Transition From Child to Adult Care in Paediatric Neurological Disorders in Europe—A Joint EAN‐EPNS Survey of Current Practices for Healthcare Providers

ABSTRACT

Background

Transition from paediatric to adult care is essential for young people with paediatric‐onset neurological disorders, yet remains inconsistently structured across Europe. This study aimed to characterise current transition practices, identify key barriers and explore perceived priorities for improving transition care.

Methods

A cross‐sectional web‐based survey, developed by the European Paediatric Neurology Society/European Academy of Neurology Task Force on Transition from Childhood to Adulthood, was distributed to members of both societies between February and April 2025. The 22‐item questionnaire assessed institutional characteristics, transition practices, perceived barriers and improvement measures. Responses were analysed descriptively and compared according to the reported presence of an institutional transition programme.

Results

Overall, 328 responses were analysed. A transition programme was reported to be available in the country of practice by 123 respondents (37.5%). Respondents from institutions with transition programmes reported earlier transition initiation (median 16 vs. 17 years) and more frequent structured practices, including joint paediatric–adult consultations (73.7% vs. 27.1%). The highest‐rated barriers were lack of multidisciplinary teams, limited adult neurology capacity and difficulty accessing adult neurology services. Key improvement priorities included joint consultations, national recommendations, specialised care networks and dedicated transition coordination. Satisfaction with current transition practice was low; only 7.9% of respondents reported complete satisfaction.

Conclusions

Transition of care for paediatric‐onset neurological disorders in Europe remains heterogeneous. Although core elements of effective transition are widely recognised, implementation is limited by organisational and system‐level barriers. Coordinated strategies are needed to support structured, patient‐centred transition pathways.

1. Introduction

Transition from paediatric to adult care represents a crucial step in the management of young people with chronic neurological disorders. An effective transition process can promote continuity of care, facilitate coordination between paediatric and adult healthcare services, and support young people in developing autonomy and self‐management of their disease. For the purposes of this study, a transition programme (TP) was defined as an organised and planned pathway supporting preparation for transfer from paediatric to adult care, the transfer process and early continuity in adult services, in line with established transition guidance [1]. Such a programme may comprise several components: early preparation, coordination between paediatric and adult teams, structured transfer of medical information and follow‐up after transfer. A single isolated intervention, for example, one joint consultation, was not considered sufficient to constitute a TP unless embedded within a broader structured pathway. Structured TPs have been associated with improved health literacy, greater patient engagement and better management of adolescence‐specific issues such as relationships, employment, driving and lifestyle choices [2]. However, transition can be particularly challenging in paediatric neurology. Many paediatric neurological disorders (PND) are rare, complex and lifelong conditions that often require highly specialised care. In addition, many patients have neurodisability or intellectual disability, which may further increase the complexity of transition and require coordinated multidisciplinary support. Differences in the organisation, resources and expertise of the healthcare system between paediatric and adult services may further complicate this process. Consequently, some patients continue to receive paediatric care into adulthood, and structured transition pathways remain inconsistently implemented [3].

A recent scoping review conducted by members of the Young European Paediatric Neurology Society (YEPNS) and EPNS Guidelines Committees found few published guidelines on transition protocols for PND in Europe [4]. Although recommendations exist for transitions in chronic neurological disorders, their implementation and effectiveness are limited. To address this gap, EPNS and the European Academy of Neurology (EAN) formed the EPNS/EAN joint Task Force on Transition from Childhood to Adulthood. As a first step, the Task Force developed a survey to describe current transition practices across Europe from the neurologists' and other healthcare professionals' perspectives, and to identify perceived barriers and unmet needs.

The primary objective of this study was to describe current transition practices from paediatric to adult care for paediatric‐onset neurological disorders across Europe using a cross‐sectional survey. Secondary objectives were to compare practices between institutions with and without an established TP, to identify perceived barriers to effective transition and to explore measures considered important for improving transition care.

2. Materials and Methods

2.1. Survey Development

The questionnaire was developed by members of the EPNS/EAN Task Force on Transition from Childhood to Adulthood. The Task Force included paediatric neurologists and adult neurologists, bringing complementary expertise in paediatric‐onset neurological disorders, adult neurology care, transition‐related clinical practice and guideline development. The content of the survey was guided by key transition literature available at the time of questionnaire development, including general transition guidance and neurology‐specific transition literature, together with the clinical experience of the EPNS/EAN Task Force [1, 2, 5, 6, 7, 8, 9]. An initial item list was drafted to cover institutional characteristics, availability and organisation of TPs, timing and structure of transition, perceived barriers and potential measures to improve transition care. The draft questionnaire was reviewed during two virtual Task Force meetings and subsequently refined through written email correspondence. During this process, items were revised for clarity, clinical relevance, completeness and avoidance of duplication. Suggested changes were incorporated until agreement was reached on the final version. No formal Delphi process was undertaken. The final questionnaire consisted of 22 items and is provided in Appendix S1.

2.2. Study Design and Participants

A cross‐sectional, web‐based survey was conducted to assess current practices related to the transition from paediatric to adult care for patients with PND in Europe. Eligible participants were members of the EPNS and the EAN, including paediatric and adult neurologists, as well as other healthcare professionals involved in the care of young people with paediatric‐onset neurological disorders. The questionnaire was distributed electronically via SurveyMonkey to members of the EAN and EPNS.

2.3. Survey Administration and Data Extraction Procedures

Invitations to participate were sent to members of the EAN and EPNS. The survey was open between February and April 2025, with two reminders sent to encourage participation. Data were exported from the SurveyMonkey platform for analysis, with incomplete responses retained where applicable for descriptive purposes. Since not all respondents completed every item, analyses were conducted using available‐case data. Therefore, denominators vary across results according to the number of participants who answered each question.

2.4. Statistical Analysis

Data were analysed primarily descriptively. Categorical variables were summarised as frequencies and percentages, while continuous or ordinal variables were summarised as medians with interquartile ranges (IQRs), as the data did not meet the assumptions of normality. Sociodemographic and professional characteristics were summarised for the whole sample and according to whether respondents worked in institutions with or without a TP. These groupings were used to describe patterns in reported practices and perceptions. Exploratory comparisons of transition‐related practices between respondents from institutions with and without a TP were assessed using the Chi‐squared test or Fisher's exact test for categorical variables and the Mann–Whitney U test for continuous or ordinal variables, as appropriate. Comparisons regarding perceived barriers and measures to improve transition care were considered exploratory and were intended to identify patterns in responses rather than establish causal associations. Because multiple Likert‐scale items were assessed, p‐values for these comparisons were adjusted using the Holm method.

All statistical analyses were conducted using SPSS (IBM Corp., Armonk, NY, USA). Where exploratory comparisons were performed, two‐sided tests were used with a significance level of p < 0.05.

2.5. Ethical Considerations

Participation in the survey was voluntary, and responses were collected anonymously.

No identifiable personal data were collected. According to institutional policies regarding anonymous surveys of healthcare professionals, formal ethical approval was not required. This approach is consistent with applicable regulations for non‐interventional survey‐based research involving healthcare professionals.

3. Results

3.1. Socio‐Demographic Characteristics of the Sample

A total of 368 survey entries were recorded. After exclusion of 40 fully incomplete responses, 328 responses were included in the analysis. Among respondents who progressed beyond the initial survey page, the completion rate was 73%. Because the survey was distributed through professional societies and the total number of recipients who viewed the invitation could not be determined, a formal response rate could not be calculated.

Table 1 presents the main socio‐demographic characteristics of the survey participants (n = 328). The median age of respondents was 47 years (IQR = 20), and most respondents were women (65.2%). The most frequently represented countries of practice were Italy (7.6%) and Germany (6.0%). The distribution of responses by country is shown in Figure 1. The sample included both paediatric and adult neurology perspectives: 162 respondents (49.4%) were paediatric neurologists, 131 (39.9%) were adult neurologists, and 35 (10.7%) reported other professional roles. Most participants worked in institutions specialised in a particular PND or group of disorders (62.5%). Regarding institutional types, 38.1% reported working in facilities serving both paediatric and adult populations. A TP from paediatric to adult care in PND was reported to be available in the country of practice by 37.5% of respondents.

TABLE 1.

Sociodemographic and professional characteristics of the respondents.

	Whole sample	Institution without TP	Institution with TP
Participants, n (%)	328 (100.0)	177 (100.0)	118 (100.0)
Age (median, IQR)	47 (20)	44 (18)	49 (20)
Gender, n (%)
Female	214 (65.2)	118 (66.7)	72 (61.0)
Male	111 (33.8)	58 (32.8)	44 (37.3)
Diverse	2 (0.6)	0 (0.0)	2 (1.7)
Other	1 (0.3)	1 (0.6)	0 (0.0)
Country of practice, n (%)
Italy	28 (7.6)	13 (7.3)	12 (10.2)
Germany	22 (6.0)	11 (6.2)	9 (7.6)
Romania	20 (5.4)	12 (6.8)	4 (3.4)
United Kingdom	17 (4.6)	5 (2.8)	11 (9.3)
Belgium	16 (4.3)	9 (5.1)	6 (5.1)
Portugal	14 (4.3)	10 (5.6)	2 (1.7)
Occupation, n (%)
Adult neurologist	131 (39.9)	73 (41.2)	41 (34.7)
Paediatric neurologist	162 (49.4)	84 (47.5)	67 (56.8)
Other	35 (10.7)	20 (11.3)	10 (8.5)
Type of Institution, n (%)
Adult Institution	87 (26.5)	46 (26.0)	27 (22.9)
Paediatric Institution	116 (35.4)	63 (35.6)	44 (37.3)
Institution serving both paediatric and adult populations	125 (38.1)	68 (38.4)	47 (39.8)
Institution specialised in a neurological disorder, n (%)
Not specialised	123 (37.5)	55 (31.1)	57 (48.3)
Specialised	205 (62.5)	122 (68.9)	61 (51.7)
Transition programme in country of practice, n (%)
Yes	123 (37.5)	33 (18.6)	78 (66.1)
No	205 (55.7)	130 (73.4)	28 (23.7)
I don't know	0 (0.0)	14 (7.9)	12 (10.2)
Member of an ERN, n (%)
Yes	77 (23.5)	63 (18.6)	38 (32.2)
No	251 (68.2)	144 (81.4)	80 (67.8)

Note: Denominators vary across characteristics because of missing responses and because some variables were calculated using available responses for that specific item. Percentages are presented as provided in the descriptive analysis. Institutional TP groups include respondents who provided information on institutional TP status.

Abbreviations: ERN, European Reference Network; TP, transition programme.

FIGURE 1.

Geographic distribution of survey responses by country.

3.2. Reported Transition Practices in Institutions With and Without a TP

Table 2 summarises reported transition process characteristics among respondents working in institutions with and without a TP. A total of 296 participants provided information on transition practices.

TABLE 2.

Transition process characteristics in institutions with and without a transition programme.

Transition‐related variables	Whole sample	Institution without TP	Institution with TP	p
Participants, n (%)	296 (100.0)	177 (100.0)	118 (100.0)
Age when transition starts at the institution (median, [IQR])	17 (2)	17 (2)	16 (3)	< 0.001 a
Age when it should start according to the respondent (median, [IQR])	16 (2)	16 (2)	16 (3)	0.019 a
Age at which the transition is completed at the institution (median [IQR])	18 (0)	18 (0)	18 (0)	0.096 a
Joint consultations, n (%)
Yes	145 (44.2)	48 (27.1)	87 (73.7)	< 0.01 b
No	158 (48.2)	115 (65.0)	23 (19.5)
Number of consultations, n (%)
1–2	158 (48.2)	70 (39.5)	75 (63.6)
3–4	16 (4.9)	4 (2.3)	9 (7.6)
> 4	5 (1.5)	2 (1.1)	3 (2.5)
Other	123 (37.5)	87 (49.2)	23 (19.5)
Transmission of medical information, n (%)
In‐house electronic medical records	129 (39.3)	62 (35.0)	55 (46.6)
Post	33 (10.1)	22 (12.4)	10 (8.5)
Telephone	7 (2.1)	4 (2.3)	2 (1.7)
Medical records sent directly to the adult provider	61 (18.6)	29 (16.4)	24 (20.3)
No transfer	20 (6.1)	15 (8.5)	2 (1.7)
Other	37 (11.3)	23 (13.0)	14 (11.9)
Should there be follow‐up after the transition, n (%)
Yes	148 (45.1)	38 (21.5)	50 (42.4)	< 0.001 b
No	76 (23.2)	82 (46.3)	34 (28.8)
Not applicable	63 (19.2)	63 (19.2)	23 (19.5)

Note: Denominators vary across items because analyses were conducted using available‐case data.

Abbreviation: TP, transition programme.

^a Mann–Whitney U test.

^b χ² test.

Respondents from institutions with a TP reported an earlier median age for initiation of the transition process than those from institutions without a TP (16 vs. 17 years). Respondents from institutions with a TP also tended to report a slightly earlier age at which transition should ideally begin. The reported age at which transition was completed was similar across groups.

Joint consultations between paediatric and adult neurologists were reported more frequently in institutions with a TP (73.7%) than in those without a programme (27.1%). Descriptive differences were also observed in the reported numbers of consultations, in the methods used to transfer medical information to adult services, and views regarding follow‐up after transition to adult care.

3.3. Barriers, Perceived Needs and Satisfaction With Current Transition Practice

Table 3 presents participants' perceptions regarding barriers to transition and measures that may improve the transition process. Barriers were rated on a four‐point Likert scale, and proposed improvement measures were rated on a five‐point Likert scale, with higher scores indicating stronger agreement or greater perceived importance. Results are presented as medians and IQRs for the whole sample and, descriptively, according to whether respondents reported working in institutions with or without a TP.

TABLE 3.

Perceived barriers to transition and measures to improve transition of care.

Factors	Whole sample	Institution without TP	Institution with TP	p a
Participants, n (%)	279 (100.0)	177 (100.0)	118 (100.0)
Barriers (median [IQR])
Lack of a multidisciplinary team	3 (1)	3 (1)	3 (2)	< 0.001
Lack of communication between adult and paediatric teams	3 (2)	3 (1)	3 (2)	< 0.001
Limited capacity of adult neurologists	3 (2)	3 (1)	3 (2)	0.913
Limited willingness of adult neurologists	2 (1)	3 (1)	3 (2)	< 0.001
Difficulty in obtaining timely appointments in the adult neurology system	3 (1)	3 (1)	3 (2)	0.24
Difficulty in obtaining paediatric medical records	3 (1)	2 (1)	2 (1)	0.28
Lack of adapted clinical settings for young adults with special needs in the adult system (e.g., patients with autism, intellectual disability, behaviour disorders or those in wheelchairs)	3 (1)	3 (1)	3 (1)	0.50
Complexity of paediatric multi‐organ systemic disorders	2 (2)	3 (1)	3 (1)	0.60
Parents/caregivers' preference to remain in paediatric clinic	3 (1)	3 (1)	3 (1)	1.00
Lack of locally established transition programme	3 (1)	4 (1)	3 (1)	1.00
Lack of financial support (e.g., coordinator position) for transition programmes	3 (1)	3 (1)	3 (1)	1.00
Lack of awareness for the need and implementation of transition programmes	3 (1)	3 (1)	3 (1)	< 0.001
Scarce education/training in transition	3 (1)	3 (1)	3 (1)	< 0.001
Needs
Financial support	3.5 (3)	4 (3)	3 (3)	0.064
Joint consultations between adult and paediatric neurological teams	5 (2)	5 (1)	4 (2)	0.154
Implementation of national recommendations about paediatric transition to the adult neurology care system	4 (2)	4 (2)	4 (3)	0.162
Establishment of a network of specialised care, including physicians who care for adolescents and young adults with neurological disorders	4 (2)	4 (2)	4 (3)	0.315
A dedicated coordinator responsible for transition	4 (2)	4 (2)	4 (3)	0.332
Introducing transition courses in the training programmes for child and adult neurologists	4 (2)	4 (2)	3 (2)	0.393
Including the patient's and their caregiver's views and preferences in the planning of transition	4 (2)	4 (2)	4 (1)	0.393
A transition protocol	4 (2)	4 (2)	4 (2)	0.530

Note: Denominators vary across items because analyses were conducted using available‐case data.

Abbreviation: TP, transition programme.

^a Mann–Whitney U test for two independent samples. p‐values were adjusted for multiple comparisons using the Holm method.

Across the whole sample, the highest‐rated barriers included lack of a multidisciplinary team, limited adult neurology capacity, difficulty obtaining timely appointments in adult neurology services, lack of adapted adult‐care settings for young adults with special needs, lack of financial support and scarce education or training in transition. Respondents also rated several measures as highly important for improving transition of care, including financial support for TPs, joint consultations between paediatric and adult neurology teams, national transition recommendations, specialised care networks, dedicated transition coordination, transition protocols, transition‐focused education and inclusion of patients' and caregivers' perspectives in transition planning.

A visual representation of respondents' satisfaction with the current transition process is shown in Figure 2. Of the 265 participants who responded to this item, 105 (39.6%) reported being partly satisfied, 84 (31.7%) reported being less satisfied, and 55 (20.8%) indicated they were not at all satisfied. Twenty‐one respondents (7.9%) reported being completely satisfied.

FIGURE 2.

Distribution of respondents' satisfaction with the current transition process.

Among participants working in institutions with a TP (n = 107), the distribution of satisfaction with the programme implemented in their institution is shown in Figure 3. Overall, satisfaction with existing TPs was modest. Only a small proportion of respondents reported being completely satisfied, while the largest group reported being partly satisfied.

FIGURE 3.

Distribution of respondents' satisfaction with the transition programme implemented in their institution.

4. Discussion

Advances in diagnosis, supportive care and disease‐specific therapies have increased survival and the need for long‐term follow‐up in many paediatric‐onset neurological disorders. As a result, more young people with chronic neurological conditions now reach adulthood and need ongoing neurological care. Rare diseases, which are mostly genetic and begin in childhood, are estimated to affect up to 6% of the global population [10]. This has led to an increasing number of individuals requiring lifelong neurological care. Adult neurologists must now manage more complex paediatric‐onset conditions. Without structured transition pathways and targeted training, many patients continue to receive paediatric neurological care into adulthood.

In this context, the present survey provides an overview of current clinical practices for paediatric‐onset neurological disorders across Europe and highlights several important findings. First, structured TPs are not consistently implemented across institutions. Second, respondents from institutions with established TPs more often reported earlier initiation of transition and more structured transition‐related practices, such as joint consultations between paediatric and adult neurologists. Third, respondents highlighted key organisational barriers to effective transition, including a lack of multidisciplinary resources, insufficient communication between paediatric and adult services, and limited capacity in adult neurology services.

4.1. Current Practices and Availability of Transition Programmes

Survey respondents were mostly mid‐career clinicians, with a majority being female and many paediatric neurologists. Most were based in Europe, but some participants came from outside Europe, providing a broader perspective. Most respondents worked in specialised centres focused on specific neurological disorders. More than one‐third worked in institutions that treat both paediatric and adult patients, suggesting a structural capacity for transitional care. However, only about one‐third reported a national TP from paediatric to adult care, highlighting the limited availability of structured transition pathways across Europe. This is consistent with previous studies, including those in epilepsy and other neurological conditions, which report limited availability and inconsistent implementation of TPs, despite growing awareness of their importance [11, 12, 13].

The distribution of respondent and institutional characteristics provides context for interpreting the reported transition practices. Programme availability may be influenced by local initiatives, organisational priorities, available resources and healthcare‐system structure.

Overall, these findings show that some structural capacity exists. However, the implementation of TPs is inconsistent and often relies on local initiatives rather than systematic planning.

4.2. Heterogeneity of Practices

TPs across Europe appear to have been largely developed through local initiatives rather than through systematic, policy‐driven implementation. This is reflected in the substantial heterogeneity observed not only between countries but also across centres within the same healthcare system. In the present study, variability was observed across countries in the timing, organisation and delivery of transition of care. Variation in reported transition ages is expected, given differences in definitions of adulthood and eligibility for adult neurological care across healthcare systems. Most respondents considered 16 years of age an appropriate time to initiate transition, while acknowledging that, in practice, transition often begins even later. This time frame is later than that generally recommended in existing transition recommendations, which advocate initiating transition planning in early adolescence (approximately 12–14 years) [1, 7]. Notably, transition should not be viewed simply as the administrative transfer of care. Instead, it is a gradual process that involves preparation, readiness assessment and a progressive shift of responsibility to the young person [14]. In this context, the reported timing highlights the importance of structured preparation during mid‐to‐late adolescence, so that transfer to adult care occurs as part of a planned process rather than as an isolated administrative step.

Importantly, participants from institutions with and without a structured TP reported different transition initiation ages. This pattern is consistent with the view that formal transition pathways may support earlier preparation for transfer to adult care. Institutions with established TPs more often reported structured practices, including more frequent joint consultations and follow‐up after transfer to adult care. These findings are consistent with previous evidence indicating that structured and well‐coordinated TPs are essential for ensuring continuity and quality of care during the transfer from paediatric to adult services [11, 15].

In addition to variability in timing and structure of transition, we observed considerable differences in how medical information is transferred between paediatric and adult services. In‐house electronic medical records were common, but many respondents used less standardised methods, such as postal communication or sending records directly to the adult provider. Some respondents indicated that medical information is not consistently transferred, raising concerns about continuity of care and patient safety, especially for young individuals with complex neurological conditions who need follow‐up. These findings suggest that the transfer of critical clinical information may remain inconsistent and depend primarily on local infrastructure rather than on standardised protocols.

Taken together, these findings highlight the need for harmonised yet adaptable transition frameworks across Europe. Existing recommendations emphasise early planning, multidisciplinary coordination and structured communication pathways [1, 7, 16]. However, our results show that these components are not consistently implemented in clinical practice. Future efforts should focus on defining minimum standards for transition care. At the same time, there must be flexibility for differences in healthcare systems, resources and organisational structures.

4.3. Barriers to Effective Transition of Care

Barriers to effective transition have been widely reported in the literature [3, 5, 17, 18, 19, 20], and related barriers were identified in the present survey. As reported by respondents, the highest‐rated barriers were organisational and system‐level factors, including a lack of multidisciplinary teams, insufficient communication between paediatric and adult services, limited capacity within adult neurology and the absence of locally implemented TPs. A recent survey on paediatric‐to‐adult transitional medical care among members of the Japanese Society of Neurology provides a useful non‐European comparator, reporting challenges such as limited knowledge related to developmental disorders, lack of support systems, communication difficulties, unfamiliarity with PND and limited relevant information [21]. Taken together, these findings suggest that several barriers to transition care are shared across different healthcare systems.

Some variation in perceived barriers was observed between respondents from institutions with and without a TP. Barriers related to coordination and system organisation, such as a lack of multidisciplinary teams, limited communication between services, limited willingness of adult neurologists and a lack of awareness regarding TPs, tended to receive different ratings across groups. These patterns may reflect differences in local service organisation, exposure to transition‐related challenges or the way TPs are implemented in practice. They also suggest that many of the challenges associated with transition are linked to organisational factors and may therefore be modifiable. Collectively, the barriers identified in this study can be broadly grouped into structural (e.g., resource limitations and limited adult neurology capacity), organisational (e.g., communication gaps and lack of coordinated care pathways) and individual (e.g., training gaps and awareness) domains. This highlights the need for coordinated multi‐level interventions to improve transition care.

Although respondents clearly identified numerous barriers and regarded potential improvements as highly important, structured TPs remained limited in our sample. This indicates a gap between recognition and implementation; despite awareness, key elements such as joint consultations, structured protocols and multidisciplinary coordination were not consistently implemented. Barriers appear to stem more from structural, organisational and resource constraints than from a lack of understanding. This aligns with previous reports that, despite guidelines and transition models, many adolescents do not receive adequate transition support, and implementation remains limited [22]. Variations between institutions with and without a TP may also point to unequal access to structured transition care, likely influenced by local healthcare resources.

Structural challenges related to infrastructure, funding and access to specialised adult care were also commonly reported, along with gaps in education and training. Many paediatric‐onset neurological disorders are rare and require specialised expertise that may not be readily available in adult neurology services. As a result, some patients may, in practice, become ‘orphan’ patients within the adult system, with limited access to clinicians experienced in their condition. This reflects a broader gap in adult care for paediatric‐onset rare diseases, where appropriate services are often lacking [23]. In contrast, limited willingness among adult neurologists received lower agreement ratings compared with other barriers, suggesting that difficulties in transition are more likely related to system‐level constraints than to individual clinician attitudes.

These barriers may help explain the relatively modest satisfaction levels reported by respondents, with only a small proportion indicating full satisfaction with current transition practices. Importantly, satisfaction with the transition of care remained modest even among respondents working in institutions with established TPs. Although these institutions reported more structured practices, most respondents still expressed only partial satisfaction. This implies that having a TP alone may not be sufficient to ensure high‐quality transition care, and that such programmes likely differ in the quality of their development and implementation. Furthermore, it highlights the need for additional studies that focus not only on the presence but also on the effectiveness of TPs. Developing standardised methods for monitoring and periodically evaluating transition processes and outcomes may help identify gaps in care and support ongoing improvement [6].

Some patient groups may face additional challenges during the transition process. Many neurological conditions are associated with varying degrees of neurodisability, meaning that a substantial proportion of young people require ongoing caregiver involvement, adapted communication, and coordinated support across healthcare and social services. For these individuals, transition is often more complex and particularly vulnerable to fragmentation in the absence of structured support. These challenges may be even greater for those with limited social support or fewer resources, who may experience additional difficulties navigating adult healthcare systems. Although these aspects were not specifically examined in this study, they further underscore the need for comprehensive, multidisciplinary models of transition of care.

4.4. Measures to Improve Transition of Care

Respondents rated all proposed measures as important for improving the transition process. They most often cited joint consultations between paediatric and adult neurology teams, implementation of national recommendations, development of specialised care networks and use of structured transition protocols. Education and training were also emphasised, with many supporting the addition of transition‐focused content to neurologist training programmes. Respondents also supported involving patients and caregivers in planning. These findings show broad agreement on essential elements required for effective transition of care, spanning organisational, educational and patient‐centred aspects. Among these measures, joint consultations were strongly supported by respondents and may facilitate early contact with adult services before transfer. This aim can be achieved through different models. In line with NICE guidance, young people should have the opportunity to meet a practitioner from adult services before transfer, which may take the form of joint appointments, joint clinics or paired involvement of practitioners from paediatric and adult services [1]. Therefore, joint consultations should be interpreted as one possible model, rather than as a universally feasible requirement. This is particularly relevant when transfer occurs between different institutions or healthcare systems, where joint consultations may be difficult to organise.

As this study highlights, recognising priorities does not always lead to routine practice. To bridge this gap, stakeholders must coordinate efforts, dedicate adequate resources and foster strong organisational support. We recommend not only developing clear transition of care recommendations but also actively establishing robust support mechanisms and allocating system‐level resources to ensure their effective implementation in daily practice. In this context, this study underscores the need to define minimum standards for transition of care in paediatric neurology. These could include early initiation of transition planning, opportunities for contact with adult services before transfer, structured transfer of medical information and access to multidisciplinary support. Digital health solutions may also support these processes. Shared electronic health records, structured digital transition tools and patient‐held records could facilitate communication between paediatric and adult services and improve continuity of care. Such standards should be adaptable to different healthcare systems while ensuring a consistent level of care [1].

This aligns with recent evidence suggesting that clinicians value transition frameworks and that such approaches may improve the quality and safety of transition processes [24].

This survey provides an up‐to‐date overview of transition practices for paediatric‐onset neurological disorders across Europe and may serve as a useful baseline for future service development. It may also contribute to the ongoing work of the EPNS/EAN Task Force on Transition in developing practical transition recommendations. Future research should include patient and caregiver perspectives, as well as longitudinal and interventional studies to better understand outcomes and evaluate structured TPs. More detailed country‐level analyses may also help identify system‐specific facilitators and barriers.

5. Limitations

This study has several limitations that should be considered when interpreting the findings. First, the survey was disseminated via professional societies, thereby introducing the potential for selection bias among clinicians with a greater interest in or expertise in transition of care, or those in specialised centres. Consequently, the findings may overestimate the availability of structured transition practices and awareness of transition‐related issues. In addition, general neurology services and less specialised settings may be underrepresented. Second, country representation was uneven, so responses may not fully reflect national practices or differences across healthcare systems. Third, because the survey was disseminated through professional societies, a formal response rate could not be calculated. Fourth, data were self‐reported and may reflect respondents' perceptions rather than independently verified institutional practices. In addition, comparisons between institutions with and without TPs should be interpreted descriptively, as they may be influenced by differences in respondent composition, local service organisation, and how TPs are defined or implemented. Fifth, the assessment of barriers and factors considered important for improving transition of care was based primarily on predefined response options. Although free‐text fields allowed respondents to add context and were considered when interpreting the findings, they were intended to complement the structured items rather than to support a separate qualitative analysis; therefore, less frequent or context‐specific issues may not have been explored in depth. Future studies using dedicated qualitative or mixed‐methods approaches, including systematic analysis of open‐ended responses, may help identify additional barriers and improvement measures. Finally, the survey excluded patient and caregiver perspectives, which are essential components of transition care.

6. Conclusions

This work represents a first step in the EAN–EPNS Task Force's joint efforts to address the transition from paediatric to adult neurological care. It provides an overview of current transition practices across Europe and highlights key gaps.

Structured TPs remain inconsistently implemented, and transition practices vary between institutions. Although clinicians recognise the importance of early planning, multidisciplinary collaboration and patient‐centred care, these principles are not yet consistently translated into routine practice. Institutions with established TPs more often report structured and coordinated approaches, including earlier initiation of transition and greater use of joint consultations. However, organisational barriers, limited resources and insufficient communication between services continue to hinder effective implementation. Clinicians broadly agree on measures to improve transition of care, such as developing national recommendations, specialised care networks and better education and training.

These data may help in developing a minimum set of transition principles applicable across countries, healthcare systems and neurological disorders. The Task Force's ongoing work will build on these findings to support the development of pragmatic, broadly applicable recommendations to improve transition of care in paediatric neurology.

Author Contributions

Dana Craiu: conceptualization, project administration, investigation, methodology, data curation, visualization, writing – review and editing. Cristina Cazacu: conceptualization, investigation, writing – original draft, writing – review and editing, visualization, methodology, data curation, project administration. Maria T. Papadopoulou: conceptualization, methodology, writing – review and editing. Ming Lim: conceptualization, methodology, writing – review and editing. Kevin Rostasy: conceptualization, methodology, writing – review and editing. Anna C. Jansen: conceptualization, methodology, writing – review and editing. Leena M. Haataja: conceptualization, methodology, writing – review and editing. Ilona Anna Kopyta: conceptualization, methodology, writing – review and editing. Kristl G. Claeys: conceptualization, methodology, writing – review and editing. Guido Rubboli: conceptualization, methodology, writing – review and editing. Chiara Ferrazzoli: conceptualization, methodology, writing – review and editing. Ronan McGinty: conceptualization, methodology, writing – review and editing. Maria Roberta Cilio: conceptualization, methodology, writing – review and editing. Maria Lolich: conceptualization, methodology, writing – review and editing, formal analysis, software. Dimitrios Zafeiriou: conceptualization, methodology, writing – review and editing. Nadia Bahi‐Buisson: conceptualization, methodology, writing – review and editing. Elena Moro: writing – review and editing, conceptualization, methodology. Gereon R. Fink: conceptualization, methodology, writing – review and editing. Thomas Berger: supervision, conceptualization, writing – review and editing, methodology.

Funding

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Appendix S1: Survey questionnaire developed by the EAN–EPNS Task Force on Transition from Childhood to Adulthood.

Data Availability Statement

The anonymised data underlying this paper are available from the corresponding author upon reasonable request.