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Adolescents with Lupus: The Impact of Patient/Provider Discordance, Depression, Cognition and Language on Quality of Life

Award Number: 90IFST0003
ORGANIZATION: NATIONAL INSTITUTE ON DISABILITY, INDEPENDENT LIVING, AND REHABILITATION RESEARCH
OPDIV: ACL
AWARD CLASS: DISCRETIONARY
AWARD ACTIVITY TYPE: OTHER

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Lupus is an autoimmune disease that impacts all areas of patients’ lives, often resulting in significant disabilities and poor quality of life. When Lupus is diagnosed in childhood, in non-white racial/ethnic groups, and/or in patients from lower SES backgrounds, the potential for disability and mortality is even greater. This proposal addresses the knowledge gap in the research and care of adolescents with lupus, focusing on the health and function domain of NIDILRR. The Goal of this study is to evaluate discordance in the relationship between adolescent patient/provider global assessment of disease activity using a longitudinal mixed method design (i.e., surveys and semi-structured interviews). The Objectives are to: 1) examine the level of discordance between patient and provider’s perceptions of disease activity; 2) explore factors related to the level of discordance between patient and provider including depression, primary language, cognitive functioning, health related quality of life, pain, regimen compliance, and lab values; 3) identify the types of disabilities that adolescents with Lupus exhibit; 4) understand patients’ and providers’ perceptions of types of disability in adolescents with Lupus. Anticipated Outcomes include: 1) improved care and quality of life of patients living with Lupus and reduced health disparities/disabilities among this high-risk population; 2) understanding adolescent Lupus patient/provider discordance in assessment of disease and organ system involvement, depression, primary language spoken, pain, disability, and perceptions concerning quality of life; and 3) understanding of how the patient and provider perspective relates to level of illness, patient functioning, compliance and follow up, and implementation of disability services. The expected Products are methods a provider can use to identify depression, cognitive dysfunction, language barriers, disability, and poor physical/social functioning in ado lescents with Lupus, as well as other chronic diseases.


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: 2023 ( Subtotal = $0 )
2023	2019	MERCY COLLEGE	555 BROADWAY	DOBBS FERRY	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	05	3	9/29/2023	EXTENSION WITH OR WITHOUT FUNDS	$0
2023	2019	MERCY COLLEGE	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	04	3	12/7/2022	OTHER REVISION	$0
2023	2018	MERCY COLLEGE	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	04	3	12/7/2022	OTHER REVISION	$0
2023	2018	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	01	1	12/16/2022	ADMINISTRATIVE SUPPLEMENT ( + OR - ) (DISCRETIONARY OR BLOCK AWARDS)	$0
2023	2018	MERCY COLLEGE	555 BROADWAY	DOBBS FERRY	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	05	3	9/29/2023	EXTENSION WITH OR WITHOUT FUNDS	$0
														Subtotal = $0

Issue Date FY: 2022 ( Subtotal = $0 )
2022	2019	MERCY COLLEGE	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	03	3	9/26/2022	EXTENSION WITH OR WITHOUT FUNDS	$0
2022	2019	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	02	3	4/12/2022	OTHER REVISION	$0
														Subtotal = $0

Issue Date FY: 2021 ( Subtotal = $0 )
2021	2020	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	01	3	9/29/2021	EXTENSION WITH OR WITHOUT FUNDS	$0
2021	2019	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	01	3	9/29/2021	EXTENSION WITH OR WITHOUT FUNDS	$0
														Subtotal = $0

Issue Date FY: 2020 ( Subtotal = $200,000 )
2020	2020	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	00	3	7/9/2020	NON-COMPETING CONTINUATION	$200,000
2020	2018	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	01	2	9/3/2020	OTHER REVISION	$0
														Subtotal = $200,000

Issue Date FY: 2019 ( Subtotal = $200,000 )
2019	2019	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	00	2	8/12/2019	NON-COMPETING CONTINUATION	$200,000
														Subtotal = $200,000

Issue Date FY: 2018 ( Subtotal = $200,000 )
2018	2018	Mercy College	555 Broadway Frnt	Dobbs Ferry	NY	10522	WESTCHESTER	USA	ACL National Institute on Disability, Independent Living, and Rehabilitation Research	00	1	8/1/2018	NEW	$200,000
														Subtotal = $200,000

Grand Total All Awards = $600,000

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Adolescents with Lupus: The Impact of Patient/Provider Discordance, Depression, Cognition and Language on Quality of Life

Award Number: 90IFST0003

ORGANIZATION: NATIONAL INSTITUTE ON DISABILITY, INDEPENDENT LIVING, AND REHABILITATION RESEARCH

OPDIV: ACL

AWARD CLASS: DISCRETIONARY

AWARD ACTIVITY TYPE: OTHER

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