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Measuring Health, Function, and Social Well-being in Adults on the Autism Spectrum

Award Number: R01MH121407
ORGANIZATION: NATIONAL INSTITUTE OF MENTAL HEALTH
OPDIV: NIH
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)
PERIOD OF PERFORMANCE START DATE: 02/07/2020
PERIOD OF PERFORMANCE END DATE: 11/30/2025

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Measuring Health, Function, and Social Well-being in Adults on the Autism Spectrum - Abstract Individuals on the autism spectrum experience a “services cliff” when they transition to adulthood, and have poor health and social outcomes over the life course. In response, the National Institute of Mental Health has highly prioritized services research to improve life outcomes for autistic adults. The lack of validated patient- reported outcome measures (PROMs) for use with autistic adults is a significant barrier to conducting high- quality services research with this population. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) has been conducting community based participatory research (CBPR) in partnership with autistic adults, family members, and services professionals for over twelve years. We have used a collaborative process to adapt survey instruments to be accessible to autistic adults with diverse characteristics. More work is needed to create a full package of high-priority PROMs and to rigorously assess their psychometric properties. Our long-term goal is to improve life outcomes for autistic adults. The objective of this proposal is to use a CBPR approach to create and test a package of PROMs for evaluating the effectiveness of services interventions for autistic adults across multiple real-world settings. We will achieve our objective by meeting the following specific aims: 1) to collaboratively create the Autism Patient Reported Outcomes Measures (AutPROM) Toolbox; 2) to psychometrically test the AutPROM Toolbox measures at baseline and assess expected distributions; and 3) to assess the instruments’ sensitivity in detecting change and explore factors that may be associated with change in outcomes over time. We will use a modified Delphi process to identify constructs and measures to include in the AutPROM Toolbox. We will then work with our diverse Community Council to collaboratively adapt instruments, as needed. Where appropriate, we will create two versions of each measure – one for use by autistic adults and one for use by proxies. We will conduct cognitive interviews to establish content validity and comprehensibility of the adapted instruments. We will then test the full AutPROM Toolbox in a real-world cohort of 750 autistic adults, with sub-cohorts recruited from 1) healthcare systems; 2) disability services systems; and 3) community organizations. We will conduct surveys with participants at baseline and 6 and 12 months, and will use longitudinal growth curve modeling to test change over time and identify participant characteristics that are associated with changes in outcomes. We will use qualitative methods to understand how changes in scores on AutPROM Toolbox instruments correspond to participants’ narratives of how their life may have changed during the study period. The proposed project will create a critically-needed set of PROMs that can be used to evaluate services interventions for autistic adults across multiple real-world settings. The project will also identify factors that predict changes in life outcomes over time. Such information is key to understanding and improving existing services, refining and targeting new interventions, and informing policy.


Issue Date FY	Funding FY	Legal Entity Name	Legal Entity Address	Legal Entity City	Legal Entity State	Legal Entity Zip Code	Legal Entity COUNTY	Legal Entity COUNTRY	Assistance Listing	Award Code	Budget Year	Action Date	Action Type	Action Amount

Issue Date FY: 2024 ( Subtotal = $586,210 )
2024	2024	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	001	5	8/15/2024	NON-COMPETING CONTINUATION	$58,620
2024	2024	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	000	5	2/16/2024	NON-COMPETING CONTINUATION	$527,590
														Subtotal = $586,210

Issue Date FY: 2023 ( Subtotal = $620,144 )
2023	2023	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	001	4	1/4/2023	NON-COMPETING CONTINUATION	$558,130
2023	2023	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	002	4	1/26/2023	NON-COMPETING CONTINUATION	$62,014
2023	2021	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	000	2	12/14/2022	SUPPLEMENT FOR EXPANSION	$0
														Subtotal = $620,144

Issue Date FY: 2022 ( Subtotal = $619,580 )
2022	2022	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	001	3	3/17/2022	NON-COMPETING CONTINUATION	$0
2022	2022	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	002	3	5/23/2022	NON-COMPETING CONTINUATION	$61,957
2022	2022	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	000	3	11/26/2021	NON-COMPETING CONTINUATION	$557,623
														Subtotal = $619,580

Issue Date FY: 2021 ( Subtotal = $726,341 )
2021	2021	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	002	2	8/23/2021	SUPPLEMENT FOR EXPANSION	$99,997
2021	2021	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	001	2	4/20/2021	NON-COMPETING CONTINUATION	$62,634
2021	2021	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	000	2	11/17/2020	NON-COMPETING CONTINUATION	$563,710
														Subtotal = $726,341

Issue Date FY: 2020 ( Subtotal = $719,371 )
2020	2020	PORTLAND STATE UNIVERSITY	1600 SW 4TH AVE	PORTLAND	OR	97201	MULTNOMAH	USA	Mental Health Research Grants	000	1	2/7/2020	NEW	$719,371
														Subtotal = $719,371

Grand Total All Awards = $3,271,646

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Measuring Health, Function, and Social Well-being in Adults on the Autism Spectrum

Award Number: R01MH121407

ORGANIZATION: NATIONAL INSTITUTE OF MENTAL HEALTH

OPDIV: NIH

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: SCIENTIFIC/HEALTH RESEARCH (INCLUDES SURVEYS)

PERIOD OF PERFORMANCE START DATE: 02/07/2020

PERIOD OF PERFORMANCE END DATE: 11/30/2025

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