Quality of life in pharmacological intervention on autism spectrum disorders

Abstract

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.

Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs

“…Although quality of life is an important aspect of treatment outcome, measurements of quality of life are rarely included in pharmacological intervention studies in adults with ID (Bertelli et al, 2013;Hemmings, Deb, Chaplin, Hardy, & Mukherjee, 2013;Zarcone, Napolitano, & Valdovinos, 2008). Studies on the effect of psychotropic drugs report adverse events as secondary outcomes (Aman et al, 2002;Gagiano, Read, Thorpe, Eerdekens, & Van Hove, 2005;Snyder et al, 2002;Tyrer et al, 2008).…”

Development, psychometric evaluation, and factor analysis of an instrument measuring quality of life in autistic preschoolers

“…Furthermore, there could be common neurobiological processes that affect emotional dysregulation and sleep disorders (Gadow et al., 2015 ) that may provide us with a deeper understanding of the associations between our participants' QoL scores and sleep issues. Finally, regarding the association between receiving treatment and the QoL of our participants, data from the literature do not allow for a valid study of the relationship between pharmacological interventions and the QoL of autistic individuals (Bertelli et al., 2013 ).…”

“…Finally, regarding the association between receiving treatment and the QoL of our participants, data from the literature do not allow for a valid study of the relationship between pharmacological interventions and the QoL of autistic individuals (Bertelli et al, 2013). Chuang et al (2014) highlighted the importance of parenting variables on the QoL of autistic preschool children.…”

Parent Perspectives on Psychotropic Medication Use and Interactions With Prescribing Health Care Providers Among Adolescents and Adults With an Autism Spectrum Disorder

“…To improve the patient’s medication experience, studies are needed to complement this work by soliciting the perspective of individuals with ASD, as well as health care providers involved in this type of care. There is also a need to better understand the impact of psychotropic medication on the quality of life of individuals with ASD, an area which to date, remains understudied (Bertelli et al, 2013; Moyal, Lord, & Walkup, 2014). This, and other exploratory studies of its kind, would help pave the way to larger quantitative studies with the ability to tap issues more systematically and with a broader sample.…”