Literature DB >> 32589281

Achieving Health Equity in Embedded Pragmatic Trials for People Living with Dementia and Their Family Caregivers.

Ana R Quiñones1,2, Susan L Mitchell3,4, Jonathan D Jackson5, María P Aranda6, Peggye Dilworth-Anderson7, Ellen P McCarthy3,4, Ladson Hinton8.   

Abstract

Embedded pragmatic clinical trials (ePCTs) advance research on Alzheimer's disease/Alzheimer's disease and related dementias (AD/ADRD) in real-world contexts; however, health equity issues have not yet been fully considered, assessed, or integrated into ePCT designs. Health disparity populations may not be well represented in ePCTs without special efforts to identify and successfully recruit sites of care that serve larger numbers of these populations. The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's disease (AD) and AD-Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory's Health Equity Team will contribute to the overall mission of the collaboratory by developing and implementing strategies to address health equity in the conduct of ePCTs and ensure the collaboratory is a national resource for all Americans with dementia. As a first step toward meeting these goals, this article reviews what is currently known about the inclusion of health disparities populations of people living with dementia (PLWD) and their caregivers in ePCTs, highlights unique challenges related to health equity in the conduct of ePCTs, and suggests priority areas in the design and implementation of ePCTs to increase the awareness and avoidance of pitfalls that may perpetuate and magnify healthcare disparities. J Am Geriatr Soc 68:S8-S13, 2020.
© 2020 The American Geriatrics Society.

Entities:  

Keywords:  AD/ADRD; caregivers; dementia; health equity; pragmatic trials

Mesh:

Year:  2020        PMID: 32589281      PMCID: PMC7422698          DOI: 10.1111/jgs.16614

Source DB:  PubMed          Journal:  J Am Geriatr Soc        ISSN: 0002-8614            Impact factor:   5.562


  35 in total

1.  High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding.

Authors:  D E Meier; J C Ahronheim; J Morris; S Baskin-Lyons; R S Morrison
Journal:  Arch Intern Med       Date:  2001-02-26

Review 2.  Reviews: developing culturally sensitive dementia caregiver interventions: are we there yet?

Authors:  Anna M Napoles; Letha Chadiha; Rani Eversley; Gina Moreno-John
Journal:  Am J Alzheimers Dis Other Demen       Date:  2010-05-27       Impact factor: 2.035

3.  The PRECIS-2 tool: designing trials that are fit for purpose.

Authors:  Kirsty Loudon; Shaun Treweek; Frank Sullivan; Peter Donnan; Kevin E Thorpe; Merrick Zwarenstein
Journal:  BMJ       Date:  2015-05-08

4.  Race reporting and disparities in clinical trials on Alzheimer's disease: A systematic review.

Authors:  Marco Canevelli; Giuseppe Bruno; Giulia Grande; Federica Quarata; Riccardo Raganato; Francesca Remiddi; Martina Valletta; Valerio Zaccaria; Nicola Vanacore; Matteo Cesari
Journal:  Neurosci Biobehav Rev       Date:  2019-04-01       Impact factor: 8.989

5.  Underreporting of Gender and Race/Ethnicity Differences in NIH-Funded Dementia Caregiver Support Interventions.

Authors:  Andrea Gilmore-Bykovskyi; Rachel Johnson; Lily Walljasper; Laura Block; Nicole Werner
Journal:  Am J Alzheimers Dis Other Demen       Date:  2017-12-27       Impact factor: 2.035

6.  Racial and ethnic disparities in the treatment of dementia among Medicare beneficiaries.

Authors:  Ilene H Zuckerman; Priscilla T Ryder; Linda Simoni-Wastila; Thomas Shaffer; Masayo Sato; Lirong Zhao; Bruce Stuart
Journal:  J Gerontol B Psychol Sci Soc Sci       Date:  2008-09       Impact factor: 4.077

7.  Depressive symptomatology in first-degree family caregivers of Alzheimer disease patients: a cross-ethnic comparison.

Authors:  D G Harwood; W W Barker; M Cantillon; D A Loewenstein; R Ownby; R Duara
Journal:  Alzheimer Dis Assoc Disord       Date:  1998-12       Impact factor: 2.703

8.  End of life care and reactions to death in African-American and white family caregivers of relatives with Alzheimer's disease.

Authors:  J E Owen; K T Goode; W E Haley
Journal:  Omega (Westport)       Date:  2001

9.  Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: a scoping review.

Authors:  Ladson Hinton; Duyen Tran; Thuc-Nhi Nguyen; Janis Ho; Laura Gitlin
Journal:  BMJ Glob Health       Date:  2019-11-12

10.  Getting added value from using qualitative research with randomized controlled trials: a qualitative interview study.

Authors:  Alicia O'Cathain; Jackie Goode; Sarah J Drabble; Kate J Thomas; Anne Rudolph; Jenny Hewison
Journal:  Trials       Date:  2014-06-09       Impact factor: 2.279

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  5 in total

1.  Open science in dementia care embedded pragmatic clinical trials.

Authors:  Zachary G Baker; Allison M Gustavson; Lauren L Mitchell; Joseph E Gaugler
Journal:  Psychol Aging       Date:  2022-02

2.  Effect of advance care planning video on do-not-hospitalize orders for nursing home residents with advanced illness.

Authors:  Ellen M McCreedy; Xiaofei Yang; Susan L Mitchell; Roee Gutman; Joan Teno; Lacey Loomer; Patience Moyo; Angelo Volandes; Pedro L Gozalo; Emmanuelle Belanger; Jessica Ogarek; Vincent Mor
Journal:  BMC Geriatr       Date:  2022-04-08       Impact factor: 3.921

3.  Justice and equity in pragmatic clinical trials: Considerations for pain research within integrated health systems.

Authors:  Joseph Ali; Alison F Davis; Diana J Burgess; Daniel I Rhon; Robert Vining; Stacey Young-McCaughan; Sean Green; Robert D Kerns
Journal:  Learn Health Syst       Date:  2021-10-19

4.  Emergency department care transition barriers: A qualitative study of care partners of older adults with cognitive impairment.

Authors:  Cameron J Gettel; Peter T Serina; Ivie Uzamere; Kizzy Hernandez-Bigos; Arjun K Venkatesh; Andrew B Cohen; Joan K Monin; Shelli L Feder; Terri R Fried; Ula Hwang
Journal:  Alzheimers Dement (N Y)       Date:  2022-09-28

Review 5.  Impact of dementia: Health disparities, population trends, care interventions, and economic costs.

Authors:  María P Aranda; Ian N Kremer; Ladson Hinton; Julie Zissimopoulos; Rachel A Whitmer; Cynthia Huling Hummel; Laura Trejo; Chanee Fabius
Journal:  J Am Geriatr Soc       Date:  2021-07       Impact factor: 7.538

  5 in total

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