Reasons for participating in randomised controlled trials: Conditional altruism and considerations for self

Trials

Volumn 11, Issue , 2010, Pages

  McCann, Sharon K ^a   Campbell, Marion K ^a   Entwistle, Vikki A ^b  

^a UNIVERSITY OF ABERDEEN   (United Kingdom)

^b UNIVERSITY OF DUNDEE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

PROTON PUMP INHIBITOR;

ADULT; ALTRUISM; ANTIREFLUX OPERATION; ARTICLE; CLINICAL ARTICLE; CLINICAL TRIAL; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; FEMALE; GASTROESOPHAGEAL REFLUX; HEALTH CARE ACCESS; HEALTH CARE DELIVERY; HUMAN; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; INTERVIEW; MALE; MEDICAL EDUCATION; MEDICAL RESEARCH; MOTIVATION; MULTICENTER STUDY; NON PARTICIPANT OBSERVATION; PATIENT ATTITUDE; PATIENT DECISION MAKING; PATIENT MONITORING; PATIENT PARTICIPATION; RANDOMIZED CONTROLLED TRIAL; SOCIAL BEHAVIOR; UNITED KINGDOM; ATTITUDE TO HEALTH; DECISION MAKING; METHODOLOGY; MIDDLE AGED; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; QUESTIONNAIRE; RESEARCH SUBJECT; SELF CONCEPT;

ADULT; ALTRUISM; DECISION MAKING; FEMALE; GASTROESOPHAGEAL REFLUX; GREAT BRITAIN; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; MIDDLE AGED; MOTIVATION; MULTICENTER STUDIES AS TOPIC; QUALITATIVE RESEARCH; QUESTIONNAIRES; RANDOMIZED CONTROLLED TRIALS AS TOPIC; RESEARCH DESIGN; RESEARCH SUBJECTS; SELF CONCEPT; YOUNG ADULT;

EID: 77951179710     PISSN: 17456215     EISSN: 17456215     Source Type: Journal    
DOI: 10.1186/1745-6215-11-31     Document Type: Article

References (49)

1. Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott R. "Barriers to participation in randomised controlled trials: A systematic review". Journal of clinical epidemiology 1999, 52:1143-1156. 10.1016/S0895-4356(99)00141-9, 10580777.
2. Jenkins VA, Fallowfield LJ, Souhami A, Sawtell M. How do doctors explain randomised clinical trials to their patients?". European Journal of Cancer 1999, 35:1187-1193. 10.1016/S0959-8049(99)00116-1, 10615228.
3. Hussain-Gambles M. "South Asian patients' views and experiences of clinical trial participation". Family Practice 2004, 21:636-642. 10.1093/fampra/cmh611, 15528290.
4. McDonald AE, Knight RC, Campbell MK, Entwistle VA, Grant AM, Cook JA. "What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies". Trials 2006, 7:9. (7 April)., 10.1186/1745-6215-7-9, 1475627, 16603070.
5. Featherstone K, Donovan JL. "Why don't they just tell me straight, why allocate it?" The struggle to make sense of participating in a randomised controlled trial". Social Science & Medicine 2002, 55:709-719.
6. Stone D, Kerr C, Jacobson E, Conboy L, Kaptchuk T. "Patient expectations in placebo-controlled randomized clinical trials". Journal of Evaluation in Clinical Practice 2005, 11:77-84. 10.1111/j.1365-2753.2004.00512.x, 15660541.
7. Lawton J, Fox A, Fox C, Kinmonth A. "Participating in the United Kingdom Prospective Diabetes Study (UKPDS): a qualitative study of patients' experiences". British Journal of General Practice 2003, 53:394-398. 1314601, 12830569.
8. Jenkins V, Fallowfield L. "Reasons for accepting or declining to participate in randomized clinical trials for cancer therapy". British Journal of Cancer 2000, 82:1783-1788. 10.1054/bjoc.2000.1142, 2363224, 10839291.
9. Glogowska M, Roulstone S, Enderby P, Peters T, Campbell R. "Who's afraid of the randomised controlled trial? Parents' views of an SLT research study". International Journal of Language & Communication Disorders 2001, 36:499-504.
10. Donovan JL, Brindle L, Mills N. "Capturing users' experiences of participating in cancer trials". European Journal of Cancer Care 2002, 11:210-214. 10.1046/j.1365-2354.2002.00341.x, 12296840.
11. Madsen SM, Holm S, Davidsen B, Munkholm P, Schlichting P, Riis P. "Ethical aspects of clinical trials: the attitudes of participants in two non-cancer trials". Journal of Internal Medicine 2000, 248:463-474. 10.1046/j.1365-2796.2000.00755.x, 11155139.
12. Mueller MR. "Clinical, Technical, and Social Contingencies and the Decisions of Adults with HIV/AIDS to enroll in Clinical Trials". Qualitative Health Research 2004, 14:704-713. 10.1177/1049732304263627, 15107172.
13. Canvin K, Jacoby A. "Duty, desire or indifference? A qualitative study of patient decisions about recruitment to an epilepsy treatment trial". Trials 2006, 7:32. 10.1186/1745-6215-7-32, 1770934, 17163988.
14. Edwards SJ, Lilford RJ, Hewison J. "The ethics of randomised controlled trials from the perspectives of patients, the public, and healthcare professionals". British Medical Journal 1998, 317:1209-1212. 1114158, 9794861.
15. Ellis PM. "Attitudes towards and participation in randomised clinical trials in oncology: a review of the literature". Annals of Oncology 2000, 11:939-945. 10.1023/A:1008342222205, 11038029.
16. Garcea G, Lloyd T, Steward WP, Dennison AR, Berry DP. "Differences in attitudes between patients with primary colorectal cancer and patients with secondary colorectal cancer: is it reflected in their willingness to participate in drug trials?". European Journal of Cancer Care 2005, 14:166-170. 10.1111/j.1365-2354.2005.00535.x, 15842466.
17. Townsley CA, Selby R, Sui L. "Systematic review of barriers to the recruitment of older patients with cancer onto clinical trials". Journal of Clinical Oncology 2005, 23:3112-3124. 10.1200/JCO.2005.00.141, 15860871.
18. Appelbaum PS, Roth L, Lidz CW, Benson P, Winslade W. False hopes and best data: consent to research and the therapeutic misconception. Hastings Centre Report 1987, 17(2):20-24.
19. Mills N, Donovan J, Smith M, Jacoby A, Neal D, Hamdy F. Perceptions of equipoise are crucial to trial participation: a qualitative study of men in the ProtecT study. Controlled Clinical Trials 2003, 24:272-282. 10.1016/S0197-2456(03)00020-5, 12757993.
20. Snowdon C, Garcia J, Elbourne D. Making sense of randomisation; responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Social Science and Medicine 1997, 45(9):1337-1355. 10.1016/S0277-9536(97)00063-4, 9351153.
21. Snowdon C, Elbourne D, Garcia J. Zelen randomisation: attitudes of parents participating in a neonatal clinical trial. Controlled Clinical Trials 1998, 20:149-171.
22. Mohanna K, Tunna K. Withholding consent to participate in clinical trials: decisions of pregnant women. British Journal of Obstetrics and Gynaecology 1999, 106(9):892-897.
23. Featherstone K, Donovan JL. Random allocation or allocation at random? Patients' perspectives of participation in a randomised controlled trial. British Medical Journal 1998, 317:1177-1180. 28698, 9794849.
24. Dougherty CM, Nichol WP, Dewhurst TA, Spertus JA. Patient perspectives on participation in a clinical trial of anginamanagement. Applied Nursing Research 1999, 12(2):107-111. 10.1016/S0897-1897(99)80392-9, 10319526.
25. Donovan J, Brindle L, Mills N. Capturing users experiences of participating in cancer trials. European Journal of Cancer Care 2002, 11:210-14. 10.1046/j.1365-2354.2002.00341.x, 12296840.
26. Gammelgaard A, Rossel P, Mortensen OS, . in collaboration with the DANAMI-2 investigators Patients' perceptions of informed consent in acute myocardial infarction research: a Danish study. Social Science and Medicine 2004, 58:2313-2324. 10.1016/j.socscimed.2003.08.023, 15047087, in collaboration with the DANAMI-2 investigators.
27. Schaefer KM, Ladd E, Gergits MA, Gyauch L. "Backing and forthing: the process of decision making by women considering participation in a breast cancer prevention trial". Oncology Nursing Forum 2001, 28:703-709.
28. Madsen SM, Holm S, Riis P. "Ethical aspects of clinical trials: the attitudes of the public and out-patients". Journal of Internal Medicine 1999, 245:571-579. 10.1046/j.1365-2796.1999.00502.x, 10395186.
29. Grant A, Wileman S, Ramsay C, Bojke L, Epstein D, Sculpher M, Macran S, Kilonzo M, Vale L, Francis J, Mowat A, Krukowski Z, Heading R, Thursz M, Russell I, Campbell M, . REFLUX Trial Group "The effectiveness and cost-effectiveness of minimal access surgery amongst people with gastro-oesophageal reflux disease - a UK collaborative study. The REFLUX trial. Health Technology Assessment 2008, 12(31). REFLUX Trial Group.
30. Kay L, Jorgensen T, Jensen KH. "Epidemiology of abdominal symptoms in a random population: prevalence, incidence, and natural history". European Journal of Epidemiology 1994, 10:559-566. 10.1007/BF01719573, 7859855.
31. Isolauri J, Laippala P. "Prevalance of symptoms suggestive of gastro-oesophageal reflux disease in an adult population". Annals of Medicine 1995, 27:67-70. 10.3109/07853899509031939, 7742002.
32. Locke GR, Talley NJ, Fett SL, Zinsmeister AR, Melton LJ. "Prevalence and clinical spectrum of gastrosophageal reflux: a population-based study in Olmsted County, Minnesota". Gastroenterology 1997, 112:1448-14456. 10.1016/S0016-5085(97)70025-8, 9136821.
33. Colwell HH, Mathias SD, Pasta DJ, Henning JM, Hunt RH. " Development of a health-related quality-of-life questionnaire for individuals with gastroesophageal reflux disease". Digestive Diseases and Sciences 1999, 44:1376-1383. 10.1023/A:1026647701477, 10489923.
34. Trimble KC, Douglas S, Pryde A, Heading RC. "Clinical characteristics and natural history of symptomatic but not excess gastroesophageal reflux". Digestive Diseases & Sciences 1995, 40:1098-1104.
35. Dent J, Jones R, Kahrilas P, Talley J. "Management of gastro-oesophageal reflux disease in general practice". British Medical Journal 2001, 322:344-347. 10.1136/bmj.322.7282.344, 1119578, 11159660.
36. Leufkens H, Claessens A, Heerdink E, van Eijk J, Lamers CB. "A prospective follow-up study of 5669 users of lansoprazole in daily practice". Alimentary Pharmacology & Therapeutics 1997, 11:887-897.
37. Bais JE, Bartelsman J, Bonjer H, Cuesta MA, Go PM, Klinkenberg-Knol EC, van Lanschot JJ, Nadorp JH, Smout AJ, Graaf Y, Gooszen HG. "Laparoscopic or conventional Nissen fundoplication for gastro-oesophageal reflux disease: randomised controlled trial". The Lancet 2000, 355:170-174.
38. Brewin CR, Bradley C. "Patient preferences and randomised clinical trials". British Medical Journal 1989, 298:313-315.
39. Cookson R, Flood C, Koo B, Mahon D, Rhodes M. "Short-term effectiveness and long-term cost analysis comparing laparoscopic Nissen fundoplication with proton-pump inhibitor maintenance for gastro-oesophageal reflux disease". British Journal of Surgery 2005, 92:700-706. 10.1002/bjs.4933, 15852426.
40. Strauss A, Corbin J. Basics of Qualitative Research: Techniques and procedures for developing grounded theory 1998, SAGE publications; Thousand Oaks; California, 2.
41. Pope C, Ziebland S, Mays N. Qualitative research in health care: Analysing qualitative data. BMJ 2000, 320:114-116. 10.1136/bmj.320.7227.114, 1117368, 10625273.
42. Trivers R. "The evolution of reciprocal altruism". Quarterly Review of Biology 1971, 46:35-57.
43. Rapport FL, Maggs CJ. "Titmuss and the gift relationship: altruism revisited". Journal of Advanced Nursing 2002, 40:495-503. 10.1046/j.1365-2648.2002.02406.x, 12437598.
44. Edwards S, Braunholtz D. "Can unequal be more fair? A response to Andrew Avins". Journal of Medical Ethics 2000, 26:179-182. 10.1136/jme.26.3.179, 1733212, 10860209.
45. Williams B, Entwistle V, Haddow G, Wells M. "Promoting research participation: why not advertise altruism?". Social Science & Medicine 2008, 66:1451-1456.
46. Entwistle VA, Watt IS, Davis H, Dickson R, Pickard D, Rosser J. Developing information materials to present the findings of technology assessments to consumers: the experience of the NHS Centre for Reviews and Dissemination. International Journal of Technology Assessment in Health Care 1998, 14:47-70. 10.1017/S0266462300010527, 9509795.
47. Juraskova I, Butow P, Lopez A, Seccombe M, Coates A, Boyle F, McCarthy N, Reaby L, Forbes JF. "Improving informed consent: pilot of a decision aid for women invited to participate in a breast cancer prevention trial (IBIS-II DCIS). Health Expectations 2008, 11:252-262. 10.1111/j.1369-7625.2008.00498.x, 18816321.
48. Entwistle V. "Supporting participation in clinical research: decision aids for trial recruitment?". Health Expectations 2008, 11:205-207. 10.1111/j.1369-7625.2008.00519.x, 18816317.
49. Wade J, Donovan JL, Lane A, Neal DE, Hamdy FC. It's not just what you say, it's also how you say it: opening the 'black box' of informed consent appointments in randomised controlled trials. Social Science and Medicine 2009, 68:2018-2028. 10.1016/j.socscimed.2009.02.023, 19364625.