health initiative to strengthen global health security. WHO, 2023; [Accessed 1 Oct 2023]. Reference Source

[18] 18. Madden M, Lenhart A, Duggan M, et al.: Teens and technology 2013. Pew Internet & American Life Project, 2005. Reference Source

[19] 19. Ahern DK, Kreslake JM, Phalen JM: What is eHealth (6): perspectives on the evolution of eHealth research. J Med Internet Res. 2006; 8(1): e4. PubMed Abstract | Publisher Full Text | Free Full Text

[20] 20. Catarino M, Charepe Z, Festas C: Promotion of self-management of chronic disease in children and teenagers: scoping review. Healthcare (Basel). 2021; 9(12): 1642. PubMed Abstract | Publisher Full Text | Free Full Text

[21] 21. Leonardsen ACL, Hardeland C, Helgesen AK, et al.: Patient experiences with digital health solutions. A systematic review. BMC Health Serv Res. 2020Publisher Full Text

[22] 22. Weatherburn G, Dowie R, Mistry H, et al.: An assessment of parental satisfaction with mode of delivery of specialist advice for paediatric cardiology: face-to-face versus videoconference. J Telemed Telecare. 2006; 12 Suppl 1: 57–9. PubMed Abstract | Publisher Full Text

[23] 23. Levy S, Henderson L, McAlpine C: Growing up with confidence: using telehealth to support continence self-care deficits amongst young people with complex needs. Inform Prim Care. 2014; 21(3): 113–7. PubMed Abstract | Publisher Full Text

[24] 24. Bradford NK, Young J, Armfield NR, et al.: Home telehealth and paediatric palliative care: clinician perceptions of what is stopping us? BMC Palliat Care. 2014; 13(1): 29. PubMed Abstract | Publisher Full Text | Free Full Text

[25] 25. Bullock DR, Vehe RK, Zhang L, et al.: Telemedicine and other care models in pediatric rheumatology: an exploratory study of parents’ perceptions of barriers to care and care preferences. Pediatr Rheumatol Online J. 2017; 15(1): 55. PubMed Abstract | Publisher Full Text | Free Full Text

[26] 26. Kessler EA, Sherman AK, Becker ML: Decreasing patient cost and travel time through pediatric rheumatology telemedicine visits. Pediatr Rheumatol Online J. 2016; 14(1): 54. PubMed Abstract | Publisher Full Text | Free Full Text

[27] 27. Butler S, Sculley D, Santos DS, et al.: Usability of eHealth and mobile health interventions by young people living with Juvenile Idiopathic Arthritis: systematic review. JMIR Pediatr Parent. 2020; 3(2): e15833. PubMed Abstract | Publisher Full Text | Free Full Text

[28] 28. Butler S, Sculley D, Santos D, et al.: Effectiveness of eHealth and mHealth interventions supporting Children and Young People living with Juvenile Idiopathic Arthritis: systematic review and meta-analysis. J Med Internet Res. 2022; 24(2): e30457. PubMed Abstract | Publisher Full Text | Free Full Text

[29] 29. Rostron H, Wright JM, Gilbert AW, et al.: Adoption of Technology Enabled Care to support the management of children and teenagers in rheumatology services: a protocol for a mixed-methods systematic review. BMJ Open. 2024; 14(2): e082515. PubMed Abstract | Publisher Full Text | Free Full Text

[30] 30. Galloway AM, Keene DJ, Anderson A, et al.: Clinical consensus recommendations for the non-surgical treatment of children with Perthes’ disease in the UK. Bone Joint J. 2024; 106-B(5): 501–507. PubMed Abstract | Publisher Full Text

[31] 31. May C, Finch T: Implementing, embedding, and integrating practices: an outline of normalization process theory. Sociology. 2009; 43(3): 535–554. Publisher Full Text

[32] 32. Niederberger M, Spranger J: Delphi technique in health sciences: a map. Front Public Health. 2020; 8: 457. PubMed Abstract | Publisher Full Text | Free Full Text

[33] 33. Manyara AM, Purvis A, Ciani O, et al.: Sample size in multistakeholder Delphi surveys: at what minimum sample size do replicability of results stabilize? J Clin Epidemiol. 2024; 174: 111485. PubMed Abstract | Publisher Full Text | Free Full Text

[34] 34. Nair R, Aggarwal R, Khanna D: Methods of formal consensus in classification/diagnostic criteria and guideline development. Semin Arthritis Rheum. Elsevier, 2011; 41(2): 95–105. PubMed Abstract | Publisher Full Text | Free Full Text

[35] 35. Versus Arthritis. 2025; [Accessed 15 May 2025]. Reference Source

[36] 36. CCAA: Supporting children with Juvenile Idiopathic Arthritis (JIA). 2024; [Accessed 20 Apr 2025]. Reference Source

[37] 37. NRAS: Is it RA? 2025; [Accessed 23 May 2025]. Reference Source

[38] 38. Lupus UK: Welcome to the home of Lupus UK. 2025; [Accessed 13 Jun 2025]. Reference Source

[39] 39. Coyne IT: Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs. 1997; 26(3): 623–30. PubMed Abstract | Publisher Full Text

[40] 40. White MD, Marsh EE: Content analysis: a flexible methodology. Library trends. 2006; 55(1): 22–45. Publisher Full Text

[41] 41. Beiderbeck D, Frevel N, von der Gracht HA, et al.: Preparing, conducting, and analyzing Delphi surveys: cross-disciplinary practices, new directions, and advancements. MethodsX. 2021; 8: 101401. PubMed Abstract | Publisher Full Text | Free Full Text

PaEdiatric Rheumatology FramEworK for Technology enabled care (PeRFekT): A protocol for a consensus study

Abstract

Background

Methods

Discussion

Trial registration

Plain Language Summary

Background

Methods

Discussion

Keywords

Introduction

Paediatric rheumatology context

Effects of Covid-19 on Technology Enabled Care (TEC)

Learning from Covid-19 and continuation of Technology Enabled Care

Potential for Technology Enabled Care in child health

Previous PhD work packages

Normalisation Process Theory (NPT)

Methods and analysis

Aim

Study design

Setting and sample

Eligibility criteria

Recruitment

Table 1. Sampling Framework for 16 Healthcare Professionals.

Table 2. Sampling Framework for 16 Children and Young People.

Table 3. Sampling Framework for 16 Parents.

Table 4. Sampling Framework for 16 ‘other’ Stakeholders.

Consent

Figure Number 1. Study advisory group and participant flow chart.

Data collection

Data analysis

Patient and Public Involvement

Dates of study

Discussion

Strengths and limitations of this study

List of abbreviations

Declarations

Ethics approval and consent to participate

Consent for publication

Data availability

Acknowledgements

References

Comments on this article Comments (0)

Open Peer Review

Comments on this article Comments (0)

Open Peer Review

Reviewer Status

Comments on this article

Competing Interests Policy

Stay Updated

Are you an NIHR-funded researcher?

Thank you!