The DOI matches its Crossref record; 19 of the 20 references it cites were found in a registry or an index.
Assessing the Competence of Persons With Alzheimer’s Disease in Providing Informed Consent for Participation in Research
Abstract
OBJECTIVE: The capacity of persons with Alzheimer's disease or other neuropsychiatric disorders for giving consent to participate in research has come under increasing scrutiny. While instruments for measuring abilities related to capacity have been developed, how they should be used to categorize subjects as capable or incapable is not clear. A criterion validation study was carried out to help address this question. METHOD: The authors measured the ability of 37 subjects with mild-to-moderate Alzheimer's disease and 15 elderly comparison subjects to provide consent for participation in a hypothetical clinical trial. Using the judgment of three experts as the criterion standard, the authors performed a receiver operator characteristic analysis for the capacity ability measures from the MacArthur Competence Assessment Tool-Clinical Research VERSION: The results were compared with categorizations of capacity status that were based on normative values. RESULTS: While most comparison subjects scored perfectly on all measures of the competence assessment tool, the majority of the group with Alzheimer's disease showed significant decision-making impairment. Thresholds based on normative values resulted in 84% (N=31) of the Alzheimer's disease subjects being rated as incapable on at least one ability; thresholds based on expert judgment resulted in 62% (N=23) failing to meet cutoff scores on at least one ability. CONCLUSIONS: Even relatively mild Alzheimer's disease significantly impairs consent-giving capacity. But differentiating capable from incapable subjects remains an issue despite the aid of standardized tools. More research is needed to understand the relationship between subject factors (performance on ability measures) and categorical judgments about their capacity.
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“In adults, systematic studies using MacCAT-CR were conducted in populations of mentally compromised patients [29, 30].”
From Why is it hard to make progress in assessing children's decision-making competence? (2015) · cites this paper as [29]
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“Previous research demonstrated that the MacCAT scales provide the best results [28–30].”
From Why is it hard to make progress in assessing children's decision-making competence? (2015) · cites this paper as [29]
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Kim, S. Y. H., Karlawish, J. H., & Caine, E. D. (2002) · American Journal of Geriatric Psychiatry · doi:10.1097/00019442-200203000-00006 · Cited by 314
Self-citationReliability and Validity of the Evaluation to Sign Consent Measure
Resnick, B. M., Gruber‐Baldini, A. L., Pretzer‐Aboff, I., Galik, E. M., Buie, V., Russ, K., & Zimmerman, S. I. (2007) · The Gerontologist · doi:10.1093/geront/47.1.69 · Cited by 246
“In an attempt to specifically evaluate the capacity to consent to research, researchers developed the MacArthur Competence Assessment Tool—Clinical Research Version (MacCAT-CR; Applebaum & Grisso, 2001; Kim, Caine, Currier, Leibovici, & Ryan, 2001 ).”
MethodDeveloping a tool for measuring the decision-making competence of older adults.
Finucane, M. L., & Gullion, C. M. (2010) · Psychology and Aging · doi:10.1037/a0019106 · Cited by 202
Palmer, B. W., Dunn, L. B., Appelbaum, P. S., Mudaliar, S. R. D., Thal, L. J., Henry, R. R., Golshan, S., & Jeste, D. V. (2005) · Archives of General Psychiatry · doi:10.1001/archpsyc.62.7.726 · Cited by 196
The ability of persons with Alzheimer disease (AD) to make a decision about taking an AD treatment
Karlawish, J. H., Casarett, D., James, B. D., Xie, S. X., & Kim, S. Y. H. (2005) · Neurology · doi:10.1212/01.wnl.0000160000.01742.9d · Cited by 199
Self-citationThe capacity to consent to treatment and research: A review of standardized assessment tools
Sturman, E. D. (2005) · Clinical Psychology Review · doi:10.1016/j.cpr.2005.04.010 · Cited by 195
“Kim et al. (2002) reviewed studies on competency in cognitively impaired elderly patients and found that bwith few exceptions, every research group developed its own instrument for measuring decisional abilities.”
BackgroundMethodInfluentialWhy is it hard to make progress in assessing children's decision-making competence?
Hein, I. M., Troost, P. W., Broersma, A., de Vries, M. C., Daams, J. G., & Lindauer, R. J. L. (2015) · BMC Medical Ethics · doi:10.1186/1472-6939-16-1 · Cited by 191
“In adults, systematic studies using MacCAT-CR were conducted in populations of mentally compromised patients [29,30].”
BackgroundCompetence of mentally ill patients: a comparative empirical study
VOLLMANN, J., BAUER, A., DANKER-HOPFE, H., & HELMCHEN, H. (2003) · Psychological Medicine · doi:10.1017/s0033291703008389 · Cited by 159
“Among patients with dementia, the proportion of non-competent persons increased both with increasing severity of the disease and with increasing stringency of the applied legal standards (Marson et al. 1995; Kim et al. 2001).”
BackgroundChallenges in Conducting Qualitative Research with Individuals with Dementia
Beuscher, L. M., & Grando, V. T. (2009) · Research in Gerontological Nursing · doi:10.3928/19404921-20090101-04 · Cited by 157
Consent and assent to participate in research from people with dementia
Slaughter, S., Cole, D., Jennings, E., & Reimer, M. A. (2007) · Nursing Ethics · doi:10.1177/0969733007071355 · Cited by 150
Kim, S. Y. H., & Caine, E. D. (2002) · Psychiatric Services · doi:10.1176/appi.ps.53.10.1322 · Cited by 150
Self-citationAssessment of capacity in an aging society.
Moye, J. A., Marson, D. C., & Edelstein, B. A. (2013) · American Psychologist · doi:10.1037/a0032159 · Cited by 143
Karlawish, J. H., Casarett, D., & James, B. D. (2002) · Journal of the American Geriatrics Society · doi:10.1046/j.1532-5415.2002.50615.x · Cited by 129
Measuring Decision-Making Capacity in Cognitively Impaired Individuals
Karlawish, J. H. (2007) · Neurosignals · doi:10.1159/000109763 · Cited by 121
Medical decision-making capacity in mild cognitive impairment
Okonkwo, O. C., Griffith, H. R., Copeland, J., Belue, K., Lanza, S., ZAMRINI, E. Y., Harrell, L. E., Brockington, J. C., Clark, D. G., Raman, R., et al. (2008) · Neurology · doi:10.1212/01.wnl.0000334301.32358.48 · Cited by 118
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., & Karlawish, J. H. (2005) · The Gerontologist · doi:10.1093/geront/45.3.381 · Cited by 114
“We defined whether the patient had the capacity to participate in the treatment decision or not by using the consensus of at least two raters’ capacity judgments (Kim et al., 2001).”
Lai, J. M., & Karlawish, J. H. (2007) · American Journal of Geriatric Psychiatry · doi:10.1097/01.jgp.0000239246.10056.2e · Cited by 113
Moye, J. A., Gurrera, R. J., Karel, M. J., Edelstein, B. A., & O'Connell, C. (2005) · Clinical Psychology Review · doi:10.1016/j.cpr.2005.04.013 · Cited by 103
Decisional Capacity for Research Participation in Individuals with Mild Cognitive Impairment
Jefferson, A. L., Lambe, S. A., Moser, D. J., Byerly, L. K., Ozonoff, A., & Karlawish, J. H. (2008) · Journal of the American Geriatrics Society · doi:10.1111/j.1532-5415.2008.01752.x · Cited by 99
“To better understand the clinical significance of the MCI participant scores on the MacCAT-CR, a criterion standard of competent versus not competent was used, based on the agreement of two expert raters’ competency judgments.(3,17) Two clinical neuropsychologists with experience in competency assessment were asked to…”
BackgroundMethodPalmer, B. W. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbj002 · Cited by 99
Proxy and Surrogate Consent in Geriatric Neuropsychiatric Research: Update and Recommendations
Kim, S. Y. H., Appelbaum, P. S., Jeste, D. V., & Olin, J. T. (2004) · American Journal of Psychiatry · doi:10.1176/appi.ajp.161.5.797 · Cited by 94
“In one group of Alzheimer’s disease subjects with a mean Mini-Mental State Examination (MMSE) score of 23, more than 60% failed at least one standard of competence for research consent ( 28 ).”
BackgroundSelf-citationCognitive impairment and PD patients' capacity to consent to research
Karlawish, J. H., Cary, M. S., Moelter, S. T., Siderowf, A. D., Sullo, E., Xie, S. X., & Weintraub, D. A. (2013) · Neurology · doi:10.1212/wnl.0b013e3182a05ba5 · Cited by 91
“Its reliability and validity has been shown in persons with major depression,(13) schizophrenia,(14,15) and mild to early moderate Alzheimer disease.(16,17) The interviewer scored the interview as she performed”
BackgroundDowning, L. J., Caprio, T. V., & Lyness, J. M. (2013) · Current Psychiatry Reports · doi:10.1007/s11920-013-0365-4 · Cited by 97
Research Involving Cognitively Impaired Adults
Karlawish, J. H. (2003) · New England Journal of Medicine · doi:10.1056/nejmsb030172 · Cited by 89
Competence to Consent to Research Among Long-Stay Inpatients With Chronic Schizophrenia
Kovnick, J. A., Appelbaum, P. S., Hoge, S. K., & Leadbetter, R. A. (2003) · Psychiatric Services · doi:10.1176/appi.ps.54.9.1247 · Cited by 86
Marson, D. C. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbj027 · Cited by 84
Determining when impairment constitutes incapacity for informed consent in schizophrenia research
Kim, S. Y. H., Appelbaum, P. S., Swan, J., Stroup, T. S., McEvoy, J. P., Goff, D. C., Jeste, D. V., Lamberti, J. S., Leibovici, A., & Caine, E. D. (2007) · British Journal of Psychiatry · doi:10.1192/bjp.bp.106.033324 · Cited by 84
“…in people with schizophrenia (Carpenter et al, 2000; Dunn et al, 2002; Moser et al, 2002; Stroup et al, 2005) and people with major depression (Appelbaum et al, 1999) and dementia (Kim et al, 2001), and is a companion instrument to the MacArthur Competence Assessment Tool for Treatment (MacCAT–”
MethodSelf-citationHow the Powerful Decide: Access to Research Participation by those at the Margins
McDonald, K., & Keys, C. B. (2008) · American Journal of Community Psychology · doi:10.1007/s10464-008-9192-x · Cited by 83
“…what circumstances and in what form such safeguards should be implemented (Becker et al. 2004; Dalton and McVilly 2004; Ellis 1992; Freedman 2001; Hammel 2003; Haywood 1977; Justo 2004; Kellett and Nind 2001; Kim et al. 2001; Muncie et al. 1997; NIH 1999; Sachs et al. 1994; Warren et al. 1986).”
Instruments to assess decision-making capacity: an overview
Vellinga, A., Smit, J. H., van Leeuwen, E., van Tilburg, W., & Jonker, C. (2004) · International Psychogeriatrics · doi:10.1017/s1041610204000808 · Cited by 81
“Other studies showed that even patients with mild or moderate Alzheimer’s disease retained the capacity to elect choices about treatment and research participation (Marson et al., 1995a; Kim et al., 2001).”
BackgroundInfluentialUnderstanding of informed consent by demented individuals
Buckles, V., Powlishta, K. K., Palmer, J. L., Coats, M. A., Hosto, T. L., Buckley, A. H., & Morris, J. C. (2003) · Neurology · doi:10.1212/01.wnl.0000098933.34804.fc · Cited by 81
Kim, S. Y. H., Cox, C., & Caine, E. D. (2002) · American Journal of Psychiatry · doi:10.1176/appi.ajp.159.5.797 · Cited by 80
Self-citationFisher, C. B. (2003) · Mental Retardation and Developmental Disabilities Research Reviews · doi:10.1002/mrdd.10052 · Cited by 80
The ethics of informed consent in Alzheimer disease research
Kim, S. Y. H. (2011) · Nature Reviews Neurology · doi:10.1038/nrneurol.2011.76 · Cited by 81
Self-citationWhat do people at risk for Alzheimer disease think about surrogate consent for research?
Kim, S. Y. H., Kim, H. M., McCallum, C., & Tariot, P. N. (2005) · Neurology · doi:10.1212/01.wnl.0000183144.61428.73 · Cited by 79
Self-citationAssessment of Therapeutic Misconception in Older Schizophrenia Patients With a Brief Instrument
Dunn, L. B., Palmer, B. W., Keehan, M., Jeste, D. V., & Appelbaum, P. S. (2006) · American Journal of Psychiatry · doi:10.1176/appi.ajp.163.3.500 · Cited by 78
Assessing Medical Decision-Making Competence in Transgender Youth
Vrouenraets, L. J. J. J., de Vries, A. L. C., de Vries, M. C., van der Miesen, A. I. R., & Hein, I. M. (2021) · PEDIATRICS · doi:10.1542/peds.2020-049643 · Cited by 77
“A panel of 12 experts (including child psychiatrists, pediatric endocrinologists, child psychologists, and master thesis medical students) was trained in judging MDC on the basis of the 4 criteria, which are currently considered the generally accepted reference standard.(16,24,41,42)”
MethodWarner, J., McCarney, R., Griffin, M., Hill, K., & Fisher, P. (2008) · Journal of Medical Ethics · doi:10.1136/jme.2006.019786 · Cited by 75
“Many individuals with dementia who participate in research are likely to lack capacity, and there has been insufficient research on the relationship between ability measures and cognitive capacity.”
BackgroundAssessing capacity to consent for research in cognitively impaired older patients
Gilbert, T., Bosquet, A., Thomas-Antérion, C., Bonnefoy, M., & Saux, O. L. (2017) · Clinical Interventions in Aging · doi:10.2147/cia.s141905 · Cited by 73
“44,47 The test comes with a user’s guide and a precise rating manual.”
Surrogate consent for dementia research
Kim, S. Y. H., Kim, H. M., Langa, K. M., Karlawish, J. H., Knopman, D. S., & Appelbaum, P. S. (2009) · Neurology · doi:10.1212/01.wnl.0000339039.18931.a2 · Cited by 72
Self-citationInformed consent to psychotherapy: Protecting the dignity and respecting the autonomy of patients
Fisher, C. B., & Oransky, M. (2008) · Journal of Clinical Psychology · doi:10.1002/jclp.20472 · Cited by 71
Doloplus-2, a valid tool for behavioural pain assessment?
Hølen, J. C., Saltvedt, I. T., Fayers, P. M., Hjermstad, M. J., Loge, J. H., & Kaasa, S. (2007) · BMC Geriatrics · doi:10.1186/1471-2318-7-29 · Cited by 68
“In line with psychiatric methods for observational assessment and diagnoses in cases where an objective measure is inaccessible a clinical expert statement was used as the criterion for pain [33-35].”
Advance Directives for Health Care and Research
Bravo, G., Dubois, M., & Pâquet, M. (2003) · Alzheimer Disease & Associated Disorders · doi:10.1097/00002093-200310000-00004 · Cited by 67
Preservation of the Capacity to Appoint a Proxy Decision Maker
Kim, S. Y. H., Karlawish, J. H., Kim, H. M., Wall, I. F., Bozoki, A., & Appelbaum, P. S. (2011) · Archives of General Psychiatry · doi:10.1001/archgenpsychiatry.2010.191 · Cited by 64
“3%) of participants in the MMSE score range of 18 to 23, at which capacities can be particularly difficult to assess.(9,10) Performances on the drug RCT and neurosurgical RCT MacCAT-CR interviews are summarized in Table 2.”
BackgroundMethodSelf-citationAssessment of Decision-Making Capacity: Views and Experiences of Consultation Psychiatrists
Seyfried, L. S., Ryan, K. A., & Kim, S. Y. H. (2012) · Psychosomatics · doi:10.1016/j.psym.2012.08.001 · Cited by 59
Self-citationCapacity of Persons With Mental Retardation to Consent to Participate in Randomized Clinical Trials
Fisher, C. B., Cea, C. D., Davidson, P. W., & Fried, A. L. (2006) · American Journal of Psychiatry · doi:10.1176/ajp.2006.163.10.1813 · Cited by 59
Determining medical decision-making capacity in brain tumor patients: why and how?
Pace, A., Koekkoek, J. A. F., van den Bent, M. J., Bulbeck, H., Fleming, J., Grant, R., Golla, H., Henriksson, R., Kerrigan, S., Marosi, C., et al. (2020) · Neuro-Oncology Practice · doi:10.1093/nop/npaa040 · Cited by 56
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A review of ethical issues in dementia
Johnson, R., Karlawish, J. H., & Brodaty, H. (2015) · International Psychogeriatrics · doi:10.1017/s1041610215000848 · Cited by 55
“Studies of AD patients’ capacity to consent show that the likelihood of being judged capable of consent depends on the risks of the research and the overall severity of the patient’s cognitive impairment: the riskier the research and the more severe a patient’s dementia, the more likely a patient is judged not capable…”
Hølen, J. C., Saltvedt, I. T., Fayers, P. M., Bjørnnes, M., Stenseth, G., Hval, B., Filbet, M., Loge, J. H., & Kaasa, S. (2005) · Palliative Medicine · doi:10.1191/0269216305pm1031oa · Cited by 55
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“These cutpoints were empirically derived by Kim et al. (2001) relative to the capacity judgments of three independent expert-psychiatrist raters, in reference to a hypothetical clinical drug trial for Alzheimer Disease (AD) patients.”
BackgroundMethodInfluentialIdentifying ambulatory cancer patients at risk of impaired capacity to consent to research
Casarett, D., Karlawish, J. H., & Hirschman, K. B. (2003) · Journal of Pain and Symptom Management · doi:10.1016/s0885-3924(03)00221-5 · Cited by 54
Kim, S. Y. H. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbi062 · Cited by 53
“Others have shown that geriatric and consultation/liaison psychiatrists can often achieve a considerable degree of agreement.(13) Although it appears that giving”
BackgroundSelf-citationMittal, D., Palmer, B. W., Dunn, L. B., Landes, R. D., Ghormley, C. O., Beck, C. K., Golshan, S., Blevins, D., & Jeste, D. V. (2007) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e31802dd379 · Cited by 54
“The main effect for trial was significant (F[1,33] 42.”
BackgroundInfluentialJeste, D. V., & Saks, E. R. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.707 · Cited by 52
Vellinga, A., Smit, J. H., van Leeuwen, E., van Tilburg, W., & Jonker, C. (2004) · International Journal of Geriatric Psychiatry · doi:10.1002/gps.1139 · Cited by 51
“First, in line with earlier findings, physicians gave more lenient judgements than family members or the vignette method (Kim et al., 2001).”
BackgroundMethodResultInfluentialDecision‐making capacity and disaster research
Rosenstein, D. L. (2004) · Journal of Traumatic Stress · doi:10.1023/b:jots.0000048950.36359.a2 · Cited by 51
“The most common cause for concern in this regard is related to the nature of the underlying medical, neurological, or psychiatric disorder under study (Appelbaum, Roth, Lidz, Benson, & Winslade, 1987; Bonnie, 1997; Chen et al., 2002; Carpenter et al., 2000; Cherniack, 2002; Kim, Caine, Currier, Leibovici, & Ryan, 2001…”
MethodCompetence and Vulnerability in Biomedical Research
Bielby, P. (2008) · International library of ethics, law, and the new medicine/The international library of ethics, law, and the new medicine · doi:10.1007/978-1-4020-8604-5 · Cited by 51
Moberg, P. J., & Rick, J. H. (2008) · Neurorehabilitation · doi:10.3233/nre-2008-23504 · Cited by 50
“The MacCAT-T has been widely used in competence studies in Alzheimer’s disease (AD) and has generally been shown to have good predictive validity [26–28].”
Rubright, J. D., Casarett, D., Gur, R. C., Xie, S. X., Karlawish, J. H., & Sankar, P. L. (2010) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e3181dd1c3b · Cited by 49
Ethics in medical research: General principles with special reference to psychiatry research
Avasthi, A., Ghosh, A., Sarkar, S., & Grover, S. (2013) · Indian Journal of Psychiatry · doi:10.4103/0019-5545.105525 · Cited by 48
“Testing such innovative approaches can carry risks of significant harm[12] even while raising hopes for future benefits.[13] Furthermore, the very nature of many neuropsychiatric disorders creates ethical complexity because many persons with such disorders have impaired cognition or emotion.”
BackgroundEnhancing the informed consent process: a conceptual overview
Eyler, L. T., & Jeste, D. V. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.691 · Cited by 49
How Important Is ‘Accuracy’ of Surrogate Decision-Making for Research Participation?
Kim, S. Y. H., Kim, H. M., Ryan, K. A., Appelbaum, P. S., Knopman, D. S., Damschroder, L. J., & Vries, R. G. D. (2013) · PLoS ONE · doi:10.1371/journal.pone.0054790 · Cited by 46
“Although some persons with mild AD may be able to provide consent, the disease leads to early decisional incapacity [1,2,3], and surrogate consent for research is usually necessary.”
BackgroundSelf-citationEnrolling Decisionally Impaired Adults in Clinical Research
Chen, D. T., Miller, F. G., & Rosenstein, D. L. (2002) · Medical Care · doi:10.1097/00005650-200209001-00004 · Cited by 45
Karlawish, J. H., Kim, S. Y. H., Knopman, D. S., van Dyck, C. H., James, B. D., & Marson, D. C. (2008) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e318172b406 · Cited by 46
Self-citationDunn, L. B., Fisher, S. R., Hantke, M., Appelbaum, P. S., Dohan, D. P., Young, J. P., & Roberts, L. W. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.11.014 · Cited by 45
Kim, S. Y. H., Appelbaum, P. S., Kim, H. M., Wall, I. F., Bourgeois, J. A., Frankel, B. L., Hails, K. C., Rundell, J. R., Seibel, K. M., & Karlawish, J. H. (2011) · Psychosomatics · doi:10.1016/j.psym.2011.01.012 · Cited by 45
“studies reporting high rates of disagreement in capacity judgments, and others showing somewhat more agreement.(4,6)”
ResultSelf-citationInformed consent for research participation in frail older persons
Barron, J. S., Duffey, P. L., Byrd, L. J., Campbell, R., & Ferrucci, L. (2004) · Aging Clinical and Experimental Research · doi:10.1007/bf03324536 · Cited by 45
Do Clinicians Follow a Risk-Sensitive Model of Capacity-Determination? An Experimental Video Survey
Kim, S. Y. H., Caine, E. D., Swan, J. G., & Appelbaum, P. S. (2006) · Psychosomatics · doi:10.1176/appi.psy.47.4.325 · Cited by 44
Self-citationAssessing decision-making capacity at end of life
Kolva, E., Rosenfeld, B. D., Brescia, R. J., & Comfort, C. P. (2014) · General Hospital Psychiatry · doi:10.1016/j.genhosppsych.2014.02.013 · Cited by 43
Wayfinding in ageing and Alzheimer's disease within a virtual senior residence: study protocol
Davis, R., & Ohman, J. M. (2016) · Journal of Advanced Nursing · doi:10.1111/jan.12945 · Cited by 42
“In this study, since prior research has indicated that 40% of persons with early stage AD/MCI may not have consent capacity (Kim et al. 2001), the Evaluation to Sign Consent Measure (ESC; Resnick et al.”
The effects of normal aging on multiple aspects of financial decision-making
Bangma, D. F., Fuermaier, A. B. M., Tucha, L., Tucha, O. M., & Koerts, J. (2017) · PLoS ONE · doi:10.1371/journal.pone.0182620 · Cited by 43
Determinants of Capacity to Consent to Research on Alzheimer’s Disease
Palmer, B. W., Harmell, A. L., Pinto, L. L., Dunn, L. B., Kim, S. Y. H., Golshan, S., & Jeste, D. V. (2016) · Clinical Gerontologist · doi:10.1080/07317115.2016.1197352 · Cited by 41
“What would an appropriate capacity assessment consist of? Based on our findings and those of others (Karlawish, Casarett, & James, 2002; Kim et al., 2001; Rubright et al., 2010), we would argue that, at minimum, a structured assessment of the ability to describe, in the participant’s own words, the purpose, procedures…”
BackgroundMethodResultInfluentialSelf-citationVoluntary Consent in Correctional Settings: Do Offenders Feel Coerced to Participate in Research?
Edens, J. F., Epstein, M. K., Stiles, P. G., & Poythress, N. G. (2011) · Behavioral Sciences & the Law · doi:10.1002/bsl.1014 · Cited by 39
“For example, several studies have examined the impact of various mental disorders on comprehension (Carpenter et al., 2000; Appelbaum et al., 1999; Casarett, Karlawish, & Hirschman, 2003; Kim et al., 2001; Kovnick et al., 2003; Moser et al., 2002), whereas others (Dunn et al.”
BackgroundAssessing the Decision-Making Capacity of Terminally Ill Patients with Cancer
Kolva, E., Rosenfeld, B. D., & Saracino, R. M. (2017) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2017.11.012 · Cited by 39
“This method of identifying levels of decisional capacity has been used in previous studies of the decision-making capacity (7, 24, 25), where cut-scores for identifying impairment have not been established.”
MethodMental capacity and consent to treatment in psychiatric patients: the state of the research
Candia, P. C., & Barba, A. C. (2011) · Current Opinion in Psychiatry · doi:10.1097/yco.0b013e328349bba5 · Cited by 38
Alternative Decision-Makers' Perspectives on Assent and Dissent for Dementia Research
Overton, E. E., Appelbaum, P. S., Fisher, S. R., Dohan, D. P., Roberts, L. W., & Dunn, L. B. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2013.01.027 · Cited by 38
Deliberative assessment of surrogate consent in dementia research
Kim, S. Y. H., Uhlmann, R. A., Appelbaum, P. S., Knopman, D. S., Kim, H. M., Damschroder, L. J., Beattie, E., Struble, L. M., & Vries, R. G. D. (2010) · Alzheimer s & Dementia · doi:10.1016/j.jalz.2009.06.001 · Cited by 38
“Although some persons with mild AD may be able to provide consent, the disease leads to early decisional incapacity [5,6], and surrogate consent for research is usually necessary.”
BackgroundSelf-citationDecisional Capacity of Depressed Elderly to Consent to Electroconvulsive Therapy
Lapid, M. I., Rummans, T. A., Pankratz, V. S., & Appelbaum, P. S. (2004) · Journal of Geriatric Psychiatry and Neurology · doi:10.1177/0891988703261996 · Cited by 38
La capacidad de los pacientes para tomar decisiones: una tarea todavía pendiente
Simón-Lorda, P. (2008) · Revista de la Asociación Española de Neuropsiquiatría · doi:10.4321/s0211-57352008000200006 · Cited by 39
Evaluation of the Capacity to Appoint a Healthcare Proxy
Moye, J. A., Sabatino, C. P., & Brendel, R. W. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.09.001 · Cited by 37
Declining medical decision‐making capacity in mild AD: a two‐year longitudinal study
Huthwaite, J. S., Martin, R. C., Griffith, H. R., Anderson, B., Harrell, L. E., & Marson, D. C. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.701 · Cited by 37
The capacity to appoint a proxy and the possibility of concurrent proxy directives
Kim, S. Y. H., & Appelbaum, P. S. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.702 · Cited by 36
Self-citationCapacity to consent to research in schizophrenia: the expanding evidence base
Dunn, L. B. (2006) · Behavioral Sciences & the Law · doi:10.1002/bsl.698 · Cited by 36
Decision‐making capacity in elderly, terminally ill patients with cancer
Sorger, B., Rosenfeld, B. D., Pessin, H., Kosinski, A., & Cimino, J. E. (2007) · Behavioral Sciences & the Law · doi:10.1002/bsl.764 · Cited by 35
Meulenbroek, O., Vernooij-Dassen, M. J. F. J., Kessels, R. P. C., Graff, M. J. L., Sjögren, M. J. C., Schalk, B. W. M., Hoogsteen-Ossewaarde, M. E., Claassen, J. A. H. R., Melis, R. J. F., & Rikkert, M. G. M. O. (2010) · European Geriatric Medicine · doi:10.1016/j.eurger.2010.01.009 · Cited by 35
“The best validated instrument currently available is the MacArthur Competency Assessment instrument, which is available both for research aims and for clinical practice [18].”
MethodEffect of public deliberation on attitudes toward surrogate consent for dementia research
Kim, S. Y. H., Kim, H. M., Knopman, D. S., Vries, R. G. D., Damschroder, L. J., & Appelbaum, P. S. (2011) · Neurology · doi:10.1212/wnl.0b013e31823648cb · Cited by 33
“Are you Hispanic or Latino/Latina? Yes 1 (1) 1 (1) 1 (1) 0.”
Self-citationPublic's Approach to Surrogate Consent for Dementia Research: Cautious Pragmatism
Vries, R. G. D., Ryan, K. A., Stanczyk, A., Appelbaum, P. S., Damschroder, L. J., Knopman, D. S., & Kim, S. Y. H. (2013) · American Journal of Geriatric Psychiatry · doi:10.1016/j.jagp.2012.11.010 · Cited by 33
“substantial cognitive impairment who lack the ability to provide informed consent.(1,2) The dilemma is magnified when the research is invasive and burdensome, with unpredictable risks.”
Self-citationViaña, J. N. M., Vickers, J. C., Cook, M. J., & Gilbert, F. (2017) · Neurobiology of Aging · doi:10.1016/j.neurobiolaging.2017.03.001 · Cited by 33
“, 2013), and as such, participants could already have impaired decision-making capacity (Kim et al., 2001) that could compromise their ability to provide fully informed consent.”
CLINICIAN BELIEFS AND PRACTICES IN DEMENTIA CARE: IMPLICATIONS FOR HEALTH EDUCATORS
Meuser, T. M., Boise, L., & Morris, J. C. (2004) · Educational Gerontology · doi:10.1080/03601270490445104 · Cited by 33
“Studies using legal and other informed consent standards have found that there is a significant decline in the ability to fully appreciate the implications of medical decisions between the mild and moderate stages of AD ( Kim, Caine, Currier, Leibovici & Ryan, 2001 ; Marson, 2001 ).”
BackgroundCapacity to make medical treatment decisions in multiple sclerosis: A potentially remediable deficit
Basso, M. R., Candilis, P. J., Johnson, J., Ghormley, C. O., Combs, D. R., & Ward, T. A. (2010) · Journal of Clinical and Experimental Neuropsychology · doi:10.1080/13803391003683062 · Cited by 32
“Based on research involving other patient populations (e.g., Appelbaum & Grisso, 1995; Combs et al., 2005; Howe et al., 2005; Kim et al., 2001; Dymek et al., 2001), we hypothesized that neuropsychologically compromised patients with MS would display poorer understanding of treatment options than either an unimpaired g…”
BackgroundGupta, U. C., & Kharawala, S. (2012) · Perspectives in Clinical Research · doi:10.4103/2229-3485.92301 · Cited by 32
“[42-45] Researchers have also attempted categorical judgment regarding competence, that is, capable or incapable, by comparing two methods.[46]”
BackgroundJeste, D. V., Dunn, L. B., Palmer, B. W., Saks, E. R., Halpain, M. C., Cook, A., Appelbaum, P. S., & Schneiderman, L. J. (2003) · Psychopharmacology · doi:10.1007/s00213-003-1507-x · Cited by 32
“This work is already underway, for example, in patients with Alzheimer disease (Marson et al. 2000; Kim et al. 2001).”
BackgroundBeattie, E. (2009) · Research in Gerontological Nursing · doi:10.3928/19404921-20090401-01 · Cited by 31
Black, B. S., Brandt, J., Rabins, P. V., Samus, Q. M., Steele, C. D., Lyketsos, C. G., & Rosenblatt, A. (2007) · American Journal of Geriatric Psychiatry · doi:10.1097/jgp.0b013e318157cabd · Cited by 31
Metadata
- Authors
- Kim, S. Y. H., Caine, E. D., Currier, G. W., Leibovici, A., & Ryan, J. M.
- Affiliations
- University of Rochester Medicine (US)
- Venue
- American Journal of Psychiatry
- Published
- 2001-05-01
- Volume
- 158
- Issue
- 5
- Pages
- 712-717
- ISSN
- 0002-953X (ISSN-L)
- 1535-7228
- OpenAlex
- W1982530475
- Cited by
- 255
- References
- 20
- Citations by year
- 2026: 4 · 2025: 3 · 2024: 1 · 2023: 4 · 2022: 4 · 2021: 6 · 2020: 6 · 2019: 7 · 2018: 8 · 2017: 11 · 2016: 12 · 2015: 10 · 2014: 8 · 2013: 24 · 2012: 8
- FWCI
- 17.76
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- American Journal of Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institute of Mental Health (MH18911, T32MH018911)
- Topics
- Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- Alzheimer's disease, informed consent, research participation, decision-making capacity, neuropsychiatric disorders, expert opinion, decision-making impairment
- MeSH terms
- Aged, Alzheimer Disease, Clinical Trials as Topic, Female, Forensic Psychiatry, Humans, Informed Consent, Male, Psychiatric Status Rating Scales, Psychometrics, Research Design, ROC Curve, Sensitivity and Specificity, Severity of Illness Index, Geriatric Assessment, Mental Competency, Patient Selection
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