Subjective evaluations of research participation by persons with mental illness

Journal of Nervous and Mental Disease

Volumn 195, Issue 5, 2007, Pages 430-435

  Rosen, Cherise ^a   Grossman, Linda S ^a   Sharma, Rajiv P ^a   Bell, Carl C ^a   Mullner, Russ ^a   Dove, Henry W ^a  

^a UNIVERSITY OF ILLINOIS AT CHICAGO   (United States)

Author keywords

Patient satisfaction; Psychobiological research ethics; Research in psychiatry

Indexed keywords

ARTICLE; CONTROLLED STUDY; EVALUATION; HUMAN; MAJOR CLINICAL STUDY; MEDICAL RESEARCH; MENTAL DISEASE; METHODOLOGY; PATIENT PARTICIPATION; PATIENT SATISFACTION; QUESTIONNAIRE; SELF REPORT; STATISTICAL SIGNIFICANCE;

ADOLESCENT; ADULT; ATTITUDE TO HEALTH; CLINICAL PROTOCOLS; ETHICS, RESEARCH; FEMALE; HOSPITALIZATION; HUMANS; INFORMED CONSENT; MALE; MENTAL COMPETENCY; MENTAL DISORDERS; MIDDLE AGED; PATIENT SATISFACTION; PSYCHIATRIC STATUS RATING SCALES; QUESTIONNAIRES; RESEARCH; RESEARCH SUBJECTS; TREATMENT OUTCOME;

EID: 34248551266     PISSN: 00223018     EISSN: None     Source Type: Journal    
DOI: 10.1097/01.nmd.0000253785.81700.7d     Document Type: Article

References (46)

1. Applebaum P (2002) Involving decisionally impaired subjects in research: The need for legislation. Am J Geriatr Psychiatry. 10:120-124.
2. Appelbaum P, Roth L, Lidz C (1982) The therapeutic misconception: Informed consent in psychiatric research. Int J Law Psychiatry. 5:319-329.
3. Appelbaum P, Roth L, Lidz C, Benson P, Winslade W (1987) False hopes and best data: Consent to research and the therapeutic misconception. Hastings Cent Rep. 17:20-24.
4. Baldessarini R, Viguera A (1995) Neuroleptic withdrawal in schizophrenic patients. Arch Gen Psychiatry. 52:189-192.
5. Bell C, Williamson J (2002) Articles on special populations published in Psychiatric Services between 1950 and 1999. Psychiatr Serv. 53:419-424.
6. Ben-Arie O, Welman M, Teggin A (1990) The effect of research on readmission to a psychiatric hospital. Br J Psychiatry. 156:37-39.
7. Carey MP, Morrison-Beedy D, Carey KB, Maisto SA, Gordon CM, Pedlow CT (2001) Psychiatric outpatients report their experience as participants in a randomized clinical trial. J Nerv Ment Dis. 189:299-306.
8. Carpenter WT Jr (1997) The risk of medication-free research. Schizophr Bull. 23:11-18.
9. Carpenter WT Jr, Appelbaum P, Levine R (2003) The Declaration of Helsinki and clinical trials: A focus on placebo-controlled trials in schizophrenia. Am J Psychiatry. 160:356-362.
10. Carpenter WT Jr, Conley RR (1999) Sense and nonsense: An essay on schizophrenia research. Schizophr Res. 35:219-225.
11. Carroll RS, Miller A, Ross B, Simpson GM (1980) Research as an impetus to improved treatment. Arch Gen Psychiatry. 37:377-380.
12. Donenberg GR, Lyons JS, Howard KI (1999) Clinical trials versus mental health service research: Contributions and connections. J Clin Psychol. 55:1135-1146.
13. Dunn L, Candildi P, Weiss Roberts L (2006a) Emerging empirical evidence on the ethics of schizophrenia research. Schizophr Bull. 32:47-68.
14. Dunn L, Palmer B, Keehan M, Jeste D, Appelbaum PS (2006b) Assessment of therapeutic misconception in older schizophrenia patients with a brief instrument. Am J Psychiatry. 163:500-506.
15. Dunn L, Weiss Roberts L (2005) Emerging findings in ethics of schizophrenia research. Curr Opin Psychiatry. 18:111-119.
16. DuVal G (2004) Ethics in psychiatric research: Study design issues. Can J Psychiatry. 49:55-59.
17. Elks ML (1993) The right to participate in research studies. J Lab Clin Med. 122:130-136.
18. Emannuel E, Miller F (2001) The ethics of placebo-controlled trials - A middle ground. N Engl J Med. 345:915-919.
19. Endicott J, Spitzer RL (1978) A diagnostic interview: The schedule for affective disorders and schizophrenia. Arch Gen Psychiatry. 35:837-844.
20. Endicott J, Spitzer RL, Fleiss JL, Cohen J (1976) The global assessment scale. A procedure for measuring overall severity of psychiatric disturbance. Arch Gen Psychiatry. 33:766-771.
21. Freedman B, Glass K, Weijer C (1996a) Placebo orthodoxy in clinical research. I. Empirical and methodological myths. J Law Med Ethics. 24:243-251.
22. Freedman B, Glass K, Weijer C (1996b) Placebo orthodoxy in clinical research. II. Ethical, legal, and regulatory myths. J Law Med Ethics. 24:252-259.
23. Glass A (1995) Identifying issues important to patients on a hospital satisfaction questionnaire. Psychiatr Serv. 46:83-85.
24. Hamilton M (1960) A rating scale for depression. J Neurol Neurosurg Psychiatry. 23:56-62.
25. Kalman TP, Talon NS, Frances A, Kocsis JH (1982) A controlled study of satisfaction among psychobiology research patients. Am J Psychiatry. 139:344-347.
26. Kaminsky A, Roberts LW, Brody JL (2003) Influences upon willingness to participate in schizophrenia research: An analysis of narrative data from 63 people with schizophrenia. Ethics Behav. 13:279-302.
27. Kay S, Fiszbein A, Opler L (1987) The positive and negative syndrome scale (PANSS) for schizophrenia. Schizophr Bull. 13:261-276.
28. Kocsis J, Frances A, Kalman T, Shear K (1981) The effect of psychobiological research on treatment outcome: A controlled study. Am J Psychiatry. 38:511-515.
29. Lehrman NS, Sharav VH (1997) Ethical problems in psychiatric research. J Ment Health Adm. 24:227-250.
30. Lidz C, Appelbaum P (2002) The therapeutic misconception: Problems and solutions. Med Care. 40:55-63.
31. Marshall RD, Spitzer RL, Vaughn SC, Vaughn R, Mellman L, MacKinnon R, Roose S (2001) Assessing the subjective experience of being a participant in psychiatric research. Am J Psychiatry. 158:312-321.
32. Miller FG (2000) Placebo-controlled trials in psychiatric research: An ethical perspective. Biol Psychiatry. 47:707-716.
33. Miller FG, Brody H (2002) What makes placebo-controlled trials unethical? Am J Bioeth. 2:3-9.
34. Miller FG, Rosenstein DL, DeRenzo EG (1998) Professional integrity in clinical research. JAMA. 280:1449-1454.
35. Overall JE (1962) The brief psychiatric rating scale. Psychol Rep. 10:799-812.
36. Roberts L (1998) The ethical basis of psychiatric research: Conceptual issues and empirical findings. Compr Psychiatry. 39:99-110.
37. Rothman K, Michels K (1994) The continuing unethical use of placebo controls. N Engl J Med. 331:394-398.
38. Seelig BJ, Dobelle WH (2001) Altruism and the volunteer: Psychological benefits from participating as a research subject. ASAIO J. 47:3-5.
39. Surgeon-General (2001) Mental health: Culture, race and ethnicity: A supplement to mental health: A report of the surgeon general. US Public Health Service.
40. Weiss Roberts L, Lauriello J, Geppert C, Keith S (2001) Placebos and paradoxes in psychiatric research: An ethics perspective. Biol Psychiatry. 49:887-893.
41. Weiss Roberts L, Warner T, Brody J, Roberts B, Lauriello J, Lyketsos C (2002) Patient and psychiatrist ratings of hypothetical schizophrenia research protocols: Assessment of harm potential and factors influencing participation decisions. Am J Psychiatry. 159:573-584.
42. Weiss Roberts L, Warner T, Nguyen K, Geppart C, Robers M, Roberts B (2003) Schizophrenia patients' and psychiatrists' perspectives on ethical aspects of symptom re-emergence during psychopharmacological research participation. Psychopharmacology. 171:58-67.
43. Wyatt R (1991) Neuroleptics and the natural course of schizophrenia. Schizophr Bull. 17:325-351.
44. Wyatt R (1995) Risks of withdrawing antipsychotic medications. Arch Gen Psychiatry. 52:205-208.
45. Young R, Biggs J, Ziegler V, Meyer D (1978) A rating scale for mania: Reliability, validity and sensitivity. Br J Psychiatry. 133:429-435.
46. Zhen-Hong Q, Wang J, Ahen-Lun G (2005) Development of novel therapies for Huntington's disease: Hope and challenge. Acta Pharmacol Sin. 26:129.