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Mental illness, problem behaviour, needs and service use in adults with intellectual disability

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Abstract

Purpose

Mental ill health in adults with intellectual disability (ID) is a neglected field in psychiatry and thus still widely understudied. This paper provides data on the prevalence of mental illness and problem behaviour and analyses support needs, mental health service use and psychotropic medication in a representative sample of adults with mild to moderate ID.

Methods

A set of well-established instruments was used to assess the main parameters in n = 371 participants recruited within a cross-sectional epidemiological multicentre study using a stratified randomised cluster sampling.

Results

Point prevalence of mental disorders was 10.8 %, that of problem behaviour 45.3 %. Most study participants needed help in specific lower order need areas (e.g., money budgeting, food, accommodation), and these need areas were mostly rated as met. The highest ratios of unmet to met need were found with respect to sexuality issues and with respect to mental health problems. The focus of psychiatric treatment was psychotropic medication.

Conclusions

Referring to ICD-10 based diagnostic criteria and consequently avoiding confusing problem behaviour with mental disorders, point prevalence of mental disorders was lower than in the general population. A systematic deficit in meeting mental health problems in adults with ID indicates the need for implementing strategies to maximise the quality of identification and management of mental disorders.

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References

  1. UN General Assembly. Convention on the rights of persons with disabilities: A/RES/61/106.2006

  2. Deb S, Kwok H, Bertelli M, Salavdor-Carulla L, Bradley E, Torr J, Barnhill J, for the Guideline Development Group of the WPA Section on Psychiatry of Intellectual Disability (2009) International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry 8:181–186

    Article  PubMed  PubMed Central  Google Scholar 

  3. Joint Commissioning Panel for Mental Health (2013) Guidance for commissioners of mental health services for people with learning disabilities. JCP-MH, London

    Google Scholar 

  4. Schrappe M, Pfaff H (2011) Versorgungsforschung: Konzept und Methodik (Health services research: concept and methods). Dtsch Med Wochenschr 136:381–386

    Article  CAS  PubMed  Google Scholar 

  5. Whitacker S, Read S (2006) The prevalence of psychiatric disorders among people with intellectual disabilities: an analysis of the literature. J Appl Res Intellect 19:330–345

    Article  Google Scholar 

  6. Buckles J, Luckasson R, Keefe E (2013) A systematic review of the prevalence of psychiatric disorders in adults with intellectual disability, 2003–2010. J Mental Health Res Intellect Disabil 6:181–207

    Article  Google Scholar 

  7. Cooper S, Smiley E, Morrison J, Williamson A, Allan L (2007) Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. Br J Psychiatry 190:27–35

    Article  PubMed  Google Scholar 

  8. Ali A, Blickwedel J, Hassiotis A (2014) Interventions for challenging behaviour in intellectual disabilities. Adv Psychiatr Treat 20:184–192

    Article  Google Scholar 

  9. Myrbakk E, von Tetzchner S (2008) Psychiatric disorders and behaviour problems in people with intellectual disability. Res Dev Disabil 29:316–332

    Article  PubMed  Google Scholar 

  10. Bertelli MO, Rossi M, Scuticchio D, Bianco A (2015) Diagnosing psychiatric disorders in people with intellectual disabilities: issues and achievements. AMHID 9:230–242

    Google Scholar 

  11. Thakker Y, Bamidele K, Ali A, Hassiotis A (2012) Mental health and challenging behaviour: an overview of research and practice. AMHID 6:249–258

    Google Scholar 

  12. Xenitidis K, Thornicroft G, Leese M, Slade M, Fotiadou M, Philip H, Sayer J, Harris E, McGee D, Murphy DGM (2000) Reliability and validity of the CANDID—a needs assessment instrument for adults with learning disabilities and mental health problems. Br J Psychiatry 176:473–478

    Article  CAS  PubMed  Google Scholar 

  13. Tsiouris JA, Kim SY, Brown WT, Pettinger J, Cohen IL (2013) Prevalence of psychotropic drug use in adults with intellectual disability: positive and negative findings from a large scale study. J Autism Dev Disord 43:719–731

    Article  PubMed  Google Scholar 

  14. Koch A, Vogel A, Holzmann M, Pfennig A, Salize HJ, Puschner B, Schützwohl M (2014) MEMENTA—‘mental healthcare provision for adults with intellectual disability and a mental disorder’. A cross-sectional epidemiological multisite study assessing prevalence of psychiatric symptomatology, needs for care and quality of healthcare provision for adults with intellectual disability in Germany: a study protocol. BMJ Open. doi:10.1136/bmjopen-2014-004878

    Google Scholar 

  15. Luckasson R, Schalock RL, Spitalnick DM, Spreat S (2002) Mental retardation: definition, classification, and systems of support, 10th edn. American Association on Mental Retardation, Washington

    Google Scholar 

  16. Gaese F (2007) Intelligenzminderung (F7). In: Schanze C (ed) Psychiatrische Diagnostik und Therapie bei Menschen mit Intelligenzminderung. Schattauer, Stuttgart, pp 131–144

    Google Scholar 

  17. Moss S (2002) PAS-ADD checklist. Pavilion Pub Publishing and Media, Brighton

    Google Scholar 

  18. Zeilinger EL, Weber G, Haveman MJ (2011) Psychometric properties and norms of the German ABC-community and PAS-ADD checklist. Res Dev Disabil 32:2431–2440

    Article  PubMed  Google Scholar 

  19. Moss S (2002) The mini PAS-ADD interview pack. Pavilion Publishing and Media, Brighton

    Google Scholar 

  20. Prosser H, Moss S, Costello H, Simpson N, Patel P, Rowe S (1998) Reliability and validity of the mini PAS-ADD for assessing psychiatric disorders in adults with intellectual disability. J Intellect Disabil Res 42:264–272

    Article  PubMed  Google Scholar 

  21. Aman MG, Singh NN (1994) Aberrant behavior checklist-community. Slosson Educational Publications Inc, East Aurora

    Google Scholar 

  22. Xenitidis K, Slade M, Thornicroft G, Bouras N (2003) CANDID: Camberwell assessment of need for adults with developmental and intellectual disabilities. Gaskell, London

    Google Scholar 

  23. Chisholm D, Knapp MR, Knudsen HC, Amaddeo F, Gaite L, van Wijngaarden B (2000) Client socio-demographic and Service receipt inventory—European version: development of an instrument for international research. Br J Psychiatry Suppl 177:s28–s33

    Article  Google Scholar 

  24. Jacobi F, Wittchen HU, Hölting C, Höfler M, Pfister H, Müller N, Lieb R (2004) Prevalence, co-morbidity and correlates of mental disorders in the general population: results from the German Health Interview and Examination Survey (GHS). Psychol Med 34:597–611

    Article  CAS  PubMed  Google Scholar 

  25. Deb S, Thomas M, Bright C (2001) Mental disorder in adults with intellectual disability. 1: prevalence of functional psychiatric illness among a community-based population aged between 16 and 64 years. J Intellect Disabil Res 45:495–505

    Article  CAS  PubMed  Google Scholar 

  26. Cooper SA, Smiley E, Morrison J, Allan L, Williamson A, Finlayson J, Jackson A, Mantry D (2007) Psychosis and adults with intellectual disabilities. Prevalence, incidence, and related factors. Soc Psychiatry Psychiatr Epidemiol 42:530–536

    Article  PubMed  Google Scholar 

  27. Mavrogiorgou P, Schabos O, Juckel G, Hoffmann K (2015) Zwangsstörung bei Menschen mit intellektueller Entwicklungsstörung. (Obsessive compulsive symptoms in persons with intellectual disabilities). Fortschr Neurol Psychiatr 83:314–320

    Article  CAS  PubMed  Google Scholar 

  28. Emerson E, Kiernan C, Alborz A, Reeves D, Mason H, Swarbrick R, Mason L, Hatton C (2001) The prevalence of challenging behaviors: a total population study. Res Dev Disabil 22:77–93

    Article  CAS  PubMed  Google Scholar 

  29. Deb S, Thomas M, Bright C (2001) Mental disorder in adults with intellectual disability. 2: the rate of behaviour disorders among a community-based population aged between 16 and 64 years. J Intellect Disabil Res 45:506–514

    Article  CAS  PubMed  Google Scholar 

  30. Raghavan R, Marshall M, Lockwood A, Duggan L (2004) Assessing the needs of people with learning disabilities and mental illness: development of the learning disability version of the cardinal needs schedule. J Intellect Disabil Res 48:25–36

    Article  CAS  PubMed  Google Scholar 

  31. McCausland Guerin A, Tyrrell J, Donohore C, O’Donoghue I, Dodd P (2010) Self-reported needs among older persons with intellectual disabilities in an Irish community-based service. Res Dev Disabil 31:381–387

    Article  PubMed  Google Scholar 

  32. Strydom A, Hassiotis A, Livingston G (2005) Mental health and social care needs of older people with intellectual disabilities. J Appl Res Intellect 18:229–235

    Article  Google Scholar 

  33. Meins W (1988) Psychopharmakagebrauch bei geistig behinderten Erwachsenen. (Use of psychotropic drugs in mentally handicapped adults). Psychiat Prax 6:218–222

    Google Scholar 

  34. Matson JL, Neal D (2009) Psychotropic medication use for challenging behaviors in persons with intellectual disabilities: an overview. Res Dev Disabil 30:572–586

    Article  PubMed  Google Scholar 

  35. Mack S, Jacobi F, Gerschler A, Strehle J, Höfler M, Busch MA, Maske UE, Hapke U, Seoiffert I, Gäbel W, Zielasek J, Maier W, Wittchen HU (2014) Self-reported utilization of mental health services in the adult German population—evidence for unmet needs? Results of the DEGS1-mental health module (DEGS1-MH). Int J Method Psych 23:289–303

    Article  Google Scholar 

  36. Bertelli MO, Rossi M, Scuticchio D, Bianco A (2015) Diagnosing psychiatric disorders in people with intellectual disabilities: issues and achievements. AMHID 9:230–242

    Google Scholar 

  37. Lennox N, Taylor M, Rey-Conde T, Bain C, Purdle DM, Boyle F (2005) Beating the barriers: recruitment of people with intellectual disability to participate in research. J Intellect Disabil Res 49:296–305

    Article  CAS  PubMed  Google Scholar 

  38. Bjelogrlic-Laakso N, Aaltonen S, Dorn T, Arvio M (2014) Need for special units for the management of neuropsychiatric disorders in people with intellectual disabilities. Acta Psychiatr Scan 130:77–79

    Article  CAS  Google Scholar 

  39. Healy E, McGuire BE, Evans DS, Carley SN (2009) Sexuality and personal relationships for people with an intellectual disability. Part I: service user perspectives. J Intellect Disabil Res 53:905–912

    Article  CAS  PubMed  Google Scholar 

  40. Evans DS, McGuire BE, Evans DS, Healy E, Carley SN (2009) Sexuality and personal relationships for people with an intellectual disability. Part II: staff and family carer perspectives. J Intellect Disabil Res 53:913–921

    Article  CAS  PubMed  Google Scholar 

  41. Raghavan R, Patel P (2010) Ethical issues of psychotropic medication for people with intellectual disabilities. AMHID 4:34–38

    Google Scholar 

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Acknowledgments

This work is part of the study “Mental health care provision for adults with mental retardation and a psychiatric diagnosis (MEMENTA)” which has been funded by the German Federal Ministry for Education and Research (Grant number 01GY1134). We are grateful for the work of all interviewers and for the German Federal Ministry for Education and Research (BMBF) for their financial support. We appreciate the great support of participating ID services and all persons with ID and their family members for their participation in the MEMENTA-Study.

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Correspondence to Matthias Schützwohl.

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Schützwohl, M., Koch, A., Koslowski, N. et al. Mental illness, problem behaviour, needs and service use in adults with intellectual disability. Soc Psychiatry Psychiatr Epidemiol 51, 767–776 (2016). https://doi.org/10.1007/s00127-016-1197-4

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  • DOI: https://doi.org/10.1007/s00127-016-1197-4

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