Review: Experiences of healthcare transitions for young people with attention deficit hyperactivity disorder: a systematic review of qualitative research.
Attention deficit hyperactivity disorder
adolescence
experiences
health
qualitative methods
systematic review
transition
Journal
Child and adolescent mental health
ISSN: 1475-357X
Titre abrégé: Child Adolesc Ment Health
Pays: England
ID NLM: 101142157
Informations de publication
Date de publication:
May 2019
May 2019
Historique:
accepted:
20
07
2018
entrez:
18
7
2020
pubmed:
1
5
2019
medline:
1
5
2019
Statut:
ppublish
Résumé
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by hyperactivity, inattention and impulsivity. Up to two thirds of young people with ADHD may experience symptoms into adulthood, yet the limited literature available suggests that many young people with ongoing needs do not transfer from child to adult healthcare services. Although worldwide and NICE guidelines recognise the importance of supported transition, evidence suggests for ADHD that this is poorly managed and variable. Little is known about how transition is experienced by those involved. We aimed to synthesise existing peer-reviewed literature to understand views and experiences of young people, carers and clinicians on transitioning between child and adult ADHD services. Five databases were searched and all articles published between 2000 and up until January 2017 considered. Four key search areas were targeted; ADHD, Transition, Age and Qualitative Research. Quality appraisal was conducted using Wallace criteria. Findings from included studies were synthesised using thematic analysis. Eight papers, six from the UK and one each from Hong Kong and Italy, were included. Emerging themes centred on difficulties transitioning; hurdles that had to be negotiated, limitations of adult mental health services, inadequate care and the impact of transition difficulties. Healthcare transition for this group is difficult in the United Kingdom because of multiple challenges in service provision. In addition to recommendations in NICE guidelines, respondents identified a need for better provision of information to young people about adult services and what to expect, greater flexibility around age boundaries and the value of support from specialist adult ADHD services. More research is needed into ADHD healthcare transition experiences, especially in countries outside the United Kingdom, including accounts from carers and clinicians.
Sections du résumé
BACKGROUND
BACKGROUND
Attention deficit hyperactivity disorder (ADHD) is a neurodevelopmental disorder characterised by hyperactivity, inattention and impulsivity. Up to two thirds of young people with ADHD may experience symptoms into adulthood, yet the limited literature available suggests that many young people with ongoing needs do not transfer from child to adult healthcare services. Although worldwide and NICE guidelines recognise the importance of supported transition, evidence suggests for ADHD that this is poorly managed and variable. Little is known about how transition is experienced by those involved. We aimed to synthesise existing peer-reviewed literature to understand views and experiences of young people, carers and clinicians on transitioning between child and adult ADHD services.
METHOD
METHODS
Five databases were searched and all articles published between 2000 and up until January 2017 considered. Four key search areas were targeted; ADHD, Transition, Age and Qualitative Research. Quality appraisal was conducted using Wallace criteria. Findings from included studies were synthesised using thematic analysis.
RESULTS
RESULTS
Eight papers, six from the UK and one each from Hong Kong and Italy, were included. Emerging themes centred on difficulties transitioning; hurdles that had to be negotiated, limitations of adult mental health services, inadequate care and the impact of transition difficulties.
CONCLUSIONS
CONCLUSIONS
Healthcare transition for this group is difficult in the United Kingdom because of multiple challenges in service provision. In addition to recommendations in NICE guidelines, respondents identified a need for better provision of information to young people about adult services and what to expect, greater flexibility around age boundaries and the value of support from specialist adult ADHD services. More research is needed into ADHD healthcare transition experiences, especially in countries outside the United Kingdom, including accounts from carers and clinicians.
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
113-122Subventions
Organisme : Department of Health
ID : HS&DR/14/21/52
Pays : United Kingdom
Organisme : Health Services and Delivery Research Programme
ID : 14/21/52
Informations de copyright
© 2018 Association for Child and Adolescent Mental Health.
Références
Agnew-Blais, J.C., Polanczyk, G.V., Danese, A., Wertz, J., Moffitt, T.E., & Arseneault, L. (2016). Evaluation of the persistence, remission, and emergence of attention-deficit/hyperactivity disorder in young adulthood. JAMA Psychiatry, 73, 713-720.
Banaschewski, T., Coghill, D., Santosh, P., Zuddas, A., Asherson, P., Buitelaar, J., … & Rothenberger, A. (2006). Long-acting medications for the hyperkinetic disorders. European Child & Adolescent Psychiatry, 15, 476-495.
Baric, V.B., Hemmingsson, H., Hellberg, K., & Kjellberg, A. (2016). The occupational transition process to upper secondary school, further education and/or work in Sweden: As described by young adults with Asperger syndrome and attention deficit hyperactivity disorder. Journal of Autism and Developmental Disorders, 47, 667-679.
Belling, R., McLaren, S., Paul, M., Ford, T., Kramer, T., Weaver, T., … & Singh, S.P. (2014). The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services. Journal of Health Services Research & Policy, 19, 169-176.
Blum, R.W., Garell, D., Hodgman, C.H., Jorissen, T.W., Okinow, N.A., Orr, D.P., & Slap, G.B. (1993). Transition from child-centered to adult health-care systems for adolescents with chronic conditions: A position paper of the Society for Adolescent Medicine. Journal of Adolescent Health, 14, 570-576.
Bolea-Alamañac, B., Nutt, D.J., Adamou, M., Asherson, P., Bazire, S., Coghill, D., … & Santosh, P. (2014). Evidence-based guidelines for the pharmacological management of attention deficit hyperactivity disorder: Update on recommendations from the British Association for Psychopharmacology. Journal of Psychopharmacology, 28, 179-203.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.
Cheung, K.K., Wong, I.C., Ip, P., Chan, P.K., Lin, C.H., Wong, L.Y., & Chan, E.W. (2015). Experiences of adolescents and young adults with ADHD in Hong Kong: Treatment services and clinical management. BMC Psychiatry, 15, 95.
Coghill, D. (2016). Organisation of services for managing ADHD. Epidemiology and Psychiatric Sciences, 26, 453-458.
Embrett, M.G., Randall, G.E., Longo, C.J., Nguyen, T., & Mulvale, G. (2016). Effectiveness of health system services and programs for youth to adult transitions in mental health care: A systematic review of academic literature. Administration and Policy in Mental Health and Mental Health Services Research, 43, 259-269.
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.
Ford, T., Janssens, A., Paul, M., Ani, C., Young, S., & Newlove-Delgado, T. (2015). Study Protocol: Young people with Attention Deficit Hyperactivity Disorder (ADHD) in transition from children's services to adult services (Catch-uS): A mixed methods project using national surveillance, qualitative and mapping studies. Available from: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/142152/#/documentation [last accessed 11 October 2017].
Gale, N.K., Heath, G., Cameron, E., Rashid, S., & Redwood, S. (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13, 117.
Gibbins, C., & Weiss, M. (2007). Clinical recommendations in current practice guidelines for diagnosis and treatment of ADHD in adults. Current Psychiatry Reports, 9, 420-426.
Ginsberg, Y., Beusterien, K.M., Amos, K., Jousselin, C., & Asherson, P. (2014). The unmet needs of all adults with ADHD are not the same: A focus on Europe. Expert Review of Neurotherapeutics, 14, 799-812.
Gotlieb, E.M., & Gotlieb, J.S. (2009). Helping adolescents with attention-deficit/hyperactivity disorder transition toward adulthood. Adolescent Medicine-State of the Art Reviews, 20, 203.
Greaves, C., Poltawski, L., Garside, R., & Briscoe, S. (2017). Understanding the challenge of weight loss maintenance: A systematic review and synthesis of qualitative research on weight loss maintenance. Health Psychology Review, 11, 145-163.
Gwernan-Jones, R., Moore, D.A., Cooper, P., Russell, A.E., Richardson, M., Rogers, M., … & Garside, R. (2016). A systematic review and synthesis of qualitative research: The influence of school context on symptoms of attention deficit hyperactivity disorder. Emotional and Behavioural Difficulties, 21, 83-100.
Hall, C.L., Newell, K., Taylor, J., Sayal, K., & Hollis, C. (2014). Services for young people with attention deficit/hyperactivity disorder transitioning from child to adult mental health services: A national survey of mental health trusts in England. Journal of Psychopharmacology, 29, 39-42.
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, 186.
Husk, K., Lovell, R., Cooper, C., Stahl-Timmins, W., & Garside, R. (2016). Participation in environmental enhancement and conservation activities for health and well-being in adults: A review of quantitative and qualitative evidence. Cochrane Database Systematic Review , CD010351.
Kooij, S.J., Bejerot, S., Blackwell, A., Caci, H., Casas-Brugué, M., Carpentier, P.J., … & Fitzgerald, M. (2010). European consensus statement on diagnosis and treatment of adult ADHD: The European Network Adult ADHD. BMC Psychiatry, 10, 67.
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.
Matheson, L., Asherson, P., Wong, I.C.K., Hodgkins, P., Setyawan, J., Sasane, R., & Clifford, S. (2013). Adult ADHD patient experiences of impairment, service provision and clinical management in England: A qualitative study. BMC Health Services Research, 13, 184.
McCarthy, S., Asherson, P., Coghill, D., Hollis, C., Murray, M., Potts, L., … & Wong, I.C.K. (2009). Attention-deficit hyperactivity disorder: Treatment discontinuation in adolescents and young adults. The British Journal of Psychiatry, 194, 273-277.
Moher, D., Liberati, A., Tetzlaff, J., & Altman, D.G. (2009). Reprint-preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. Physical Therapy, 89, 873-880.
Montano, C.B., & Young, J. (2012). Discontinuity in the transition from pediatric to adult health care for patients with attention-deficit/hyperactivity disorder. Postgraduate Medicine, 124, 23-32.
Moore, D.A., Gwernan-Jones, R., Richardson, M., Racey, D., Rogers, M., Stein, K., … & Garside, R. (2016). The experiences of and attitudes toward non-pharmacological interventions for attention-deficit/hyperactivity disorder used in school settings: A systematic review and synthesis of qualitative research. Emotional and Behavioural Difficulties, 21, 61-82.
Mulvale, G.M., Nguyen, T.D., Miatello, A.M., Embrett, M.G., Wakefield, P.A., & Randall, G.E. (2016). Lost in transition or translation? Care philosophies and transitions between child and youth and adult mental health services: A systematic review. Journal of Mental Health, 6, 1-10.
Newlove-Delgado, T., Ford, T.J., Hamilton, W., Stein, K., & Ukoumunne, O.C. (2017). Prescribing of medication for attention deficit hyperactivity disorder among young people in the Clinical Practice Research Datalink 2005-2013: Analysis of time to cessation. European Child & Adolescent Psychiatry, 27, 29-35.
NICE. (2008). Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults (CG72). Available from http://publications.nice.org.uk/attention-deficit-hyperactivity-disorder-cg72 [last accessed 03 April 2014].
NICE. (2016a). Attention deficit hyperactivity disorder: Diagnosis and management of ADHD in children, young people and adults (CG72). Available from http://publications.nice.org.uk/attention-deficit-hyperactivity-disorder-cg72 [last accessed 03 April 2014].
NICE. (2016b). Transition from children's to adults’ services for young people using health or social care services (NG43). Available from: http://publications.nice.org.uk/attention-deficithyperactivity-disorder-cg72 [last accessed 03 April 2017].
Ogundele, M.O. (2013). Transitional care to adult ADHD services in a North West England district. Clinical Governance: An International Journal, 18, 210-219.
Orr, N., Wagstaffe, A., Briscoe, S., & Garside, R. (2016). How do older people describe their sensory experiences of the natural world? A systematic review of the qualitative evidence. BMC Geriatrics, 16, 116.
Paul, M., Street, C., Wheeler, N., & Singh, S.P. (2015). Transition to adult services for young people with mental health needs: A systematic review. Clinical Child Psychology and Psychiatry, 120, 436-457.
Reale, L., Costantino, M.A., Sequi, M., & Bonati, M. (2014). Transition to adult mental health services for young people with ADHD. Journal of Attention Disorders, 22, 601-608.
Reale, L., Frassica, S., Gollner, A., & Bonati, M. (2015). Transition to adult mental health services for young people with attention deficit hyperactivity disorder in Italy: Parents’ and clinicians’ experiences. Postgraduate Medicine, 127, 671-676.
Schulenberg, J.E., Sameroff, A.J., & Cicchetti, D. (2004). The transition to adulthood as a critical juncture in the course of psychopathology and mental health. Development and Psychopathology, 16, 799-806.
Seixas, M., Weiss, M., & Müller, U. (2011). Systematic review of national and international guidelines on attention-deficit hyperactivity disorder. Journal of Psychopharmacology, 26, 753-765.
Singh, S.P., & Tuomainen, H. (2015). Transition from child to adult mental health services: Needs, barriers, experiences and new models of care. World Psychiatry, 14, 358-361.
Sonuga-Barke, E.J., Brandeis, D., Cortese, S., Daley, D., Ferrin, M., Holtmann, M., … & Döpfner, M. (2013). Nonpharmacological interventions for ADHD: Systematic review and meta-analyses of randomized controlled trials of dietary and psychological treatments. American Journal of Psychiatry, 170, 275-289.
Swift, K.D., Hall, C.L., Marimuttu, V., Redstone, L., Sayal, K., & Hollis, C. (2013). Transition to adult mental health services for young people with attention deficit/hyperactivity disorder (ADHD): A qualitative analysis of their experiences. BMC Psychiatry, 13, 74.
Swift, K.D., Sayal, K., & Hollis, C. (2013). ADHD and transitions to adult mental health services: A scoping review. Child: Care, Health and Development, 40, 775-786.
Syverson, E.P., McCarter, R., He, J., D'Angelo, L., & Tuchman, L.K. (2016). Adolescents’ perceptions of transition importance, readiness, and likelihood of future success. Clinical Pediatrics, 55, 1020-1025.
Tacconelli, E. (2010). Systematic reviews: CRD's guidance for undertaking reviews in health care. The Lancet Infectious Diseases, 10, 226.
Thomas, J., & Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 45.
Wallace, A., Croucher, K., Quilgars, D., & Baldwin, S. (2004). Meeting the challenge: Developing systematic reviewing in social policy. Policy & Politics, 32, 455-470.
Willcutt, E.G. (2012). The prevalence of DSM-IV attention-deficit/hyperactivity disorder: A meta-analytic review. Neurotherapeutics: the Journal of the American Society for Experimental NeuroTherapeutics, 9, 490-499.
Wolraich, M.L., Wibbelsman, C.J., Brown, T.E., Evans, S.W., Gotlieb, E.M., Knight, J.R., … & Wilens, T. (2005). Attention-deficit/hyperactivity disorder among adolescents: A review of the diagnosis, treatment, and clinical implications. Pediatrics, 115, 1734.
Wong, I., Asherson, P., Bilbow, A., Clifford, S., Coghill, D., DeSoysa, R., … & Planner, C. (2009). Cessation of attention deficit hyperactivity disorder drugs in the young (CADDY)-a pharmacoepidemiological and qualitative study. Health Technology Assessment, 13, 1-120.
Young, S., Adamou, M., Asherson, P., Coghill, D., Colley, B., Gudjonsson, G., … & Arif, M. (2016). Recommendations for the transition of patients with ADHD from child to adult healthcare services: A consensus statement from the UK adult ADHD network. BMC Psychiatry, 16, 1-10.
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, 1-8.