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BACKGROUND: Valid and reliable instruments for measuring emotional development are critical for a proper diagnostic assignment in individuals with intellectual disabilities. This exploratory study examined the psychometric properties of the items on the Scale of Emotional Development-Short (SED-S). METHOD: The sample included 612 adults with intellectual disabilities (Mage = 37.35, SDage = 13.27; 59.8% males). Item validity analysis comprising sensitivity and specificity rates and discriminatory power were determined. RESULTS: The relative mean frequency of 'yes' answers to all 200 items was 29.5%. The mean sensitivity rate was 67.5% and the mean specificity rate was 79.3%. Most items (85.0%) showed good discriminatory power with the adjacent stage(s), especially between SED-1, SED-2, SED-3 and SED-4. Particularly in SED-4 some items showed weaknesses in the differentiation between these stages. DISCUSSION: This study adds to previous validation studies by showing that most SED-S items have psychometrically sound properties.
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Discapacidad Intelectual , Psicometría , Humanos , Discapacidad Intelectual/psicología , Adulto , Femenino , Masculino , Psicometría/normas , Psicometría/instrumentación , Persona de Mediana Edad , Reproducibilidad de los Resultados , Adulto Joven , Sensibilidad y Especificidad , EmocionesRESUMEN
BACKGROUND: An observer-rated screening questionnaire for dementia for people with intellectual disabilities (ID), DSQIID, was developed in the UK. So far, the German version has not yet been validated in adults with ID. AIMS/METHODS: We validated a German version of DSQIID (DSQIID-G) among adults with ID attending a German clinic. PROCEDURES/OUTCOMES: DSQIID-G was completed by the caregivers of 104 adults with ID at baseline (T1), 94 at six months (T2) and 83 at 12 months (T3). A Receiver Operating Curve (ROC) was used to determine the total DSQIID-G cutoff score for the best fit between sensitivity and specificity. RESULTS: Sixteen of the 104 participants at T1 (15%) received a diagnosis of dementia. At T1, the scores among the non-dementia group ranged from 0 to 33 (mean: 6.7; SD: 7.65), and the dementia group ranged from 3 to 43 (mean: 22.12; SD: 11.6). The intergroup difference was statistically significant (W: 158; p < .001) (AUC:.89). A total score of 9 provided the best fit between sensitivity (.94) and specificity (.72). CONCLUSIONS AND IMPLICATIONS: DSQIID-G total score can discriminate between dementia and non-dementia cases in adults with ID. A lower cutoff score with a higher sensitivity is desirable for a screening instrument.
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Enfermedad de Alzheimer , Demencia , Discapacidad Intelectual , Encuestas y Cuestionarios , Demencia/diagnóstico , Enfermedad de Alzheimer/diagnóstico , Tamizaje Masivo , Reproducibilidad de los Resultados , Discapacidad Intelectual/complicaciones , Alemania , Encuestas y Cuestionarios/normas , Lenguaje , Humanos , Masculino , Femenino , Adulto , Persona de Mediana Edad , Anciano , Anciano de 80 o más AñosRESUMEN
People with intellectual disability (ID) generally tend to have difficulties expressing their thoughts and feelings verbally. Art-based therapies rely less on cognitive ability and verbal skills and aim to promote mental health. Drama therapy provides a playful framework to communicate problematic issues and to foster social skills. Improvisational theatre (improv) methods applied in therapy settings were reported to show positive effects on social competences and self-esteem. This pilot study investigates the feasibility (N = 24) and appropriateness (n = 12) of an intervention using improv methods in people with mild to moderate ID. Feasibility was measured on the basis of the average participation period, while appropriateness was assessed through a standardised patient satisfaction questionnaire (CSQ-8) and a self-developed questionnaire. The frequency of the applied methods was compared in two subgroups with participants requiring different support. The average participation rate of 19 months indicated a good feasibility. High CSQ-8 scores (M = 27.6/max. 32) and positive feedback on the self-developed questionnaire indicated the overall appropriateness. The frequency analysis of the applied methods reflected the adaptive nature of the intervention. Further research on the efficacy of improv methods contributing to mental health in people with ID is recommended.
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Intellectual disability has a prevalence rate of approximately 1% of the population; in Germany, this is around 0.5-1 million people. The life expectancy of this group of people is reduced, with cancer being one of the most common causes of death (approx. 20%). Overall, the risk of cancer and mortality is increased compared to the general population.Certain genetic syndromes predispose to cancer in this vulnerable group, but associated comorbidities or lifestyle could also be risk factors for cancer. People with cognitive impairments are less likely to attend preventive check-ups, and challenges arise in medical care due to physical, communicative, and interactional characteristics. Optimized cooperation between clinical centers for people with disabilities and the respective cancer centers is required in order to tailor the processes to the individual.In Germany, there is a lack of data on the prevalence of cancer entities and the use and need for healthcare services. There is an urgent need to focus attention on cancer prevention, treatment, and research in the vulnerable and heterogeneous group of people with intellectual disabilities suffering from cancer in order to effectively counteract the increase in cancer-related deaths in this population group.The article summarizes specialist knowledge on cancer in people with an intellectual disability, identifies special features of treatment, presents care structures, and derives specific requirements for clinics and research.
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Discapacidad Intelectual , Neoplasias , Humanos , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/epidemiología , Discapacidad Intelectual/genética , Prevalencia , Alemania/epidemiología , Atención a la Salud , Esperanza de Vida , Neoplasias/epidemiología , Neoplasias/genética , Neoplasias/terapiaRESUMEN
AUTISM: spectrum disorders (ASD) often remain undiagnosed until adulthood. The aim of this study is to report differential diagnoses (DDX) and comorbidities of adults without intellectual impairment suspected of having an ASD and to test the self-assessment questionnaire Autism Quotient (AQ) for its suitability for screening. METHODS: DDX and comorbidities were recorded with standardized scales in an autism outpatient clinic in 106 individuals. The AQ was tested against the expert judgment of an interdisciplinary case conference using ROC analysis. RESULTS: Affective disorders were common in both groups (48%); other DDX were phobias (33%) and personality disorders (22%). The AQ showed an AUC of 0,527 with sensitivity/specificity of 70%/35%. CONCLUSIONS: Adults suspected of having autism are highly burdened by DDX and comorbidities. An interdisciplinary diagnostic procedure based on standardized scales is useful, whereas the AQ hardly differentiates between persons with and without ASD.
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Trastorno del Espectro Autista , Trastorno Autístico , Adulto , Humanos , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Trastorno Autístico/diagnóstico , Diagnóstico Diferencial , Diclorodifenil Dicloroetileno , AlemaniaRESUMEN
People with a disorder of intellectual development (German draft of the ICD-11, which came into force on 1 January 2022) suffer more frequently from mental illnesses. According to the international treatment guidelines multimodal approaches should include not only psychopharmacological treatment, but also disorder-specific psychotherapeutic methods. These psychotherapeutic interventions have to be adapted to the communicative and cognitive abilities (performance diagnostics with IQ tests) as well as the emotional developmental stage (developmental diagnostics, e.g., with the scale of emotional development, short version, SED-S 2; [1]). To ensure this, the rules of simple language should be observed and when appropriate relatives or caregivers should be involved in the therapeutic process. The effectiveness of cognitive behavioral therapy has received most scientific attention, especially for affective disorders. Posttraumatic stress disorders can be validly treated with eye movement desensitization and reprocessing (EMDR). There is also good evidence for exposure therapy with reinforcement in the treatment of anxiety disorders.
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Terapia Cognitivo-Conductual , Desensibilización y Reprocesamiento del Movimiento Ocular , Trastornos por Estrés Postraumático , Humanos , Psicoterapia/métodos , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/terapia , Trastornos por Estrés Postraumático/psicología , Terapia Cognitivo-Conductual/métodos , Trastornos de Ansiedad , Desensibilización y Reprocesamiento del Movimiento Ocular/métodos , Resultado del TratamientoRESUMEN
With the introduction of the ICD-11 and DSM-5, indicators of adaptive behavior, including social-emotional skills, are in focus for a more comprehensive understanding of neurodevelopmental disorders. Emotional skills can be assessed with the Scale of Emotional Development-Short (SED-S). To date, little is known about the effects of physical disorders and sensory impairments on a person's developmental trajectory. The SED-S was applied in 724 adults with intellectual disabilities, of whom 246 persons had an additional physical and/or sensory impairment. Ordinal regression analyses revealed an association of movement disorders with more severe intellectual disability and lower levels of emotional development (ED) on the overall and domain levels (Others, Body, Material, and Communication). Visual impairments predicted lower levels of ED in the SED-S domains Material and Body, but not the overall level of ED. Hearing impairments were not associated with intellectual disability or ED. Epilepsy correlated only with the severity of intellectual disability. Multiple impairments predicted more severe intellectual disabilities and lower levels of overall ED. In conclusion, physical and sensory impairments may not only affect physical development but may also compromise intellectual and emotional development, which should be addressed in early interventions.
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Epilepsia , Discapacidad Intelectual , Trastornos del Movimiento , Humanos , Adulto , Discapacidad Intelectual/epidemiología , Discapacidad Intelectual/psicología , Emociones , Examen FísicoRESUMEN
Intellectual disability is a neurodevelopmental disorder with a related co-occurrence of mental health issues and challenging behaviors. In addition to purely cognitive functions, socio-emotional competencies may also be affected. In this paper, the lens of developmental social neuroscience is used to better understand the origins of mental disorders and challenging behaviors in people with an intellectual disability. The current concept of intelligence is broadened by socio-emotional brain functions. The emergence of these socio-emotional brain functions is linked to the formation of the respective neuronal networks located within the different parts of the limbic system. Thus, high order networks build on circuits that process more basic information. The socio-emotional skills can be assessed and complement the results of a standardized IQ-test. Disturbances of the brain cytoarchitecture and function that occur at a certain developmental period may increase the susceptibility to certain mental disorders. Insights into the current mental and socio-emotional functioning of a person may support clinicians in the calibration of treatment and support. Acknowledging the trajectories of the socio-emotional brain development may result in a more comprehensive understanding of behaviors and mental health in people with developmental delays and thus underpin supports for promotion of good mental health in this highly vulnerable population.
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Discapacidad Intelectual , Trastornos del Neurodesarrollo , Humanos , Discapacidad Intelectual/epidemiología , Discapacidad Intelectual/psicología , Emociones , Salud Mental , EncéfaloRESUMEN
BACKGROUND: People living with intellectual and developmental disabilities (IDD) have suffered disproportionately in health outcomes and general well-being during the COVID-19 pandemic. There is emerging evidence of increased psychological distress. Increased strain has also fallen on clinicians managing the psychological needs of people with IDD, in the context of learning new technologies, staff shortages, reduced services and paused training opportunities. AIMS: To examine clinicians' experiences of patient care, clinical management and the impact of care delivery. METHOD: A mixed fixed-response and free-text survey comprising 28 questions covering four areas (responder demographics, clinical practice, changes to local services and clinician experiences) was developed, using the STROBE guidance. It was disseminated through an exponential snowballing technique to clinicians in seven high-income countries. Quantitative data were analysed and presented with Microsoft Excel. Qualitative data were coded and thematically analysed, and presented with in-text quotations. RESULTS: There were 139 respondents, mostly senior physicians (71%). Two-thirds reported over 10 years working in the field. Quantitative findings include increased clinician stress (77%), referrals (53%), patient distress presentations (>70%), patient isolation (73%) and carer burden (89%), and reduced patient participation in daily activities (86%). A third reported increased psychotropic prescribing. Qualitative analysis outlined changes to clinical practice, particularly the emergence and impact of telehealth. CONCLUSIONS: In the countries surveyed, the pandemic has not only had a significant impact on people with IDD, but also their carers and clinicians. A proactive, holistic international response is needed in preparedness for future public health emergencies.
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AIM OF THE STUDY: Fetal alcohol spectrum disorders (FASD) are quite common and, due to the risk of psychiatric comorbidities, highly relevant until adulthood. Diagnostic clarification in adulthood is a prerequisite for targeted treatment and needs-based support. METHODS: In a German metropolitan region, 80 people with suspicion of FASD were assessed from May 2015 to July 2020. The results of this interdisciplinary diagnostic assessment were systematically evaluated and the clinical characteristics of the persons with or without FASD were analysed. RESULTS: Approximately 70% of the population accessing relevant health care was diagnosed with an entity from the FAS spectrum. People with FASD were more likely to have learning disabilities (50 vs. 33%) or intellectual disabilities (40 vs. 10%), while there were no group differences for age and gender. Psychiatric comorbidities, particularly depression (39%) and addiction disorders (31%), were common in both groups. CONCLUSION: As part of a multi-professional standardized diagnosis, FASD clarification is also possible and necessary in adulthood. The diagnostic criteria for FASD should be further evaluated and specified for adults.
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Trastornos del Espectro Alcohólico Fetal , Adulto , Consumo de Bebidas Alcohólicas/epidemiología , Instituciones de Atención Ambulatoria , Atención a la Salud , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/epidemiología , Humanos , EmbarazoRESUMEN
Background and objectives. In most countries worldwide, general adult psychiatrists look after the mental health of adults with intellectual disabilities (ID) without appropriate specialist training in the field. It is, therefore, necessary to develop a practice guideline to help these clinicians to assess and diagnose psychiatric disorders in adults with ID. Methods. We have developed an evidence and consensus-based practice guideline for the assessment and diagnosis of major functional psychiatric disorders in adults with ID. Several senior psychiatrists from different European countries formed a guideline development group who assessed the evidence gathered from a systematic literature search to produce the guideline. Results. Adults with ID develop the same psychiatric disorders as their non-ID counterparts. The overall rate of major functional psychiatric disorders such as schizophrenia, depressive disorder, bipolar disorder, and anxiety disorders seems to be somewhere between 14.4-22.4%. However, if a wider definition of psychopathology and mental ill-health is considered including depressive and anxiety symptoms, behaviours of concern, and other neurodevelopmental disorders such as autism spectrum disorder the rate becomes much higher than that in the general population. The risk factors for psychiatric disorders seem similar in both the ID and the non-ID populations. However certain risk factors such as genetic burden, certain comorbidities, psychosocial adversities, and reduced coping capacity are more prevalent among adults with ID. Conclusion. This guideline describes how the main symptoms of major psychiatric disorders may manifest differently in adults with ID and provides recommendations as to how to address these issues in day-to-day clinical practice.
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Humanos , Adulto , Ciencias de la Salud , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/psicología , Trastornos Mentales/clasificación , Trastornos Mentales/diagnóstico , Trastornos Mentales/psicología , Trastornos Mentales/terapia , Adulto/psicología , Evaluación de Síntomas/psicologíaRESUMEN
Autism spectrum disorders (ASD) are often associated with intellectual disability (ID). ASD-specific group concepts usually focus on people on a high functioning level. The Autism-Competence-Group (AutCom) combines a psycho-educative approach with music and dance/movement interventions in adults with ASD and ID. AutCom includes 16 structured 90-minute sessions to foster social and emotional competencies. This study investigates the acceptability and effectiveness of AutCom. Practicability and acceptability were measured based on participation frequency and patient satisfaction (CSQ-8). Efficacy was assessed in a pre-post design (N = 12) based on self- and third-party assessment with a control group matched by gender and level of ID. Primary outcome variables were social and emotional competence, and secondary outcomes were challenging behavior and quality of life. A participation rate of 86% indicated practicability; high CSQ-8 scores (M = 30 of max. 32) indicated acceptability. Significant improvement was found in social competence compared to the control group and emotional competence in the pre-post self-assessment on the AutCom questionnaire. No significant improvement was found in challenging behavior and quality of life. AutCom is shown to be a promising and highly accepted group concept in fostering social and emotional skills in adults with ASD and ID.
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BACKGROUND: Assessment of age-associated disorders has become increasingly important. METHODS: In a clinical setting, people with intellectual disability with and without dementia were assessed retrospectively using the Neuropsychological Test Battery (NTB) and the Dementia Questionnaire for People with Learning Disabilities (DLD) at two different times to analyse neuropsychological changes and diagnostic validity. One group (n = 44) was assessed with both instruments, while the DLD was applied in 71 patients. RESULTS: In the NTB (n = 44), only patients with dementia (n = 26) showed a decline in the NTB total score and three subscales. Receiver operating characteristic analysis revealed a diagnostic sensitivity of .67, a specificity of .81, and an area under the curve (AUC) of .767. In the DLD group (n = 71), only those with dementia displayed a decrease in the cognitive and social scale; diagnostic sensitivity and specificity values were low (.61/.63) and the AUC was .704. CONCLUSIONS: Neuropsychological assessment was sensitive to detect cognitive changes over time. Sensitivity values of both instruments suggest a reassessment at a later time point.
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Demencia , Discapacidad Intelectual , Personas con Discapacidades Mentales , Demencia/diagnóstico , Humanos , Discapacidad Intelectual/diagnóstico , Pruebas Neuropsicológicas , Estudios RetrospectivosRESUMEN
OBJECTIVES: The study assesses the diagnostic validity of the Scale of Pervasive Developmental Disorder in Mentally Retarded Persons (PDD-MRS). METHODS: Unblinded conduct of PDD-MRS in a clinical psychiatric sample of adults with intellectual disability (ID; Nâ=â109) and suspect of autism. RESULTS: For a cut-off-score of 10, sensitivity was 89â%, specificity 62â% and the Area Under the Curve (AUC) 0.83.âThe total score was independent of age, gender and level of ID. However the diagnostic validity was better balanced in adults with mild to moderate ID (sensitivity/specificity: 85â%/73â%) compared to those with severe to profound ID (93â%/42â%). The SEAS-M total score was correlated with various ASD screening measures (râ=â.3-.6), while no correlation was found for scales assessing challenging behavior. CONCLUSION: To conclude, the PDD-MRS is a screening instrument for diagnosing autism in adults with mild to moderate ID. Knowledge of the PDD-MRS results within the consensus conference may have led to an overestimation of its diagnostic validity.
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Trastorno del Espectro Autista , Trastornos Generalizados del Desarrollo Infantil , Discapacidad Intelectual , Adulto , Trastorno del Espectro Autista/diagnóstico , Niño , Alemania , Humanos , Discapacidad Intelectual/diagnóstico , Reproducibilidad de los ResultadosRESUMEN
Fetal alcohol spectrum disorders (FASD) are a common cause of a congenital developmental disability acquired in the womb due to alcohol consumption by the mother during pregnancy. The physical and mental consequences persist into adulthood. The 4digit code is an evidence-based method for diagnosing the full spectrum of outcomes, i.e. the full picture of fetal alcohol syndrome (FAS), partial fetal alcohol syndrome (pFAS), alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD). The four key diagnostic features are (1) growth disorder, (2) facial dysmorphia, (3) central nervous system (CNS) structural and functional abnormalities and (4) prenatal alcohol exposure. Even if the disorder cannot be cured, supportive therapeutic interventions can improve the quality of life and independence and psychiatric comorbidities can be treated.
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Trastornos del Espectro Alcohólico Fetal , Efectos Tardíos de la Exposición Prenatal , Adulto , Consumo de Bebidas Alcohólicas , Femenino , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/epidemiología , Trastornos del Espectro Alcohólico Fetal/terapia , Humanos , Madres , Embarazo , Efectos Tardíos de la Exposición Prenatal/diagnóstico , Calidad de VidaRESUMEN
People with intellectual disability (ID) have a high vulnerability to develop mental health problems. The prevalence of mental disorders is higher than in the general population and, in addition, adults with ID often show behavioral problems that imply a need for psychiatric psychotherapeutic care. In view of the impairments of intellectual functioning, impaired adaptive behavioral skills and physical illnesses, the needs of this target group are usually complex and require particular expertise. A number of specific assessment instruments are available for target group-specific diagnostics to collate the cognitive performance and emotional development as well as for psychopathological symptoms and behavioral disorders. To improve the accuracy of diagnosis in the ID population, existing alternatives to DSM or ICD should be applied especially to adults with moderate or severe ID. Guidelines for psychopharmacotherapy and adapted user guides for psychotherapeutic treatment provide support in the context of target group-specific treatment.
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Discapacidad Intelectual , Trastornos Mentales , Adulto , Humanos , Discapacidad Intelectual/complicaciones , Trastornos Mentales/complicaciones , Trastornos Mentales/diagnóstico , Trastornos Mentales/terapia , Salud Mental/estadística & datos numéricos , Prevalencia , Problema de Conducta/psicología , PsicotrópicosRESUMEN
OBJECTIVE: The Scale of Emotional Development-Short (SED-S) is an instrument to assess the level of emotional development (ED) in people with intellectual and developmental disability. Index cases are developed as a didactic tool to standardize the application of the scale. METHOD: In a stepwise process, a European working group from six countries developed five index cases, one for each level of ED. All cases were first scored by 20 raters using the SED-S and then rephrased to reduce inter-rater variations (SD > 0.5). RESULTS: All five index cases yielded overall ratings that matched the intended level of ED. Across the range of ED, Regulating Affect needed rephrasing most to ensure a distinct description within each level of ED. CONCLUSIONS: The tri-lingual, cross-cultural evolution of five index cases contributes to a standardized application of the SED-S and can serve as training material to improve the inter-rater reliability of the SED-S across different cultures and languages.
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Afecto , Discapacidades del Desarrollo/diagnóstico , Regulación Emocional , Desarrollo Humano , Discapacidad Intelectual/diagnóstico , Pruebas Neuropsicológicas/normas , Psicometría/normas , Adulto , Afecto/fisiología , Comparación Transcultural , Discapacidades del Desarrollo/fisiopatología , Regulación Emocional/fisiología , Europa (Continente) , Desarrollo Humano/fisiología , Humanos , Discapacidad Intelectual/fisiopatología , Psicometría/instrumentaciónRESUMEN
Initial studies have presented the Music-based Scale for Autism Diagnostics (MUSAD) as a promising DSM-5-based observational tool to identify autism spectrum disorder (ASD) in adults with intellectual disability (ID). The current study is the first to address its clinical utility in a new sample of 124 adults with ID (60.5% diagnosed with ASD). The derived diagnostic algorithm differentiated well between individuals with and without ASD (sensitivity 79%, specificity 74%, area under the curve = 0.81). Inter-rater reliability, assessed by the scorings of four independent experts in 22 consensus cases, was excellent (ICC = 0.92). Substantial correlations with scores from other ASD-specific measures indicated convergent validity. The MUSAD yields accurate and reliable scores, supporting comprehensive ASD diagnostics in adults with ID.
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Algoritmos , Trastorno del Espectro Autista/diagnóstico , Discapacidad Intelectual/diagnóstico , Música/psicología , Pruebas Psicológicas/estadística & datos numéricos , Adulto , Área Bajo la Curva , Manual Diagnóstico y Estadístico de los Trastornos Mentales , Femenino , Humanos , Masculino , Reproducibilidad de los Resultados , Sensibilidad y EspecificidadRESUMEN
BACKGROUND: In persons with intellectual and developmental disabilities, not only cognitive brain functions, but also socio-emotional processing networks may be impaired. This study aims to validate the Scale of Emotional Development-Short (SED-S) to provide an instrument for the assessment of socio-emotional brain functions. METHOD: The SED-S was applied in 160 children aged 0-12 years. Criterion validity was investigated at item and scale level in terms of the agreement between the scale classification and the child's chronological age. Additionally, interrater reliability and internal consistency were assessed. RESULTS: For the majority of items, the expected response pattern emerged, showing the highest response probabilities in the respective target age groups. Agreement between the classification of the different SED-S domains and chronological age was high (κw = 0.95; exact agreement = 80.6%). Interrater reliability at domain level ranged from κw = .98 to 1.00 and internal consistency was high (α = .99). CONCLUSION: The study normed the SED-S in a sample of typically developing children and provides evidence for criterion validity on item, domain and scale level.