Down syndrome: Systematic review of the prevalence and nature of presentation of unipolar depression

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1 Down syndrome: Systematic review of the prevalence and nature of presentation of unipolar depression Dr Catherine Walton CT3, Cwm Taf University Health Board, Wales Supervised by: Professor Michael Kerr Clinical Professor, Institute of Psychological Medicine and Clinical Neurosciences, Cardiff University

2 Case AB, male in mid-late 30 s with DS (severe ID). Lived all his life with his parents. No previous contact with MH services Father passed away, G stays with mother, seemingly settled Some months later: change in behaviour at work and at home: destructive, distressed: crying day and night, oversensitive to small changes in daily routine. GP review: some issues with physical health Continued problems, mother elderly and having difficulty in coping Moved to supported accommodation further worsening presentation Finally. referral to MH services: at this point requiring inpatient care. Timely recognition of a MH problem? Easier to spot on a timeline (!)

3 Depression Most common MH problem diagnosed in community samples Morbidity Diagnosis not always straightforward General population ID population Communication of innermost thoughts and feelings Diagnostic overshadowing The consequence of impaired detection? NCCMH (2010) Depression: The NICE Guideline on the Treatment and Management of Depression in Adults (Updated edition). Matson et al (1999) Characteristics of Depression as Assessed by the Diagnostic Assessment for the Severely Handicapped-II (Dash-II). Research in Developmental Disabilities. 20(4),

4 DS and depression DS most common chromosomal abnormality leading to ID Research has highlighted suggested vulnerability to depression possible link between signs and symptoms of depression and the development Alzheimer s disease ( prodrome ) Walker, J.C., Dosen, A., Buitalaar, J.K., & Janzing, J.G.E. (2011) Depression in Down Syndrome: A review of the literature. Research in Developmental Disabilities. 32, Dykens, E.M. (2007) Psychiatric and Behavioural Disorders in Persons with Down Syndrome. Mental Retardation and Developmental Disabilities Research Reviews. 13,

5 AIM Assess for the PREVALENCE and NATURE of presentation of unipolar depression in DS. Systematic review

6 Methods PRISMA (2009) checklist followed where possible

7 Eligibility criteria Participants Individuals with DS No limitations for age or gender Intervention Primary research investigating the prevalence and nature of presentation of symptoms of depression in DS. Exclude challenging behaviour Exclude studies pertaining to AD. Exclude bipolar affective disorder. Exclude studies pre-dating 1990 Exclude studies not in the English language

8 Comparison The aim is to complete a systematic review analysis of the studies found. Outcome Data for the prevalence of unipolar depression in DS and the nature of its presentation. Study design Primary research excluding individual case studies.

9 Information sources Cardiff University s Electronic Portal of databases Medline Embase PsychInfo Web of Science CINAHL. English language, peer reviewed journals Published between 1 st January 1990 and 30 th September 2013 Relevant journals, review articles and bibliographies hand searched

10 Terms kept broad: Search strategy Down Syndrome combined with: Psychopathology Depression Mood disorder Or Affective disorder

11 Summary methods Item Criteria Score Number of participants >100 > <30 Characteristics of participants Psychopathology of the participants Group representing target population of the instrument (screening for depression) >20-50% of participants had depression 10-20% or >50-90% had depression <10% or >90% of the participants had depression Unclear / Gold standard Report on measures of validity Clinical diagnosis by a psychiatrist or psychologist based on standard diagnostic system Clinical diagnosis by a psychiatrist or psychologist Other depression screening instrument used as reference standard All other Not applicable Standard deviation or standard error, or confidence interval is reported /1 Hermans, H. & Evenhuis, H.M. (2010) Characteristics of instruments screening for depression in adults with intellectual disabilities: Systematic Review. Research in Developmental Disabilities

12 Results 634 records iden fied through database searches 2 records iden fied through hand searching review ar cles 636 records screened 19 abstracts screened for eligibility 9 excluded 10 full text ar cles screened for eligibility 2 excluded 8 studies included in qualita ve synthesis Results of search strategy as per PRISMA Guidance (Moher, 2009)

13 Collacott et al (1992) Cooper & Collacott (1994) Capone et al (2011) Myers & Pueschel (1991) Myers & Pueschel (1995) Mantry et al (2008) Study Design (n.b. not scored) DCR-ICD-10 and DSM-III- R DSM-IV-R Crosssectional study Crosssectional study Crosssectional study Crosssectional study Crosssectional study Cohort n Characteristics Measure (Gold standard) 371 DS Community sample 378 DS Community sample 56 DS Patients presenting to a university-level medical clinic 497 DS 425 university clinic & 72 residential care 164 DS Regular attendees to a university-affiliated T1 186 T2 134 DS clinic DS Community sample Report on measures of variability (if applicable) Quality score /6 Frequency of depression in sample ICD-9 Chi Square 6 42/371 (11.3%) / 378 (11.1%) Confidence interval 5 11/117 (9.4%) MDE * 9/117 (7.7%) MDE * & psychotic features DSM-III-R Chi square 6 10/497 (2%) DSM-III-R - 5 9/164 (5.5%) DC-LD, ICD- 10, DCR- ICD-10, DSM-IV-TR Confidence interval 6 T1 5/166 (2.7%) T2 7/134 (5.2%) Prasher (1995) McCarthy & Boyd (2001) Crosssectional study Cohort 201 DS (age 16 or above) Community sample T1 193 T2 52 DS register community sample DCR-ICD /215 (5%) ICD-10 Pearson s correlation coefficient, 5 7/52 (13%) Quality assessment (modified version) based on Hermans, H. & Evenhuis, H.M. (2010) Characteristics of instruments screening for depression in adults with intellectual disabilities: Systematic Review. Research in Developmental Disabilities

14 Prevalence and incidence of depression in DS Patterns did emerge Despite difference in populations sampled and study designs Depression is the most common psychiatric condition Exclude dementia Myers & Pueschel (1991), Mantry et al (2008), Prasher (1995), McCarthy & Boyd (2001) Studies that investigated both mental ill health and depression suggested that: Depression is more common in DS in comparison to general ID population Mental ill health (all causes) less common in DS population in comparison to general ID population Collacott et al (1992), Mantry et al (2008)

15 Prevalence and incidence of depression in DS Depression frequency 5-13% (university / healthcare samples)» Exclude children % (community sample) Age groups Level of ID

16 Study Frequency of Source of subjects Age Level of ID depression Collacott et al (1992) 11.3% Health service & years Not differentiated community records Cooper & Collacott 11.1% Health service and years Not differentiated (1994) community records Capone et al (2011) 11/117 (9.4%) MDE * 9/117 (7.7%) MDE * with psychotic features 8/117 (6.8%) deficit syndrome University based clinic for DS years Not differentiated Myers & Pueschel (1991) 10/497 (2%) 10 / 164 subjects over 20 years had depression (6.1%) Myers & Pueschel 9/164 (1995) (5.5%) Mantry et al (2008) T1 5/166 (2.7%) T2 7/134 (5.2%) University clinic for DS, and a local state school Prasher (1995) 10/215 (5%) Hospital and community samples McCarthy & Boyd (2001) 7/52 (13%) adult sample 1/193 (0.5%) child sample -261subjects <20 years -164 subjects >20 years -72 subjects between years Not differentiated University affiliated outpatient clinic years 6 of 9 moderate ID 2 severe ID Community sample years 41.1% mild ID, 26.9% moderate ID, 18.3% severe, 13.4% profound ID years 21% mild ID, 66.7% moderate ID 13.4% severe ID. Community Child 6-17 years Adult years Not differentiated Frequencies of depression and demographic characteristics for Down syndrome

17 Presentation of depression Symptoms highlighted did not fit neatly into different categories (i.e. biological, objective) Most common: reduced interest/pleasure (91%), depressed affect (88%), psychomotor retardation (59%), loss of energy (57%), and appetite/weight disturbance (55%). Least common: constipation (13%), obsessions/compulsions (13%) and mood congruent delusions or hallucinations (5%).» Cooper & Collacott (1994), n=378

18 Presentation of depression Certain more common symptoms: Observed vegetative as opposed to verbal / symptoms of selfexpression 4 of the 9 subjects reported hallucinations» Myers & Pueschel (1995) n=9 Major Depressive Episode symptoms described included: Anhedonia and depressed mood, plus, biological symptoms such as disturbed sleep, reduced attention and psychomotor slowing. deficit syndrome possible atypical depression or psychosis Within same study a group diagnosed with MDE with psychotic features Met criteria for both MDE and schizophreniform disorder 7.7% of the study population No details of the symptoms of psychosis were available.» Capone et al (2011) n=56

19 Methodological concerns & bias 6/8 cross-sectional studies: Concerns regarding methodology (or lack of clarity) mean that conclusions not drawn with confidence Unclear from the methods whether data relates to life-todate prevalence or point/period prevalence» Myers & Pueschel (1991), Collacott (1992), Cooper & Collacott (1995) 7/8 retrospective case note analyses Observer bias Low participant numbers in some studies Impossible to stratify with any accuracy for age or level of ID

20 Conclusions Does this study alter the stereotypical phenotype? DS prone to depressive episodes Perhaps more so than general ID population (also evidence to contrary Lund, 1988) Course of depression in DS Suggestion of shorter episodes» Cooper & Collacott, 1994 One study showed 2-year incidence higher than point prevalence would support this» Mantry et al, 2008 Increased frequency of depression in adult samples in comparison to children» McCarthy & Boyd (2001), Myers & Pueschel (1991)

21 Difficult to form firm conclusions regarding nature of depressive illness from current evidence Biological symptoms Psychosis Deficit syndrome and possible links to dementia or simple schizophrenia Which diagnostic tools do we use?

22 Clinical practice Review has demonstrated need for high index of suspicion when assessing individual with DS Depression relatively high frequency event Has varied presentation Requires education of carers, allied health professionals and teachers for recognition Allow for timely diagnosis and management, therefore reduced distress for all concerned

23 Future directions Large-scale cohort studies may give more indication of the nature and course of depression in DS Clearer methodology of cross-sectional studies will give more meaningful results

24 Limitations of this review Limitations related to search criteria: Excluded challenging behaviour Excluded Alzheimer's dementia Both important in terms of the characterisation of the nature and symptoms of depression in DS Limitations of systematic review: Unable to perform further statistical analysis due to the heterogeneous aims and objectives of each of the studies. Also due to the lack of clarity regarding the frequencies quoted in some studies.

25 Any questions? Thanks for listening!

26 Main references Walker, J.C., Dosen, A., Buitalaar, J.K., & Janzing, J.G.E. (2011) Depression in Down Syndrome: A review of the literature. Research in Developmental Disabilities. 32, Dykens, E.M. (2007) Psychiatric and Behavioural Disorders in Persons with Down Syndrome. Mental Retardation and Developmental Disabilities Research Reviews. 13, Matson, J.L., Rush, K.S., Hamilton, M., Anderson, S.J., Bamburg, J.W. & Baglio, C.S. (1999) Characteristics of Depression as Assessed by the Diagnostic Assessment for the Severely Handicapped-II (Dash-II). Research in Developmental Disabilities. 20(4), Collacott, R.A., Cooper, S., McGrother, C. (1992) Differential Rates of Psychiatric Disorders in Adults with Down s Syndrome Compared with Other Mentally Handicapped Adults. British Journal of Psychiatry Cooper, S.A. & Collacott, R.A. (1994) Clinical Features and Diagnostic Criteria of Depression in Down s Syndrome. British Journal of Psychiatry. 165(3) Capone, G.T., Aidikoff, J.N., & Goyal, P. (2011) Adolescents and Young Adults with Down Syndrome Presenting to a Medical Clinic with Depression: Phenomenology and Characterization Using the Reiss Scales and Aberrant Behaviour Checklist. Journal of Mental Health Research in Intellectual Disabilities Myers, B.A. & Pueschel, S.M. (1991) Psychiatric Disorders in Persons with Down Syndrome. The Journal of Nervous and Mental Disease. 179(10) Myers, B.A. & Pueschel, S.M. (1995) Major Depression in a Small Group of Adults with Down Syndrome. Research in Developmental Disabilities. 16(4) Prasher, V.P. (1995) Prevalence of Psychiatric Disorders in Adults with Down Syndrome. European Journal of Psychiatry. 9(2) McCarthy, J. & Boyd, J. (2001) Psychopathology and young people with Down s syndrome: childhood predictors and adult outcome of disorder. Journal of Intellectual Disability Research. 45(2) Please get in touch for full list of references