Cognitive Determinants of Decisional Capacity in Neurodegenerative Disorders

Overview

Journal Ann Clin Transl Neurol

Specialty Neurology

Date 2023 Aug 7

PMID 37545108

Authors

Makayla Portley

Carolyn Sherer

Tianxia Wu

Jennifer Farren

Laura E Danielian

Sonja W Scholz

Bryan J Traynor

Michael E Ward

Taryn Haselhuhn

Allison Snyder

Justin Y Kwan

Affiliations

Soon will be listed here.

Abstract

Objective: Cognitive contributions to decisional capacity are complex and not well understood. Capacity to consent for research has been linked to executive function, but executive function assessment tools are imperfect. In this study, we examine the relationship between decisional capacity and a newly developed executive function composite score and determine whether cognitive performance can predict impaired decisional capacity.

Methods: This is a cross sectional study of participants at the National Institutes of Health with frontotemporal dementia-amyotrophic lateral sclerosis spectrum disorders enrolled between 2017 and 2022. A structured interview tool was used to ascertain research decisional capacity. Study participant Uniform Data Set (v3.0) executive function (UDS3-EF) composite score, Clinical Dementia Rating Scale©, and Neuropsychiatric Inventory was determined.

Results: A decrease in UDS3-EF composite score significantly increased the odds of impaired decisional capacity (OR = 2.92, 95% CI [1.66-5.13], p = 0.0002). Executive function was most impaired in frontotemporal dementia (-2.86, SD = 1.26) and least impaired in amyotrophic lateral sclerosis (-0.52, SD = 1.25) participants. The UDS3-EF composite score was also strongly correlated to the Clinical Dementia Rating Scale©.

Interpretation: Decisional capacity is intrinsically related to executive function in neurodegenerative disorders, and executive dysfunction may predict a lack of decisional capacity alerting investigators of the need for additional scrutiny during the informed consent process.

References

OBryant S, Waring S, Cullum C, Hall J, Lacritz L, Massman P . Staging dementia using Clinical Dementia Rating Scale Sum of Boxes scores: a Texas Alzheimer's research consortium study. Arch Neurol. 2008; 65(8):1091-5. PMC: 3409562. DOI: 10.1001/archneur.65.8.1091. View

Jeste D, Palmer B, Appelbaum P, Golshan S, Glorioso D, Dunn L . A new brief instrument for assessing decisional capacity for clinical research. Arch Gen Psychiatry. 2007; 64(8):966-74. DOI: 10.1001/archpsyc.64.8.966. View

Johns E, Phillips N, Belleville S, Goupil D, Babins L, Kelner N . Executive functions in frontotemporal dementia and Lewy body dementia. Neuropsychology. 2009; 23(6):765-77. DOI: 10.1037/a0016792. View

Packwood S, Hodgetts H, Tremblay S . A multiperspective approach to the conceptualization of executive functions. J Clin Exp Neuropsychol. 2011; 33(4):456-70. DOI: 10.1080/13803395.2010.533157. View

. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013; 310(20):2191-4. DOI: 10.1001/jama.2013.281053. View

Knopman D, Weintraub S, Pankratz V . Language and behavior domains enhance the value of the clinical dementia rating scale. Alzheimers Dement. 2011; 7(3):293-9. PMC: 3096831. DOI: 10.1016/j.jalz.2010.12.006. View

Cummings J . The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurology. 1997; 48(5 Suppl 6):S10-6. DOI: 10.1212/wnl.48.5_suppl_6.10s. View

Appelbaum P, Grisso T . Assessing patients' capacities to consent to treatment. N Engl J Med. 1988; 319(25):1635-8. DOI: 10.1056/NEJM198812223192504. View

Knopman D, Kramer J, Boeve B, Caselli R, Graff-Radford N, Mendez M . Development of methodology for conducting clinical trials in frontotemporal lobar degeneration. Brain. 2008; 131(Pt 11):2957-68. PMC: 2725027. DOI: 10.1093/brain/awn234. View

10.

Ahmed F, Miller L . Executive function mechanisms of theory of mind. J Autism Dev Disord. 2010; 41(5):667-78. DOI: 10.1007/s10803-010-1087-7. View

11.

Ringholz G, Appel S, Bradshaw M, Cooke N, Mosnik D, Schulz P . Prevalence and patterns of cognitive impairment in sporadic ALS. Neurology. 2005; 65(4):586-90. DOI: 10.1212/01.wnl.0000172911.39167.b6. View

12.

Rascovsky K, Hodges J, Knopman D, Mendez M, Kramer J, Neuhaus J . Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain. 2011; 134(Pt 9):2456-77. PMC: 3170532. DOI: 10.1093/brain/awr179. View

13.

Gilbert T, Bosquet A, Thomas-Anterion C, Bonnefoy M, Le Saux O . Assessing capacity to consent for research in cognitively impaired older patients. Clin Interv Aging. 2017; 12:1553-1563. PMC: 5627738. DOI: 10.2147/CIA.S141905. View

14.

Staffaroni A, Asken B, Casaletto K, Fonseca C, You M, Rosen H . Development and validation of the Uniform Data Set (v3.0) executive function composite score (UDS3-EF). Alzheimers Dement. 2020; 17(4):574-583. PMC: 8044003. DOI: 10.1002/alz.12214. View

15.

Marson D, McInturff B, Hawkins L, Bartolucci A, Harrell L . Consistency of physician judgments of capacity to consent in mild Alzheimer's disease. J Am Geriatr Soc. 1997; 45(4):453-7. DOI: 10.1111/j.1532-5415.1997.tb05170.x. View

16.

Abrahams S, Leigh P, Harvey A, Vythelingum G, Grise D, Goldstein L . Verbal fluency and executive dysfunction in amyotrophic lateral sclerosis (ALS). Neuropsychologia. 2000; 38(6):734-47. DOI: 10.1016/s0028-3932(99)00146-3. View

17.

Hughes C, Berg L, Danziger W, COBEN L, Martin R . A new clinical scale for the staging of dementia. Br J Psychiatry. 1982; 140:566-72. DOI: 10.1192/bjp.140.6.566. View

18.

Caverzasi E, Battistella G, Chu S, Rosen H, Zanto T, Karydas A . Gyrification abnormalities in presymptomatic expansion carriers. J Neurol Neurosurg Psychiatry. 2019; 90(9):1005-1010. PMC: 6820159. DOI: 10.1136/jnnp-2018-320265. View

19.

Darby R, Dickerson B . Dementia, Decision Making, and Capacity. Harv Rev Psychiatry. 2017; 25(6):270-278. PMC: 5711478. DOI: 10.1097/HRP.0000000000000163. View

20.

Palmer B, Harmell A, Pinto L, Dunn L, Kim S, Golshan S . Determinants of Capacity to Consent to Research on Alzheimer's disease. Clin Gerontol. 2017; 40(1):24-34. PMC: 5279898. DOI: 10.1080/07317115.2016.1197352. View