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El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

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La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)

The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)

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El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)

The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)

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La metodología de Planificación Centrada en la Persona (PCP) cada vez tiene mayor impacto en España. Comenzando desde las distintas legislaciones que regulan la atención a este colectivo en las diferentes autonomías y terminando en los centros que proveen este servicio. No obstante, existe escasa literatura internacional de estudios empíricos a grandes escalas que sitúen este enfoque metodológico en una posición relevante que garantice la eficacia de la PCP. El objetivo principal de este estudio es conocer el estado del uso de la metodología de PCP a través de estudios avalados empíricamente que sostengan tanto beneficios como limitaciones durante los últimos 10 años (2012-2022). Para ello, se ha realizado una revisión sistemática desde las directrices de PRISMA (2020), que incluye un total de 31 artículos. Como conclusión, se han descubierto más beneficios que limitaciones entre las que destacan las ventajas en su uso para las personas con discapacidad intelectual y del desarrollo y las mejoras de aspectos relacionados con la autodeterminación. No obstante, las limitaciones prevalecen por la falta de apoyos y recursos adecuados de las organizaciones para responder a una planificación centrada en la persona y la necesidad de formación de las personas implicadas en la elaboración de la PCP, lo que genera la incógnita de si se están realizando buenas prácticas en el uso de dicha metodología. (AU)

The methodology of Person Centered Planning (PCP) is having an increasing impact in Spain. Starting from the different legislations that regulate the attention to this group in the different autonomous regions and ending in the centers that provide this service. However, there is little international literature on large-scale empirical studies that place this methodological approach in a relevant position to guarantee the efficacy of PCP. The main objective of this study is to know the status of the use of PCP methodology through empirically supported studies that sustain both benefits and limitations during the last 10 years (2012-2022). For this purpose, a systematic review has been conducted since the PRISMA guidelines (2020), including a total of 31 articles. As a conclusion, more benefits than limitations have been found, among which the advantages in its use for people with intellectual and developmental disabilities and improvements in aspects related to self-determination stand out. However, limitations prevail due to the lack of adequate support and resources from organizations to respond to person-centered planning and the need for training of the people involved in the development of the PCP, which raises the question of whether good practices are being carried out in the use of this methodology. (AU)

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Adults with intellectual and developmental disabilities (IDD) who also have a co-occurring mental illness are almost five times as likely to experience a delayed hospital discharge as adults with mental illness only. Such delays occur when a patient no longer requires hospital-level care but cannot be discharged, often because of a lack of appropriate postdischarge settings. Delayed discharges contribute to poor patient outcomes, increased system costs, and delayed access to care. Recently, practice guidance was developed in Canada, identifying 10 components of successful transitions for this population. Core to this guidance is a patient-centered, cross-sectoral approach, including the patient, family, hospital team, community health care providers, and IDD providers.

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BACKGROUND: Many people view people with intellectual disability primarily as needing help. That perspective limits relationships and can promote discrimination. We sought to better understand social relationships among young adults with intellectual disability. METHOD: Seven postsecondary students with intellectual disability participated in a photovoice study, sharing photos and stories about giving and receiving help. They participated in individual interviews, a group meeting, and a photo exhibition, and helped identify results and conclusions. RESULTS: Participants viewed themselves as helpers and recipients of help. Themes were: foundational importance of families; openness to being helped; personal growth through challenging experiences; and tension between wanting to help and risks of helping others. Participants wanted to raise awareness that people with disabilities can help others, educate them about disability, and contribute to research. CONCLUSIONS: Many young adults with intellectual disability want to contribute to relationships, which are often limited by others' expectations about disability.

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Intellectual disability is a disorder characterized by lower developmental abilities in mental and physical performances. Due to advancements in healthcare management for patients with intellectual disabilities, the survival rate of these individuals has increased. Consequently, middle-aged patients with intellectual disabilities may present symptoms related to degenerative cervical spondylosis. However, there appear to be few reports focusing on this topic. A 52-year-old patient with intellectual disability was accompanied by his elderly parents to our hospital. The patient could not stand independently after experiencing motor weakness in the bilateral upper and lower extremities. Radiologically, cervical kyphosis and severe cervical cord compression were identified. After obtaining informed consent from the patient's parents, cervical anterior and posterior fixation surgery was performed in two sessions to resolve cervical myelopathy. The patient was discharged from the hospital 45 days after the second operation. A year post-surgery, the patient could walk independently. With the long life expectancy of patients with intellectual disability, spinal degenerative diseases resulting in cervical myelopathy can significantly impact patients' quality of life. Adequately examining, diagnosing, and surgically managing the patient can lead to improved status for patients with intellectual disability.

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While numerous studies on verbal working memory have investigated the capacity of the phonological loop and the effectiveness of rehearsal as one core process for maintaining the memory trace, the reconstruction of the memory trace from long-term memory, called redintegration, has been studied less thoroughly. This holds particularly for the population of students with special educational learning needs and mild and borderline intellectual disabilities (MBID). In a previous study, we found a differential developmental relation between the effectiveness of redintegration and vocabulary size, counter-intuitively suggesting that students with MBID tend to show less effective redintegration with higher vocabulary size. However, differential item functioning (DIF) in the picture naming task may have biased the result. Therefore, the current study is a re-analysis of this interaction controlling for DIF in the vocabulary measure. To this end, the items of the picture naming task (k = 95) were analyzed through a Rasch model, and k = 29 biased items were excluded. The resulting corrected vocabulary score was used to predict the redintegration effectiveness, comparing students with and without MBID. The interaction remains significant, supporting the original finding that students with MBID have a differential developmental pattern and are less able to make adequate use of a growing vocabulary when reconstructing traces in their working memory. Implications of this result for the understanding of MBID and further research directions are discussed.

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Autism diagnosis in individuals with fragile X syndrome (FXS) or Down syndrome (DS) with co-occurring intellectual disability is complex since clinicians often must consider other co-occurring behavioral features. Understanding how best to assess the features of autism in individuals with these conditions is crucial. In this study, we consider the short-term and long-term psychometric consistency of the Autism Diagnostic Observation Schedule-2 (ADOS-2) calibrated comparison scores (CCSs) and ASD classifications in individuals with FXS or DS. 76 individuals with DS (39 males; Mage = 15.27) and 90 individuals with FXS (71 males; Mage = 14.52 years) completed an assessment battery (ADOS-2, abbreviated IQ assessment and semi-structured language sample) at three timepoints (initial visit, short-term stability visit, long-term stability visit). All CCSs were found to have short-and long-term consistency for both groups, with lowest reliability scores for the repetitive behaviors (RRB) CCSs. Decreased reliability of RRB CCSs was found in the DS group than the FXS group. Variable short- and long-term ASD classifications were observed in both groups, with significantly higher variability in the DS group. Across groups, participants with variable classifications had lower ADOS-2 CCSs and higher language scores than those with stable ASD classifications. In the FXS group, those with variable classifications earned higher cognitive scores than did participants with stable ASD classifications. These findings highlight the high incidence of autism symptomatology in individuals with DS or FXS and co-occurring intellectual disability, while elucidating the short- and long-term variability of symptom expression in the context of structured observational tasks such as the ADOS-2.

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BACKGROUND: Attention deficit hyperactivity disorder (ADHD) is often present in people with intellectual disability (ID) and autism. However, few ADHD measures have been developed specifically for individuals with these conditions. There is little literature exploring how well ADHD measures are performing at picking up specific symptoms at the item level. METHODS: Analyses were conducted on data from 122 children aged 7-15 years old with diagnoses of both ADHD and ID enrolled in the Hyperactivity and Special Educational Needs trial. Parents and teachers completed ratings of ADHD symptoms on the Aberrant Behavior Checklist (ABC) hyperactivity subscale and the revised Conners' Rating Scales hyperactivity scale and ADHD index. Cronbach's alpha was used to examine the reliability of these measures. Item response theory explores the performance of individual items. Multiple indicators, multiple causes models were used to test for measurement invariance by ID severity, co-occurring autism traits and child age. RESULTS: The reliability of parent and teacher reports of ADHD symptoms on the Conners' and ABC was acceptable across the range of ID. Item performance was generally good, and information was provided across the continuum of ADHD traits. Few items on either measure were non-invariant (i.e., item endorsement generally did not differ based on other child characteristics). When non-invariance was found, the effect was small. CONCLUSIONS: Both the parent-reported and teacher-reported versions of the Conners' hyperactivity scale and ADHD index and the ABC hyperactivity subscale appear to function well in the current sample of children with co-occurring ADHD and ID.

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Electroconvulsive therapy (ECT) is a highly effective treatment option for severe mental illness. Although people with intellectual disability (ID) have similar prevalence rates of mental disorders in comparison to the general population their access to ECT remains challenging. A systematic literature review was carried out on treatment with ECT in patients with ID and a case report on a patient with ID who underwent ECT is presented, to highlight a typical clinical routine. A total of 100 articles with 208 different case reports were retrieved. In summary, the results underline the effectiveness of ECT in people with ID, with side effects comparable to those in the general population. The ECT is effective in the treatment of severe affective and psychotic disorders and particularly in people with catatonia. The use of ECT can improve the patient's mental health and quality of life and is often a life-saving treatment option. The prophylaxis of relapses should be included as early as possible in the planning process. Providing an easy access to ECT treatment for people with ID is corroborated by its effectiveness and is in line with the right to equal treatment in accordance with article 25 of the United Nations Convention on the Rights of Persons with Disabilities.

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While mental disorders have been broadly researched in people with intellectual disabilities (ID), comparatively less attention has been given to the conceptualisation of good mental health for this population. To capture existing concepts, definitions and measurement approaches of good mental health a systematic literature review was conducted following PRISMA guidelines. The search was carried out in eleven databases, using various synonyms of (i) intellectual disability, (ii) mental health, (iii) wellbeing, (iv) definition, and (v) assessment. A total of 2,046 datasets were identified, of which 37 met the inclusion criteria and were analysed using reflexive thematic analysis and content analysis. Results show four main themes: (1) environment, (2) absence of mental illness, (3) physical health, and (4) psychosocial functioning. The fourth was the most dominant theme and was further divided into five sub-themes: (1) emotionality, (2) interpersonal relations, (3) realise own potential, (4) personal resources, and (5) overall appraisal of life. Our findings reveal different conceptualisations of wellbeing, which is a vital part of good mental health, but highlight a notable research gap in the actual definition and conceptualisation of good mental health for people with ID.

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INTRODUCTION: Individuals who have a dual diagnosis of both a psychiatric disorder and an intellectual disability (ID) are more likely to exhibit challenging behaviour than the general population. Clinicians globally have been encouraged to use positive approaches such as Positive Behaviour Support (PBS) when managing challenging behaviour. AIM: To explore nurses' views, opinions and perceptions on the use of positive behaviour support, as an adjunctive therapy, in the management of challenging behaviour in adults with a dual diagnosis of a mental health disorder and an intellectual disability within a mental health setting. METHOD: A descriptive qualitative study was undertaken to identify registered nurses' experiences of using PBS in managing challenging behaviour. Data were collected from ten participants via semi-structured interviews and analysed using thematic analysis. RESULTS: Two themes were constructed; 1) Being involved from the beginning and 2) Impact on adults with a dual diagnosis. DISCUSSION: Nurses' involvement from the onset was fundamental in maximising the potential of PBS. Benefits of PBS were identified. Having a meaningful relationship with clients and a good knowledge of their behaviours was integral to the success of PBS. IMPLICATIONS FOR PRACTICE: Participants emphasised the importance of continuous education around PBS. Nurses should be included in the formulation of PBS plans. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: RELEVANCE STATEMENT.

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Fetal alcohol spectrum disorder (FASD) and its associated physical and mental conditions is the most prevalent congenital impairment causing developmental and intellectual disability worldwide. Like alcohol abuse, FASD is typically undiagnosed by primary care providers. And like alcohol abuse, life underwriters and medical directors need to be aware of the signs, symptoms, and behaviors associated with FASD to accurately detect, identify, evaluate and assess the mortality risk. Three cases of suspected undiagnosed FASD that were underwritten for life expectancies in legal matters are discussed in this report. Not only were these patients' risks for excess mortality elevated due to their initial neurologic injury due to prenatal exposure to alcohol, but these cases demonstrate the importance of the stability and care needed to make them insurable. The following paper discusses the clinical and social settings at birth that may give underwriters and medical directors some clue to a potential case of the child having FASD and then to assess their statistical and lifestyle mortality risks.

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OBJECTIVES: To determine the efficacy and safety of antipsychotic medication for treating individuals with a dual diagnosis of intellectual disability (ID) and schizophrenia. METHODS: We systematically reviewed the literature to explore the risks and benefits of antipsychotics for schizophrenia in ID. In addition, a cross-sectional retrospective study on the tolerance profiles of a representative ID and schizophrenia cohort was conducted. RESULTS: From the systematic search, we retained 18 articles detailing information on 24 cases. In almost all cases, the antipsychotic improved psychotic symptoms (e.g., hallucinations, delusions, disorganization). Negative manifestations were also improved (blunted affects, amotivation, poor rapport), as were challenging behaviors in a few cases. The most commonly reported side effects were neurological (extra-pyramidal, movement disorder, epilepsy) and metabolic manifestations. In the retrospective cross-sectional study, we reported data on 112 participants with comorbid ID and schizophrenia. In all, 103 participants were antipsychotic-treated, of which 39% were on antipsychotic monotherapy. Of these, 35% were in the obesity range, 25% in the hyperglycemic range, and 25% in the dyslipidemia range. The body mass index did not differ between the groups. CONCLUSIONS: This study provides an initial evidence base underpinning the efficacy of antipsychotic drugs on schizophrenia in the ID population. Nevertheless, there may be an increased risk of metabolic side effects, hence, close monitoring of blood glucose, lipids, and weight should be implemented when prescribing antipsychotics to this population.

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Objective: The incidence of neuroleptic malignant syndrome (NMS), a rare, potentially fatal adverse effect of antipsychotics, among children and youth is unknown. This cohort study estimated NMS incidence in antipsychotic users age 5-24 years and described its variation according to patient and antipsychotic characteristics. Methods: We used national Medicaid data (2004-2013) to identify patients beginning antipsychotic treatment and calculated the incidence of NMS during antipsychotic current use. Adjusted hazard ratios (HRs) assessed the independent contribution of patient and antipsychotic characteristics to NMS risk. Results: The 1,032,084 patients had 131 NMS cases during 1,472,558 person-years of antipsychotic current use, or 8.9 per 100,000 person-years. The following five factors independently predicted increased incidence: age 18-24 years (HR [95% CI] = 2.45 [1.65-3.63]), schizophrenia spectrum and other psychotic disorders (HR = 5.86 [3.16-10.88]), neurodevelopmental disorders (HR = 7.11 [4.02-12.56]), antipsychotic dose >200mg chlorpromazine-equivalents (HR = 1.71 [1.15-2.54]), and first-generation antipsychotics (HR = 4.32 [2.74-6.82]). NMS incidence per 100,000 person-years increased from 1.8 (1.1-3.0) for those with none of these factors to 198.1 (132.8-295.6) for those with 4 or 5 factors. Findings were essentially unchanged in sensitivity analyses that restricted the study data to second-generation antipsychotics, children age 5-17 years, and the 5 most recent calendar years. Conclusion: In children and youth treated with antipsychotics, five factors independently identified patients with increased NMS incidence: age 18-24 years, schizophrenia spectrum and other psychotic disorders, neurodevelopmental disorders, first-generation drugs, and antipsychotic doses greater than 200 mg chlorpromazine-equivalents. Patients with 4 or 5 of these factors had more than 100 times the incidence of those with none. These findings could improve early identification of children and youth with elevated NMS risk, potentially leading to earlier detection and improved outcomes.

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Background: The Scale of Emotional Development-Short (SED-S) assesses the level of emotional development (ED) of persons with intellectual disability (ID) in eight domains across five stages with reference ages from 0 to 12 years. The aim of this study was to apply and validate the SED-S in a sample of healthy adults with ID. Method: Eighty-three mentally healthy adults with ID were assessed using the SED-S. Factor analysis, Cronbach's alpha, and correlational analyses were used to test the scale's internal structure and associations. Results: The results showed that the eight-domain structure of the SED-S is supported by strong inter-domain correlations, a high Cronbach's alpha, and a one-factor confirmatory factor analysis. The SED-S was associated with the severity of ID but not with age or gender. Conclusions: The SED-S can be used in non-clinical settings to better understand and meet the emotional needs of adults with ID.

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Background/Objectives: Rubinstein-Taybi Syndrome (RSTS-OMIM, #180849) is a rare genetic disorder associated with distinctive clinical features, including a typical craniofacial appearance, global developmental delay, intellectual disability and broad, angular thumbs and fingers. The main aim of the study was to evaluate the health problems of children with RTST, their quality of life and the impact of the disease on family functioning. In addition, we investigate whether comorbidities, autistic behavior and eating problems affect the children's overall QOL. Methods: A cross-sectional study was performed, including a total of 13 caregivers of children diagnosed with RSTS. A self-reported questionnaire [SRQ], medical records and the Pediatric Impact Module PedsQLTM 2.0, the Pediatric Quality of Life PedsQLTM 4.0 were used to obtain data on QOL and the impact of the disease on family functioning. Results: The overall QOL score for children with RSTS was x = 52.40; SD 13.01. The highest QOL was in emotional functioning (EF; x = 59.23; SD 18.69), while the lowest QOL was in physical functioning (PF; x = 48.56; SD 16.32) and social functioning (SF; x = 48.85; SD 18.84). There was a statistically significant negative correlation (p < 0.03; r = -2.01) between the age of the child and their QOL, indicating that older children had lower QOL scores. The mean overall rating for the impact of RSTS on family functioning was x = 50.00; SD 10.91. Caregivers reported the highest scores for cognitive functioning (CF; x = 64.23; SD 23.70) and family relationships (FR; x = 60.00; SD 17.17). The lowest scores were for daily activities (DA; x = 41.03; SD 17.17) and worry (W; x = 37.69; SD 18.55). Conclusions: This study provides the first comprehensive exploration of the QOL of children with RSTS) and its impact on family functioning.

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Objective: Intellectual disability (ID) is a prevalent comorbidity in children with cerebral palsy (CP), presenting significant challenges to individuals, families and society. This study aims to develop a predictive model to assess the risk of ID in children with CP. Methods: We analyzed data from 885 children diagnosed with CP, among whom 377 had ID. Using least absolute shrinkage and selection operator regression, along with univariate and multivariate logistic regression, we identified key predictors for ID. Model performance was evaluated through receiver operating characteristic curves, calibration plots, and decision curve analysis (DCA). Bootstrapping validation was also employed. Results: The predictive nomogram included variables such as preterm birth, CP subtypes, Gross Motor Function Classification System level, MRI classification category, epilepsy status and hearing loss. The model demonstrated strong discrimination with an area under the receiver operating characteristic curve (AUC) of 0.781 (95% CI: 0.7504-0.8116) and a bootstrapped AUC of 0.7624 (95% CI: 0.7216-0.8032). Calibration plots and the Hosmer-Lemeshow test indicated a good fit (χ2= 7.9061, p = 0.4427). DCA confirmed the model's clinical utility. The cases were randomly divided into test group and validation group at a 7:3 ratio, demonstrating strong discrimination, good fit and clinical utility; similar results were found when stratified by sex. Conclusions: This predictive model effectively identifies children with CP at a high risk for ID, facilitating early intervention strategies. Stratified risk categories provide precise guidance for clinical management, aiming to optimize outcomes for children with CP by leveraging neuroplasticity during early childhood.