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research-article2014
JADXXX10.1177/1087054714560823Journal of Attention DisordersReale et al.
Article
Transition to Adult Mental Health Services for Young People With ADHD
Journal of Attention Disorders 1–8 © 2014 SAGE Publications Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1087054714560823 jad.sagepub.com
Laura Reale1, Maria Antonella Costantino2, Marco Sequi1, and Maurizio Bonati1
Abstract Objective: To investigate the care management and continuity from child to adult mental health service for young adults with ADHD. Method: A questionnaire survey from 18 Regional ADHD Pediatric Centers (RAPC) in Lombardy, Italy, was used to collect data on transition protocols and population served, and to track the pathway of care of ADHD patients once they reached adulthood. Results: Twenty-eight percent of RAPC had transition protocols and 3% of the population annually served were potential referrals to adult service. Of 52 patients who turned 18 years, just over 70% were monitored by the general practitioner, of those 5 with RAPC support. One fifth of patients continued to use mental health services, the majority was still monitored by the RAPC, and only three by services for adult. Conclusion: Managing the process of transition to adult services in mental health care remains a need to be prioritized and better defined for ADHD patients. (J. of Att. Dis. XXXX; XX(X) XX-XX) Keywords ADHD, adult ADHD, health service use
Introduction To date, there is a growing recognition that ADHD is a life span disorder that commonly persists into adulthood, with 2% to 3% of adults population meeting the criteria for ADHD diagnosis (Wilens, Faraone, & Biederman, 2004). Longitudinal studies have shown that as children diagnosed with ADHD move into adulthood, three prospective outcomes can be expected: participants with good functioning not significantly differing from healthy controls; participants (15%) who retained the full diagnosis criteria, with negative clinical evolution to antisocial and/or psychiatric disorders, more often depression, alcohol and drug abuse, and serious antisocial behavior; and a much larger proportion (65%) of participants meeting criteria for ADHD in partial remission, indicating the persistence of some symptoms associated with employment and relationships difficulties, irritability, anxiety, and emotional lability, which often result, however, in significant clinical impairments (Young, 2000). These figures suggest that there is increasing evidence that ADHD disorder leads to a range of various clinical manifestations and outcome into adulthood (Faraone et al., 2000; Wilens et al., 2004), and resulting in the need for care continuity. Studies exploring transition in mental health care show that there are two main different approaches to manage the transition to adult care such as to improve the currently existing interface between services (Paul et al., 2013; Pottick, Bilder, Vander Stoep, Warner, & Alvarez, 2008;
Singh et al., 2010; Woodward, Swigonski, & Ciccarelli, 2012) and to develop new models of youth mental health services (Gilmer, Ojeda, Fawley-King, Larson, & Garcia, 2012; Manteuffel, Stephens, Sondheimer, & Fisher, 2008; Scal, Evans, Blozis, Okinow, & Blum, 1999). Each approach has its advantages, limitations, and resource implications. Determining whether shared planning between services or new services focused on transition are needed should be better evaluated also for ADHD patients, because scant evidence is available on transition processes of these patients from pediatric to adult mental services. National Institute for Health and Clinical Excellence (NICE) guidelines on diagnosis and management of ADHD in children, young people, and adults, propose a pathway for transition based on shared planning between pediatric and adult services. Reassessment at school-leaving age, meetings involving pediatric and adult mental health services, and patients’ and parental involvement in transition planning emerged as key recommendations (NICE, 2008). 1
Laboratory for Mother and Child Health, Department of Public Health, IRCCS-Istituto di Ricerche Farmacologiche “Mario Negri,” Milan, Italy 2 Child and Adolescent Neuropsychiatry Unit, IRCCS Foundation Ca’ Granda-Ospedale Maggiore Policlinico, Milan, Italy Corresponding Author: Laura Reale, Laboratory for Mother and Child Health, Department of Public Health, IRCCS—Istituto di Ricerche Farmacologiche “Mario Negri” 20156 Milan, Italy. Email: [email protected]
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As advocated by this document, it is crucial for young people with ADHD to maintain continuity of mental health care support into adulthood, with potential and different health care ways according to patients’ outcome and needs, and local services’ availability. Although the current Lombardy Regional policy, as well as the more recent National policy, emphasizes the need for a closer cooperation between adult mental health services and Child and Adolescent NeuroPsychiatry Services (CANPS), too, there are no references and specific recommendations or protocols on the process of transition to adult services for people with mental disorders. This fact is probably due to the scarce published evidence on the process, models, and outcomes of transition, also in Italy (Stagi & Di Tommaso, 2009). Indeed, although many agree that transition is as a key component of care, there is little empirical data on which health services can be based. The present study aimed to investigate the health care management and continuity for young adult with ADHD, who crossed the age boundary for pediatric service, and to provide evaluable data on transition protocols, population served, and potential referral rates to adult mental health care, in Lombardy Region context.
Method The Italian Health Care Setting Italian health care is provided free or at a nominal charge through a network of 148 local health units (LHU). Children are assigned to a family pediatrician until they are 6 years old; afterward, the parents can choose to remain with that pediatrician until the child is 14 years old or to register the child with a general practitioner (GP). All adolescents over 14 years of age are assigned to a GP. CANPS are part of the LHU and provide care at the hospital and community level for children and adolescents with neurologic and/or psychiatric and/or neuropsychologic disorders (including developmental disabilities and intellectual disabilities) and for their families. CANPS are multi-professional, comprehensive community services providing diagnosis, treatment, and rehabilitation. They are separate from adult mental health services and work mainly on an outpatient basis and work closely with educational and social services. Since September 2007, Regional ADHD Pediatric Centers (RAPC) have been required to send patient information to the National Registry dedicated to collecting data on pharmacological treatment of ADHD patients aged less than 18 years. Regional health authorities are responsible for the accreditation of the RAPC in regional hospitals, which are linked to the CANPS located in the local communities. The RAPC are therefore the specialized hubs of the CANPS network on ADHD (Bonati & Reale, 2013; Panei et al., 2004).
Sample In the Lombardy Region, with 16.5% of Italian pediatric population, there are 18 RAPC. The data of all RAPC were retrieved from the National ADHD Register using appropriate local data extraction procedures to obtain the list of all patients who turned 18 before January 2012 as well as their demographic and clinical characteristics at the last register update. Fifty-two ADHD participants diagnosed by the RAPC reached the age of 18 from January 2008 to December 2011 and were identified from the database to evaluate who continued to be seen by RAPC beyond the transition boundary, for which reasons, and their current clinical and demographic characteristics; and who was accepted by other services and how the transition process between services occurred.
Transition Questionnaire A literature review on the transition from pediatric to adult mental health services was undertaken through searches of Medline, EMBASE, PsychINFO, The Cochrane Library, and reports and publications from various national health departments. Based on this review, a semi-structured questionnaire was developed, composed of two parts. The first sought information on the RAPC and its organization in year 2011, and specifically requested information on the following: •• number of currently “active” and new cases aged 16 or older; •• whether a transition protocol existed (a copy of any transition protocol was requested); •• whether a specific transition protocol existed for the management of ADHD patients; and •• whether and how pharmacological treatment was prescribed for young adults aged 18 or older. The second part collected information about pathways of care and clinical characteristics for each of the ADHD patients aged 18 or older. The pilot questionnaire was discussed with natural experts working in child and adolescent mental health field external to the project setting to help establish face and content validity. An amended version was developed and was again reviewed, leading to a final semi-structured questionnaire.
Data Collection and Source The head neuropsychiatrists of the 18 ADHD reference centers received a letter explaining the aim of the survey and were asked to complete the questionnaire in consultation with their multidisciplinary team. Three further reminder emails, supplemented by follow-up telephone calls, were
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Reale et al. sent to improve recruitment rates. Single patient data were collected from transition questionnaires completed by clinicians on the basis of clinical medical records. Moreover, we checked these data with those collected in Health Administrative Regional databases to make the study findings derived from the questionnaire survey more complete and reliable. The data sources were regional databases routinely updated for administrative and reimbursement reasons (Clavenna et al., 2013). The databases stored data on services’ use for both the CANPS and the adult mental health services. All data were provided anonymous to study coordination center.
Results RAPC: Service Organization in the Lombardy Region The first part of the transition questionnaire evaluating service organization (referred to the year 2011) was completed by the 18 RAPC. Questionnaire answers showed that, in a sample of 891—388 (43.5%) = “active” cases, 503 (56.5%) = new cases—children and adolescents aged 5 to 17 years who accessed the RAPC during 2011 for a suspect of ADHD, 687 (77.1%) met Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV-TR; American Psychiatric Association [APA], 2000) criteria for ADHD. Thus, the estimated ADHD prevalence in the population accessing RAPC was 0.6%. Three percent of both new cases and “active” cases were adolescents aged 16 or older. Four RAPC had protocols aimed at managing the transition process from pediatric to adult mental health services, none of which was specifically for the ADHD disorder. Of these, two could not be used by ADHD reference services because not suitable for ADHD patients. Moreover, of the four existing protocols, only one considered the evaluation of transition outcomes. On the basis of the collected data and regional mental health service organization, the NICE Guidelines on management of ADHD patients have been further extended with key suggestions that emerged from literature review (Nutt et al., 2007), clinical experience, and expert opinions. This service guidance is summarized in Figure 1.
Adult ADHD Patients: Pathways of Care in the Lombardy Region From the ADHD Register National database, 52 patients who reached the age of 18 before January 2012 were diagnosed and followed up at RAPC joining the study, and clinical information for each of these 52 patients was collected. The Adult ADHD percentage rate, calculated as the number of adult ADHD cases compared with the total number of
patients present in the register for each center, showed wide differences between the centers (median rate = 11.9%; minimum = 3.5%; maximum = 33.3%). The median age was 19.0 years (range = 18-21 years) at the time of the study and 36 patients (85.7%) were male. In all, 76.2% met Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV; APA, 1994) criteria for ADHD Combined Type and 40.5% had at least one comorbid mental health disorder. In all, 64.3% were treated with a combination of pharmacotherapy and behavioral therapy (BT), whereas 30.9% of patients were undergoing treatment with pharmacotherapy only and 4.8% with BT only. As shown in Figure 2, 6% of the study sample was discharged by the RAPC because of good symptoms control and therefore the involvement of adult mental health services was not needed; while 33 of 52 (63%) had not any visit neither at the RAPC nor at an adult mental health services by the age of 18 and for the next 3 years, even though they didn’t discharged. These patients, thus, were followed by the GP alone, with no specialist referral provided by ADHD centers, and access back to specialist services where needed. Of those currently “active” cases (n = 16, 30.2%) in mental health services, eight remained with the ADHD reference center that was already providing them with care, five were monitored by a GP with support from the RAPC, and three by adult mental health services. Of the latter, only one patient was referred to the adult service by the RAPC. Analyzing clinical characteristics of the sample before the age of 18 years, ADHD patients with comorbidity and those treated with pharmacological therapy are more likely to require continuing support from mental health services.
Discussion Mental health care continuity is often not ensured for young patients who continue to suffer pervasive and impairing ADHD symptoms in adulthood. Thus, they fall into a care gap in their adolescent years at the very moment in which they are most likely to need the support of appropriate health care services (Young & Amarasinghe, 2010). In the Lombardy Region, health care for children and adolescents with ADHD is usually provided by either ADHD reference centers or by community CANPS, according to intensity of patient’s clinical needs. Every year, 3% of patients accessed or followed up at the RAPC in Lombardy are 16 years old or older, and will therefore potential referrals requiring transition to adult services. This low rate of adolescent young patients, compared with the annual number of accesses, is consistent with results from the literature and clinical practice data. In the Tuscan Region, for example, Camuffo and Corlito (2011) showed that mental health services had a significant decline in youth accesses, probably related to services organization and to the peculiar
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Figure 1. Transition pathways: Clinical and service guidance.
GP = general practitioner; CANPS = Child and Adolescent NeuroPsychiatry Services.
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Reale et al. ADHD Pediatric Centre 15% Adult Mental Health Services 6% GP (access back if needed) 63%
Discharge 6% GP and Specialist referral 10%
Figure 2. ADHD care at early adult age. GP = general practitioner.
physiological characteristics and natural resistance to care seeking of the adolescent period. In all, 28% of the RAPC had a protocol to manage transition to adult services. Similar rates exist in the United Kingdom, where 23% of mental health services have specific arrangements for service transition (Singh, Paul, Ford, Kramer, & Weaver, 2008) and less in Ireland (10%; McNamara et al., 2014). The existence of protocols, however, does not necessarily ensure that clinical practice adheres to the stated policy. Recent U.K. Government policies have thus emphasized the importance of transition from child to adult services; tools for facilitating transition in practice and indicators to monitor this pathway have been introduced to ensure successful application of policy protocols into practice (Health and Social Care Advisory Service [HASCAS], 2006). Some Australian services have, however, begun to implement youth service models that span the traditional child–adult service divide (McGorry, 2007). Unfortunately, no initiatives were found in the National policies. Moreover, the success of health care service programs in general is largely determined by the public’s (and patients’) attitude toward the condition. With regard to ADHD, public’s misbeliefs and misconceptions (stigmatization) were shown to be an important factor, affecting treatment access, treatment adherence, treatment success, and also the individual’s quality of life (Fuermaier et al., 2012; Mueller, Fuermaier, Koerts, & Tucha, 2012). This study also looks on care of patients with ADHD diagnosed in childhood that reached the age 18 or older. The findings can be summarized as follows: three participants were discharged because of good symptoms controls; and just over 70% (n = 38) were monitored by the GP, of those five with RAPC referral. One fifth of patients continued to use mental health services, the majority was still being followed by the RAPC, and only 3 (6%) by services for adult. These data are consistent and similar with literature’s results. Marcer, Finlay, and Baverstock (2008), in a study involving a group of 78 U.K. community pediatricians,
found that at least 40% of young patients affected by ADHD would need referral to adult services, requiring both medication and other support. Similar referral rates have been shown in Taylor, Fauset, and Harpin’s (2010) study, which, in their sample of young people with ADHD, found that 36% were likely to have ongoing symptoms needing medication and show psychopathological comorbidity, and therefore they require continuing support from adult services, while 50% had good symptom control and could be monitored by the GP alone. In a retrospective study of adult participants diagnosed with ADHD in childhood, the authors found that slightly less than 20% were followed up by adult mental health services (Blasco-Fontecilla et al., 2012). A more recent study reported some similar gaps, showing that all 24 of the adult mental health teams had a transition policy while 20 of the 36 (55%) pediatric services had it. Moreover, in addition to the lack of written protocols, poor communication between child and adult services and the feeling of being ill-prepared for assessing and managing ADHD patients by adult services emerged as main barriers (Hall et al., 2013). As highlighted by other authors, it is not possible to exclude some of the patients, who are not in public specialist care, as 63% from our results continue to suffer alone and/or with their carers but without health care. These people could, however, often continue to make demands on other parts of the health care system at significant cost for themselves and society (e.g., increased usage rates of emergency services, social services, or criminal justice system) or on private care management. Several other factors may contribute to the emerging picture concerning service utilization, including a relative lack of transition services, difficulties for young people in coping with transition, and/or feeling let down by adult services (McCarthy et al., 2009). Moreover, our findings concerning services’ utilization, despite a relative lack of a full outcome evaluation of the transition process due to both the poor number of protocols and no clear and shared transition modalities, are in agreement with the percentage rate of the prospective clinical outcomes expected for ADHD patients who reached the adulthood, especially for those meeting criteria for ADHD in partial remission or with mild disorder (about 65%) that overlapped with the 70% monitored by GP in our sample (Faraone, Biederman, & Mick, 2006). The major concern is that the participants who retain the full diagnosis criteria, probably corresponding to the 21% in our sample, although continued to use mental health services, the majority did not switch to adult services but remained on the ADHD pediatric center care. This issue goes beyond the Italian health care system and the ADHD diagnosis, representing one of the possible transitional trajectories experienced by young people with mental disorders. In particular, young people with ADHD as well as with autism spectrum disorders and emergent personality disorder, who are likely to have
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ongoing problems, often are not referred, because it is believed they would not be accepted, or not accepted by adult services (Lamb & Murphy, 2013). NICE recommended that transition be completed by age 18 which, assuming that 16 would be the youngest age for transition, allows a 2-year window for this to be achieved (NICE, 2008). Once again, despite this, in the Lombardy Region, half of the patients currently undergoing care remain under the CANPS. This issue is not limited to the Italian context: Also in the United Kingdom, for example, whatever the formal cutoff age, many child mental health services continue to follow their patients well past this age due to difficulties in transferring care to adult services (Young, Murphy, & Coghill, 2011). Although this ensures some young patients access to continued care, it is for a limited period and the lack of clarity for both patients and professionals is confusing. Thus, as shown in Figure 1 and based on collected data, NICE guidelines, literature review, and expert opinions, we suggested a clinical and services guidance for a smooth transition and best health care service for young adults with ADHD. The key elements that promote successful transition are the reassessment of all young people with ADHD at school-leaving age, good information transfer shared with parents, patient and clinicians referred to, at least one transition planning meeting, a period of parallel care, and at least one joint meeting to evaluate the transition outcomes. Although Lombardy Region is the most populated and economically important region in Italy, all data are coming from a single country region, and may affect the generalizability and comparability of the reported findings within and between countries.
Conclusion Despite this important limitation, the need of clinical studies leading to a better and evidence-based management of the transition from pediatric to adult mental health services was evident. To our knowledge, this is the first study on this issue in the Italian context and therefore could be used as a good model to investigate other clinical setting in terms of different regional service approaches to the transition process and different psychiatric disorders considered. Policies and protocols addressing health care transition at such a vulnerable age should be developed. Furthermore, transition protocols should be developed jointly by ADHD reference centers, CANPS, adult psychiatric services, and community pediatric and adult mental services to ensure care continuity, and should also take patients’ and parents’ involvement and suggestions into consideration. Last, but not least, it is essential that these protocols be reviewed and evaluated, so that they can be effectively and easily translated into clinical practice. ADHD has just recently been recognized as a lifelong disorder, however, and adult
provision is poor. Simply bridging the transition gap will not address the fundamental problem of how the transition period of young adults with ADHD should be managed. Layman and professional misunderstandings and misinformation about ADHD abound, and may contribute to the differences that exist between child and adult services in the theoretical and conceptual views of diagnosis, cause, and treatment focus (Singh, 2009). There is, therefore, also a clear need for increased multidisciplinary and independent education about ADHD at both undergraduate and postgraduate level (Van Deusen, 2014). Authors’ Note Laura Reale and Maurizio Bonati contributed to this work in terms of conception and design of the study, analysis, and interpretation of data and paper writing. Marco Sequi was involved in data management and analysis, and Maria Antonella Costantino in drafting the manuscript and revising it critically for important intellectual content. All authors have read and approved the final manuscript.
Acknowledgments The authors acknowledge the Italian National Institute of Health: Pietro Panei; Lombardy ADHD Centers: Stefano Conte— Bergamo; Massimo Molteni, Angela Valli—Bosisio Parini, Lecco; Francesco Rinaldi—Breno, Brescia; Paola Effedri, Stefano Guerini—Brescia; Nadia Fteita—Como; Simonetta Oriani, Simona Frassica—Garbagnate, Milan; Ottaviano Martinelli, Davide Villani—Lecco; Ernesta Ricotta—Legnano, Milan; Paola Morosini—Lodi; Valeria Mannino, Claudio Bissoli, Isabella Cropanese, Monica Saccani, Federica Aggio, Paola Olgiati, Vera Valenti, Gaia Oldani—Milan; Umberto Balottin, Daniela Candeloro—Pavia; Corrado Meraviglia— Sondrio; Giorgio Rossi, Cristiano Termine—Varese. Grateful acknowledgment goes to Chiara Pandolfini for language editing this manuscript.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study is part of the “Sharing Diagnostic-Therapeutic Approaches for ADHD in Lombardy” project partially funded by the Lombardy Region (D.G. sanità n.3250, November 4, 2011).
References American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
Downloaded from jad.sagepub.com at BOSTON UNIV on June 4, 2016
7
Reale et al. Blasco-Fontecilla, H., Carballo, J. J., Garcia-Nieto, R., LopezCastroman, J., Alegria, A. A., Basurte-Villamor, I., . . .BacaGarcia, E. (2012). Factors contributing to the utilization of adult mental health services in children and adolescents diagnosed with hyperkinetic disorder. Scientific World Journal, 2012, Article 451205. doi:10.1100/2012/451205 Bonati, M., & Reale, L. (2013). Reducing overdiagnosis and disease mongering in ADHD in Lombardy. British Medical Journal, 347, f7474. Camuffo, M., & Corlito, G. (2011). I percorsi della salute mentale: Da un servizio per l’infanzia e l’adolescenza ad un servizio per gli adulti [Mental health patterns of care: From a child and adolescence servive to an adult service]. Psichiatria dell’infanzia e dell’adolescenza, 78, 340-356. Clavenna, A., Cartabia, M., Sequi, M., Costantino, M. A., Bortolotti, A., Fortino, I., . . .Bonati, M. (2013). Burden of psychiatric disorders in the pediatric population. European Neuropsychopharmacology, 23, 98-106. Faraone, S. V., Biederman, J., & Mick, E. (2006). The age-dependent decline of attention deficit hyperactivity disorder: A meta-analysis of follow-up studies. Psychological Medicine, 36, 159-165. Faraone, S. V., Biederman, J., Spencer, T., Wilens, T., Seidman, L. J., Mick, E., & Doyle, A. E. (2000). Attention-deficit/ hyperactivity disorder in adults: An overview. Biological Psychiatry, 48, 9-20. Fuermaier, A. B., Tucha, L., Koerts, J., Mueller, A. K., Lange, K. W., & Tucha, O. (2012). Measurement of stigmatization towards adults with attention deficit hyperactivity disorder. PLoS ONE, 7, Article e51755. Gilmer, T. P., Ojeda, V. D., Fawley-King, K., Larson, B., & Garcia, P. (2012). Change in mental health service use after offering youth-specific versus adult programs to transitionage youths. Psychiatric Service, 63, 592-596. Hall, C. L., Newell, K., Taylor, J., Sayal, K., Swift, K. D., & Hollis, C. (2013). “Mind the gap”—Mapping services for young people with ADHD transitioning from child to adult mental health services. BMC Psychiatry, 13, Article 186. Health and Social Care Advisory Service. (2006). CAMHS to adult transition: HASCAS tools for transition—A literature review for informed practice. London, England: Author. Lamb, C., & Murphy, M. (2013). The divide between child and adult mental health services: Points for debate. The British Journal of Psychiatry Supplement, 54, s41-s44. Manteuffel, B., Stephens, R. L., Sondheimer, D. L., & Fisher, S. K. (2008). Characteristics, service experiences, and outcomes of transition-aged youth in systems of care: Programmatic and policy implications. Journal of Behavioral Health Services & Research, 35, 469-487. Marcer, H., Finlay, F., & Baverstock, A. (2008). ADHD and transition to adult services—The experience of community paediatricians. Child: Care, Health and Development, 34, 564-566. McCarthy, S., Asherson, P., Coghill, D., Hollis, C., Murray, M., Potts, L., . . .Wong, I. C. (2009). Attention-deficit hyperactivity disorder: Treatment discontinuation in adolescents and young adults. The British Journal of Psychiatry, 194, 273-277. McGorry, P. D. (2007). The specialist youth mental health model: Strengthening the weakest link in the public mental health system. The Medical Journal of Australia, 187, s53-s56.
McNamara, N., McNicholas, F., Ford, T., Paul, M., Gavin, B., Coyne, I., . . .Singh, S. P. (2014). Transition from child and adolescent to adult mental health services in the Republic of Ireland: An investigation of process and operational practice. Early Intervention in Psychiatry, 8, 291-297. doi:10.1111/eip.12073 Mueller, A. K., Fuermaier, A. B., Koerts, J., & Tucha, L. (2012). Stigma in attention deficit hyperactivity disorder. Attention Deficit and Hyperactivity Disorders, 4, 101-114. National Institute for Health and Clinical Excellence. (2008). Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults (Clinical Guideline 72). London, England: Author. Nutt, D. J., Fone, K., Asherson, P., Bramble, D., Hill, P., Matthews, K., . . . British Association for Psychopharmacology. (2007). Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: Recommendations from the British Association for Psychopharmacology. Journal of Psychopharmacology, 21, 10-41. Panei, P., Arcieri, R., Vella, S., Bonati, M., Martini, N., & Zuddas, A. (2004). Italian attention deficit/hyperactivity disorder registry. Pediatrics, 114, 514. Paul, M., Ford, T., Kramer, T., Islam, Z., Harley, K., & Singh, S. P. (2013). Transfers and transitions between child and adult mental health services. The British Journal of Psychiatry Supplement, 54, s36-s40. Pottick, K. J., Bilder, S., Vander Stoep, A., Warner, L. A., & Alvarez, M. F. (2008). U.S. patterns of mental health service utilization for transition-age youth and young adults. The Journal of Behavioral Health Services & Research, 35, 373-389. Scal, P., Evans, T., Blozis, S., Okinow, N., & Blum, R. (1999). Trends in transition from pediatric to adult health care services for young adults with chronic conditions. Journal of Adolescent Health, 24, 259-264. Singh, S. P. (2009). Transition of care from child to adult mental health services: The great divide. Current Opinion in Psychiatry, 22, 386-390. Singh, S. P., Paul, M., Ford, T., Kramer, T., & Weaver, T. (2008). Transitions of care from child and adolescent mental health services to adult mental health services (TRACK study): A study of protocols in Greater London. BMC Health Service Research, 8, 1-7. Singh, S. P., Paul, M., Ford, T., Kramer, T., Weaver, T., McLaren, S., . . .White, S. (2010). Process, outcome and experience of transition from child to adult mental healthcare: Multiperspective study. The British Journal of Psychiatry, 197, 305-312. Stagi, P., & Di Tommaso, F. (2009). A longitudinal, population based study of 10.000 children and adolescents consecutively referred to the Psychiatric service of Ravenna District from 1994 to 2007. Psichiatria dell’infanzia e dell’adolescenza, 76, 434-444. Taylor, N., Fauset, A., & Harpin, V. (2010). Young adults with ADHD: An analysis of their service needs on transfer to adult services. Archives of Disease in Childhood, 95, 513-517. Van Deusen, T. C. (2014). Child and adolescent psychiatrists are experts in transitional aged youth, aren’t we? Journal of the American Academy of Child & Adolescent Psychiatry, 53, 476-477.
Downloaded from jad.sagepub.com at BOSTON UNIV on June 4, 2016
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Wilens, E. G., Faraone, S. V., & Biederman, J. (2004). Attention deficit/hyperactivity disorder in adults. Journal of the American Medical Association, 292, 619-623. Woodward, J. F., Swigonski, N. L., & Ciccarelli, M. R. (2012). Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program. Journal of Adolescent Health, 51, 272-278. Young, S. (2000). ADHD children grown up: An empirical review. Counselling Psychology Quarterly, 13, 191-200. Young, S., & Amarasinghe, J. A. (2010). Practitioner review: Nonpharmacological treatments for ADHD: A lifespan approach. Journal of Child Psychology and Psychiatry, 51, 116-133. Young, S., Murphy, C. M., & Coghill, D. (2011). Avoiding the “twilight zone”: Recommendations for the transition of services from adolescence to adulthood for young people with ADHD. BMC Psychiatry, 11, Article 174.
Author Biographies Laura Reale is a resident student in Child and Adolescent Neuropsychiatry at the University of Milan, Fondazione IRCCS Ca’ Granda-Child and Adolescent Neuropsychiatry Unit, and she works as a visiting research student at the Laboratory for Mother and Child Health in the Department of Public Health, IRCCSIstituto di Ricerche Farmacologiche “Mario Negri,” Milan. She completed her PhD in Child and Adolescent Neuropsychiatry at the University of Catania where she focused her attention on
autism, ADHD, and the psychopharmacological treatment of psychiatric disorders in childhood. Maria Antonella Costantino is a Child and Adolescent Neuropsychiatrist, CANPS Director, Foundation Ca’ GrandaOspedale Maggiore Policlinico, Milan, Italy. Her main research interests are CANPS service organization and management, continuous quality improvement, network building, epidemiology in child and adolescence mental health, transfer of information to the community, augmentative and alternative communication, familycentered services for complex disorders, and child and adolescence mental health in migrant populations. Marco Sequi performed data management and analysis for the Laboratory for Mother and Child Health at the Department of Public Health, IRCCS-Istituto di Ricerche Farmacologiche “Mario Negri,” Milan. Maurizio Bonati is the Head of Laboratory for Mother and Child Health and of the Department of Public Health at the IRCCSIstituto di Ricerche Farmacologiche “Mario Negri,” Milan. He is the author and coauthor of hundreds of scientific articles, book chapters, and abstracts; and editor of Ricerca & Pratica journal. His main research interests are: monitoring and epidemiological evaluation of drug utilisation and effects of drugs and vaccines in motherhood and childhood; research methodology in general hospital and paediatric community practice; transfer of information to the community; and epidemiology of paediatric and perinatal care.
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research-article2014
JADXXX10.1177/1087054714560823Journal of Attention DisordersReale et al.
Article
Transition to Adult Mental Health Services for Young People With ADHD
Journal of Attention Disorders 1–8 © 2014 SAGE Publications Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1087054714560823 jad.sagepub.com
Laura Reale1, Maria Antonella Costantino2, Marco Sequi1, and Maurizio Bonati1
Abstract Objective: To investigate the care management and continuity from child to adult mental health service for young adults with ADHD. Method: A questionnaire survey from 18 Regional ADHD Pediatric Centers (RAPC) in Lombardy, Italy, was used to collect data on transition protocols and population served, and to track the pathway of care of ADHD patients once they reached adulthood. Results: Twenty-eight percent of RAPC had transition protocols and 3% of the population annually served were potential referrals to adult service. Of 52 patients who turned 18 years, just over 70% were monitored by the general practitioner, of those 5 with RAPC support. One fifth of patients continued to use mental health services, the majority was still monitored by the RAPC, and only three by services for adult. Conclusion: Managing the process of transition to adult services in mental health care remains a need to be prioritized and better defined for ADHD patients. (J. of Att. Dis. XXXX; XX(X) XX-XX) Keywords ADHD, adult ADHD, health service use
Introduction To date, there is a growing recognition that ADHD is a life span disorder that commonly persists into adulthood, with 2% to 3% of adults population meeting the criteria for ADHD diagnosis (Wilens, Faraone, & Biederman, 2004). Longitudinal studies have shown that as children diagnosed with ADHD move into adulthood, three prospective outcomes can be expected: participants with good functioning not significantly differing from healthy controls; participants (15%) who retained the full diagnosis criteria, with negative clinical evolution to antisocial and/or psychiatric disorders, more often depression, alcohol and drug abuse, and serious antisocial behavior; and a much larger proportion (65%) of participants meeting criteria for ADHD in partial remission, indicating the persistence of some symptoms associated with employment and relationships difficulties, irritability, anxiety, and emotional lability, which often result, however, in significant clinical impairments (Young, 2000). These figures suggest that there is increasing evidence that ADHD disorder leads to a range of various clinical manifestations and outcome into adulthood (Faraone et al., 2000; Wilens et al., 2004), and resulting in the need for care continuity. Studies exploring transition in mental health care show that there are two main different approaches to manage the transition to adult care such as to improve the currently existing interface between services (Paul et al., 2013; Pottick, Bilder, Vander Stoep, Warner, & Alvarez, 2008;
Singh et al., 2010; Woodward, Swigonski, & Ciccarelli, 2012) and to develop new models of youth mental health services (Gilmer, Ojeda, Fawley-King, Larson, & Garcia, 2012; Manteuffel, Stephens, Sondheimer, & Fisher, 2008; Scal, Evans, Blozis, Okinow, & Blum, 1999). Each approach has its advantages, limitations, and resource implications. Determining whether shared planning between services or new services focused on transition are needed should be better evaluated also for ADHD patients, because scant evidence is available on transition processes of these patients from pediatric to adult mental services. National Institute for Health and Clinical Excellence (NICE) guidelines on diagnosis and management of ADHD in children, young people, and adults, propose a pathway for transition based on shared planning between pediatric and adult services. Reassessment at school-leaving age, meetings involving pediatric and adult mental health services, and patients’ and parental involvement in transition planning emerged as key recommendations (NICE, 2008). 1
Laboratory for Mother and Child Health, Department of Public Health, IRCCS-Istituto di Ricerche Farmacologiche “Mario Negri,” Milan, Italy 2 Child and Adolescent Neuropsychiatry Unit, IRCCS Foundation Ca’ Granda-Ospedale Maggiore Policlinico, Milan, Italy Corresponding Author: Laura Reale, Laboratory for Mother and Child Health, Department of Public Health, IRCCS—Istituto di Ricerche Farmacologiche “Mario Negri” 20156 Milan, Italy. Email: [email protected]
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As advocated by this document, it is crucial for young people with ADHD to maintain continuity of mental health care support into adulthood, with potential and different health care ways according to patients’ outcome and needs, and local services’ availability. Although the current Lombardy Regional policy, as well as the more recent National policy, emphasizes the need for a closer cooperation between adult mental health services and Child and Adolescent NeuroPsychiatry Services (CANPS), too, there are no references and specific recommendations or protocols on the process of transition to adult services for people with mental disorders. This fact is probably due to the scarce published evidence on the process, models, and outcomes of transition, also in Italy (Stagi & Di Tommaso, 2009). Indeed, although many agree that transition is as a key component of care, there is little empirical data on which health services can be based. The present study aimed to investigate the health care management and continuity for young adult with ADHD, who crossed the age boundary for pediatric service, and to provide evaluable data on transition protocols, population served, and potential referral rates to adult mental health care, in Lombardy Region context.
Method The Italian Health Care Setting Italian health care is provided free or at a nominal charge through a network of 148 local health units (LHU). Children are assigned to a family pediatrician until they are 6 years old; afterward, the parents can choose to remain with that pediatrician until the child is 14 years old or to register the child with a general practitioner (GP). All adolescents over 14 years of age are assigned to a GP. CANPS are part of the LHU and provide care at the hospital and community level for children and adolescents with neurologic and/or psychiatric and/or neuropsychologic disorders (including developmental disabilities and intellectual disabilities) and for their families. CANPS are multi-professional, comprehensive community services providing diagnosis, treatment, and rehabilitation. They are separate from adult mental health services and work mainly on an outpatient basis and work closely with educational and social services. Since September 2007, Regional ADHD Pediatric Centers (RAPC) have been required to send patient information to the National Registry dedicated to collecting data on pharmacological treatment of ADHD patients aged less than 18 years. Regional health authorities are responsible for the accreditation of the RAPC in regional hospitals, which are linked to the CANPS located in the local communities. The RAPC are therefore the specialized hubs of the CANPS network on ADHD (Bonati & Reale, 2013; Panei et al., 2004).
Sample In the Lombardy Region, with 16.5% of Italian pediatric population, there are 18 RAPC. The data of all RAPC were retrieved from the National ADHD Register using appropriate local data extraction procedures to obtain the list of all patients who turned 18 before January 2012 as well as their demographic and clinical characteristics at the last register update. Fifty-two ADHD participants diagnosed by the RAPC reached the age of 18 from January 2008 to December 2011 and were identified from the database to evaluate who continued to be seen by RAPC beyond the transition boundary, for which reasons, and their current clinical and demographic characteristics; and who was accepted by other services and how the transition process between services occurred.
Transition Questionnaire A literature review on the transition from pediatric to adult mental health services was undertaken through searches of Medline, EMBASE, PsychINFO, The Cochrane Library, and reports and publications from various national health departments. Based on this review, a semi-structured questionnaire was developed, composed of two parts. The first sought information on the RAPC and its organization in year 2011, and specifically requested information on the following: •• number of currently “active” and new cases aged 16 or older; •• whether a transition protocol existed (a copy of any transition protocol was requested); •• whether a specific transition protocol existed for the management of ADHD patients; and •• whether and how pharmacological treatment was prescribed for young adults aged 18 or older. The second part collected information about pathways of care and clinical characteristics for each of the ADHD patients aged 18 or older. The pilot questionnaire was discussed with natural experts working in child and adolescent mental health field external to the project setting to help establish face and content validity. An amended version was developed and was again reviewed, leading to a final semi-structured questionnaire.
Data Collection and Source The head neuropsychiatrists of the 18 ADHD reference centers received a letter explaining the aim of the survey and were asked to complete the questionnaire in consultation with their multidisciplinary team. Three further reminder emails, supplemented by follow-up telephone calls, were
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Reale et al. sent to improve recruitment rates. Single patient data were collected from transition questionnaires completed by clinicians on the basis of clinical medical records. Moreover, we checked these data with those collected in Health Administrative Regional databases to make the study findings derived from the questionnaire survey more complete and reliable. The data sources were regional databases routinely updated for administrative and reimbursement reasons (Clavenna et al., 2013). The databases stored data on services’ use for both the CANPS and the adult mental health services. All data were provided anonymous to study coordination center.
Results RAPC: Service Organization in the Lombardy Region The first part of the transition questionnaire evaluating service organization (referred to the year 2011) was completed by the 18 RAPC. Questionnaire answers showed that, in a sample of 891—388 (43.5%) = “active” cases, 503 (56.5%) = new cases—children and adolescents aged 5 to 17 years who accessed the RAPC during 2011 for a suspect of ADHD, 687 (77.1%) met Diagnostic and Statistical Manual of Mental Disorders (4th ed., text rev.; DSM-IV-TR; American Psychiatric Association [APA], 2000) criteria for ADHD. Thus, the estimated ADHD prevalence in the population accessing RAPC was 0.6%. Three percent of both new cases and “active” cases were adolescents aged 16 or older. Four RAPC had protocols aimed at managing the transition process from pediatric to adult mental health services, none of which was specifically for the ADHD disorder. Of these, two could not be used by ADHD reference services because not suitable for ADHD patients. Moreover, of the four existing protocols, only one considered the evaluation of transition outcomes. On the basis of the collected data and regional mental health service organization, the NICE Guidelines on management of ADHD patients have been further extended with key suggestions that emerged from literature review (Nutt et al., 2007), clinical experience, and expert opinions. This service guidance is summarized in Figure 1.
Adult ADHD Patients: Pathways of Care in the Lombardy Region From the ADHD Register National database, 52 patients who reached the age of 18 before January 2012 were diagnosed and followed up at RAPC joining the study, and clinical information for each of these 52 patients was collected. The Adult ADHD percentage rate, calculated as the number of adult ADHD cases compared with the total number of
patients present in the register for each center, showed wide differences between the centers (median rate = 11.9%; minimum = 3.5%; maximum = 33.3%). The median age was 19.0 years (range = 18-21 years) at the time of the study and 36 patients (85.7%) were male. In all, 76.2% met Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV; APA, 1994) criteria for ADHD Combined Type and 40.5% had at least one comorbid mental health disorder. In all, 64.3% were treated with a combination of pharmacotherapy and behavioral therapy (BT), whereas 30.9% of patients were undergoing treatment with pharmacotherapy only and 4.8% with BT only. As shown in Figure 2, 6% of the study sample was discharged by the RAPC because of good symptoms control and therefore the involvement of adult mental health services was not needed; while 33 of 52 (63%) had not any visit neither at the RAPC nor at an adult mental health services by the age of 18 and for the next 3 years, even though they didn’t discharged. These patients, thus, were followed by the GP alone, with no specialist referral provided by ADHD centers, and access back to specialist services where needed. Of those currently “active” cases (n = 16, 30.2%) in mental health services, eight remained with the ADHD reference center that was already providing them with care, five were monitored by a GP with support from the RAPC, and three by adult mental health services. Of the latter, only one patient was referred to the adult service by the RAPC. Analyzing clinical characteristics of the sample before the age of 18 years, ADHD patients with comorbidity and those treated with pharmacological therapy are more likely to require continuing support from mental health services.
Discussion Mental health care continuity is often not ensured for young patients who continue to suffer pervasive and impairing ADHD symptoms in adulthood. Thus, they fall into a care gap in their adolescent years at the very moment in which they are most likely to need the support of appropriate health care services (Young & Amarasinghe, 2010). In the Lombardy Region, health care for children and adolescents with ADHD is usually provided by either ADHD reference centers or by community CANPS, according to intensity of patient’s clinical needs. Every year, 3% of patients accessed or followed up at the RAPC in Lombardy are 16 years old or older, and will therefore potential referrals requiring transition to adult services. This low rate of adolescent young patients, compared with the annual number of accesses, is consistent with results from the literature and clinical practice data. In the Tuscan Region, for example, Camuffo and Corlito (2011) showed that mental health services had a significant decline in youth accesses, probably related to services organization and to the peculiar
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Figure 1. Transition pathways: Clinical and service guidance.
GP = general practitioner; CANPS = Child and Adolescent NeuroPsychiatry Services.
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Reale et al. ADHD Pediatric Centre 15% Adult Mental Health Services 6% GP (access back if needed) 63%
Discharge 6% GP and Specialist referral 10%
Figure 2. ADHD care at early adult age. GP = general practitioner.
physiological characteristics and natural resistance to care seeking of the adolescent period. In all, 28% of the RAPC had a protocol to manage transition to adult services. Similar rates exist in the United Kingdom, where 23% of mental health services have specific arrangements for service transition (Singh, Paul, Ford, Kramer, & Weaver, 2008) and less in Ireland (10%; McNamara et al., 2014). The existence of protocols, however, does not necessarily ensure that clinical practice adheres to the stated policy. Recent U.K. Government policies have thus emphasized the importance of transition from child to adult services; tools for facilitating transition in practice and indicators to monitor this pathway have been introduced to ensure successful application of policy protocols into practice (Health and Social Care Advisory Service [HASCAS], 2006). Some Australian services have, however, begun to implement youth service models that span the traditional child–adult service divide (McGorry, 2007). Unfortunately, no initiatives were found in the National policies. Moreover, the success of health care service programs in general is largely determined by the public’s (and patients’) attitude toward the condition. With regard to ADHD, public’s misbeliefs and misconceptions (stigmatization) were shown to be an important factor, affecting treatment access, treatment adherence, treatment success, and also the individual’s quality of life (Fuermaier et al., 2012; Mueller, Fuermaier, Koerts, & Tucha, 2012). This study also looks on care of patients with ADHD diagnosed in childhood that reached the age 18 or older. The findings can be summarized as follows: three participants were discharged because of good symptoms controls; and just over 70% (n = 38) were monitored by the GP, of those five with RAPC referral. One fifth of patients continued to use mental health services, the majority was still being followed by the RAPC, and only 3 (6%) by services for adult. These data are consistent and similar with literature’s results. Marcer, Finlay, and Baverstock (2008), in a study involving a group of 78 U.K. community pediatricians,
found that at least 40% of young patients affected by ADHD would need referral to adult services, requiring both medication and other support. Similar referral rates have been shown in Taylor, Fauset, and Harpin’s (2010) study, which, in their sample of young people with ADHD, found that 36% were likely to have ongoing symptoms needing medication and show psychopathological comorbidity, and therefore they require continuing support from adult services, while 50% had good symptom control and could be monitored by the GP alone. In a retrospective study of adult participants diagnosed with ADHD in childhood, the authors found that slightly less than 20% were followed up by adult mental health services (Blasco-Fontecilla et al., 2012). A more recent study reported some similar gaps, showing that all 24 of the adult mental health teams had a transition policy while 20 of the 36 (55%) pediatric services had it. Moreover, in addition to the lack of written protocols, poor communication between child and adult services and the feeling of being ill-prepared for assessing and managing ADHD patients by adult services emerged as main barriers (Hall et al., 2013). As highlighted by other authors, it is not possible to exclude some of the patients, who are not in public specialist care, as 63% from our results continue to suffer alone and/or with their carers but without health care. These people could, however, often continue to make demands on other parts of the health care system at significant cost for themselves and society (e.g., increased usage rates of emergency services, social services, or criminal justice system) or on private care management. Several other factors may contribute to the emerging picture concerning service utilization, including a relative lack of transition services, difficulties for young people in coping with transition, and/or feeling let down by adult services (McCarthy et al., 2009). Moreover, our findings concerning services’ utilization, despite a relative lack of a full outcome evaluation of the transition process due to both the poor number of protocols and no clear and shared transition modalities, are in agreement with the percentage rate of the prospective clinical outcomes expected for ADHD patients who reached the adulthood, especially for those meeting criteria for ADHD in partial remission or with mild disorder (about 65%) that overlapped with the 70% monitored by GP in our sample (Faraone, Biederman, & Mick, 2006). The major concern is that the participants who retain the full diagnosis criteria, probably corresponding to the 21% in our sample, although continued to use mental health services, the majority did not switch to adult services but remained on the ADHD pediatric center care. This issue goes beyond the Italian health care system and the ADHD diagnosis, representing one of the possible transitional trajectories experienced by young people with mental disorders. In particular, young people with ADHD as well as with autism spectrum disorders and emergent personality disorder, who are likely to have
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ongoing problems, often are not referred, because it is believed they would not be accepted, or not accepted by adult services (Lamb & Murphy, 2013). NICE recommended that transition be completed by age 18 which, assuming that 16 would be the youngest age for transition, allows a 2-year window for this to be achieved (NICE, 2008). Once again, despite this, in the Lombardy Region, half of the patients currently undergoing care remain under the CANPS. This issue is not limited to the Italian context: Also in the United Kingdom, for example, whatever the formal cutoff age, many child mental health services continue to follow their patients well past this age due to difficulties in transferring care to adult services (Young, Murphy, & Coghill, 2011). Although this ensures some young patients access to continued care, it is for a limited period and the lack of clarity for both patients and professionals is confusing. Thus, as shown in Figure 1 and based on collected data, NICE guidelines, literature review, and expert opinions, we suggested a clinical and services guidance for a smooth transition and best health care service for young adults with ADHD. The key elements that promote successful transition are the reassessment of all young people with ADHD at school-leaving age, good information transfer shared with parents, patient and clinicians referred to, at least one transition planning meeting, a period of parallel care, and at least one joint meeting to evaluate the transition outcomes. Although Lombardy Region is the most populated and economically important region in Italy, all data are coming from a single country region, and may affect the generalizability and comparability of the reported findings within and between countries.
Conclusion Despite this important limitation, the need of clinical studies leading to a better and evidence-based management of the transition from pediatric to adult mental health services was evident. To our knowledge, this is the first study on this issue in the Italian context and therefore could be used as a good model to investigate other clinical setting in terms of different regional service approaches to the transition process and different psychiatric disorders considered. Policies and protocols addressing health care transition at such a vulnerable age should be developed. Furthermore, transition protocols should be developed jointly by ADHD reference centers, CANPS, adult psychiatric services, and community pediatric and adult mental services to ensure care continuity, and should also take patients’ and parents’ involvement and suggestions into consideration. Last, but not least, it is essential that these protocols be reviewed and evaluated, so that they can be effectively and easily translated into clinical practice. ADHD has just recently been recognized as a lifelong disorder, however, and adult
provision is poor. Simply bridging the transition gap will not address the fundamental problem of how the transition period of young adults with ADHD should be managed. Layman and professional misunderstandings and misinformation about ADHD abound, and may contribute to the differences that exist between child and adult services in the theoretical and conceptual views of diagnosis, cause, and treatment focus (Singh, 2009). There is, therefore, also a clear need for increased multidisciplinary and independent education about ADHD at both undergraduate and postgraduate level (Van Deusen, 2014). Authors’ Note Laura Reale and Maurizio Bonati contributed to this work in terms of conception and design of the study, analysis, and interpretation of data and paper writing. Marco Sequi was involved in data management and analysis, and Maria Antonella Costantino in drafting the manuscript and revising it critically for important intellectual content. All authors have read and approved the final manuscript.
Acknowledgments The authors acknowledge the Italian National Institute of Health: Pietro Panei; Lombardy ADHD Centers: Stefano Conte— Bergamo; Massimo Molteni, Angela Valli—Bosisio Parini, Lecco; Francesco Rinaldi—Breno, Brescia; Paola Effedri, Stefano Guerini—Brescia; Nadia Fteita—Como; Simonetta Oriani, Simona Frassica—Garbagnate, Milan; Ottaviano Martinelli, Davide Villani—Lecco; Ernesta Ricotta—Legnano, Milan; Paola Morosini—Lodi; Valeria Mannino, Claudio Bissoli, Isabella Cropanese, Monica Saccani, Federica Aggio, Paola Olgiati, Vera Valenti, Gaia Oldani—Milan; Umberto Balottin, Daniela Candeloro—Pavia; Corrado Meraviglia— Sondrio; Giorgio Rossi, Cristiano Termine—Varese. Grateful acknowledgment goes to Chiara Pandolfini for language editing this manuscript.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study is part of the “Sharing Diagnostic-Therapeutic Approaches for ADHD in Lombardy” project partially funded by the Lombardy Region (D.G. sanità n.3250, November 4, 2011).
References American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
Downloaded from jad.sagepub.com at BOSTON UNIV on June 4, 2016
7
Reale et al. Blasco-Fontecilla, H., Carballo, J. J., Garcia-Nieto, R., LopezCastroman, J., Alegria, A. A., Basurte-Villamor, I., . . .BacaGarcia, E. (2012). Factors contributing to the utilization of adult mental health services in children and adolescents diagnosed with hyperkinetic disorder. Scientific World Journal, 2012, Article 451205. doi:10.1100/2012/451205 Bonati, M., & Reale, L. (2013). Reducing overdiagnosis and disease mongering in ADHD in Lombardy. British Medical Journal, 347, f7474. Camuffo, M., & Corlito, G. (2011). I percorsi della salute mentale: Da un servizio per l’infanzia e l’adolescenza ad un servizio per gli adulti [Mental health patterns of care: From a child and adolescence servive to an adult service]. Psichiatria dell’infanzia e dell’adolescenza, 78, 340-356. Clavenna, A., Cartabia, M., Sequi, M., Costantino, M. A., Bortolotti, A., Fortino, I., . . .Bonati, M. (2013). Burden of psychiatric disorders in the pediatric population. European Neuropsychopharmacology, 23, 98-106. Faraone, S. V., Biederman, J., & Mick, E. (2006). The age-dependent decline of attention deficit hyperactivity disorder: A meta-analysis of follow-up studies. Psychological Medicine, 36, 159-165. Faraone, S. V., Biederman, J., Spencer, T., Wilens, T., Seidman, L. J., Mick, E., & Doyle, A. E. (2000). Attention-deficit/ hyperactivity disorder in adults: An overview. Biological Psychiatry, 48, 9-20. Fuermaier, A. B., Tucha, L., Koerts, J., Mueller, A. K., Lange, K. W., & Tucha, O. (2012). Measurement of stigmatization towards adults with attention deficit hyperactivity disorder. PLoS ONE, 7, Article e51755. Gilmer, T. P., Ojeda, V. D., Fawley-King, K., Larson, B., & Garcia, P. (2012). Change in mental health service use after offering youth-specific versus adult programs to transitionage youths. Psychiatric Service, 63, 592-596. Hall, C. L., Newell, K., Taylor, J., Sayal, K., Swift, K. D., & Hollis, C. (2013). “Mind the gap”—Mapping services for young people with ADHD transitioning from child to adult mental health services. BMC Psychiatry, 13, Article 186. Health and Social Care Advisory Service. (2006). CAMHS to adult transition: HASCAS tools for transition—A literature review for informed practice. London, England: Author. Lamb, C., & Murphy, M. (2013). The divide between child and adult mental health services: Points for debate. The British Journal of Psychiatry Supplement, 54, s41-s44. Manteuffel, B., Stephens, R. L., Sondheimer, D. L., & Fisher, S. K. (2008). Characteristics, service experiences, and outcomes of transition-aged youth in systems of care: Programmatic and policy implications. Journal of Behavioral Health Services & Research, 35, 469-487. Marcer, H., Finlay, F., & Baverstock, A. (2008). ADHD and transition to adult services—The experience of community paediatricians. Child: Care, Health and Development, 34, 564-566. McCarthy, S., Asherson, P., Coghill, D., Hollis, C., Murray, M., Potts, L., . . .Wong, I. C. (2009). Attention-deficit hyperactivity disorder: Treatment discontinuation in adolescents and young adults. The British Journal of Psychiatry, 194, 273-277. McGorry, P. D. (2007). The specialist youth mental health model: Strengthening the weakest link in the public mental health system. The Medical Journal of Australia, 187, s53-s56.
McNamara, N., McNicholas, F., Ford, T., Paul, M., Gavin, B., Coyne, I., . . .Singh, S. P. (2014). Transition from child and adolescent to adult mental health services in the Republic of Ireland: An investigation of process and operational practice. Early Intervention in Psychiatry, 8, 291-297. doi:10.1111/eip.12073 Mueller, A. K., Fuermaier, A. B., Koerts, J., & Tucha, L. (2012). Stigma in attention deficit hyperactivity disorder. Attention Deficit and Hyperactivity Disorders, 4, 101-114. National Institute for Health and Clinical Excellence. (2008). Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults (Clinical Guideline 72). London, England: Author. Nutt, D. J., Fone, K., Asherson, P., Bramble, D., Hill, P., Matthews, K., . . . British Association for Psychopharmacology. (2007). Evidence-based guidelines for management of attention-deficit/hyperactivity disorder in adolescents in transition to adult services and in adults: Recommendations from the British Association for Psychopharmacology. Journal of Psychopharmacology, 21, 10-41. Panei, P., Arcieri, R., Vella, S., Bonati, M., Martini, N., & Zuddas, A. (2004). Italian attention deficit/hyperactivity disorder registry. Pediatrics, 114, 514. Paul, M., Ford, T., Kramer, T., Islam, Z., Harley, K., & Singh, S. P. (2013). Transfers and transitions between child and adult mental health services. The British Journal of Psychiatry Supplement, 54, s36-s40. Pottick, K. J., Bilder, S., Vander Stoep, A., Warner, L. A., & Alvarez, M. F. (2008). U.S. patterns of mental health service utilization for transition-age youth and young adults. The Journal of Behavioral Health Services & Research, 35, 373-389. Scal, P., Evans, T., Blozis, S., Okinow, N., & Blum, R. (1999). Trends in transition from pediatric to adult health care services for young adults with chronic conditions. Journal of Adolescent Health, 24, 259-264. Singh, S. P. (2009). Transition of care from child to adult mental health services: The great divide. Current Opinion in Psychiatry, 22, 386-390. Singh, S. P., Paul, M., Ford, T., Kramer, T., & Weaver, T. (2008). Transitions of care from child and adolescent mental health services to adult mental health services (TRACK study): A study of protocols in Greater London. BMC Health Service Research, 8, 1-7. Singh, S. P., Paul, M., Ford, T., Kramer, T., Weaver, T., McLaren, S., . . .White, S. (2010). Process, outcome and experience of transition from child to adult mental healthcare: Multiperspective study. The British Journal of Psychiatry, 197, 305-312. Stagi, P., & Di Tommaso, F. (2009). A longitudinal, population based study of 10.000 children and adolescents consecutively referred to the Psychiatric service of Ravenna District from 1994 to 2007. Psichiatria dell’infanzia e dell’adolescenza, 76, 434-444. Taylor, N., Fauset, A., & Harpin, V. (2010). Young adults with ADHD: An analysis of their service needs on transfer to adult services. Archives of Disease in Childhood, 95, 513-517. Van Deusen, T. C. (2014). Child and adolescent psychiatrists are experts in transitional aged youth, aren’t we? Journal of the American Academy of Child & Adolescent Psychiatry, 53, 476-477.
Downloaded from jad.sagepub.com at BOSTON UNIV on June 4, 2016
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Wilens, E. G., Faraone, S. V., & Biederman, J. (2004). Attention deficit/hyperactivity disorder in adults. Journal of the American Medical Association, 292, 619-623. Woodward, J. F., Swigonski, N. L., & Ciccarelli, M. R. (2012). Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program. Journal of Adolescent Health, 51, 272-278. Young, S. (2000). ADHD children grown up: An empirical review. Counselling Psychology Quarterly, 13, 191-200. Young, S., & Amarasinghe, J. A. (2010). Practitioner review: Nonpharmacological treatments for ADHD: A lifespan approach. Journal of Child Psychology and Psychiatry, 51, 116-133. Young, S., Murphy, C. M., & Coghill, D. (2011). Avoiding the “twilight zone”: Recommendations for the transition of services from adolescence to adulthood for young people with ADHD. BMC Psychiatry, 11, Article 174.
Author Biographies Laura Reale is a resident student in Child and Adolescent Neuropsychiatry at the University of Milan, Fondazione IRCCS Ca’ Granda-Child and Adolescent Neuropsychiatry Unit, and she works as a visiting research student at the Laboratory for Mother and Child Health in the Department of Public Health, IRCCSIstituto di Ricerche Farmacologiche “Mario Negri,” Milan. She completed her PhD in Child and Adolescent Neuropsychiatry at the University of Catania where she focused her attention on
autism, ADHD, and the psychopharmacological treatment of psychiatric disorders in childhood. Maria Antonella Costantino is a Child and Adolescent Neuropsychiatrist, CANPS Director, Foundation Ca’ GrandaOspedale Maggiore Policlinico, Milan, Italy. Her main research interests are CANPS service organization and management, continuous quality improvement, network building, epidemiology in child and adolescence mental health, transfer of information to the community, augmentative and alternative communication, familycentered services for complex disorders, and child and adolescence mental health in migrant populations. Marco Sequi performed data management and analysis for the Laboratory for Mother and Child Health at the Department of Public Health, IRCCS-Istituto di Ricerche Farmacologiche “Mario Negri,” Milan. Maurizio Bonati is the Head of Laboratory for Mother and Child Health and of the Department of Public Health at the IRCCSIstituto di Ricerche Farmacologiche “Mario Negri,” Milan. He is the author and coauthor of hundreds of scientific articles, book chapters, and abstracts; and editor of Ricerca & Pratica journal. His main research interests are: monitoring and epidemiological evaluation of drug utilisation and effects of drugs and vaccines in motherhood and childhood; research methodology in general hospital and paediatric community practice; transfer of information to the community; and epidemiology of paediatric and perinatal care.
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