Clinical correlates of the ability to consent to research participation in brain metastasis

2020 ◽  
Vol 29 (10) ◽  
pp. 1655-1661
Author(s):  
Adam Gerstenecker ◽  
Meredith Gammon ◽  
Dario Marotta ◽  
John Fiveash ◽  
Burt Nabors ◽  
...  

2020 ◽  
Vol 7 (4) ◽  
pp. 439-445
Author(s):  
Kyler Mulhauser ◽  
Dario A Marotta ◽  
Adam Gerstenecker ◽  
Gabrielle Wilhelm ◽  
Terina Myers ◽  
...  

Abstract Background To evaluate the ability of individuals with metastatic cancer to provide informed consent to research participation, we used a structured vignette-based interview to measure 4 consenting standards across 3 participant groups. Methods Participants included 61 individuals diagnosed with brain metastasis, 41 individuals diagnosed with non-CNS metastasis, and 17 cognitively intact healthy controls. All groups were evaluated using the Capacity to Consent to Research Instrument (CCRI), a performance-based measure of research consent capacity. The ability to provide informed consent to participate in research was evaluated across 4 consent standards: expressing choice, appreciation, reasoning, and understanding. Capacity performance ratings (intact, mild/moderate impairment, severe impairment) were identified based on control group performance. Results Results revealed that the brain metastasis group performed significantly lower than healthy controls on the consent standard of understanding, while both metastatic cancer groups performed below controls on the consent standard of reasoning. Both metastatic cancer groups performed similar to controls on the standards of appreciation and expressing choice. Approximately 60% of the brain metastasis group, 54% of the non-CNS metastasis group, and 18% of healthy controls showed impaired research consent capacity. Conclusions Our findings, using a performance-based assessment, are consistent with other research indicating that the research consent process may be overly cumbersome and confusing. This, in turn, may lead to research consent impairment not only in patient groups but also in some healthy adults with intact cognitive ability.



Crisis ◽  
2010 ◽  
Vol 31 (5) ◽  
pp. 238-246 ◽  
Author(s):  
Paul W. C. Wong ◽  
Wincy S. C. Chan ◽  
Philip S. L. Beh ◽  
Fiona W. S. Yau ◽  
Paul S. F. Yip ◽  
...  

Background: Ethical issues have been raised about using the psychological autopsy approach in the study of suicide. The impact on informants of control cases who participated in case-control psychological autopsy studies has not been investigated. Aims: (1) To investigate whether informants of suicide cases recruited by two approaches (coroners’ court and public mortuaries) respond differently to the initial contact by the research team. (2) To explore the reactions, reasons for participation, and comments of both the informants of suicide and control cases to psychological autopsy interviews. (3) To investigate the impact of the interviews on informants of suicide cases about a month after the interviews. Methods: A self-report questionnaire was used for the informants of both suicide and control cases. Telephone follow-up interviews were conducted with the informants of suicide cases. Results: The majority of the informants of suicide cases, regardless of the initial route of contact, as well as the control cases were positive about being approached to take part in the study. A minority of informants of suicide and control cases found the experience of talking about their family member to be more upsetting than expected. The telephone follow-up interviews showed that none of the informants of suicide cases reported being distressed by the psychological autopsy interviews. Limitations: The acceptance rate for our original psychological autopsy study was modest. Conclusions: The findings of this study are useful for future participants and researchers in measuring the potential benefits and risks of participating in similar sensitive research. Psychological autopsy interviews may be utilized as an active engagement approach to reach out to the people bereaved by suicide, especially in places where the postvention work is underdeveloped.





2007 ◽  
Author(s):  
Ann T. Chu ◽  
Anne P. Deprince ◽  
Kristin Weinzierl


2011 ◽  
Author(s):  
Kaitlin P. Gallo ◽  
Priya Korathu-Larson ◽  
Jonathan S. Comer




2011 ◽  
Vol 38 (S 01) ◽  
Author(s):  
S Tosato ◽  
R Mazzoncini ◽  
A Lasalvia ◽  
C Bonetto ◽  
M Bertani ◽  
...  


Author(s):  
Rosa Marquez-Pardo ◽  
Lourdes Garcia-Garcia-Doncel ◽  
Baena-Nieto M Gloria ◽  
Manuel Cayon-Blanco ◽  
Rosario Lopez-Velasco ◽  
...  


Sign in / Sign up

Export Citation Format

Share Document