Psychiatric diagnostic dilemmas among people with intellectual and developmental disabilities.
Community psychiatric labels for people with ID/ASD are wrong more often than right—always seek a second opinion from an expert team.
01Research in Context
What this study did
Rieth et al. (2022) looked at psychiatric labels given to adults with intellectual or developmental disabilities. They brought each person to an expert team of doctors, psychologists, and behavior analysts. The team did full exams and compared their results to the labels already in the community chart.
What they found
Most community psychiatric diagnoses did not hold up. Agreement between the outside label and the expert team was poor for almost every condition. The only time the two sides agreed was when the experts ruled out dementia.
How this fits with other research
Sturmey et al. (2010) already showed that challenging behaviors are not signs of depression in adults with severe ID. Rieth et al. (2022) widen the lens and find the same problem across all psychiatric labels.
Matson et al. (2009) and Cudré-Mauroux (2010) review years of charts and conclude that psychotropic meds are given without clear psychiatric cause. The new case series gives real-life examples of those bad labels leading to those scripts.
Meins (1995) first mapped how depression can look different in ID. Twenty-seven years later, R et al. show that clinicians still miss the mark when they try to use standard criteria without adjusting for ID.
Why it matters
Before you refer a client for a new psychiatric drug, pause. Ask for the functional assessment first. If the outside doctor never saw the baseline data, send your graphs and request a joint meeting. Push for a specialty team review when the person has both ID and a sudden mental-health label. Your behavior data may keep an incorrect diagnosis—and an unnecessary drug—off the chart.
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02At a glance
03Original abstract
BACKGROUND: Research regarding the accuracy of co-morbid psychiatric diagnoses in individuals with intellectual and developmental disabilities (IDD) is sparse. Yet correct diagnostic assignment is vital so that effective and appropriate treatment can be implemented, especially for the large numbers of individuals requiring expensive and restrictive behavioural health crisis services. METHOD: A retrospective review of de-identified data from multidisciplinary specialty team assessments completed for 50 individuals with ID (IntellectualDisability) with and without ASD and unresolved behavioural health challenges was conducted. The accuracy and reliability of the psychiatric diagnoses upon referral were compared with the diagnoses after the comprehensive team evaluation, and within-individual diagnostic agreement was calculated. The agreement between the Mood and Anxiety Semi-Structured interview tool (MASS) and the full team evaluation was also calculated. The influence of demographic and clinical characteristics on diagnostic agreement was explored. RESULTS: The most common chief complaints upon referral were aggression to others and self-injurious behaviour. Individuals were taking a median of six medications (interquartile range: 5 to 7); 80% were taking an antipsychotic medication. The most common medical conditions were constipation (70%) and gastroesophageal reflux disease (52%). Measures of interrater reliability of the referral diagnoses with the team assessment were below 0.5 (kappa range: -0.04 to 0.39), with the exception of ruling out dementia (kappa = 0.85). The interrater reliability estimates for the MASS evaluations for depression and anxiety were higher (kappa = 0.69 and 0.64) and reflected higher sensitivity and PPV. The odds of any referral diagnosis being confirmed by team evaluation were low: 0.25 (range: 0 to 0.67). The level of diagnostic agreement for each patient was not significantly attributable to demographic or clinical characteristics, although effect sizes indicate a possible positive relationship to age and the number of prescribed psychotropic medications at referral. CONCLUSION: Individuals in the current study had serious psychiatric and behavioural problems despite psychiatric care in their communities. The majority of psychiatric diagnoses provided upon referral were not supported by the multidisciplinary specialty team's assessment. In addition to possible diagnostic inaccuracy, the group in the study suffered from multiple medical co-morbidities and were exposed to polypharmacy. Results emphasise the importance of multidisciplinary evaluation by clinicians with expertise in neurodevelopmental disabilities when people with ID with and without ASD have complex behavioural health needs that are unresponsive to usual care. In addition, based on agreement with the full team evaluation, the MASS shows promise as an assessment tool, especially with regards to identifying anxiety and depression.
Journal of intellectual disability research : JIDR, 2022 · doi:10.1111/jir.12972