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Articles

Aligning quality of life and guidelines for off-label psychotropic drugs in adults with intellectual disabilities and challenging behaviour

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Pages 398-413 | Received 17 Dec 2022, Accepted 22 Mar 2023, Published online: 17 May 2023

References

  • Alizadeh, S., Maroufi, S. S., Sohrabi, Z., Norouzi, A., Dalooei, R. J. and Ramezani, G. 2020. Large or small panel in the Delphi study? Application of bootstrap technique. Journal of Evolution of Medical and Dental Sciences, 9, 1267–1271.
  • ANESM. 2016, December. Les «comportements-problèmes»: Prévention et réponses au sein des établissements et services intervenant auprès des enfants et adultes handicapés. Agence nationale de l’évaluation et de la qualité des établissements et services sociaux en médico-sociaux. Geraadpleegd op 14 mei 2021, van https://www.has-sante.fr/upload/docs/application/pdf/2018-03/rbpp_comportements_problemes_volets_1_et_2.pdf
  • Barron, D. A., Molosankwe, I., Romeo, R. and Hassiotis, A. 2013. Urban adolescents with intellectual disability and challenging behaviour: Costs and characteristics during transition to adult services. Health & Social Care in the Community, 21, 283–292.
  • Bhaumik, S., Gangadharan, S. K., Branford, D. and Barrett, M. 2015. The Frith Prescribing Guidelines for People with Intellectual Disability. 3de editie. Hoboken, New Jersey: Wiley.
  • Bowring, D. L., Totsika, V., Hastings, R. P., Toogood, S. and McMahon, M. 2017. Prevalence of psychotropic medication use and association with challenging behaviour in adults with an intellectual disability. A total population study. Journal of Intellectual Disability Research: JIDR, 61, 604–617.
  • Bratek, A., Krysta, K. and Kucia, K. 2017. Psychiatric comorbidity in older adults with intellectual disability. Psychiatria Danubina, 29, 590–593.
  • Camden and Islington NHS Foundation Trust. 2018, September. Prescribing guidance for managing adults with learning disability who displays behaviours that challenge. Camden and Islington.
  • Charlot, L. R., Doerfler, L. A. and McLaren, J. L. 2020. Psychotropic medications use and side effects of individuals with intellectual and developmental disabilities. Journal of Intellectual Disability Research, 64, 852–863.
  • Crocker, A. G., Prokić, A., Morin, D. and Reyes, A. 2014. Intellectual disability and co-occurring mental health and physical disorders in aggressive behaviour. Journal of Intellectual Disability Research : JIDR, 58, 1032–1044.
  • Deb, S. 2007. The role of medication in the management of behaviour problems in people with learning disabilities. Advances in Mental Health and Learning Disabilities, 1, 26–31.
  • Deb, S. Clarke, D. and Unwin, G. 2006, September. Using medication to manage behaviour problems among adults with a learning disability. University of Birmingham.
  • Deb, S., Sohanpal, S. K., Soni, R., Lenôtre, L. and Unwin, G. 2007. The effectiveness of antipsychotic medication in the management of behaviour problems in adults with intellectual disabilities. Journal of Intellectual Disability Research : JIDR, 51, 766–777.
  • De Kuijper, G., Degraeve, G. and Zintkstok, J. R. 2019. Voorschrijven van psychofarmaca bij mensen met een verstandelijke beperking: Handvatten voor de praktijk. Tijdschrift Voor Psychiatrie, 61, 786–791.
  • de Kuijper, G. M. and Hoekstra, P. J. 2017. Physicians’ reasons not to discontinue long-term used off-label antipsychotic drugs in people with intellectual disability. Journal of Intellectual Disability Research : JIDR, 61, 899–908.
  • de Kuijper, G., Hoekstra, P., Visser, F., Scholte, F. A., Penning, C. and Evenhuis, H. 2010. Use of antipsychotic drugs in individuals with intellectual disability (ID) in the Netherlands: Prevalence and reasons for prescription. Journal of Intellectual Disability Research : JIDR, 54, 659–667.
  • Deb, S.,Kwok, H.,Bertelli, M.,Salvador-Carulla, L.,Bradley, E.,Torr, J. andBarnhill, J. 2009. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry : official Journal of the World Psychiatric Association (WPA), 8, 181–186.
  • Deutsch, S. I. and Burket, J. A. 2021. Psychotropic medication use for adults and older adults with intellectual disability; selective review, recommendations and future directions. Progress in Neuro-Psychopharmacology & Biological Psychiatry, 104, 110017.
  • Deutsche Gesellschaft für Kinder- und Jugendpsychiatrie, Psychosomatik und Psychotherapie, Berufsverband für Kinder- und Jugendpsychiatrie, Psychosomatik und Psychotherapie, Bundesarbeitsgemeinschaft der Leitenden Klinikärzte für Kinder- und Jugendpsychiatrie, Psychosomatik und Psychotherapie, Deutsche Gesellschaft für Sozialpädiatrie und Jugendmedizin, Deutsche Gesellschaft für Psychiatrie und Psychotherapie, Psychosomatik und Nervenheilkunde, & Gesellschaft für Neuropädiatrie. 2014, December. S2k Praxisleitlinie Intelligenzminderung. AWMF Online. Geraadpleegd op 10 april 2021, van https://www.awmf.org/leitlinien/detail/ll/028-042.html
  • Deveau, R. and McGill, P. 2009. Physical interventions for adults with intellectual disabilities: Survey of use, policy, training and monitoring. Journal of Applied Research in Intellectual Disabilities, 22, 145–151.
  • Diamond, I. R., Grant, R. C., Feldman, B. M., Pencharz, P. B., Ling, S. C., Moore, A. M. and Wales, P. W. 2014. Defining consensus: A systematic review recommends methodologic criteria for reporting of Delphi studies. Journal of Clinical Epidemiology, 67, 401–409.
  • Došen, A. 2010. Psychische stoornissen, gedragsproblemen en verstandelijke handicap. Assen, the Netherlands: Koninklijke Van Gorcum.
  • Edwards, N., King, J., Williams, K. and Hair, S. 2020. Chemical restraint of adults with intellectual disability and challenging behaviour in Queensland, Australia: Views of statutory decision makers. Journal of Intellectual Disabilities : JOID, 24, 194–211.
  • Embregts. 2019. Multidisciplinaire Richtlijn Probleemgedrag bij volwassenen met een verstandelijke beperking. NVAVG, 2019.
  • Emerson, E., Kiernan, C., Alborz, A., Reeves, D., Mason, H., Swarbrick, R., Mason, L. and Hatton, C. 2001. The prevalence of challenging behaviors: A total population study. Research in Developmental Disabilities, 22, 77–93.
  • Erickson, S. R., Houseworth, J. and Esler, A. 2022. Factors associated with use of medication for behavioral challenges in adults with intellectual and developmental disability. Research in Developmental Disabilities, 123, 104182.
  • Federale Overheidsdienst. n.d. Bescherming van meerderjarigen. Federale overheidsdienst Justitie. https://justitie.belgium.be/nl/themas_en_dossiers/personen_en_gezinnen/bescherming_van_meerderjarigen
  • FOD Gezondheid. 2019, Juli. Bestuursovereenkomst 2019–2021. Geraadpleegd op 2 januari 2022, van https://www.health.belgium.be/nl/bestuursovereenkomst-2019-2021#anchor-35938
  • García‐Domínguez, L., Navas, P., Verdugo, M. N., Arias, V. B. and Gómez, L. E. 2022. Psychotropic drugs intake in people aging with intellectual disability: Prevalence and predictors. Journal of Applied Research in Intellectual Disabilities : JARID, 35, 1109–1118.
  • Gargon, E., Crew, R., Burnside, G. and Williamson, P. R. 2019. Higher number of items associated with significantly lower response rates in COS Delphi surveys. Journal of Clinical Epidemiology, 108, 110–120.
  • Gómez Sánchez, L. E., Morán Suárez, M. L., Al-Halabí Díaz, S., Swerts, C., Verdugo Alonso, M. Á. and Schalock, R. L. 2022. Quality of life and the international convention on the rights of persons with disabilities: Consensus indicators for assessment. Psicothema, 34, 182–191
  • Hagan, L. and Thompson, H. 2014. It’s good to talk: Developing the communication skills of an adult with an intellectual disability through augmentative and alternative communication. British Journal of Learning Disabilities, 42, 66–73.
  • Hove, O. and Havik, O. E. 2008. Mental disorders and problem behavior in a community sample of adults with intellectual disability: Three-month prevalence and comorbidity. Journal of Mental Health Research in Intellectual Disabilities, 1, 223–237.
  • Institut National D’excellence En Santé Et En Services Sociaux. 2021, mei. Troubles graves du comportement: Meilleures pratiques en prévention, en évaluation et en intervention auprès des personnes qui présentent une déficience intellectuelle, une déficience physique ou un trouble du spectre de l’autisme . INESSS. Geraadpleegd op, 14 mei 2021, van https://www.inesss.qc.ca/fileadmin/doc/INESSS/Rapports/ServicesSociaux/INESSS_TGC_EC.pdf
  • Koch, A. D., Vogel, A., Becker, T., Salize, H.-J., Voss, E., Werner, A., Arnold, K. and Schützwohl, M. 2015. Proxy and self-reported quality of life in adults with intellectual disabilities: Impact of psychiatric symptoms, problem behaviour, psychotropic medication and unmet needs. Research in Developmental Disabilities, 45-46, 136–146.
  • Lei, X. and Kantor, J. 2021. Correlates of social support and family quality of life in chinese caregivers of children with autism spectrum disorder. International Journal of Disability, Development and Education, 68, 1–14.
  • Lin, J. D. and Lin, L. P. 2021. Mental disorders and the impacts in older adults with intellectual disabilities. Review Journal of Autism and Developmental Disorders, 8, 239–243.
  • Lloyd, B. P. and Kennedy, C. H. 2014. Assessment and treatment of challenging behaviour for individuals with intellectual disability: A research review. Journal of Applied Research in Intellectual Disabilities : JARID, 27, 187–199.
  • Mahan, S., Holloway, J., Bamburg, J. W., Hess, J. A., Fodstad, J. C. and Matson, J. L. 2010. An examination of psychotropic medication side effects: Does taking a greater number of psychotropic medications from different classes affect presentation of side effects in adults with ID? Research in Developmental Disabilities, 31, 1561–1569.
  • Matson, J. L. and Mahan, S. 2010. Antipsychotic drug side effects for persons with intellectual disability. Research in Developmental Disabilities, 31, 1570–1576.
  • Matson, J. L. and Neal, D. 2009. Psychotropic medication use for challenging behaviors in persons with intellectual disabilities: An overview. Research in Developmental Disabilities, 30, 572–586.
  • McLaren, J. L. and Lichtenstein, J. D. 2019. The pursuit of the magic pill: The overuse of psychotropic medications in children with intellectual and developmental disabilities in the USA. Epidemiology and Psychiatric Sciences, 28, 365–368.
  • McMahon, M., Hatton, C. and Bowring, D. L. 2020. Polypharmacy and psychotropic polypharmacy in adults with intellectual disability: A cross‐sectional total population study. Journal of Intellectual Disability Research, 64, 834–851.
  • McMillan, S. S., King, M. and Tully, M. P. 2016. How to use the nominal group and Delphi techniques. International Journal of Clinical Pharmacy, 38, 655–662.
  • McPherson, S., Reese, C. and Wendler, M. C. 2018. Methodology update. Nursing Research, 67, 404–410.
  • Morisse, F. and Dosen, A. 2017. SEO-R2. 2de ed. Antwerpen, Belgium: Garant.
  • Morisse, F., Vandemaele, E., Claes, C., Claes, L. and Vandevelde, S. 2013. Quality of life in persons with intellectual disabilities and mental health problems: An explorative study. TheScientificWorldJournal, 2013, 491918.
  • Morisse, F., Vandevelde, S. and Došen, A. 2014. Mensen met een verstandelijke beperking en geestelijke gezondheidsproblemen: Een praktijkdefinitie. Vlaams Tijdschrift Voor Orthopedagogiek, 33, 21–33.
  • National Institute for Health and Care Excellence. 2015. Challenging behaviour and learning disabilities: Prevention and interventions for people with learning disabilities whose behaviour challenges. In National Institute for Health and Care Excellence (NG11). https://www.nice.org.uk/guidance/ng11
  • Nederlandse Vereniging van Artsen voor verstandelijk Gehandicapten 2016. Revisie NVAVG standaard: Voorschrijven van psychofarmaca. NVAVG. Geraadpleegd op 10 maart 2021, van https://nvavg.nl/wp-content/uploads/2019/07/16_367_NVAVG_richtlijn-Psychofarmaca_digitale-versie-WATERMERK.pdf
  • O’Dwyer, M., McCallion, P., McCarron, M. and Henman, M. 2018. Medication use and potentially inappropriate prescribing in older adults with intellectual disabilities: A neglected area of research. Therapeutic Advances in Drug Safety, 9, 535–557.
  • Ramerman, L. 2019. Off-label use of antipsychotic medication in people with intellectual disabilities: adherence to guidelines, long-term effectiveness, and effects on quality of life. Groningen, the Netherlands: Rijksuniversiteit Groningen.
  • Ramerman, L., Hoekstra, P. J. and de Kuijper, G. 2019. Changes in health-related quality of life in people with intellectual disabilities who discontinue long-term used antipsychotic drugs for challenging behaviors. Journal of Clinical Pharmacology, 59, 280–287.
  • Sanders, K. 2009. The effects of an action plan, staff training, management support and monitoring on restraint use and costs of work-related injuries. Journal of Applied Research in Intellectual Disabilities, 22, 216–220.
  • Sappok, T., Došen, A., Zepperitz, S., Barrett, B., Vonk, J., Schanze, C., Ilic, M., Bergmann, T., De Neve, L., Birkner, J., Zaal, S., Bertelli, M. O., Hudson, M., Morisse, F. and Sterkenburg, P. 2020. Standardizing the assessment of emotional development in adults with intellectual and developmental disability. Journal of Applied Research in Intellectual Disabilities : JARID, 33, 542–551.
  • Schalock, R. L., Borthwick-Duffy, S. A., Buntinx, W. H. E., Coulter, D. L. and Craig, E. M. 2009. Intellectual disability: Definition, classification, and systems of supports. 11th ed. Washington: American Association on Intellectual and Developmental Disabilities.
  • Schalock, R. L., Keith, K. D., Verdugo, M. and Gómez, L. E. 2010. Quality of life model development and use in the field of intellectual disability. In: R. Kober (Red.) Enhancing the Quality of Life of People with Intellectual Disabilities. Dordrecht: Springer, p.17–32.
  • Schalock, R. L., Luckasson, R. and Tassé, M. J. 2021. An overview of intellectual disability: Definition, diagnosis, classification, and systems of Supports (12th ed.). American Journal on Intellectual and Developmental Disabilities, 126, 439–442.
  • Schalock, R. L. and Verdugo, M. A. 2002. Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.
  • Schalock, R. L., Verdugo, M. A., Gomez, L. E. and Reinders, H. S. 2016. Moving us toward a theory of individual quality of life. American Journal on Intellectual and Developmental Disabilities, 121, 1–12.
  • Schalock, R. L., Verdugo, M. A., Jenaro, C., Wang, M., Wehmeyer, M., Jiancheng, X. and Lachapelle, Y. 2005. Cross-cultural study of quality of life indicators. American Journal on Mental Retardation, 110, 298.2.0.CO;2]
  • Scheifes, A., Walraven, S., Stolker, J. J., Nijman, H. L., Egberts, T. C. and Heerdink, E. R. 2016. Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs. Research in Developmental Disabilities, 49-50, 13–21.
  • Sheehan, R. 2018. Optimising psychotropic medication use. Tizard Learning Disability Review, 23, 22–26.
  • Sheehan, R. and Hassiotis, A. 2017. Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: A systematic review. The Lancet. Psychiatry, 4, 238–256.
  • Sheehan, R., Hassiotis, A., Walters, K., Osborn, D., Strydom, A. and Horsfall, L. 2015. Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ, 351, h4326.
  • Smith, M., Manduchi, B., Burke, E., Carroll, R., McCallion, P. and McCarron, M. 2020. Communication difficulties in adults with Intellectual Disability: Results from a national cross-sectional study. Research in Developmental Disabilities, 97, 103557.
  • Sturmey, P. 2009. It is time to reduce and safely eliminate restrictive behavioural practices. Journal of Applied Research in Intellectual Disabilities, 22, 105–110.
  • Sullivan, W.F., Berg, J.M., Bradley, E., Cheetham, T., Denton, R., Heng, J., Hennen, B., Joyce, D., Kelly, M., Korossy, M. and Lunsky, Y. 2011. Primary care of adults with developmental disabilities: Canadian consensus guidelines. Canadian Family Physician, 57, 541–553.
  • Trollor, J. N., Salomon, C. and Franklin, C. 2016. Prescribing psychotropic drugs to adults with an intellectual disability. Australian Prescriber, 39, 126–130.
  • Unwin, G. and Deb, S. 2010. The use of medication to manage behaviour problems in adults with an intellectual disability: A national guideline. Advances in Mental Health and Intellectual Disabilities, 4, 4–11.
  • Verdugo, M. A., Navas, P., Gómez, L. E. and Schalock, R. L. 2012. The concept of quality of life and its role in enhancing human rights in the field of intellectual disability. Journal of Intellectual Disability Research : JIDR, 56, 1036–1045.
  • Von der Gracht, H. A. 2012. Consensus measurement in Delphi studies. Technological Forecasting and Social Change, 79, 1525–1536.
  • Walsh, P. N., Emerson, E., Lobb, C., Hatton, C., Bradley, V. J., Schalock, R. L. and Moseley, C. B. 2010. Supported accommodation for people with intellectual disabilities and quality of life: An overview. Journal of Policy and Practice in Intellectual Disabilities, 7, 137–142.
  • Wang, M., Schalock, R. L., Verdugo, M. A. and Jenaro, C. 2010. Examining the factor structure and hierarchical nature of the quality of life construct. American Journal on Intellectual and Developmental Disabilities, 115, 218–233. 10.1352/1944-7558-115.3.218
  • Wet zorg en dwang: wat is onvrijwillige zorg?. 2022, 9 November. kennispleingehandicaptensector_nl. https://www.kennispleingehandicaptensector.nl/tips-tools/tools/wet-zorg-en-dwang-wat-is-onvrijwillige-zorg