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To the Editor: The possible impact of the Internet revolution has been much discussed.1-3 In two surveys, conducted in 1999 and 2001, we surveyed oncology patients from two teaching hospitals in central Sydney to explore the experience and impact of Internet use among Australian oncology patients.
In November 1999, a questionnaire was mailed to 240 eligible patients selected from 617 sequential registrations to the oncology units. Eligible patients were those who were alive, competent, had cancer, were of known address and whose attending medical officer was participating.
In the second survey, to obtain a more representative sample, we invited all oncology patients visiting the outpatient clinics over a three-month period (September to December 2001) to participate.
We received completed questionnaires from 142 patients (response rate, 59%) in 1999 and from 153 patients (number of refusals unknown) in 2001. Of these, 33% (47/142) in 1999 and 46% (70/153) in 2001 had accessed the Internet for information relating to their illness, either personally or through family and friends. In both surveys, most users accessed the Internet from home, the information sought was mainly in relation to treatment, and the most-visited Internet sites were those of cancer centres.
Patient perceptions of the impact of Internet-acquired information on their experience of cancer are summarised in the Box. Most patients viewed its impact as positive. The advantages of using the Internet reported by patients included its speed, convenience, privacy, currency, diversity of viewpoints, and usefulness as a support tool. Many reported that they had sought corroboration of Internet information with information from other sources, especially their doctor. Problems identified with the Internet were its impersonal nature, time costs, overabundance of information, and concerns about the discovery of inappropriate, inaccurate or distressing information. Most respondents emphasised that they were able to recognise these limitations, but, notwithstanding, considered the Internet a valuable resource. For example, one respondent wrote: "I felt my capacity to cope with the illness and treatment greatly improved because I learned enough from the Internet to challenge my oncologist and thereby learn to trust him and his advice."
Despite concerns expressed by many doctors, these oncology patients assessed impacts as either positive or neutral in overall influence. Increasing Internet use by patients and their families should not be viewed as a problem, but as an opportunity for patients and their treatment teams to work together, ensuring that patients have up-to-date information about their illness and its treatment and are aware that they are not alone in the fight against cancer.
Perceived influence of Internet-acquired information among oncology patients in 1999 and 2001
Better |
No change |
Worse |
Question not answered |
||||||||
1999 survey (n = 47) |
|||||||||||
Relationship with doctor |
12 (26%) |
30 (64%) |
0 |
5 (11%) |
|||||||
Discussions with doctor |
20 (43%) |
22 (47%) |
0 |
5 (11%) |
|||||||
Treatment decisions |
22 (47%) |
19 (40%) |
1 (2%) |
5 (11%) |
|||||||
Coping with illness |
26 (55%) |
15 (32%) |
1 (2%) |
5 (11%) |
|||||||
2001 survey (n = 70) |
|||||||||||
Relationship with doctor |
24 (34%) |
34 (49%) |
2 (3%) |
10 (14%) |
|||||||
Discussions with doctor |
42 (60%) |
18 (26%) |
1 (1%) |
9 (13%) |
|||||||
Treatment decisions |
37 (53%) |
25 (36%) |
0 |
8 (11%) |
|||||||
Coping with illness |
32 (46%) |
31 (44%) |
1 (1%) |
6 (9%) |
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Oncology Unit, Repatriation General Hospital, Concord, NSW.
Julia ML Brotherton, BMed(Hons) MPH(Hons) , Senior Resident Medical Officer (currently, Public Health Officer, Public Health Training and Development Unit, NSW Health).Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, NSW.
Stephen J Clarke, PhD FRACP, Senior Staff Specialist in Medical Oncology.School of Public Health, University of Sydney, NSW.
Susan Quine, MPH PhD, Associate Professor.Correspondence: Dr Julia M L Brotherton, Public Health Training and Development Branch, NSW Health, LMB 961, North Sydney, NSW 2059. jbrotATdoh.health.nsw.gov.au
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©The Medical Journal of Australia 2002 www.mja.com.au PRINT ISSN: 0025-729X ONLINE ISSN: 1326-5377