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A systematic review of the psychometric properties of tools for measuring depression in youths with intellectual disability

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Abstract

While youths with intellectual disability (ID) have increased vulnerability for depressive disorders, cognitive problems and combined functional barriers make them less prone to receive adequate treatments. A systematic review of the literature was conducted (PROSPERO Registration number: CRD42022347703) based on several databases from 1980 to 2022 to examine the quality of tools for measuring depression in children and adolescents with ID. The COSMIN (COnsensus-based Standards for the selection of health status Measurement Instruments) checklist was used to assess several psychometric domains. Twelve studies evaluated the properties of six tools for measuring depression in youths with ID. The Center for Epidemiologic Studies Depression Scale—Intellectual Disability (CESD-ID) was the only scale with at least five domains of psychometric properties assessed to have strong or moderate evidence. Based on the reviewed findings, tools specifically developed for populations with developmental disabilities should be considered first in order to screen depression in youths with ID. Much work is required to confirm their validity in clinical samples with patients with a complex form of developmental disabilities. As a complement to self- and caregivers-report questionnaires, clinician rating scales were considered useful to catch the full picture of depression in youths with ID, in particular associated behavioral expressions. Their validity received little scrutiny and certainly deserve more attention to improve care practice of youths with ID.

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References

  1. Achenbach TM (1991) Integrative guide for the 1991 CBCL/4–18, YSR, and TRF profiles. In: Psychiatry Do (ed), University of Vermont

  2. Ailey SH (2000) Screening adolescents with mental retardation for depression. J Sch Nurs 16:6–11

    Article  CAS  PubMed  Google Scholar 

  3. American Psychiatric Association (2022) Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, Text Revision. American Psychiatric Association, Washington, D.C.

  4. Angold A, Costello E, Messer S, Pickles A, Winder F, Silver D (1995) The development of a questionnaire for use in epidemiological studies of depression in children and adolescents. Int J Methods Psychiatr Res 5:237–249

    Google Scholar 

  5. Argus GR, Terry PC, Bramston P, Dinsdale SL (2004) Measurement of mood in adolescents with intellectual disability. Res Dev Disabil 25:493–507

    Article  PubMed  Google Scholar 

  6. Astle DE, Holmes J, Kievit R, Gathercole SE (2022) Annual research review: the transdiagnostic revolution in neurodevelopmental disorders. J Child Psychol Psychiatry 63:397–417

    Article  PubMed  Google Scholar 

  7. Austin KL, Hunter M, Gallagher E, Campbell LE (2018) Depression and anxiety symptoms during the transition to early adulthood for people with intellectual disabilities. J Intellect Disabil Res 62:407–421

    Article  CAS  PubMed  Google Scholar 

  8. Benarous X (2016) The RDoC roadmap to explore neurocognitive difficulties of youths with severely dysregulated mood: Current findings and prospects. Eur Psychiatry 4988:S1–S805

    Google Scholar 

  9. Benarous X, Raffin M, Ferrafiat V, Consoli A, Cohen D (2017) Catatonia in children and adolescents: New perspectives. Schizophr Res

  10. Benavidez DA, Matson JL (1993) Assessment of depression in mentally retarded adolescents. Res Dev Disabil 14:179–188

    Article  CAS  PubMed  Google Scholar 

  11. Consoli A, Raffin M, Laurent C, Bodeau N, Campion D, Amoura Z, Sedel F, An-Gourfinkel I, Bonnot O, Cohen D (2012) Medical and developmental risk factors of catatonia in children and adolescents: a prospective case-control study. Schizophr Res 137:151–158

    Article  PubMed  Google Scholar 

  12. Cooper S, Collacott R (1996) Depressive episodes in adults with intellectual disabilities. Irish J Psychol Med 13:1

    Article  Google Scholar 

  13. Cuthill FM, Espie CA, Cooper SA (2003) Development and psychometric properties of the Glasgow depression scale for people with a learning disability. Individual and carer supplement versions. Br J Psychiatry 182:347–353

    Article  PubMed  Google Scholar 

  14. Dalley MB, Bolocofsky DN, Alcorn MB, Baker C (1992) Depressive symptomatology, attributional style, dysfunctional attitude, and social competency in adolescents with and without learning disabilities. Sch Psychol Rev 21:444–458

    Article  Google Scholar 

  15. De Vet HCW, Terwee CB, Mokkink LB, Knol DL (2011) Measurement in medicine. A practical guide. Cambridge University Press, Cambridge

    Book  Google Scholar 

  16. Deb S, Matthews T, Holt G, Bouras N (2001) Practice Guidelines for the assessment and diagnosis of mental health problems in adults with intellectual disabilities. Pavilion, Brighton, UK

  17. Deb S, Perera B, Krysta K, Ozer M, Bertelli M, Novell R, Wieland J, Sappok T (2022) The European guideline on the assessment and diagnosis of psychiatric disorders in adults with intellectual disabilities. Eur J Psychiatry 36:1

    Article  Google Scholar 

  18. Eaton C, Tarver J, Shirazi A, Pearson E, Walker L, Bird M, Oliver C, Waite J (2021) A systematic review of the behaviours associated with depression in people with severe–profound intellectual disability. J Intellect Disabil Res 65:211–229

    Article  CAS  PubMed  Google Scholar 

  19. Esbensen AJ, Rojahn J, Aman MG, Ruedrich S (2003) Reliability and validity of an assessment instrument for anxiety, depression, and mood among individuals with mental retardation. J Autism Dev Disord 33:617–629

    Article  PubMed  Google Scholar 

  20. European Federation of Psychologists' Association (2013) EFPA review model for the description and evaluation of psychological tests: Test review form and notes for reviewers. In: EPFPA (ed)

  21. Feinstein C, Kaminer Y, Barrett R, Tylenda B (1988) The assessment of mood and affect in developmentally disabled children and adolescents: the Emotional Disorders Rating Scale. Res Dev Disabil 9:109–121

    Article  CAS  PubMed  Google Scholar 

  22. Flynn S, Vereenooghe L, Hastings RP, Adams D, Cooper SA, Gore N, Hatton C, Hood K, Jahoda A, Langdon PE, McNamara R, Oliver C, Roy A, Totsika V, Waite J (2017) Measurement tools for mental health problems and mental well-being in people with severe or profound intellectual disabilities: a systematic review. Clin Psychol Rev 57:32–44

    Article  PubMed  Google Scholar 

  23. Gilmore L, Campbell M, Shochet I (2022) Adapting self-report measures of mental health for children with intellectual disability. J Mental Health Res Intell Disabil 15:1–19

    Article  Google Scholar 

  24. Goegan A, Daniels RL (2018) Accessibility in questionnaire research: Integrating universal design to increase the participation of individuals with learning disabilities. Learn Disabilities Contemp J 16:177–190

    Google Scholar 

  25. Halvorsen MB, Helverschou SB, Axelsdottir B, Brøndbo PH, Martinussen M (2022) General Measurement Tools for Assessing Mental Health Problems Among Children and Adolescents with an Intellectual Disability: A Systematic Review. J Autism Dev Disord

  26. Hassiotis A, Turk J (2012) Mental health needs in adolescents with intellectual disabilities: cross-sectional survey of a service sample. J Appl Res Intellect Disabil 25:252–261

    Article  CAS  PubMed  Google Scholar 

  27. Haynes SN, Richard DC, Kubany ES (1995) Content validity in psychological assessment : a functional approach to concepts and methods. In: association AP (ed) Psychological Assessment. Washington, DC, p 238–247

  28. Heal LW, Sigelman CK (1995) Response biases in interviews of individuals with limited mental ability. J Intellect Disabil Res 39:331–340

    Article  PubMed  Google Scholar 

  29. Kaminer Y, Feinstein C, Seifer R, Stevens L, Barrett RP (1990) An observationally based rating scale for affective symptomatology in child psychiatry. J Nerv Ment Dis 178:750–754

    Article  CAS  PubMed  Google Scholar 

  30. Kobe FH, Hammer D (1994) Parenting stress and depression in children with mental retardation and developmental disabilities. Res Dev Disabil 15:209–221

    Article  CAS  PubMed  Google Scholar 

  31. Kovacs M (1992) Children’s Depression Inventory. Multi-Health Systems Inc, NY

    Google Scholar 

  32. Maïano C, Morin AJ, Bégarie J (2011) The Center for Epidemiologic Studies Depression Scale: factor validity and reliability in a French sample of adolescents with Intellectual Disability. Res Dev Disabil 32:1872–1883

    Article  PubMed  Google Scholar 

  33. Manikam R, Matson JL, Coe DA, Hillman N (1995) Adolescent depression: relationships of self-report to intellectual and adaptive functioning. Res Dev Disabil 16:349–364

    Article  CAS  PubMed  Google Scholar 

  34. Marston GM, Perry DW, Roy A (1997) Manifestations of depression in people with intellectual disability. J Intellect Disabil Res 41(Pt 6):476–480

    Article  PubMed  Google Scholar 

  35. Masi G, Brovedani P, Mucci M, Favilla L (2002) Assessment of anxiety and depression in adolescents with mental retardation. Child Psychiatry Hum Dev 32:227–237

    Article  PubMed  Google Scholar 

  36. Masi G, Mucci M, Favilla L, Poli P (1999) Dysthymic disorder in adolescents with intellectual disability. J Intellect Disabil Res 43(Pt 2):80–87

    Article  PubMed  Google Scholar 

  37. Matson JL, Barrett RP, Helsel WJ (1988) Depression in mentally retarded children. Res Dev Disabil 9:39–46

    Article  CAS  PubMed  Google Scholar 

  38. Maughan B, Collishaw S, Pickles A (1999) Mild mental retardation: psychosocial functioning in adulthood. Psychol Med 29:351–366

    Article  CAS  PubMed  Google Scholar 

  39. McBrien JA (2003) Assessment and diagnosis of depression in people with intellectual disability. J Intellect Disabil Res 47:1–13

    Article  CAS  PubMed  Google Scholar 

  40. Moher D, Liberati A, Tetzlaff J, Altman DG, Group P (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. BMJ 339:b2535

    Article  Google Scholar 

  41. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, al e, (2010) The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res 19:539–549

    Article  PubMed  PubMed Central  Google Scholar 

  42. Morin D, Cobigo V, Rivard M, Lépine M (2010) Intellectual disabilities and depression: how to adapt psychological assessment and intervention. Can Psychol 51:185–193

    Article  Google Scholar 

  43. Navarrete LA (1999) Melancholy in the millennium: a study of depression among adolescents with and without learning disabilities. High School Journal 82:137

    Google Scholar 

  44. Olivier E, Lacombe C, Morin AJS, Houle SA, Gagnon C, Tracey D, Craven RG, Maïano C (2021) Validation of a revised version of the center for epidemiologic depression scale for youth with intellectual disabilities (cesd-id-r). J Autism Dev Disord:No Pagination Specified-No Pagination Specified

  45. Pawlarcyzk D, Beckwith B (1987) Depressive symptoms displayed by persons with mental retardation: a review. Ment Retard 25:323–330

    Google Scholar 

  46. Perez-Achiaga N, Nelson S, Hassiotis A (2009) Instruments for the detection of depressive symptoms in people with intellectual disabilities: a systematic review. J Intellect Disabil 13:55–76

    Article  CAS  PubMed  Google Scholar 

  47. Radloff LS (1977) The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Meas 1:385–401

    Article  Google Scholar 

  48. Reich W (2000) Diagnostic interview for children and adolescents (DICA). J Am Acad Child Adolesc Psychiatry 39:59–66

    Article  CAS  PubMed  Google Scholar 

  49. Reiss S, Havercamp SM (1998) Toward a comprehensive assessment of fundamental motivation: factor structure of the Reiss Profiles. Psychol Assess 10:97–106

    Article  Google Scholar 

  50. Reiss S, Levitan G, Szyszko J (1982) Emotional disturbance and mental retardation: diagnostic overshadowing. Am J Ment Defic 86:567–574

    CAS  PubMed  Google Scholar 

  51. Reiss S, Rojahn J (1993) Joint occurrence of depression and aggression in children and adults with mental retardation. J Intellect Disabil Res 37:287–294

    Article  PubMed  Google Scholar 

  52. Reynolds WM, Baker JA (1988) Assessment of depression in persons with ID. Am J Ment Defic 93:93–103

    CAS  Google Scholar 

  53. Reynolds WM, Miller KL (1985) Depression and learned helplessness in mentally retarded and nonmentally retarded adolescents: an initial investigation. Appl Res Ment Retard 6:295–306

    Article  CAS  PubMed  Google Scholar 

  54. Richards M, Maughan B, Hardy R, Hall I, Strydom A, Wadsworth M (2001) Long-term affective disorder in people with mild learning disability. Br J Psychiatry 179:523–527

    Article  CAS  PubMed  Google Scholar 

  55. Rojahn J, Warren VJ, Ohringer S (1994) A comparison of assessment methods for depression in mental retardation. J Autism Dev Disord 24:305–313

    Article  CAS  PubMed  Google Scholar 

  56. Sikabofori T, Iyer A (2012) Chapter 3. Depressive disorders in people with intellectual disabilities. In: Anxiety and Depression in People with Intellectual Disabilities. Pavilion, p 51–74

  57. Smiley E, Cooper SA (2003) Intellectual disabilities, depressive episode, diagnostic criteria and diagnostic criteria for psychiatric disorders for use with adults with learning disabilities/mental retardation (DC-LD). J Intellect Disabil Res 47(Suppl 1):62–71

    Article  PubMed  Google Scholar 

  58. Terwee CB, Jansma EP, Riphagen II, de Vet HCW (2009) Development of a methodological PubMed search filter for finding studies on measurement properties of measurement instruments. Qual Life Res 18:1115–1123

    Article  PubMed  PubMed Central  Google Scholar 

  59. Thapar A, Collishaw S, Pine DS, Thapar AK (2012) Depression in adolescence. The Lancet 379:1056–1067

    Article  Google Scholar 

  60. Valicenti-McDermott M, Rivelis E, Bernstein C, Cardin MJ, Seijo R (2021) Screening for depression in adolescents with developmental disabilities: brief report. J Child Adolesc Psychopharmacol 31:572–576

    Article  PubMed  Google Scholar 

  61. Vandekamp KJO ( 2001) A comparison study of depression, daily hassles, and social support in adolescents with and without intellectual disabilities. In: School Psychology. University of British Columbia

  62. Whitney J, Howe M, Shoemaker V, Li S, Sanders EM, Dijamco C, Acquaye T, Phillips J, Singh M, Chang K (2013) Socio-emotional processing and functioning of youth at high risk for bipolar disorder. J Affect Disord 148:112–117

    Article  PubMed  Google Scholar 

  63. World Health Organization (2018) International Classification of Diseases, 11th Revision (ICD-11). In:https://icd.who.int/en

  64. Young-Southward G, Rydzewska E, Philo C, Cooper SA (2017) Physical and mental health of young people with and without intellectual disabilities: cross-sectional analysis of a whole country population. J Intellect Disabil Res 61:984–993

    Article  CAS  PubMed  Google Scholar 

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Authors and Affiliations

  1. Pitié-Salpêtrière Hospital, APHP, Sorbonne Université, Paris, France

    Xavier Benarous, Cora Cravero, Angèle Consoli & David Cohen

  2. Amiens University Hospital, Amiens, France

    Sandy Walesa, Jean-Marc Guilé & Hélène Lahaye

  3. Rouen University Hospital, Rouen, France

    Héloïse Young

  4. Université du Québec À Montréal, Montréal, Canada

    Real Labelle

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  1. Xavier Benarous
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  2. Sandy Walesa
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Contributions

Study concept and design: XB, JMG, RL, HL Acquisition of data: XB, SW, HL, HY Interpretation of data: XB, SW, JMG, RL, HL, DC, CC, AC, HY Drafting the manuscript: XB, JMG, RL, HL, DC Critical revision of the manuscript for important intellectual content: JMG, RL, HL, DC, CC, AC, HY Final draft : All authors

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Correspondence to Xavier Benarous.

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Benarous, X., Walesa, S., Guilé, JM. et al. A systematic review of the psychometric properties of tools for measuring depression in youths with intellectual disability. Eur Child Adolesc Psychiatry (2024). https://doi.org/10.1007/s00787-024-02405-x

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