Determining when impairment constitutes incapacity for informed consent in schizophrenia research
Open accessAbstract
Background: Although people with schizophrenia display impaired abilities for consent, it is not known how much impairment constitutes incapacity. Aims: To assess a method for determining the categorical capacity status of potential participants in schizophrenia research. Method: Expert-judgement validation of capacity thresholds on the sub-scales of the MacArthur Competence Assessment Tool – Clinical Research (MacCAT–CR) was evaluated using receiver operating characteristic (ROC) analysis in 91 people with severe mental illness and 40 controls. Results: The ROC areas under the curve for the understanding, appreciation and reasoning sub-scales of the MacCAT–CR were 0.94 (95% CI 0.88–0.99), 0.85 (95% CI 0.76–0.94) and 0.80 (95% CI 0.70–0.90). These findings yielded negative and positive predictive values of incapacity that can guide the practice of investigators and research ethics committees. Conclusions: By performing such validation studies for a few categories of research with varying risks and benefits, it might be possible to create evidence-based capacity determination guidelines for most schizophrenia research.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Previous research demonstrated that the MacCAT scales provide the best results.
“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 [30]
The “Predictive values of MacCAT-CR scores” section (page not provided) reports that MacCAT-CR subscales predicted capacity status, with understanding performing best among the subscales. It does not compare the MacCAT scales with other instruments or establish that they provide the best results overall. (LLM, conf=0.82)
Experimental — accuracy not yet measuredIn adults, systematic studies using MacCAT-CR were conducted in populations of mentally compromised patients.
“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 [30]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
The Positive and Negative Syndrome Scale (PANSS) for schizophrenia.
Kay, S. R., Fiszbein, A., & Opler, L. A. (1987) · Schizophrenia Bulletin · doi:10.1093/schbul/13.2.261 · Cited by 21,378 · see citing works
Statistical Methods in Diagnostic Medicine
Zhou, X., Sun, J., Pennello, G. A., Obuchowski, N. A., & McClish, D. K. (2011) · Wiley series in probability and statistics · doi:10.1002/9780470906514 · Cited by 1,785 · see citing works
Statistical Methods in Diagnostic Medicine
Zhou, X., Obuchowski, N. A., & McClish, D. K. (2002) · Wiley series in probability and statistics · doi:10.1002/9780470317082 · Cited by 1,181 · see citing works
Assessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Prefessionals
Grisso, T., & Appelbaum, P. S. (1998) · doi:10.1093/oso/9780195103724.001.0001 · Cited by 823 · see citing works
Self-citationThe MacCAT-T: a clinical tool to assess patients' capacities to make treatment decisions
(1997) · Psychiatric Services · doi:10.1176/ps.48.11.1415 · Cited by 704 · see citing works
Self-citationStroup, T., Mcevoy, J., Swartz, M., Byerly, M., Glick, I., Cañive, J., McGee, M., Simpson, G., Stevens, M., & Lieberman, J. (2003) · Schizophrenia bulletin · doi:10.1093/oxfordjournals.schbul.a006986 · Cited by 647 · see citing works
Self-citationGrisso, T., & Appelbaum, P. S. (1995) · Law and Human Behavior · doi:10.1007/bf01499323 · Cited by 595 · see citing works
Self-citationAssessing Competence to Consent to Treatment: A Guide for Physicians and Other Health Professionals
Grisso, T., & Appelbaum, P. S. (1998) · DigitalGeorgetown (Georgetown University Library) · Cited by 572 · see citing works
Self-citationDecisional Capacity for Informed Consent in Schizophrenia Research
Carpenter, W. T. (2000) · Archives of General Psychiatry · doi:10.1001/archpsyc.57.6.533 · Cited by 506 · see citing works
National Bioethics Advisory Commission
Plattner, S. M. (2001) · Anthropology News · doi:10.1111/an.2001.42.3.24 · Cited by 475 · see citing works
Universal Declaration on Bioethics and Human Rights
Educational, S. A. C. O. U. N. (2006) · Jahrbuch für Wissenschaft und Ethik · doi:10.1515/9783110186406.377 · Cited by 468 · see citing works
Marson, D. C. (1995) · Archives of Neurology · doi:10.1001/archneur.1995.00540340029010 · Cited by 347 · see citing works
Competence of Depressed Patients for Consent to Research
Appelbaum, P. S., Grisso, T., Frank, E., O’Donnell, S., & Kupfer, D. J. (1999) · American Journal of Psychiatry · doi:10.1176/ajp.156.9.1380 · Cited by 279 · see citing works
Self-citationMacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR)
Kreutzer, J. S., DeLuca, J., & Caplan, B. (2010) · Springer eBooks · doi:10.1007/978-0-387-79948-3_4894 · Cited by 271 · see citing works
Kim, S. Y. H., Caine, E. D., Currier, G. W., Leibovici, A., & Ryan, J. M. (2001) · American Journal of Psychiatry · doi:10.1176/appi.ajp.158.5.712 · Cited by 255 · see citing works
Self-citationComparison of standards for assessing patients' capacities to make treatment decisions
Grisso, T., & Appelbaum, P. S. (1995) · American Journal of Psychiatry · doi:10.1176/ajp.152.7.1033 · Cited by 250 · see citing works
Self-citationInformed Consent: Assessment of Comprehension
Wirshing, D. A., Wirshing, W. C., Marder, S. R., Liberman, R. P., & Mintz, J. (1998) · American Journal of Psychiatry · doi:10.1176/ajp.155.11.1508 · Cited by 205 · see citing works
Capacity to Provide Informed Consent for Participation in Schizophrenia and HIV Research
Moser, D. J., Schultz, S. K., Arndt, S. V., Benjamin, M. L., Fleming, F. W., Brems, C. S., Paulsen, J. S., Appelbaum, P. S., & Andreasen, N. C. (2002) · American Journal of Psychiatry · doi:10.1176/appi.ajp.159.7.1201 · Cited by 196 · see citing works
Self-citationPrevalence and predictors of mental incapacity in psychiatric in-patients
Cairns, R., Maddock, C., Buchanan, A. W., David, A. S., Hayward, P., Richardson, G., SZMUKLER, G. I., & Hotopf, M. H. (2005) · The British Journal of Psychiatry · doi:10.1192/bjp.187.4.379 · Cited by 165 · see citing works
Palmer, B. W., Dunn, L. B., Appelbaum, P. S., & Jeste, D. V. (2004) · Archives of General Psychiatry · doi:10.1001/archpsyc.61.3.230 · Cited by 141 · see citing works
Self-citationReliability of mental capacity assessments in psychiatric in-patients
Cairns, R., Maddock, C., Buchanan, A., David, A. S., Hayward, P., Richardson, G., Szmukler, G., & Hotopf, M. (2005) · British Journal of Psychiatry · doi:10.1192/bjp.187.4.372 · Cited by 135 · see citing works
Dunn, L. B., Lindamer, L. A., Palmer, B. W., Golshan, S., Schneiderman, L. J., & Jeste, D. V. (2002) · American Journal of Geriatric Psychiatry · doi:10.1097/00019442-200203000-00005 · Cited by 121 · see citing works
Self-citationProxy 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 · see citing works
Self-citationStroup, T. S., Appelbaum, P. S., Swartz, M. S., Patel, M. K. P. M. K., Thomas, S., Jeste, D. V., Kim, S. Y. H., Keefe, R. S. E., Manschreck, T. C., McEvoy, J. M., et al. (2005) · Schizophrenia Research · doi:10.1016/j.schres.2005.08.007 · Cited by 91 · see citing works
Self-citationCompetence 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 · see citing works
Self-citationAssessment of Mental Competency in Community-Dwelling Elderly
Schmand, B. A., Gouwenberg, B. M., Smit, J. H., & Jonker, C. (1999) · Alzheimer Disease & Associated Disorders · doi:10.1097/00002093-199904000-00004 · Cited by 77 · see citing works
Clinical trials for antipsychotic drugs: design conventions, dilemmas and innovations
Stroup, T. S., Alves, W. M., Hamer, R. M., & Lieberman, J. A. (2006) · Nature Reviews Drug Discovery · doi:10.1038/nrd1956 · Cited by 58 · see citing works
Self-citationKim, S. Y. H. (2005) · Schizophrenia Bulletin · doi:10.1093/schbul/sbi062 · Cited by 53 · see citing works
Self-citationDECISIONMAKING COMPETENCE AND RISK
Brock, D. W. (1991) · Bioethics · doi:10.1111/j.1467-8519.1991.tb00151.x · Cited by 43 · see citing works
Stroup, T. S., & Appelbaum, P. S. (2003) · IRB Ethics and Human Research · doi:10.2307/3564299 · Cited by 28 · see citing works
Self-citationValues and limits of the MacArthur Treatment Competence Study.
Grisso, T., & Appelbaum, P. S. (1996) · Psychology Public Policy and Law · doi:10.1037//1076-8971.2.1.167 · Cited by 22 · see citing works
Self-citationValues and limits of the MacArthur Treatment Competence Study.
Grisso, T., & Appelbaum, P. S. (1996) · Psychology Public Policy and Law · doi:10.1037/1076-8971.2.1.167 · Cited by 16 · see citing works
Self-citationResearch Oversight through New Lenses: The Consortium to Examine Clinical Research Ethics
Sugarman, J., Eckenwiler, L. A., & Emanuel, E. J. (2003) · IRB Ethics and Human Research · doi:10.2307/3564407 · Cited by 6 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Assessment of Patients' Competence to Consent to Treatment
Appelbaum, P. S. (2007) · New England Journal of Medicine · doi:10.1056/nejmcp074045 · Cited by 1,427 · see citing works
Self-citationWhy 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 · see citing works
“In adults, systematic studies using MacCAT-CR were conducted in populations of mentally compromised patients [29,30].”
BackgroundDepression and decision-making capacity for treatment or research: a systematic review
Hindmarch, T., Hotopf, M., & Owen, G. S. (2013) · BMC Medical Ethics · doi:10.1186/1472-6939-14-54 · Cited by 178 · see citing works
Wang, S.-B., Wang, Y.-Y., Ungvari, G. S., Ng, C. H., Wu, R.-R., Wang, J., & Xiang, Y.-T. (2017) · Schizophrenia Research · doi:10.1016/j.schres.2016.11.020 · Cited by 38 · see citing works
Koelch, M., Prestel, A., Singer, H., Schulze, U., & Fegert, J. M. (2010) · Journal of Child and Adolescent Psychopharmacology · doi:10.1089/cap.2008.0114 · Cited by 37 · see citing works
Mandarelli, G., Tarsitani, L., Parmigiani, G., Polselli, G. M., Frati, P., Biondi, M., & Ferracuti, S. (2014) · Journal of Forensic Sciences · doi:10.1111/1556-4029.12420 · Cited by 37 · see citing works
- Authors
- 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.
- Affiliations
- University of Michigan (US)
- Columbia University (US)
- University of Rochester Medicine (US)
- University of North Carolina at Chapel Hill (US)
- Duke University (US)
- Harvard University (US)
- University of California San Diego (US)
- University of Rochester (US)
- Corresponding author
- Kim, Scott Y. H.
- ORCID
- Venue
- British Journal of Psychiatry
- Publisher
- Royal College of Psychiatrists
- Published
- 2007-07
- Volume
- 191
- Issue
- 1
- Pages
- 38-43
- ISSN
- 0007-1250 (ISSN-L)
- 1472-1465
- OpenAlex
- W2056470410
- Cited by
- 84
- References
- 33
- Citations by year
- 2026: 1 · 2025: 3 · 2024: 3 · 2022: 1 · 2021: 6 · 2020: 3 · 2018: 3 · 2017: 6 · 2016: 8 · 2015: 7 · 2014: 3 · 2013: 10 · 2012: 4
- FWCI
- 6.09
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- The British Journal of Psychiatry (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institutes of Health (n01mh90001-21-0-0)
- National Institute of Mental Health (N01 MH90001, MH-64172, K23MH064172, MH90001)
- 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 › Psychiatry and Mental health › Schizophrenia research and treatment
- Keywords
- informed consent, decision-making capacity, schizophrenia, capacity threshold, research ethics, severe mental illness, predictive validity
- MeSH terms
- Adult, Decision Making, Female, Humans, Informed Consent, Interview, Psychological, Male, Psychometrics, Reference Standards, ROC Curve, Schizophrenia, Schizophrenic Psychology, Case-Control Studies, Mental Competency
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
