Psychoeducation for Older Adults With Autism

NCT06127472 | Recruiting

• 1 other identifier: NL84067.028.23
• Study Type: interventional
• Target: 305
• Locations: 1 country
• Sites: 11

Brief Summary

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.

Conditions

Autism Spectrum Disorder

Keywords

autism; older adults

Outcome Measures

Primary Outcomes (13)

• 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.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• 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.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• 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).

  8 weeks with two measurements over this period.

• 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.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• Knowledge of ASD from proxy perspective

  Knowledge of ASD as reflected by proxy perspective is based on measurements on items 1-18 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis for Proxies (VKHAA-). Scores range from 0 to 54 with higher scores indicating more knowledge of ASD.

  8 weeks with two measurements over this period.

• Recognition of ASD traits

  Recognition of ASD is based on measurements on items 20-25 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis (VKHAA). Minimum to maximum values are 0 through 24, with higher scores reflecting more recognition of ASD.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• Recognition of ASD traits from proxy perspective

  Recognition of ASD as reflected by the proxy perspective is based on measurements on items 20-25 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis for Proxies (VKHAA-N). Minimum to maximum values are 0 through 24, with higher scores reflecting more recognition of ASD.

  8 weeks with two measurements over this period.

• Coping with ASD

  Coping with ASD is based on measurements on items 19 and 28-30 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis (VKHAA). Scores range from 0 to 15, with higher scores indicating better coping with ASD.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• Coping with ASD from proxy perspective

  Coping with ASD from the proxy perspective is based on measurements on items 19 and 28-30 of the Questionnaire Knowledge, Recognition and Acceptance of Autism Diagnosis for Proxies (VKHAA-N). Scores range from 0 to 15, with higher scores indicating better coping with ASD.

  8 weeks with two measurements over this period.

• Quantitative autistic traits

  Autistic traits are evaluated with use of the Social Responsiveness Scale-Adults (SRS-A). The questionnaire consists of 4 subscales: Social Awareness (SA), Social Communication (SC), Social Motivation (SM) and Repetitiveness and Rigidity (RR). Scores on the SRS-A range from 64 to 256 with higher scores reflecting more autistic traits.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• Quantitative autistic traits from proxy perspective

  Autistic traits from the proxy perspective are evaluated with use of the Social Responsiveness Scale-Adults for proxies, the SRS-A-N. The questionnaire consists of 4 subscales: Social Awareness (SA), Social Communication (SC), Social Motivation (SM) and Repetitiveness and Rigidity (RR). Scores on the SRS-A-N range from 64 to 256 with higher scores reflecting more autistic traits.

  8 weeks with two measurements over this period.

• Resilience

  Resilience will be assessed with a 10-item questionnaire, the Connor-Davidson Resilience Scale (CD-RISC-10). Scores range from 0 - 40 with higher scores indicating greater resilience.

  minimum of 9 to maximum of 15 months with four measurements over this period.

• Comorbid psychological distress

  Comorbid psychological distress will be assessed through the Brief Symptom Inventory (BSI). BSI is a 53-item questionnaire with 9 subscales for somatic complaints, cognitive problems, interpersonal sensitivity, depressive mood, anxiety, hostility, phobia, paranoia and psychoticism. Scores range from 0 - 212 with higher scores indicating higher presence of psychological complaints.

  minimum of 9 to maximum of 15 months with four measurements over this period.

Secondary Outcomes (2)

• Number of ASD diagnoses

  Collection of data concerns numbers per month, starting from one year before, during the expected 18 months of the roll out of the ASD training intervention, and at one year follow-up following roll out of this training in the last cluster of the SWTD.

• Proportion of ASD diagnoses

  Collection of data concerns numbers per month, starting from one year before, during the expected 18 months of the roll out of the ASD training intervention, and at one year follow-up following roll out of this training in the last cluster of the SWTD.

Other Outcomes (1)

• Descriptives

  At informed consent (zip code) and the baseline measurement (gender, age, education level), which averages the first two weeks of participants' inclusion in the study.

Study Arms (4)

ASD trained

OTHER

Periods in the SWTD after receiving training in detection and diagnosis of ASD.

Other: Training in detection and diagnosis of ASD

ASD training - control

OTHER

Periods in the SWTD before receiving training in detection and diagnosis of ASD.

Other: Training in detection and diagnosis of ASD

PE program

OTHER

Periods in the SWTD after receiving the PE program.

Other: PE program

PE program - control

OTHER

Periods in the SWTD before receiving the PE program.

Other: PE program

Interventions

Training in detection and diagnosis of ASD OTHER

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 trained; ASD training - control

PE program OTHER

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; PE program - control

Eligibility Criteria

• Age: 55 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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)

You may not qualify if:

• 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.

Sponsors & Collaborators

• Tilburg University: lead
• GGZ Breburg: collaborator

Study Sites (11)

GGNet Ouderen (Elderly)

Apeldoorn, Gelderland, 7334 DZ, Netherlands

RECRUITING

Mondriaan Ouderen (Elderly)

Heerlen, Limburg, 6419PJ, Netherlands

RECRUITING

Vincent van Gogh Ouderen (Elderly)

Venray, Limburg, 5804 AV, Netherlands

RECRUITING

Reinier van Arkel

's-Hertogenbosch, North Brabant, 5223 GZ, Netherlands

RECRUITING

GGzE Nestor

Eindhoven, North Brabant, 5623 KW, Netherlands

RECRUITING

SeneVita GGZ

Eindhoven, North Brabant, 5632 CW, Netherlands

RECRUITING

GGz WNB Ouderen (Elderly)

Halsteren, North Brabant, 4661AA, Netherlands

RECRUITING

GGz Breburg PersonaCura

Tilburg, North Brabant, 5025JE, Netherlands

RECRUITING

GGz NHN Frailty

Hoorn, North Holland, 1624 NP, Netherlands

RECRUITING

GGz Mediant

Enschede, Overijssel, 7546 TA, Netherlands

RECRUITING

Dimence

Deventer, Netherlands

RECRUITING

Related Publications (8)

• 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.

  PMID: 18157881 BACKGROUND

• de Beurs, E. (2011). Brief Symptom Inventory-BSI. Handleiding herziene editie 2011. Leiden: PITS BV.

  BACKGROUND

• 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.

  PMID: 29071566 BACKGROUND

• 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.

  PMID: 34241821 BACKGROUND

• Verbeek, I.C., Wedjelek, J., Elfeddali, I., & Videler, A.C. (2023). Acceptance Questionnaire Dutch translation. In development.

  BACKGROUND

• 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.

  BACKGROUND

• 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.

  BACKGROUND

• Constantino, J.N., & Gruber, C.P. (2016). SRS-A Screeningslijst voor autismespectrumstoornissen: Handleiding. Hogrefe. [Dutch Handbook for the Social Responsiveness Scale for Adults]

  BACKGROUND

MeSH Terms

Conditions

Autism Spectrum Disorder; Autistic Disorder

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Study Officials

• Arjan Videler, Dr.

  Tilburg University, GGz Breburg

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Arjan Videler, Dr.

CONTACT

+3188-0162336; a.c.videler@tilburguniversity.edu

Ileen Verbeek, Msc., LLM.

CONTACT

+316 17501397; i.c.verbeek@tilburguniversity.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: TREATMENT
• Intervention Model: CROSSOVER
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: The effects of the adapted 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. 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.

Study Record Dates

• First Submitted: October 26, 2023
• First Posted: November 13, 2023
• Study Start: September 12, 2024
• Primary Completion (Estimated): December 31, 2026
• Study Completion (Estimated): December 31, 2026
• Last Updated: August 6, 2025

Record last verified: 2024-12

Data Sharing

• IPD Sharing: Will not share

Locations

NL (11)