The transitioning process entails many changes and difficulties of which clinicians, patients, and families can be more or less aware. Although some guidelines exist in many countries (e.g., the NICE guidelines in the UK), their efficacy and generalizability have not yet been accurately evaluated. In Italy, only two studies have assessed the situation, one at the single province level (i.e., Modena) [22], and one at the regional level for the Lombardy Region [21]. The latter involved a total of 18 services in an exploratory study investigating the health care management and continuity for young adults with ADHD. In this region, regional ADHD territorial services are accredited in regional hospitals, and therefore linked to CAMHS, and often deal with the transition process of ADHD patients towards a shift in care by AMHS. Nonetheless, what emerged from Reale and colleagues is that in 2018, out of these 18 centers, only four reported having a protocol to manage the transition process, and none of those protocols were specific for ADHD patients [21]. Moreover, while it seems that previously hospitalized adolescents have a 50% chance of being successfully transferred to an AMHS and that higher engagement was witnessed within the first two years [23], this rate was limited to a narrow territory (i.e., the Province of Modena). No studies considered the professionals' opinion, nor did they cover the whole national territory. Additionally, the factors contributing to a successful transition process in the country are unknown.
The present study aimed to draw a picture of the current state of the transitioning process in Italy. We asked the professional figures involved (i.e., CAMHS and AMHS workers) how the transitioning process happens and to describe the issues they perceive as problematic, along with their needs. From the clinicians' point of view it is essential to delineate the services' functioning and guarantee the availability of adequate services that are sensitive to patients' needs. We achieved an acceptable geographical representation, with a total of seventy-seven respondents (42 working in CAMHS and 35 in AMHS) from 18 of the 20 Italian regions.
The analysis of the survey responses drew an interesting picture. While 74% of the CAMHS reported following transitioning patients in the previous year, only 43% of the AMHS stated the same. This means that many patients still get lost in the process. Some of these patients are sent to private psychiatrists or psychologists, falling out of the public health system nonetheless. In other cases, adult patients continue to be treated by CAMHS (in our sample, this happened for 210 patients, distributed in 40% of the CAMHS). Moreover, the ideal age range for transitioning would be between 17 and 19 years of age, while the time window actually needed is wider, involving patients between 15 and 21 years of age. Even when the transition is completed by the 18 years of age mark, the gap with what would be defined by protocols is considerable.
While these data suggest that organizational problems affect day-to-day transition process management, many more factors that hinder a successful transition are consciously reported as unmet needs or desired changes. Such observations largely overlap with the first three dimensions reported by Price and colleagues [13]. First, the lack of professionals' preparation, transition planning, protocols, and parallel care of the services. In this domain, we also included the absence of training and competencies in adult services. Secondly, the lack of appropriate adult services. The AMHS are aware of the need to potentiate the services they provide, such as rehabilitation pathways, and access to pharmacological treatment. Third, the limitations due to the lack of resources and organizational problems. Both CAMHS and AMHS professionals strongly felt this theme. Interestingly, what was highlighted in this domain is the need to develop strategies to efficiently follow the transition with the available resources rather than to increase the resources.
Only one AMHS raised the issue of communicating with the families. When describing how they arranged the meetings between services, only 21 AMHS and 28 CAMHS declared that they involve the patients' families in the process. The families had, on the other hand, a central role in other studies [13, 24]. The scarce consideration of families in the Italian transition organization may contribute to the lack of a smooth passage, given that these patients are still vastly dependent on their parents' support.
Moreover, a theme that often emerged was the lack of adequate training for professionals working in the AMHS. Once again, from the opposite viewpoint, more than half of those same professionals reported that they did not receive enough adequate information (only 48% said that they did). Another observation in this respect is that only 61% of the CAMHS that sent patients to AMHS in the previous year think it would be helpful to actively involve both services in the transition phase. Having formal guidelines to smooth the communication between the two parties in the process might also help improve communication and outcomes.
This observation sheds attention on the need for specific protocols to address the needs of the ADHD population in the transition phase. We asked the 21 services that reported having a protocol whether they could send it to us to investigate whether guidelines already exist, need improvement, or if there is a complete lack of efficient protocols. Notably, while in 2018, in the Lombardy region [21], no pediatric centers were reported to have a specific protocol for one of the neurodevelopmental disorders, from our survey, it emerged that three pediatric centers do (2 within the same region). Nonetheless, they regard Autism Spectrum Disorder, Schizophrenia, and Behavioral Disorders, while no protocol specific to ADHD exists. Many more centers have a non-specific protocol (n = 10 CAMHS, n = 11 AMHS) or do not have a protocol (76% of CAMHS, 78% of AMHS).
We received the full version of six protocols, four from CAMHS and two from AMHS. All were characterized by the working group's definition, the number of meetings and the corresponding figures involved (i.e., patients, CAMHS, and AMHS specialists), and the criteria to select patients, including the age window. One protocol also included the possibility of defining personalized trajectories based on specific needs. With the available resources, defining individual care paths does not emerge as a priority, as confirmed by the fact that no respondent listed individual needs in future directions. Instead, it would be desirable to have flexible enough guidelines to allow for a certain degree of customization, considering the available assets. In our survey, only when provided space to write notes on the transition process did eight clinicians report more psychological considerations, such as the importance of paying attention to individuality, culture, and personal experiences concerning the care process. While most of these essential points were shared, the degree of detail differed widely. Suffice it to say that some protocols are only 2 to 5 pages long, while others are up to 25 pages long. In the future, the need for a standard protocol should be addressed. We believe that it should fall somewhere in between the existing ones: while short protocols are not detailed enough, excessively long protocols may be complicated to use daily in a reality of scarse resources.
A limitation of this study is the reduced sample size. Although the included services are not expected to differ from the ones that did not participate, reaching a wider number of professionals would have ensured a better representation on the practices adopted at a national level. Moreover, most of the services that took part in the survey are located in large cities, mostly in northern Italy. A limitation that this survey and the results obtained could-should help to overcome. Nonetheless, we think that the merits of this survey's observations are several. First, it constitutes the first attempt to draw a picture of the transitioning patients from the professionals' point of view. It collects practical information and allows a highlighting of needs and desired changes. Moreover, it stands as the starting point for future work. As future steps of the TransiDEA project, the collected protocols will be analyzed in depth. Individual pathways of patients and their clinicians will then be analyzed, leading to the definition of standardized guidelines. To do so, individual stakeholders from across Italy, including patients, parents or caregivers, clinicians from CAMHS and AMHS, and possibly general practitioners [24] will be involved.