Study Results
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Basic Information
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RECRUITING
NA
305 participants
INTERVENTIONAL
2024-09-12
2026-12-31
Brief Summary
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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.
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Detailed Description
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The aim of this study on the one hand is to gain insight into: 1) the effects of providing training and education to mental health care providers in detection and diagnosis of ASD in older adults, with the expectation that this contributes to an increase in the number and proportion of ASD diagnoses in older adults in the Netherlands; 2) the effects of a PE program for older adults with ASD in terms of knowledge and recognition of ASD and traits, a better acceptance of the diagnosis, improved coping with ASD, improved resilience and comorbid general psychological distress - and ultimately higher quality of life; and 3) the experiences of older adults with ASD following the PE program.
Study design: The effects of training and education in detection and diagnosis of ASD in older adults, and the effects of the PE program will be evaluated in a Stepped Wedge Trial Design (SWTD), with the intervention sequentially rolled-out in eleven (specialised) mental healthcare organisations. Furthermore, a pre-post design will be used to compare the situation before the roll-out period with the situation after the roll-out period in terms of diagnosis and individual outcomes such as knowledge regarding ASD. Qualitative measures will be used to assess the experiences of older adults with ASD who participated in the PE program.
Study population: Older adults - aged 55 and over diagnosed with ASD or a probability diagnosis by a multidisciplinary team according to the Dutch multidisciplinary guidelines, as confirmed by the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) interview for ASD, or the Netherlands Interview for Diagnosis of ASD in adults (NIDA) as well as a proxy (an individual who provides reports on behalf of, or about, a study participant).
The intervention consists of education in detection and diagnosis of ASD in older adults for mental health professionals and of an 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.
Primary study parameter concerns clinical outcomes measuring effects of the psycho-education course in terms of quality of life, acceptance of the diagnosis, knowledge of ASD, recognition of ASD traits, coping with ASD, quantitative autistic traits, resilience, and comorbid psychological distress. Quality of life is assessed by the MHQoL-7 (Mental Health Quality of Life Questionnaire). Acceptance of the diagnosis, knowledge and coping with ASD are assessed with use of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis (VKHAA). Acceptance of ASD (-diagnosis) is further assessed through the Acceptance Questionnaire (AQ). Autistic traits are assessed through the Social Responsiveness Scale-Adults (SRS-A). Comorbid psychological distress is assessed by the Brief Symptom Inventory (BSI). All these assessments are performed (1) at baseline (following diagnosis and informed consent); (2) before the patient starts with PE (on average three months after baseline; participants in the control group will receive this three months after baseline; (3) after the PE (on average two months after the start of the PE program; participants in the control group will receive this measurement 6 months after baseline); (4) at 9-months follow-up (nine months after second measurement). A proxy, chosen by the study participant, will additionally inform on acceptance, knowledge, recognition, coping and ASD traits through measurements on the VKHAA for informants (VKHAA-N) and SRS-A for informants (SRS-A-N) at two moments that overlap with measurements 2 and 3 of study participants.
Secondary study parameters is the number and proportion of ASD diagnoses in the participating centres (collected from the information and registration systems of the mental health care centres) from one year before, during the project, and at one year follow-up.
For patients, benefits will be considerable as they will receive a PE program that is recommended by the Dutch multidisciplinary guideline for ASD in adults, and although being the recommended first intervention by treatment guidelines, is not provided to them momentarily. The benefits account for patients who provide informed consent to participate in the research and patients who do not give their consent, since the same treatment will be available for both. The investigators consider the burden of participating in the research, which consists of filling out questionnaires and inviting a proxy of their choice to fill out two of the same questionnaires, to be limited. Firstly, because this will be done in the context of treatment that fits the recommended first intervention by treatment guidelines and thus does not provide an extra mental burden. Moreover, the time needed to fill out these questionnaires is limited: approximately 40 to 60 minutes per measurement point, and there are no indications that risks are involved with regard to the topics of these questionnaires; specifically in a similar study by the study's research group, no adverse events or risks were observed.
Additional potential benefits exist in the form of increased detection and diagnosis of ASD in older adults across participating organisations, while the burden of participating in the study hardly exceeds time and effort spent in diagnostic efforts as usual, yet lightens efforts spent on informing patients with an ASD diagnosis as this can be done in a group format rather than on an individual basis. The only extra effort is limited to informing patients about the study with verbal and written information.
Conditions
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Study Design
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RANDOMIZED
CROSSOVER
A second intervention, training and education in detection and diagnosis of ASD in older adults, is rolled out in de same SWTD. The effects of this intervention will also be assessed further in pre-post design.
TREATMENT
NONE
Study Groups
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ASD trained
Periods in the SWTD after receiving training in detection and diagnosis of ASD.
Training in detection and diagnosis of ASD
To 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).
ASD training - control
Periods in the SWTD before receiving training in detection and diagnosis of ASD.
Training in detection and diagnosis of ASD
To 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
Periods in the SWTD after receiving the PE program.
PE program
An 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.
PE program - control
Periods in the SWTD before receiving the PE program.
PE program
An 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.
Interventions
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Training in detection and diagnosis of ASD
To 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
An 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.
Eligibility Criteria
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Inclusion Criteria
* 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)
Exclusion Criteria
* a major neurocognitive disorder (for example dementia or acquired brain injury),
* substance abuse disorder, that requires detoxification, and/or
* an IQ below 70.
55 Years
ALL
Yes
Sponsors
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GGZ Breburg
OTHER
Tilburg University
OTHER
Responsible Party
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Principal Investigators
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Arjan Videler, Dr.
Role: PRINCIPAL_INVESTIGATOR
Tilburg University, GGz Breburg
Locations
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GGNet Ouderen (Elderly)
Apeldoorn, Gelderland, Netherlands
Mondriaan Ouderen (Elderly)
Heerlen, Limburg, Netherlands
Vincent van Gogh Ouderen (Elderly)
Venray, Limburg, Netherlands
Reinier van Arkel
's-Hertogenbosch, North Brabant, Netherlands
GGzE Nestor
Eindhoven, North Brabant, Netherlands
SeneVita GGZ
Eindhoven, North Brabant, Netherlands
GGz WNB Ouderen (Elderly)
Halsteren, North Brabant, Netherlands
GGz Breburg PersonaCura
Tilburg, North Brabant, Netherlands
GGz NHN Frailty
Hoorn, North Holland, Netherlands
GGz Mediant
Enschede, Overijssel, Netherlands
Dimence
Deventer, , Netherlands
Countries
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Central Contacts
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Facility Contacts
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G. (Gea) de Kaste, Ba.
Role: primary
S. (Bas) PJ van Alphen, Prof. Dr.
Role: primary
M. (Michelle) Schaal, MSc.
Role: primary
J. (Juul) Heijmink, MSc.
Role: primary
E. (Ellen) Nobel, Dr.
Role: primary
F. (Frédérique) Geven, Drs.
Role: primary
I. (Ingeborg) Wirken, Drs.
Role: primary
A. (Arjan) C. Videler, Dr.
Role: primary
M. (Marjolijn) Hoekert, Dr.
Role: primary
B. (Bahar) Kara, MSc.
Role: primary
References
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Campbell-Sills L, Stein MB. Psychometric analysis and refinement of the Connor-davidson Resilience Scale (CD-RISC): Validation of a 10-item measure of resilience. J Trauma Stress. 2007 Dec;20(6):1019-28. doi: 10.1002/jts.20271.
de Beurs, E. (2011). Brief Symptom Inventory-BSI. Handleiding herziene editie 2011. Leiden: PITS BV.
Cage E, Di Monaco J, Newell V. Experiences of Autism Acceptance and Mental Health in Autistic Adults. J Autism Dev Disord. 2018 Feb;48(2):473-484. doi: 10.1007/s10803-017-3342-7.
van Krugten FCW, Busschbach JJV, Versteegh MM, Hakkaart-van Roijen L, Brouwer WBF. The Mental Health Quality of Life Questionnaire (MHQoL): development and first psychometric evaluation of a new measure to assess quality of life in people with mental health problems. Qual Life Res. 2022 Feb;31(2):633-643. doi: 10.1007/s11136-021-02935-w. Epub 2021 Jul 9.
Verbeek, I.C., Wedjelek, J., Elfeddali, I., & Videler, A.C. (2023). Acceptance Questionnaire Dutch translation. In development.
Verbeek, I.C., Lenders, M.A.C.., van Alphen, S.P.J., Elfeddali, I., & Videler, A.C., (2023a). Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis. In development.
Verbeek, I.C., Lenders, M.A.C, van Alphen, S.P.J., Elfeddali, I., & Videler, A.C., (2023b). Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis for Proxies. In development.
Constantino, J.N., & Gruber, C.P. (2016). SRS-A Screeningslijst voor autismespectrumstoornissen: Handleiding. Hogrefe. [Dutch Handbook for the Social Responsiveness Scale for Adults]
Other Identifiers
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NL84067.028.23
Identifier Type: -
Identifier Source: org_study_id
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