The overall duration of this CPG adaptation project was two years and five months from 4th of January 2017 till 30th of May 2019. Seven meetings were conducted for planning, reviewing, and focus group discussions including two training sessions with ongoing hands-on advisory on the CPG appraisal and adaptation tools.
This work marks the first CPG adaptation project for the management of people with ADHD using the ‘KSU Modified ADAPTE’.
Phase One (Set Up)
The aforementioned GAG was formulated in January 2017 as a multidisciplinary group with expertise in ADHD (TA, FB, MH, HA, SA, HD) and evidence-based CPGs (YA). ADHD was selected as a high priority health topic with clear practice variation and lack of national CPGs for its management. The necessary resources and skills were identified and allocated. All of the GAG members signed declaration of conflicts of interest statements.
The feasibility of the CPG adaptation process was confirmed by conducting a preliminary search for published CPGs. The working plan was drafted and discussed at the outset using the relevant CPG adaptation working plan template from the KSU-Modified-ADAPTE (Appendix Table 3) [9].
Phase Two (Adaptation)
For the first and second phases, a systematic review for the recently published ADHD Source CPGs was conducted and published in a separate report, which included the PIPOH model, eligibility criteria, results of the search and screen for Source CPGs, in addition to the results of the ratings and commentary of the AGREE II appraisal [1].
Six source ADHD CPGs were reviewed and critically appraised including those developed by the American Academy of Pediatrics, Canadian ADHD Resource Alliance, National Health and Medical Research Council, National Institute for Health and Care Excellence (NICE), Singapore Ministry of Health, and University of Michigan Health System [1] .
The NICE CPG was superior in all of the six standardized domain scores of the AGREE II Instrument and it addressed all care options for ADHD across the lifespan. The AGREE II ratings of the NICE CPG were 100% (domain 1: scope and purpose), 96% (domain 2: stakeholder involvement), 93% (domain 3: rigour of development), 89% (domain 4: clarity and presentation), 92% (domain 5: applicability), 92% (domain 6: editorial independence), and 100 % (overall assessment 1) [1].
Afterwards, we assessed the currency of the NICE Source CPG to ensure the validity and currency of its recommendations and their evidence-base using the related assessment of the CPG currency from the KSU-Modified-ADAPTE (Appendix Table 4) [9].
The GAG reviewed and discussed the AGREE II assessment standardized domain scores and decided to adopt all of the recommendations of the NICE CPG. Relevant customization of the recommendations was conducted after several focus group discussions of facilitators and barriers to CPGI especially regarding variable health systems, medications, or healthcare provider positions.
The GAG decided to adopt the CPGI tools provided by the NICE Source CPG, i.e. baseline assessment tool and quality standards. Additional CPGI tools were included by the GAG based on and relevant to the adapted ADHD recommendations including; (i) two medication tables; one for treatment of children and young people and the other for treatment of adults with ADHD (a merged summary medication has been provided in this article), (ii) a clinical algorithm for management of ADHD (Figure 2), (iii) the set of related ICD-10-AM codes that were adopted by the National Health Information Center, Saudi Health Council [7] in addition to the ICD-11 codes [20], and (iv) links to patient educational information and resources on the Society’s official website. A mobile-friendly web-based version of the CPG was also developed.
Phase Three (Finalization)
Thirteen members participated as the external review panel from the target audience of the CPG based on their expertise in caring for people with ADHD (FA, OA, AA, HA, YAA, NA, WA, KA, AJ, and MB) and in methodologies of evidence-based CPGs (HAA and SA) in addition to their representation of multiple relevant healthcare sectors in Saudi Arabia. Two international experts were invited to contribute to the external review of the clinical content as well (MG and MJN).
The external review comments were compiled using a template [9], revised, discussed, and incorporated in the recommendations and implementation tools of the finalized adapted CPG full document.
The customization or adaptation of recommendations was conducted with regards to the differences in the health systems and delivery of healthcare services especially for people with ADHD between the United Kingdom (UK) and the Kingdom of Saudi Arabia. The similarities in the health systems in both countries being nationalized healthcare systems where the government provides the majority of healthcare services, in addition to the similarity of income levels facilitated the process of adaptation of recommendations to the local context [21]. Furthermore, the recommended medications were revised against those currently approved by the Saudi Food and Drug Authority (Saudi FDA), and those available on a restricted basis through specific hospitals. No formal cost-analyses or Health Technology Assessment(s) were conducted as part of this project.
Health benefits, side effects, and risks were evaluated in the Source CPG (NICE) as part of the AGREE II assessment [1] and were further revised and discussed during the adaptation or customization of the recommendations to the local context.
The values and preferences of the target patient population was considered and discussed throughout the CPG adaptation process through the input of the patient advocate. Moreover, reports from the patient and public encounters during related services were provided by the society.
As a part of quality assurance, the finalized adapted CPG from the Saudi ADHD Society was then critically reviewed and endorsed by the Saudi Health Council as well as five national professional societies – the Saudi Pediatric Neurology Society, the Saudi Pediatric Association, the Saudi Pharmaceutical Society, the Saudi Psychiatric Association, and the Saudi Society of Professional Psychology. The adapted CPG included recommendation statements organized into ten sections including; (i) Service organisation and training, (ii) Recognition, identification and referral, (iii) Diagnosis, (iv) Support, (v) Managing ADHD, (vi) Dietary advice, (vii) Medication, (viii) Maintenance and monitoring, (ix) Adherence to treatment, and (x) Review of medication and discontinuation.
The Saudi ADHD Society contacted NICE, the Source CPG developer, and finalized an official end user license agreement in line with the original NICE terms and conditions and the NICE UK Open Content license.
A summary of the key recommendations is provided in Table 1 and the full CPG document is made available, in addition to the translation into the Arabic language [22], on a user-friendly and accessible microsite of the official website of the Saudi ADHD Society: https://cpg.adhd.org.sa/
Plan for scheduled review and update
The GAG recommended for the next review of this adapted CPG to be after four years from its publication (2020) which should be on (2024) after checking for updates in the Source CPG, consultation of expert opinion on any suggested updates needed according to the newest evidence and recommendations published in this area in addition to the implementation and evaluation results at relevant healthcare organizations in the Kingdom of Saudi Arabia. The Checklist for the Reporting of Updated Guidelines (CheckUp) is recommended by the EQUATOR network to report the updating of CPGs [23].
Implementation considerations and tools
A full set of CPGI tools was an integral component of the adapted CPG full document (Figure 2, Tables 1-2). Several CPGI interventions or strategies were highlighted and proposed to promote future CPGI including; (i) leadership engagement and commitment, (ii) dissemination, (iii) clinical and quality champions, (iv) training and education, (v) audit and feedback, (vi) networking with existing projects in the organizations (e.g. performance improvement, accreditation, educational, and scientific activities), and (vi) patients as champions for change [24,25].
The GAG recommends using this adapted CPG as a core tool within regular Plan-Do-Study-Act (PDSA) healthcare quality improvement cycles to support and promote quality and safety of healthcare services and best practice for people with ADHD.
Facilitators and barriers to implementation
Several potential facilitators and barriers to implementation were identified during the CPG adaptation process.
Facilitators include the relevant national strategies, committees, initiatives, and new healthcare services that are expected as a part of the new model of care, to support implementation. Contribution of representatives of multiple local healthcare sectors are designed to facilitate early dissemination and implementation.
Identified barriers and challenges that require a pro-active intervention to address them as a part of planning for implementation include, but are not limited to, the following: (i) medication availability, access, and sustainability; (ii) dissemination of the adapted CPG; (iii) lack of awareness of the primary care regarding the updated evidence-based recommendations of ADHD; (iv) lack of seamless integration between different national healthcare sectors; and (v) poor transition from pediatric to adult healthcare services.
An overall decision support record for the ADHD CPG adaptation group (GAG) using the KSU-Modified-ADAPTE methodology is provided in Appendix Table 5.