A new measure of research participant burden: Brief report

Journal of Empirical Research on Human Research Ethics

Volumn 9, Issue 4, 2014, Pages 46-49

  Lingler, Jennifer H ^a   Schmidt, Karen L ^a   Gentry, Amanda L ^a   Hu, Lu ^a   Terhorst, Lauren A ^a  

^a UNIVERSITY OF PITTSBURGH   (United States)

Author keywords

Human subjects; Measurement; Recruitment; Research burden

Indexed keywords

AGED; ATTITUDE; EVALUATION STUDY; FEMALE; HUMAN; MALE; MIDDLE AGED; PSYCHOMETRY; QUESTIONNAIRE; REPRODUCIBILITY; RESEARCH; RESEARCH SUBJECT; RISK; VALIDATION STUDY; VERY ELDERLY;

AGED; AGED, 80 AND OVER; ATTITUDE; FEMALE; HUMANS; MALE; MIDDLE AGED; PSYCHOMETRICS; REPRODUCIBILITY OF RESULTS; RESEARCH; RESEARCH SUBJECTS; RISK; SURVEYS AND QUESTIONNAIRES;

EID: 84928008628     PISSN: 15562646     EISSN: 15562654     Source Type: Journal    
DOI: 10.1177/1556264614545037     Document Type: Article

References (18)

1. Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum.
2. Cohen, S., & Hoberman, H. M. (1983). Positive events and social supports as buffers of life change stress. Journal of Applied Social Psychology, 13, 99-125.
3. Cox, K., & McGarry, J. (2003). Why patients don't take part in cancer clinical trials: An overview of the literature. European Journal of Cancer Care, 12, 114-122.
4. Demi, A. S., & Warren, N. A. (1995). Issues in conducting research with vulnerable families. Western Journal of Nursing Research, 17, 188-202.
5. Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). "Minimental state": A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.
6. Jeste, D. V., Palmer, B. W., Appelbaum, P. S., Golshan, S., Glorioso, D., Dunn, L. B., , .Kraemer, H. C. (2007). A new brief instrument for assessing decisional capacity for clinical research. Archives of General Psychiatry, 64, 966-974.
7. Lingler, J. H., Parker, L. S., DeKosky, S. T., & Schulz, R. (2006). Caregivers as subjects of clinical drug trials: A review of human subjects protection practices in published studies of Alzheimer disease pharmacotherapies. IRB: Ethics & Human Research, 28(3), 11-18.
8. Lopez, O. L., Becker, J. T., Klunk, W. E., Saxton, J., Hamilton, R., Kaufer, D. I., , .DeKosky, S. T. (2000). Research evaluation and diagnosis of probable Alzheimer's disease over the last 2 decades: I. Neurology, 55, 1854-1862.
9. Lopez, O. L., Jagust, W. J., DeKosky, S. T., Becker, J. T., Fitzpatrick, A., Dulberg, C., , .Kuller, L. H. (2003). Prevalence and classification of mild cognitive impairment in the Cardiovascular Health Study Cognition Study: Part 1. Archives of Neurology, 60, 1385-1389.
10. Marcantonio, E. R., Aneja, J., Jones, R. N., Alsop, D. C., Fong, T. G., Crosby, G. J., , .Inouye, S. K. (2008). Maximizing clinical research participation in vulnerable older persons: Identification of barriers and motivators. Journal of the American Geriatrics Society, 56, 1522-1527.
11. McKhann, G., Drachman, D., Folstein, M., Katzman, R., Price, D., & Stadlan, E. M. (1984). 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. Neurology, 34, 939-944.
12. Neumark, D. E., Stommel, M., Given, C. W., & Given, B. A. (2001). Research design and subject characteristics predicting nonparticipation in a panel survey of older families with cancer. Nursing Research, 50, 363-368.
13. Nunnally, J. C., & Bernstein, I. H. (1994). Psychometric theory. New York, NY: McGraw-Hill.
14. Petersen, R. C., Doody, R., Kurz, A., Mohs, R. C., Morris, J. C., Rabins, P. V., , .Winblad, B. (2001). Current concepts in mild cognitive impairment. Archives of Neurology, 58, 1985-1992.
15. Reynolds, T. (2011). Clinical trials: Can technology solve the problem of low recruitment? British Medical Journal, 342, Article d3662.
16. Sachs, G. A., Stocking, C. B., Stern, R., Cox, D. M., Hougham, G., & Sachs, R. S. (1994). Ethical aspects of dementia research: Informed consent and proxy consent. Clinical Research, 42, 403-412.
17. Ulrich, C. M., Knafl, K. A., Ratcliffe, S. J., Richmond, T. S., Grady, C., Miller-Davis, C., & Wallen, G. R. (2012). Developing a model of the benefits and burdens of research participation in cancer clinical trials. AJOB Primary Research, 3(2), 10-23.
18. Ulrich, C. M., Wallen, G. R., Feister, A., & Grady, C. (2005). Respondent burden in clinical research: When are we asking too much of subjects? IRB: Ethics & Human Research, 27(4), 17-20.