Purpose – During the last few years the prevalence of autism and Autism Spectrum Disorder (ASD) has increased greatly. A recurring issue is the overlap and boundaries between Intellectual Developmental Disorder (IDD), ASD and Schizophrenia Spectrum Disorders (SSD). In clinical practice with people with IDD, the alternative or adjunctive diagnosis of ASD or SSD is particularly challenging. The purpose of this paper is to define the boundaries and overlapping clinical characteristics of IDD, ASD and SSD; highlight the most relevant differences in clinical presentation; and provide a clinical framework within which to recognize the impact of IDD and ASD in the diagnosis of SSD. Design/methodology/approach – A systematic mapping of the international literature was conducted on the basis of the following questions: first, what are considered to be core and overlapping aspects of IDD, ASD and SSD; second, what are the main issues in clinical practice; and third, can key diagnostic flags be identified to assist in differentiating between the three diagnostic categories? Findings – Crucial clinical aspects for the differentiation resulted to be age of onset, interest towards others, main positive symptoms, and anatomical anomalies of the central nervous system. More robust diagnostic criteria and semeiological references are desirable. Originality/value – The present literature mapping provides a comprehensive description of the most relevant differences in the clinical presentation of ASD and SSD in persons with IDD.
Purpose -In psychiatry the concept of quality of life (QoL) has gradually acquired importance and interest, becoming a valuable outcome for many clinical trials. In pharmacological research on Autism Spectrum Disorders (ASD), most used outcome measures rely on the effect on behavioural symptoms and functioning impairment, while QoL has rarely been considered. The purpose of this paper is to provide a systematic mapping of the literature on QoL as a new outcome measure in psychopharmacological research for adults with ASD.Design/methodology/approach -The authors reviewed the international literature on the basis of the following questions: did pharmacological interventions on ASD include QoL as an outcome measure? If yes, how and to what extent? What consideration was given to generic (whole-person) QoL?Findings -The literature mapping shows an extreme lack of studies including QoL as an outcome measure. The few contributions present in the literature show significant conceptual and methodological limits. The literature does not allow any comparison of effectiveness between classes of drugs or single compounds with respect to QoL.Originality/value -The present mapping is the first contribution of literature reviewing on the application of QoL to pharmacological treatments of any kind for ASD. Although the international scientific community shows increasing interest on QoL and other person-centred measures in psychopharmacological practice, in respect to ASD considerable research efforts are needed to make these measures applicable and their usefulness actually proved.
ITALY AUSTRALIAABSTRACT -Background and Objectives: This paper analyses the different aspects related to the conceptualization and assessment of Intellectual Developmental Disorders / Intellectual Disability (IDD/ID) following the Person-centered Integrative Diagnostic (PID) model of the International Network for Person-centered Medicine, with a main emphasis on the health status and health self-perception.Methods: Conceptual paper, including expert opinions based on literature review.Results: The conceptualization of IDD/ID should shift the traditional over-reliance on the intelligence (IQ) score in favour of the daily life expression of specific cognitive functions and the determination of the levels of severity of intellectual functioning, that is currently based on the person's IQ score, should be reached through a system that is predicated on the person's satisfaction attainment towards life. The assessment of cognition should be aimed at identifying those dysfunctions that have the highest impact on individual behaviour, skills, adaptation, autonomy, and quality of life across the life span, highlighting personal cognitive strengths and weaknesses that can be worthwhile for the planning of effective interventions.Conclusions: Authors conclude that the application of the PID model to IDD/ID represents a prototypical example of how this approach can be useful for understanding complex constructs in health care. An overview of the main factors related to the implementation of the person-centered care model by health systems and services is also provided.
The concept of Quality of Life (QoL) has gradually acquired importance and interest. In its application and development it was able to represent an important and valuable conclusion for many a clinical trials. However, until now little research has been conducted toward evaluating QoL results in Intellectual Developmental Disorders (IDD). Pharmacotherapy in IDD is mainly directed towards managing behavioral symptoms and psychiatric disorders, with limited relevance to QoL. Objective: The purpose of this paper is to provide a critical review of the literature on the QoL as a new outcome measure on pharmacological research in IDD. Materials and methods: A review of the literature from the last 15 years was carried out and an article search was conducted using search engines available on Medline, EBSCO, Web of Science, Medmatrix, NHS Evidence and Cochrane Library. The main keywords that were used in the searches included the following: intellectual developmental disorders, autism, autism spectrum disorders, pervasive developmental disorders, mental retardation, intellectual disability, learning disability, developmental disorder, developmental disability, quality of life, psychopharmacology and psychopharmacotherapy. Afterwards the authors went through all of the articles to produce organisational criteria and comments. Conclusion: A QoL measure on IDD certainly has clinical utility. Given that individuals with IDD are a highly vulnerable population and that the medications used to treat them could have serious side effects and important repercussions on daily practice, it seems imperative that their use be directed by empirically supported research that considers new person-centered outcome measures such as QoL.
In the field of intellectual disability (ID) generic quality of life (G‐QoL) has been reported to be much more useful than health‐related QoL. Despite this, Italian‐language tools with validated assessment of G‐QoL in people with ID are lacking. The authors undertook a study to test the psychometric properties of the BASIQ, an Italian adaptation of the Quality of Life Instrument Package developed at the Centre for Health Promotion, University of Toronto, Canada, in the early 1990s. This instrument package integrates qualitative and quantitative measures and subjective and objective approaches in assessing nine domains of QoL using a direct interview (DI), a proxy questionnaire (PQ), and an external assessor questionnaire (EAQ). Using BASIQ, the study assessed the QoL of a sample of 281 adults with ID (47 DI by 11 raters, 260 PQ by 23 proxies, and 69 EAQ by 5 physicians) drawn randomly from a three services populations in central Italy. The adults, 69% men and 31% women, ranged in age from 16 to 86 (X = 41.57); most (67.6%) functioned in the mild and moderate ranges of ID. QoL assessments were carried out in Italian, and were completed by specially trained disability professionals. The instrument had good internal consistency (Cronbach's alpha 0.990) and satisfactory inter‐rater reliability (Cohen's K > 0.7). For each of the DI and the PQ, all nine domains correlated positively (p < .05), and this was also the case for most domains of the EAQ. Post hoc analyses found no differences in QoL on any of the three scales for gender or co‐occurrence of mental or physical problems, but revealed some differences for level of disability. Overall, the authors present evidence for considering the BASIQ to be a valid instrument to assess QoL and put it forward as a useful tool to use in practice and policy development.
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