Literature DB >> 19047560

How redesigning AD clinical trials might increase study partners' willingness to participate.

Jason Karlawish1, Mark S Cary, Jonathan Rubright, Tom Tenhave.   

Abstract

BACKGROUND: Timely recruiting and retaining participants into Alzheimer disease (AD) clinical trials is a challenge. We used conjoint analysis to identify how alterations in attributes of clinical trial design improve willingness to participate: risk, home visits, car service, or increased chance of receiving intervention.
METHOD: A total of 108 study partners of patients with very mild to severe stage AD rated willingness to allow their relative to participate in eight clinical trials that varied combinations of the four attributes.
RESULTS: The highest utility was for home visits (0.89) which essentially compensated for the disutility of high risk (-0.85). The combination of home visits and car service was redundant, with almost no increase in utility over home visits alone. Seventeen percent were willing to participate in a trial with no amenities; the addition of home visits increased predicted willingness to participate to 27%; low risk, home visits, and higher chance of active treatment increased predicted willingness to 60%. The value of reducing the hassles of travel correlated well with measures of AD severity (activities of daily living r = 0.41, p < 0.001; basic activities of daily living r = 0.38, p < 0.001; Neuropsychiatric Inventory severity p = 0.24, p = 0.01; Neuropsychiatric Inventory distress r = 0.23, p < 0.02). No association was found between degree of study partner burden and willingness to tolerate risk of an intervention.
CONCLUSION: Clinical trials that reduce travel inconvenience may offset the disincentive of study features such as the risk of intervention and may also increase willingness to participate. Redesigning trials may also help recruit patients with more severe Alzheimer disease. Shorter recruitment periods and increased retention rates may offset costs of these changes.

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Year:  2008        PMID: 19047560      PMCID: PMC2649726          DOI: 10.1212/01.wnl.0000336652.05779.ea

Source DB:  PubMed          Journal:  Neurology        ISSN: 0028-3878            Impact factor:   9.910


  10 in total

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7.  Validation of the NPI-Q, a brief clinical form of the Neuropsychiatric Inventory.

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8.  Clinical diagnosis of Alzheimer's disease: report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease.

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9.  The development of a rapid screen for caregiver burden.

Authors:  Karen B Hirschman; Judy A Shea; Sharon X Xie; Jason H T Karlawish
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Journal:  Arch Intern Med       Date:  2004-06-28
  10 in total
  30 in total

Review 1.  Preclinical trials in autosomal dominant AD: implementation of the DIAN-TU trial.

Authors:  S M Mills; J Mallmann; A M Santacruz; A Fuqua; M Carril; P S Aisen; M C Althage; S Belyew; T L Benzinger; W S Brooks; V D Buckles; N J Cairns; D Clifford; A Danek; A M Fagan; M Farlow; N Fox; B Ghetti; A M Goate; D Heinrichs; R Hornbeck; C Jack; M Jucker; W E Klunk; D S Marcus; R N Martins; C M Masters; R Mayeux; E McDade; J C Morris; A Oliver; J M Ringman; M N Rossor; S Salloway; P R Schofield; J Snider; P Snyder; R A Sperling; C Stewart; R G Thomas; C Xiong; R J Bateman
Journal:  Rev Neurol (Paris)       Date:  2013-09-06       Impact factor: 2.607

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3.  Understanding the relative importance of preserving functional abilities in Alzheimer's disease in the United States and Germany.

Authors:  A Brett Hauber; Ateesha F Mohamed; F Reed Johnson; Michael Cook; H Michael Arrighi; Jing Zhang; Michael Grundman
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5.  Reasons that prevent the inclusion of Alzheimer's disease patients in clinical trials.

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Review 6.  Facilitating Alzheimer disease research recruitment.

Authors:  Joshua D Grill; James E Galvin
Journal:  Alzheimer Dis Assoc Disord       Date:  2014 Jan-Mar       Impact factor: 2.703

7.  Why are spousal caregivers more prevalent than nonspousal caregivers as study partners in AD dementia clinical trials?

Authors:  Mark S Cary; Jonathan D Rubright; Joshua D Grill; Jason Karlawish
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8.  "Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice.

Authors:  Laura B Dunn; Stephanie Reyes Fisher; Melinda Hantke; Paul S Appelbaum; Daniel Dohan; Jenifer P Young; Laura Weiss Roberts
Journal:  Am J Geriatr Psychiatry       Date:  2013-02-06       Impact factor: 4.105

9.  Researchers' perspectives on the role of study partners in dementia research.

Authors:  Betty S Black; Holly Taylor; Peter V Rabins; Jason Karlawish
Journal:  Int Psychogeriatr       Date:  2014-07-03       Impact factor: 3.878

10.  Feasibility of Virtual Research Visits in Fox Trial Finder.

Authors:  E Ray Dorsey; Joseph D Wagner; Michael T Bull; Ashley Rizzieri; Justin Grischkan; Meredith A Achey; Todd Sherer; Sohini Chowdhury; Claire Meunier; Lily Cappelletti; Charlotte Rocker; Irene H Richard; Heidi Schwarz; Gail Kang; Stacy H Ahmad; Rachel A Biemiller; Kevin M Biglan
Journal:  J Parkinsons Dis       Date:  2015       Impact factor: 5.568

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