About this trial
Until recently, autism in older adults went unrecognised. Although there has been more attention to autism in older adults in recent years, there is still a lot of unfamiliarity with the phenomenon and underdiagnosis in (mental) health care. Many care providers are reluctant to diagnose autism in later life, due to a lack of knowledge about autism in older adults and because there is still very little scientific knowledge available for this target group. Although several multidisciplinary guidelines for autism in adults prescribe that after the diagnosis psycho-education is the first step in treatment, psycho-education is still only offered in a few places in the Netherlands. Psycho-education is important to help older people gain knowledge about their autism, to help them understand and accept this diagnosis, in order to subsequently make the treatment of the problems, with which they turn to the mental health care, more appropriate and effective.
The aim of this study is to contribute to better recognition and diagnosis of autism among older adults. This research also aims to improve a psycho-education program for older adults and investigate its effects.
The scientific research question is whether training in ASD for health care professionals results in better recognition and detection of ASD in older adults, and whether participation in the psycho-education course for older adults, who have been diagnosed with autism, or have received a probability diagnosis ASD, contributes to improvement of mental health and quality of life.
Eligibility criteria
This trial accepts healthy volunteersQualifiers
minimum of 55 years old.
diagnosed with ASD or a probability diagnosis by a multidisciplinary team according to the Dutch multidisciplinary guideline, as confirmed by the DSM-5 interview for ASD (Spek, n.d.), or the Netherlands Interview for Diagnosis of ASD in adults (NIDA; Vuijk, 2023)
Disqualifiers
comorbid mental disorder that needs acute treatment and severely interferes with a group treatment (for example psychosis),
a major neurocognitive disorder (for example dementia or acquired brain injury),
substance abuse disorder, that requires detoxification, and/or
an IQ below 70.
Trial design
Crossover
Treatments tested in this trial
Training in detection and diagnosis of ASD
Other interventionTo improve detection and diagnosis of ASD the participating mental health institutes will be trained by the research group on how to detect and diagnose autism in older adults. The basis of the ASD training involves two separate training sessions. Part one focuses on recognition and detection of ASD, specifically in older adults, and will be offered to the entire teams of the participating centres. The second part of the training focuses on the diagnosis of ASD and as such is offered primarily to diagnosticians. Follow up will consist of monthly recurring options for online consultation during the entire project to discuss clinical cases by experts in ASD in older adults from PersonaCura, clinical centre of excellence for personality and developmental disorders in older adults (dr. A. Videler and R. Wilting).
PE program
Other interventionAn adapted PE program for older adults with a (probability) diagnosis of ASD. The PE program consists of eight, two-hour group meetings on a weekly basis.
Treatment groups
Trial outcomes
Primary outcomes
Quality of life (MHQoL-7)
Quality of life as measured with the Mental Health Quality of Life-7 (MHQoL-7) a standardized quality of life questionnaire specifically aimed at people with mental health problems. The MHQoL-7D index score can vary from 0 to 21, with higher scores indicating better quality of life.
Acceptance of the diagnosis
Acceptance of the diagnosis is based on the combined scores from patients and their chosen proxy on item 31 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis (VKHAA and VKHAA-N for proxies). The score on this item is binary with either yes or no scores. Scores thus range from 0 to 1, with a score of 1 reflecting acceptance as opposed to a score of 0 (no acceptance). This data further is aggregated with measurements of patients' acceptance of the diagnosis as evaluated with the Acceptance Questionnaire (AQ), a questionnaire with scores ranging from 0 to 33 and higher scores reflecting higher diagnosis acceptance. Total acceptance scores thus have a range from 0 - 35 and higher scores indicating more acceptance.
Acceptance of the diagnosis from proxy perspective
Acceptance of the diagnosis as reflected by proxies is based on item 31 from the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis for Proxies (VKHAA-N). The score on this item is binary with either yes or no scores. Scores thus range from 0 to 1, with a score of 1 reflecting acceptance as opposed to a score of 0 (no acceptance).
Knowledge of ASD
Knowledge of ASD is based on measurements on items 1-18 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis (VKHAA). Scores range from 0 to 54 with higher scores indicating more knowledge of ASD.
Secondary outcomes
Number of ASD diagnoses
The number of ASD diagnoses collected from the information and registration systems of the participating mental health care centres.
Proportion of ASD diagnoses
The proportion of ASD diagnoses collected from the information and registration systems of the participating mental health care centres.
Other outcomes
Descriptives
For descriptives, demographic information, concerning gender, age, zip code and education level will be gathered.
Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Tilburg University
Lead sponsor
GGZ Breburg
Collaborator