Palliative cancer patients and their families on the internet: Motivation and impact

Journal of Palliative Care

Volumn 16, Issue 4, 2000, Pages 13-19

  Pereira, Jose ^a   Bruera, Eduardo ^b   Macmillan, Karen ^a   Kavanagh, Sandra ^c  

^a GREY NUNS COMMUNITY HOSPITAL   (Canada)

^b UNIVERSITY OF TEXAS   (United States)

^c NONE

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; CASE REPORT; FAMILY; FEMALE; HUMAN; INTERNET; MALE; MIDDLE AGED; NEOPLASM; NURSING; PALLIATIVE THERAPY; PSYCHOLOGICAL ASPECT; SOCIAL SUPPORT;

ADULT; FAMILY; FEMALE; HUMANS; INTERNET; MALE; MIDDLE AGED; NEOPLASMS; PALLIATIVE CARE; SOCIAL SUPPORT;

EID: 0034585313     PISSN: 08258597     EISSN: None     Source Type: Journal    
DOI: 10.1177/082585970001600403     Document Type: Article

References (77)

1. Eng TR, Maxfield A, Patrick K, Deering MJ, Ratzan SC, Gustafson DH. Access to health information and support A public highway or a private road? JAMA 1998; 280: 1371-1375.
2. Brown M. The HealthNet retrievers: profiles of consumers using online health and medical information. New York: Cyber Dialogue; 1998.
3. Pereira J, Mancini I, Walker P. The role of bisphosphonates in malignant bone pain: a review. J Palliat Care 1998; 14; 25-36
4. Buchanan J, Borland R, Cosolo W, Millership R, Haines I, Zimet A, et al. Patients' beliefs about cancer management. Support Care Cancer 1996; 4: 110-117.
5. Cassileth BR, Zupkis RV, Sutton-Smith K, March BA. Information and participation preferences among cancer patients. Ann Intern Med 1980; 92: 832-836.
6. Strull WM, Bernard LO, Charles G. Do patients want to participate in medical decision-making? JAMA 1984; 252: 2990-2994.
7. Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med 1996; 156: 1414-1420.
8. Kaplan SH, Greenfield S, Gandek B, Rogers WH, Ware JEJ. Characteristics of physicians with participatory decision-making styles. Ann Intern Med 1996; 124: 497-504.
9. Kassirer JP. The next transformation in the delivery of health care. N Engl J Med. 1995; 332: 52-54.
10. Blumenthal D. The future of quality measurement and management in a transforming health care system. JAMA 1997; 278: 1622-1625.
11. Goggins M, Lietman A, Miller RE, Yeo CJ, Jaffee E, Coleman J, et al. Use and benefits of web site for pancreatic cancer. JAMA 1998; 280: 1309-1310.
12. Grove AS. The X factor. JAMA 1998, 280: 1385.
13. Coeira E. The Internet's challenge to health care provision. Br Med J 1996; 312: 3-4.
14. Widman LE, Tong DA. Requests for medical advice from patients and families to health care providers who publish on the World Wide Web. Arch Intern Med 1997; 157: 209-212.
15. Downer SM, Cody MM, McCluskey P, Wilson PD, Arnott SJ, Lister TA, et al. Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. Br Med J 1994; 309: 86-89.
16. Begbie SP, Kerestes ZL, Bell DR. Patterns of alternative medicine use by cancer patients. Med J Aust 1996; 165: 545-548.
17. Risberg T, Lund E, Wist E, Dahl O, Sundstrom S, Andersen OK, et al. The use of non-proven therapy among patients treated in Norwegian oncological departments: a cross-sectional national multi-centre study. Eur J Cancer 1995; 31A (11): 1785-1789.
18. Oneschuk D, Fennell L, Hanson J, Bruera E. The use of complementary medications by cancer patients attending an outpatient pain and symptom clinic. J Pall Care 1998; 14: 21-26.
19. Astin JA. Why patients use alternative medicine: results of a national study. JAMA 1998; 279: 1548-1553.
20. Fisher P, Ward A. Complementary medicine in Europe. Br Med J 1994; 309: 107-111.
21. MacLennan AH, Wilson DH, Taylor AW. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347: 569-573.
22. Eisenberg DM, Davis RB, Ettner SL, Appel S, Wilkey S, Van Rompay M, et al. Trends in alternative medicine use in the United States, 1990-1997. Results of a follow-up national survey. JAMA 1998; 280: 1569-1575.
23. Bower H. Internet sees growth of unverified health claims. Br Med J 1996; 313: 381
24. Eysenbach G, Diepgen TL. Patients looking for information on the Internet and seeking teleadvice: motivations, expectations and misconceptions as expressed in e-mails sent to physicians. Arch Dermatol 1999; 135: 151-156.
25. Ernst E, Resch KL, Hill S. Do complementary practitioners have a better bedside manner than physicians? J R Soc Med 1997; 90: 33-39.
26. Holland JC. Why patients seek unproven cancer remedies: a psychological perspective. CA Cancer J Clin 1982; 32: 11-15.
27. Cassileth BR, Lusk EJ, Strouse TB, Bodenheimer BJ. Contemporary unorthodox treatments in cancer medicine: a study of patients, treatments, and practitioners. Ann Intern Med 1984; 101: 105-112.
28. Borowitz SM, Wyatt JC. The origin, content, and workload of email consultations. JAMA 1998; 280: 1321-1324.
29. Robinson TN. Community health behaviour change through computer network health promotion: preliminary findings from Stanford Health-Net. Comput Methods Programs Biomed 1989; 30: 137-144.
30. Locke SE, Kowaloff HB, Hoff RG, Safran C, Popovsky MA, Cotton DJ, et al. Computer-based interview for screening blood donors for risk of HIV transmission. JAMA 1992; 268: 1301-1305.
31. Gustafson DH, McTavish F, Hawkins R, Pingree S, Arora N, Mendenhall J, et al. Computer support for elderly woman with breast cancer. JAMA 1998; 280: 1305.
32. Ferguson T. Health Information Online: how to find health information, support groups, and self-help communities in cyberspace. Reading: Addison-Wesley Publishing Co., 1996.
33. Peters R, Sikorski R. Digital dialogue: sharing information and interests on the Internet. JAMA 1997; 277: 1256-1260.
34. Gustafson DH, Hawkins RP, Boberg EW, Bricker E, Pingree S, Chan CL The use and impact of a computer-based support system for people living with AIDS and HIV infection. Proc Annu Symp Comput Appl Med Care 1994; 604-603.
35. Weinberg N, Schmale J, Uken J, Wessel K. Online help: cancer patients participate in a computer-mediated support group. Health Soc Work 1996; 21: 24-29.
36. Mayer M, Till JE. The Internet: a modern Pandora's box? Qual Life Res 1996; 5: 568-571.
37. Fernsler JI, Manchesteer LJ. Evaluation of a computer-based cancer support network. Cancer Pract 1997; 5: 46-51.
38. Scolamiero SJ. Support groups in cyberspace. MD Comput 1997; 14: 12-14.
39. Klemm P, Reppert K, Visich L A non-traditional cancer support group: the Internet. Comput Nurs 1998; 16: 33-36.
40. Sonnenberg FA. Health information on the Internet: opportunities and pitfalls. Arch Intern Med 1997; 157: 151-152.
41. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet: Caveant lector et viewer - let the reader and viewer beware. JAMA, 1997; 277: 1244-1245.
42. Weisbord SD, Soule JB, Kimmel PL Poison on line - acute renal failure caused by oil of wormwood purchased through the Internet. New Engl J Med 1997; 337: 825-827.
43. Stephenson J. Patient pretenders weave tangled "Web" of deceit. JAMA 1998; 280: 1297.
44. Buckman R. How to break bad news: a guide for health care professionals. Baltimore: Johns Hopkins University Press, 1992; pp. 65-97.
45. Feldman MD, Bibby M, Crites SD. 'Virtual' factitious disorders and Munchausen by proxy. West J Med 1998; 168: 537-539.
46. Weijer C, Singer PA, Dickens BM, Workman S. Bioethics for clinicians: dealing with demands for inappropriate treatment. CMAJ 1998; 159: 817-821.
47. rd edition. Scarborough: Carswell, 1996; pp. 235-269.
48. Gatehouse J. Taking up Tyrel's fight. National Post 1999; May 11: A3.
49. Krishna S, Balas EA, Spencer DC, Griffin JZ, Boren SA. Clinical trials of interactive computerized patient education: implications for family practice. J Fam Pract 1997; 45: 25-33.
50. Robinson TN, Patrick K, Eng TR, Gustafson D. An evidence-based approach to interactive health communication: a challenge to medicine in the information age. JAMA 1998; 280: 1264-1269.
51. Taylor E. Interactive technology enters realm of cancer education. J Natl Cancer Inst 1994; 70: 37-38.
52. Buhle EL Jr, Goldwein JJW, Benjamin I. OncoLinlc a multimedia oncology information resource on the Internet. Proc Annu Symp Comput Appl Med Care 1994; XX: 103-107.
53. Bader SA, Braude RM. "Patient Informatics": creating new partnerships in medical decision making. Acad Med 1998; 73: 408-411.
54. Kahn G. Computer-based patient education: a progress report. MD Comput 1993; 10(2): 93-99.
55. Tang PC, Jaworski MA, Felencer CA Kreider N, La Rosa MP, Marquardt WC. Clinician information activities in diverse ambulatory care practices. Proc AMIA Ann Fall Symp 1996; 12-16.
56. Calkins DR, Davis RB, Reiley P, Phillips RS, Pineo KL, Delbanco TL, et al. Patient-physician communication at hospital discharge and patients' understanding of the postdischarge treatment plan. Arch Intern Med 1997; 157: 1026-1030
57. Fallowfield L, Hall A, Maguire GP, Baum M. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. Br Med J 1990; 301: 575-580.
58. Spooner SA. The pediatric Internet. Pediatrics 1996; 98: 1185-1192.
59. Buchanan J, Borland R, Cosolo W, Millership R, Haines I, Zimet A, et al. Patients' beliefs about cancer management. Support Care Cancer 1996; 4: 110-117.
60. Pereira J, Bruera E. The Internet as a resource for palliative care and hospice: a review and proposals. J Pain Symptom Manage 1998; 16: 59-68.
61. Sikorski R, Peters R. Where to find reliable cancer information on the Internet. JAMA 1997; 277: 1431-1432.
62. Eisenberg DM. Advising patients who seek alternative medical therapies. Ann Intern Med 1997; 127: 61-69.
63. Chapman CR. The World Wide Web: a pain and symptom control resource for professionals and the public. J Pharm Care in Pain & Symp Control 1998; 6: 23-35.
64. Mackillop WJ, Stewart WE, Ginsburg AD, Stewart SS. Cancer patients perceptions of their disease and its treatment. Br J Cancer 1988; 58: 355-358.
65. Jenkins C, Scarfe A, Bruera E. Integration of palliative care with alternative medicine in patients who have refused curative cancer therapy: a report of two cases. J Palliat Care 1998; 14: 55-59.
66. Eisenberg DM, Kessler RC, Foster C, Norlock FE, Calkins DR, Delbanco TL. Unconventional medicine in the United States: prevalence, costs, and patterns of use. N Engl J Med 1993; 328: 246-252.
67. Evidence-Based Medicine Working Group. Evidence-based medicine: a new approach to teaching the practice of medicine. JAMA 1992; 268: 2420-2425.
68. Biermann JS, Gooloaday GJ, Greenfield MLVH, Baker LH. Evaluation of cancer information on the Internet. Cancer 1999; 86: 381-390.
69. Wyatt J. Commentary: measuring quality and impact of the world wide web. Br Med J 1997; 314: 1879-1880.
70. Health On The Net Foundation. Health On The Net code of conduct (HONcode) for medical and health web sites. Available at : http://www.hon.ch/HONcode/Conduct.html. Accessed October 22, 1999.
71. Jadad AR, Gagliardi A. Rating health information of the Internet navigating to knowledge or to Babel? JAMA 1998, 279: 611-614.
72. Impicciatore P, Pandolfi C, Casella N, Bonati M. Reliability of health information for the public on the world wide web: a systematic survey of advice on managing fever in children at home. Br Med J 1997; 314: 1875-1879.
73. Juhling McClung H, Murray RD, Heitlinger LA. The Internet as a source for current patient information. Pediatrics 1998; 101: 1065.
74. Strull WM, Bernard LO, Charles G. Do patients want to participate in medical decision-making? JAMA 1984; 252: 2990-2994.
75. Winker MA, Flanagin A, Chi-Lum B, White J, Andrews K, Kennett RL, et al. Guidelines for medical and health information sites on the Internet: principles governing AMA Web sites. JAMA 2000; 283: 1600-1606.
76. Lewis PH. Follow-up survey reports growth and Internet users. New York Times 1996; August 14: D2.
77. Burstein HJ, Gelber S, Guadagnoli E, Weeks JC. Use of alternative medicine by women with early-stage breast cancer. New Engl J Med 1999; 340: 1733-1739.