Abstract
Background:
Rheumatic and musculoskeletal disorders (RMDs) of childhood onset are chronic conditions that often persist into adulthood, necessitating a structured transition from Pediatric to adult healthcare. In Saudi Arabia, no standardized protocol exists, leading to inconsistencies and care gaps for adolescents with RMDs. Saudi health transformation goals include improving overall health, enhancing the quality and accessibility of healthcare services, and increasing value by improving outcomes and controlling costs.
Objective:
To develop a consensus statement on transitional care for adolescents with juvenile autoimmune diseases in Saudi Arabia, providing a structured framework to guide healthcare providers in creating effective transition programs.
Design:
We used the Delphi methodology, integrating a literature review with expert opinions to generate consensus statements.
Methods:
A steering committee oversaw the process, which involved two rounds of voting among 16 expert panelists. Consensus was defined as >75% of participants’ agreement. Statements that did not achieve consensus were revised and subjected to a second round of evaluation. The consensus was reviewed and supported by two adolescent patients.
Results:
In the first round, consensus was reached on 21 of 30 statements; 9 were revised for the second round, and 3 additional statements were introduced. Of these 12 second-round statements, 7 reached consensus. Key findings included establishing a structured national transition protocol, ongoing professional development for healthcare providers, and educational programs for patients and their families. The study also highlighted the necessity of regular readiness assessments using validated tools, such as the Transition Readiness Assessment Questionnaire, and the importance of a multidisciplinary approach to transition care.
Conclusion:
The consensus statement provides a foundational framework for transitional care in Saudi Arabia, addressing the need for structured, patient-centered transition programs. Clear guidelines, continuous assessment, education, and multidisciplinary collaboration are emphasized to improve care quality and outcomes for adolescents with RMDs transitioning to adult healthcare.
Plain language summary
Some children with rheumatic and musculoskeletal diseases continue to need medical care when they become adults. Moving from pediatric to adult clinics can be difficult, especially when there is no clear plan to guide the process. In Saudi Arabia, there is currently no national system to manage this transition, which can lead to confusion and gaps in care. This study brought together 16 doctors who specialize in children’s and adults’ rheumatology to agree on the best way to support young people during this change. Using a structured discussion method called the Delphi process, the experts reviewed and voted on key recommendations. They agreed on the need for a national transition program, more training for healthcare providers, and better education for patients and families. They also recommended regular assessments to check if adolescents are ready to move to adult care and emphasized teamwork among doctors, nurses, and other specialists. These recommendations provide a clear and practical plan to help young people in Saudi Arabia move safely and smoothly from pediatric to adult rheumatology care.
Introduction
Rheumatic and musculoskeletal disorders (RMDs) with childhood-onset encompass a diverse group of rare conditions that commonly manifest early in life and continue into adulthood in over half of the affected patients.1,2 As children with RMDs grow into adulthood, they experience numerous physiological, emotional, and social changes affecting both the disease progression and its management. 3 Therefore, a systematic and well-structured transitional care procedure is essential to ensure effective disease management during the transition period. 4 Eventually, children with RMDs will be transferred from pediatric to adult healthcare, a process referred to as transitional care. 5 Transitional care is defined by the American National Alliance to Advance Adolescents Healthcare as the process of changing from a pediatric to an adult healthcare model. 6 On the other hand, the transfer is an event that happens on one occasion when the patient moves from one place to another. This usually occurs when the pediatrician discharges a young person from their care and refers them to an adult physician or when the adult healthcare team sees a patient for the first time.
Significant differences between pediatric and adult healthcare models can significantly affect continuity of care and adherence. While a pediatric care model relies mainly on parent involvement, adult care models require great independence and self-discipline in disease management. 7 Studies indicated that the lack of a transition process for children with special healthcare needs was associated with decreased adherence, loss of follow-up, and adverse health outcomes.8,9 Such a pattern of deteriorating outcomes during transition is partly due to interruption of care, inadequate preparation, and the lack of readiness for the transition of care of patients and their caregivers. Several studies have shown that most of the time, adolescents/parents who reached adult care were not involved in decision-making.10,11
In Saudi Arabia, 56 participants (94%) reported not using any standardized program for transition of care. All respondents emphasized the need for an established protocol to guide the transition process. The main barriers identified were the absence of clear protocols (63%), a shortage of healthcare providers (56%), and underdeveloped systems that limit access to patients’ electronic health records (55%). 4
Therefore, effective disease management during this stressful period via a well-structured and patient-centered transitional care program is key to improving compliance and long and short-term health outcomes.12–15 In a transitional care program, active and multidisciplinary approaches address the overall needs of patients and their caregivers as they move to adult care. This program helps young patients understand their illness, treatment regimen, and the effects on their lives. In addition, transitional care programs assess patients’ and caregivers’ readiness for transition and gradually prepare them for self-management by increasing adolescent responsibility and reducing parental involvement. 16 Moreover, transitional care approaches help patients build a solid relationship with their new adult healthcare provider. Consequently, it significantly enhances medication adherence, reduces the number of hospital visits, and improves overall health, quality of life, and patient outcomes.17,18 In 2019, Hart et al. 8 reported that a well-managed transition of care resulted in less waiting time for an adolescent to be seen in adult clinics, accompanied by better quality scores.
Our study shares similar aims with the Turkish Delphi study by Şahin et al., 19 which explored national consensus on transition care for juvenile idiopathic arthritis. However, the present work extends this effort to the Saudi Arabian context, where healthcare delivery systems, cultural expectations, and patterns of family involvement differ substantially. By replicating and adapting the Delphi approach, our study examines whether the principles identified in Turkey such as transition readiness assessment, multidisciplinary team involvement, and patient–family education are applicable or require modification within Saudi healthcare settings. This provides valuable insights into the cultural and systemic factors influencing transition care and offers context-specific recommendations for policy development and clinical implementation in Saudi Arabia. In doing so, our findings contribute to the broader regional understanding of transition care models in the Middle East.
While there are several transitional care models implemented worldwide for children with special healthcare needs, transitional care services do not formally exist in Saudi Arabia, and children with special healthcare needs are transferred to adult healthcare starting at the age of 14. 7 Depending on the availability of resources, pediatric and adult rheumatologists utilize informal and unstructured care transition methods such as joint clinics, multidisciplinary team meetings, and/or phone or email endorsements. 4 However, there are no local recommendations or standardized guidelines for transitional care for adolescents with rheumatic disease to ensure consistent implementation, continuity of care, and a smooth and successful transition for adolescents. 4 Aligned with Saudi National healthcare transformation strategies, we aim to provide a consensus statement on transitional care for adolescents with childhood RMDs to support healthcare professionals in Saudi Arabia when creating their local transitional care programs and processes for young patients with rheumatological diseases preparation, transition, and transfer to adulthood. 20
Methods
We employed the RAND/UCLA modified Delphi methodology 21 to develop consensus-based statements, combining a comprehensive literature review with expert clinical opinion. This structured method is designed to generate and refine items through iterative rounds of feedback from a panel of specialists.
Steering committee
A steering committee comprising nine members was formed to oversee the Delphi process. The committee included one epidemiologist, three adult rheumatologists, three pediatric rheumatologists, one nurse practitioner, and one rheumatology fellow. During the initial virtual meeting, the committee agreed to conduct a maximum of two Delphi rounds, with a third round only if necessary. Each statement was to be rated on a 5-point Likert scale: 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, and 5 = strongly agree. Consensus was defined as achieving 75% agreement (scores of 4 or 5). It was also determined that any statement failing to reach consensus by the second round would be excluded. No meetings were held between the steering committee and the panelists to maintain objectivity. To incorporate patient-centered perspectives, two adolescent patients with rheumatological conditions and their parents were consulted to review and suggest amendments to the draft items.
The study protocol received approval from the Biomedical Ethics Unit (Reference No. 225-23) and was conducted in accordance with the principles outlined in the Declaration of Helsinki.
Systematic review
A systematic literature review was conducted by the epidemiologist (Hana Alahmari) using Medline, Embase, and Cochrane databases from inception to February 2024. The search strategy, outlined in Supplemental 1, aimed to identify published guidelines, recommendations, or models related to the transition of care for adolescents with rheumatologic diseases. Qualitative studies, review articles, and studies focusing solely on implementation outcomes were excluded. After removing duplicates, 475 references were screened, of which 19 were selected for full-text review and shared with the steering committee for item generation. A PRISMA flow diagram is provided in Figure S1. 22 Selected pieces of evidence were also included in the initial email invitation sent to the expert panelists to support their evaluation.
Expert panel
The expert panel consisted of 16 rheumatologists (8 pediatric and 8 adult specialists), each with a minimum of 10 years of clinical experience. To ensure diverse perspectives, the panel was composed of professionals from all 13 governmental regions of the country, working in academic institutions or large public hospitals (Table S1 and Figure S2). Experts were selected to ensure diversity across healthcare systems, such as the Ministry of Health, military hospitals, university hospitals, and specialized centers. Experience in transition care was preferred but not essential, as long as participants could commit to the Delphi rounds and consensus meetings. The exclusion criteria included fewer than 5 years of rheumatology experience, minimal involvement in adolescents or young adult care, and inability to complete the Delphi process, significant conflict of interest, and non-rheumatology professionals.
Each panelist was offered co-authorship in recognition of their contributions. Additionally, to enhance the inclusiveness and relevance of the statements, two bilingual adolescent patients and their consenting parents reviewed the final summary, with moderation provided by committee members. Their feedback on clarity and acceptability was considered in the final document.
The level of evidence and strength of recommendations were graded according to the Oxford Centre for Evidence-Based Medicine guidelines. 23 Afterward, recommendations and other materials were consolidated into a document and forwarded to the panel for comments and review.
Delphi rounds
Two Delphi rounds were conducted using E-Delphi software (2024 version). The first round was launched in March 2024, followed by a second round in April 2024. Each round remained open for 1 week, and voting was anonymous. Round 1 included 30 items categorized into 3 domains: pre-transition, transition, and post-transition (Supplemental Appendix). Panelists were encouraged to provide written comments, suggest modifications, or rephrase statements. Following the first round, the steering committee, led by M.N., held an online meeting to review the feedback and consensus results. Items that did not meet the consensus threshold were revised for clarity and resubmitted in Round 2. All panelists received a qualitative and quantitative summary of the results from both rounds via email. The committee decided that a third Delphi round was not necessary.
Statistical analysis
The statistical analysis was performed using E. Delphi software, which automatically analyses the result after the closure of each Delphi round. Assuming a normal distribution, it provides the responses’ mean, standard deviation, and median. Categorical variables were summarized as counts (percentages). Tables and graphs are shown in the result.
Results
Structured transition pathway from pediatric to adult rheumatology care
Figure 1 outlines a structured, multi-phase transition pathway for adolescents with rheumatic diseases, designed to guide them from pediatric to adult rheumatology care. The process begins between the ages of 12 and 14 at the pediatric rheumatology clinic, where meetings are held in the presence of parents to initiate the transition process. During this phase, adolescents undergo health care assessments (noted as HEADSSS) and disease activity evaluations. Simultaneously, a transition policy is implemented, and a formal readiness assessment is conducted to determine the patient’s preparedness for transfer.
A proposed strategy for transition and transfer, the figure outlines a stepwise transition from pediatric to adult rheumatology care. The arrows show the flow: starting at ages 12–14 with preparation and readiness assessment, moving to shared pediatric–adult care (red arrow highlights this key stage), then to formal transfer at ages 14–18, and finally to audit and evaluation. The side box lists the multidisciplinary team supporting each phase.
Following this, the patient enters a shared-care phase involving both pediatric and adult rheumatologists, facilitating a gradual transition to adult rheumatology services. From ages 14 to 18, the adolescent becomes increasingly integrated into adult rheumatology care through a unique appointment system and recognition of transitional care needs. During this time, reassessments of both health status and disease activity continue, and a transfer medical report is prepared and regularly updated to ensure all clinical information is well-documented.
By the end of this period, typically around age 18, the patient is formally transferred to adult rheumatology services, and the finalized medical report is handed over. The transition process concludes with an audit of patient experience, focusing on outcomes and quality indicators. This helps assess the effectiveness of the transition and identify areas for improvement. The entire pathway is supported by a multidisciplinary team that includes patients and parents, pediatric and adult rheumatologists, mental health professionals, clinical and nurse coordinators, rehabilitation service providers, pharmacists, and emergency department staff. This team-based, patient-centered approach ensures continuity of care and optimal support throughout the transition journey.
Recommendations generation
The recommendation statements were classified into four categories (overarching principles, pre-transition, transition/transfer, and post-transition). In the initial round of evaluation, 30 recommendation statements were assessed. A consensus, defined as an agreement exceeding 75%, was achieved for 21 of these statements. The remaining nine statements were subjected to revision and included in a second round of evaluation. In Saudi Arabia, a recent survey of rheumatologists showed that 94% do not follow any standardized transition of care programs. 4 A well-structured transition protocol must be implemented across pediatric, adolescent, and adult rheumatology healthcare settings to address significant unmet needs.
Overarching principles
The consensus strongly supports the implementation of a structured national transition framework for patients with rheumatic diseases. Experts emphasized the importance of establishing a written transition program and clearly defined pathways within each hospital to guide adolescents from pediatric to adult rheumatology care. A key recommendation is the appointment of a dedicated transition coordinator within the multidisciplinary team to ensure continuity, communication, and effective coordination of care. All stakeholders, including healthcare professionals, patients, and caregivers, should be actively engaged in the process, with approaches adapted to the specific institutional pathway. Patient experience and satisfaction should be used as primary outcome indicators to assess the success of transition programs. Overall, the transition process should remain dynamic, patient-centered, and inclusive of parents or caregivers, promoting a holistic and individualized approach.
In the first round of the survey, responses strongly supported the role of a dedicated transition coordinator, with a median of 5, a minimum of 2, and a maximum of 5. Respondents highlighted that coordinators enhance communication, streamline organization, and act as a crucial link between pediatric and adult care. Some participants noted potential feasibility challenges in certain centers due to logistical constraints.
In the second round, the statement “Having a dedicated transition coordinator in the Multidisciplinary Team is recommended” also received strong agreement, with a median of 5, a minimum of 4, and a maximum of 5. Comments consistently emphasized the importance of the coordinator in improving communication, maintaining organization, and facilitating smooth transition between pediatric and adult services.
Preparation for transition
Proper preparation is essential for a smooth and effective transition from pediatric to adult rheumatology care. Continuous professional development through dedicated workshops for healthcare providers is considered a key component, although it achieved slightly lower consensus (80%). Similarly, educational programs designed specifically for patients and their families are crucial to enhance understanding, engagement, and readiness, with 93% agreement among respondents. Another vital aspect is the regular assessment of transition readiness using validated tools such as the TRAQ (Transition Readiness Assessment Questionnaire), which also garnered 80% consensus. These measures collectively ensure that both patients and their families are adequately equipped to manage the changes associated with transitioning to adult care.
In the first round, participants expressed moderate support for incorporating routine psychosocial screening into transition programs, with a median of 4, a minimum of 2, and a maximum of 5. Comments emphasized the psychological vulnerability of adolescents, particularly those from underserved areas, while some participants suggested that screening should be recommended rather than mandated.
In the second round, the statement “A simple routine psychosocial screening through a validated tool should be part of any transition program” maintained similar ratings, with a median of 4, a minimum of 2, and a maximum of 5. Respondents highlighted the importance of formally identifying psychological issues that adolescents may not otherwise express. Specific challenges were noted for patients with limited education or those in remote areas, where psychosocial needs might go unnoticed. Some participants suggested clarifying the wording, recommending the term “recommended” instead of “should” and questioning the interpretation of “simple” in the statement.
Although no numerical ratings were provided for the timing of transition, comments generally supported initiating transition discussions between ages 12 and 14. Practices vary by institution, with some adhering to policies requiring transfer at age 14, while others preferred more flexibility to accommodate individual maturity and readiness.
Transfer and transition
Timing and individualization of transfer
The timing of transfer from pediatric to adult rheumatology care should be flexible and tailored to the patient’s disease characteristics, clinical condition, and readiness rather than strictly linked to a fixed age, such as the 14th birthday. In the first-round survey, respondents strongly agreed with this principle, with a median of 5, a minimum of 1, and a maximum of 5. Comments highlighted the importance of flexibility for patients with complex conditions requiring longer coordination or multiple specialties, as well as considering psychosocial maturity. Some institutions, however, still follow rigid age-based transfer policies, which may create challenges.
Scheduling transition time without dedicated clinics
When dedicated transition clinics are unavailable, scheduling specific transition appointments separately within pediatric and adult clinics is a feasible alternative. This approach received moderate support in the first round, with a median of 4, a minimum of 2, and a maximum of 5. Respondents noted that while separate appointments are not ideal, they provide essential time for coordination, patient education, and preparation.
Discussion of sensitive topics
Opinions were mixed regarding discussions on sexuality and family planning during transition. The first-round responses showed a median of 3, a minimum of 1, and a maximum of 5. Many participants emphasized cultural sensitivity and recommended delaying these discussions until ages 16–18 or after initial transition visits. Others supported including these topics in a tactful and age-appropriate manner during the transition process.
Interval between pediatric and adult visits
To ensure continuity of care, the interval between the last pediatric visit and the first adult visit should ideally be 3–6 months. This recommendation had a median of 4, a minimum of 2, and a maximum of 5. Several respondents preferred shorter intervals to maintain treatment continuity, particularly for patients with severe disease, while others emphasized individualizing timing based on patient-specific factors.
Transfer when clinically stable
There was very strong support for transferring patients only when their clinical condition is stable, as this promotes a smoother transition and reduces stress for both patients and providers. This item had a median of 5, a minimum of 4, and a maximum of 5. Respondents noted, however, that institutional rules such as mandatory transfer at age 14 can complicate adherence to this principle, and some patients may never reach complete clinical stability.
Preferred age for complete transition (Exit)
Responses regarding the optimal age for completing transition varied. For ages 16–18, the median was 3, with a minimum of 1 and a maximum of 5. Some respondents emphasized readiness over chronological age. For ages 14–16, the median was 4, with a minimum of 2 and a maximum of 5. Many participants aligned this range with institutional policies and highlighted that older adolescents tend to be more mature and independent, facilitating a smoother transition. Comments in the second round supported initiating transition discussions early, typically between ages 12 and 14, particularly where local policies require transfer by age 14, while others preferred initiating transition between 14 and 16 to match developmental readiness.
Transition clinics and alternatives
Ideally, joint transition clinics involving both pediatric and adult rheumatologists are recommended. Where this is not feasible, telemedicine clinics or coordinated appointments within separate pediatric and adult clinics are acceptable alternatives. Structured transfer reports, direct contact with transition coordinators, and multiple communication methods (phone, email, apps) are strongly encouraged to ensure continuity of care and reduce information gaps.
Individualized care plans and multidisciplinary collaboration
Transition programs should include documented individualized care plans and structured collaboration among all members of the multidisciplinary team. Discussions during transition should cover topics relevant to adolescents, including emotional well-being, risky behaviors, therapy adherence, self-management, and emergency strategies, ensuring a holistic and patient-centered approach to care.
Post-transfer phase
Post-transfer support is a critical component of a successful transition program. Patients and their families should have online access to their medical summaries and maintain direct lines of communication with their physicians, ideally facilitated through a transition coordinator. In the absence of a coordinator, direct contact with the physician should still be available to ensure continuity of care and address patient concerns.
Survey responses confirmed strong agreement on this principle. In the first round, direct contact via a transition coordinator had a median of 5, a minimum of 3, and a maximum of 5. The second round reflected similar strong support, with a median of 5, a minimum of 3, and a maximum of 5. Commenters emphasized that accessible communication is essential for patient and family reassurance, particularly during the early stages of adult care transition.
Transition programs should incorporate tools to collect patient and caregiver feedback and establish mechanisms for regular evaluation and audit. Developing and routinely monitoring process and outcome measures are recommended to continually improve program quality and effectiveness. This structured approach ensures that transition services remain responsive to patient needs and can adapt over time.
Sustainable funding is vital to support the workforce, logistics, and clinical services necessary for uninterrupted care. Strong consensus emerged around this requirement. In the first round, securing funding had a median of 5, a minimum of 3, and a maximum of 5. In the second round, the median remained 5, with a minimum of 3, and a maximum of 5. Respondents highlighted that securing funding ensures continuity and quality of transition services, although applicability may vary across institutions, particularly those operating under Ministry of Health regulations or with limited resources.
All post-transfer recommendations are based on Level of Evidence 4 and Grade of Recommendation D, reflecting expert consensus rather than high-level clinical trials. Despite this, the strong agreement across survey items underscores a unified expert vision for improving post-transfer care in adolescent and young adult rheumatology patients.
Comprehensive details of the final consensus are presented in Table 1, while the statements that failed to reach consensus are listed in Table 2. All descriptive statistics from the first and second rounds are presented in Tables 3 and 4.
All statements after two rounds, which reached a consensus.
GoR, grade of recommendation; LoE, level of evidence; TRAQ, Transition Readiness Assessment Questionnaire.
Statements did not reach a consensus after two rounds.
Descriptive analysis of first round statements.
MDT, Multidisciplinary Team.
Descriptive analysis of second round statements.
Statements that did not reach consensus after two rounds
Table 2 presents a set of statements related to the transition of adolescents with rheumatic diseases that did not reach consensus after two rounds of expert voting. These areas reflect ongoing uncertainty or variation in clinical practice and expert opinion. In the Preparation of Transition, the recommendation to include a simple routine psychosocial screening using a validated tool as part of transition programs received 69% agreement, falling short of the required threshold. Within the Transfer and Transition category, there was disagreement on the optimal age to initiate the transition process, with 62.5% favoring initiation between ages 14 and 16, while 37.5% preferred starting at 12–14 years. Additionally, the inclusion of topics such as sexuality and family planning in discussions with adolescents during transition received only 31% agreement. There was also a lack of consensus on the appropriate age for completing the transition and exiting pediatric care, with one statement proposing 16–18 years (44% agreement) and another suggesting 14–16 years (56% agreement). These findings underscore the need for further evidence, multidisciplinary dialogue, and cultural sensitivity when addressing these complex and individualized aspects of transition care.
Discussion
Transition is an age and developmentally appropriate process that addresses the psychosocial and educational/vocational aspects of care in addition to the traditional medical areas. Transition starts within pediatrics but continues on into adult services. It needs to be flexible regarding time and objectives, and relate to the patient’s needs and characteristics.
Health care policy in transition needs to address all the above-mentioned issues, including families’ preferred timing and readiness for transition and transfer, legal and ethical considerations (e.g., consent and confidentiality), and, finally, financial and human resource constraints to ensure sustainability.13,17,23–26 These policies must be adapted to the specific resources available at each hospital to ensure their effectiveness. 27
The patient-centered care program is a fundamental approach in healthcare transition science. It recognizes that patients are unique individuals with emotional, social, and financial contexts that impact their well-being. 13 Measuring the outcomes in such programs is very important. Although studies have identified a variety of transition outcome variables.13,20,23–33 Nevertheless, no standard agreement exists on measuring outcome variables. 30
On the other hand, measuring patient experience usually goes beyond clinical outcomes. It comprises how patients perceive their care, communication with healthcare providers, and overall satisfaction. High patient satisfaction often correlates with better adherence to treatment plans, improved health outcomes, and effective care coordination. 34
Although Şahin et al. 19 achieved agreement on the main aspects of transitional care for juvenile idiopathic arthritis patients, some issues still require further consensus. The acceptance and practical application of the final 20-item checklist are crucial for improving transition care in Turkey.
The Saudi consensus recommendation emphasizes continuous professional development for healthcare providers in transitional care. This aligns with the findings in the meta-analysis by Clemente et al. 35 The panelists also highlighted the necessity of educational programs for patients and their families, which is echoed in other consensus, such as the Spanish consensus, which advocates for comprehensive educational resources to be provided throughout the transition process. 36 Empowering patients and families through education is crucial for effectively managing the transition.
The integration of routine psychosocial screening into transition programs in Saudi Arabia received only 63% agreement. This is somewhat less emphatic than the international recommendations, which strongly advocate addressing psychosocial aspects throughout the transition process.14,36 Even after modifying the statement, the panelists did not agree. This variability in the Saudi responses highlights the need for further education and increased awareness among practicing rheumatologists.
The readiness to transition and transfer should be evaluated regularly using a validated tool. The Transition Readiness Assessment Questionnaire (TRAQ) was selected as an example because it is one of the most widely used and validated tools. 33 The EULAR/PReS published Transition standards and recommendations emphasized the importance of readiness assessments in ensuring smooth transitions from pediatric to adult care. 14
Multiple guidelines recommend a joint clinic for transition, where Pediatric and adult rheumatologists see the patient together. 36 If joint clinics are not feasible, alternatives such as telemedicine clinics or case conferences are considered acceptable. This reflects a pragmatic approach to addressing logistical challenges in transitional care, consistent with recommendations in the EULAR/PReS standards.14,35
Furthermore, patients and parents must be able to contact their physicians directly or through a transition coordinator. The literature widely supports the role of transition coordinators as vital for ensuring continuity of care.14,36
High consensus (93%) was reached on the necessity of documented individualized transition plans, multidisciplinary team processes, and access to informational resources. This approach is consistent with the broader literature, emphasizing the importance of personalized care plans to address each patient’s unique needs during transition.14,35,36 Therefore, the transition process should include discussions on topics relevant to young people’s emotional well-being, pain, fatigue, and risky behaviors. However, there was disagreement on discussing sensitive topics such as sexuality and family planning, likely due to cultural sensitivities in our society at such a young age. This reflects knowledge and experience gaps that need to be addressed in professional educational programs. Finally, we would like to propose a transition process for our patients, believing that implementing this pathway is feasible and will improve the quality of care (Figure 1).
Although most statements reached consensus, several areas, such as sexuality and family planning, psychosocial screening, and the optimal age for transfer did not achieve agreement among panelists. These topics likely reflect sociocultural sensitivities within the local context, where open discussion of sexual health remains limited and varies across institutions. Additionally, differences in healthcare infrastructure, family involvement, and cultural perceptions of adolescence may influence opinions on when and how to address these issues.
Limitations
Despite the inclusion of adolescent patients and their parents for feedback, their participation was limited to reviewing the final summary rather than engaging in all Delphi rounds. This may have restricted the depth of adolescent perspectives in shaping the consensus. Additionally, the expert panel was limited to rheumatologists, without broader input from other healthcare professionals such as nurses, psychologists, or social workers who play key roles in transition care. The relatively small sample size, although geographically diverse, may also limit generalizability to all healthcare settings in Saudi Arabia. Moreover, all recommendations presented in Table 1 were rated as Level of Evidence 4 and Grade D, indicating that they are primarily based on expert opinion rather than empirical data. This should be recognized as a limitation, as the absence of higher-level evidence may affect the generalizability and strength of the conclusions. To enhance the practical value of these recommendations, it may be beneficial to prioritize them according to their clinical importance or feasibility of implementation within the Saudi healthcare context.
Recommendation for future research
Future research should aim to build on the current expert consensus by incorporating broader multidisciplinary participation, including nurses, psychologists, and social workers, who play essential roles in transition care. Engaging adolescents and their parents more actively throughout all phases of research not only in reviewing outcomes would provide a deeper understanding of their needs and experiences. Larger, multicenter studies across diverse healthcare settings in Saudi Arabia are needed to enhance generalizability and validate these expert-based recommendations. Given that all current statements were derived from Level 4 evidence and Grade D expert opinion, future investigations should focus on generating higher-level empirical evidence through prospective studies and program evaluations. Moreover, future work should assess the clinical impact and feasibility of implementing each recommendation, allowing prioritization based on measurable patient outcomes and real-world applicability.
Conclusion
This is the first national project focused on transition care, involving collaboration between adult and pediatric rheumatologists from various regions and healthcare systems nationwide. This Delphi consensus highlights the urgent need for a structured and standardized transition pathway for adolescents with rheumatic diseases in Saudi Arabia. The strong agreement among experts reflects a shared commitment to improving continuity of care, strengthening multidisciplinary collaboration, and enhancing patient and family preparedness. Implementing these recommendations could support the establishment of unified clinical pathways, professional training programs, and patient education initiatives across healthcare facilities.
Supplemental Material
sj-docx-1-tab-10.1177_1759720X261431363 – Supplemental material for Consensus statements on the transition care for adolescents with rheumatic diseases in Saudi Arabia
Supplemental material, sj-docx-1-tab-10.1177_1759720X261431363 for Consensus statements on the transition care for adolescents with rheumatic diseases in Saudi Arabia by Mohammed Nashawi, Hana Alahmari, Emtenan Basahl, Toka Alsulaim, Arwa Alhamed, Aisha Mirza, Waleed Hafiz, Deyaa Mukhtar, Abdullah Aljaser, Hanan Al Rayes, Hamza Albader, Jubran Alqanatish, Khairiyah Alsufyani, Khaled Alderaan, Mahmoud Majeed, Mansour Somaily, Mohmmad Altowijry, Mohammed Attar, Mohammed Olfat, Mohammed A. Omair, Mutibah Alessi, Sulaiman M. Al-Mayouf, Zeyad Alzahrani, Nayef Al Ghanim, Abdulaziz Almutairi and Wafaa Alsuwairi in Therapeutic Advances in Musculoskeletal Disease
