Annals of Oncology Advance Access published November 22, 2011

original article

Annals of Oncology doi:10.1093/annonc/mdr532

Internet use by cancer patients: should oncologists ‘prescribe’ accurate web sites in combination with chemotherapy? A survey in a Spanish cohort M. Lo´pez-Go´mez1*, C. Ortega2, I. Sua´rez3, G. Serralta3, R. Madero4, C. Go´mez-Raposo1, M. Sereno1, E. Casado1, E. Espinosa5, F. Lobo6 & J. Feliu5 1

Background: Cancer patients search for information about prognosis and treatment. Internet has become a major source of medical information. Its impact on oncology patients is not well known. Patients and methods: Three hundred and eighty questionnaires were distributed to cancer patients and companions and 293 were returned. The type of information they obtained online, its usefulness, and its impact on the patient–physician relationship as well as other sources of searching were demanded. Student t-tests, chi-square tests, and multivariate regression logistic analysis were carried out. Results: Internet use was low (27% patients, 58% relatives). Cancer-specific information was the principal research (41% and 70%). For 61% patients, the information had been useful. Information provided by clinicians was the primary reason to not use Internet (37% and 67%). Twenty-two percent patients discussed it with clinicians. Among other sources, health professional (62% and 51%) and printed materials (18% and 25%) were the most demanded. Conclusions: Cancer patients and carers reported a low use of the Internet for searching medical information, although it helps patients to better cope with cancer. To discuss this information may strengthen the patient–physician relationship. Physicians should ensure that their patients receive reliable online information. Key words: cancer patient, Internet use, medical information, patient–physician relationship, relatives

introduction A cancer diagnosis involves substantial anxiety among patients and their family members. To make decisions, patients search for information about their diagnosis, prognosis, therapeutic options, and the benefits of treatment [1]. Physicians are often unable to satisfy this desire for information because of the limited time available during clinical encounters. Therefore, patients are turning with increasing frequency to the Internet to obtain health information. The number of health-related web sites has recently grown and they represent a major source of medical information; however, the quality of some of these sites is questionable, and there are no laws or regulations that govern the posting of information on the web [2]. Over the past several decades, the physician–patient relationship has shifted away from a paternalistic relationship to one in which patients are given equal power *Correspondence to: Dr M. Lo´pez-Go´mez, Medical Oncology Department, Infanta Sofı´a University Hospital, Paseo Europa 34, 28702, San Sebastia´n de los Reyes, Madrid 28702, Spain. Tel: +34-911914000; Fax: +34-911915388; E-mail: [email protected]

to make decisions with their physicians. Thus, patients have become active consumers of health information, and the Internet has become the major source of information to satisfy this need [3]. Little is known about the impact of medical information obtained from the Internet on clinical oncology practice because only a few studies have been published in some countries that are examining this issue, and no studies have been previously published on Spanish patients. For this reason, we conducted a structured survey of Spanish cancer patients to investigate their rate of Internet use and the consequences of this Internet use on the patient–physician relationship. Carers of cancer patients were also included in the survey. In Spain, as well as in other Hispanic countries, relatives may frequently receive more information than the patient himself (especially regarding prognosis or the evolution of the disease). This is more often seen in special situations, such as elderly or mentally impaired patients. This behavior differs from other countries, wherein patients are the only targets of physicians’ information. In Spain, cancer patients rely primarily on their closest relatives to cope with the disease and want them to be involved in the decision-making process.

ª The Author 2011. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For permissions, please email: [email protected]

original article

Received 26 October 2009; revised 20 August 2010; revised 25 April 2011; accepted 30 September 2011

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Medical Oncology Department, Infanta Sofı´a University Hospital, San Sebastia´n de los Reyes, Madrid; 2Medical Oncology Department, Virgen de la Luz Hospital, Cuenca; 3Internal Medicine Department, Infanta Sofı´a University Hospital, San Sebastia´n de los Reyes, Madrid; 4Biostatistics Department, La Paz University Hospital, Madrid; 5Medical Oncology Department—IdIPAZ RETICC RD 06/0020/1022, La Paz University Hospital, Madrid; 6Medical Oncology Department, Jimenez Diaz Foundation, Madrid, Spain

original article Because relatives might share the responsibility for making treatment-related decisions, they want to be as well informed as possible. At this point, Internet has become an important source of information and support, and its use is changing the way people experience cancer. Relatives and caregivers actively seek information according to individual circumstances [4]. This study elucidates the use of the Internet among cancer patients and carers in a based sample from Spain and makes an exhaustive review of literature determining the value of this information in helping both patients and relatives to cope with their disease.

materials and methods Participants were selected by convenience sampling from an oncology service in a tertiary urban hospital in downtown Madrid and two rural clinics in Ciudad Real. Recruitment was conducted between January 2007 and June 2009, and the local ethics committee approved the study. Spanish-speaking patients with cancer diagnoses were asked to participate in the research and were informed of the goals of the study. Eligible subjects included patients >18 years of age who could communicate and read in Spanish. They were asked for oral informed consent. After a clinical encounter (either for active chemotherapy treatment or for follow-up visits), physicians invited patients to complete a 15-min written questionnaire regarding their use of the Internet to obtain medical information. A total of 380 questionnaires were distributed. Each questionnaire was coded with a unique identification number so as to ensure confidentiality. Consenting patients accepted and returned the study questionnaire, either directly to the physician or at the next visit. Subjects were told that all answers would be kept confidential. Companions accompanying patients to the clinic were invited to complete a similar questionnaire regarding their use of the Internet to search for cancer-related information so as to learn about cancer on behalf of the patient. They represented both relatives of patients who responded to the survey and relatives of patients who did not participate in the study. The goals of the study were also explained to these subjects, and they were asked for their oral informed consent.

questionnaire The questionnaire was developed based on a review of the medical literature and on suggestions made by health professionals. We selected the items based on prior studies suggesting that the questions were relevant to patients and their companions who read cancer-related information on the web [5–7]. Questionnaires consisted of multiple choice questions, with only one answer accepted for each item. The first part of the questionnaire collected information on patient sociodemographics (including gender, age, level of education, living environment, job, marital status, computer ownership and internet access, and relationship to the patient in the case of companions), as well as questions concerning the patient’s cancer (cancer sites, elapsed time from diagnosis, cancer phase of the patient, diagnosis, treatment, post-treatment, survivorship, and multiple stages). The second part of the questionnaire asked participants about their sources of medical information, such as health care professionals, printed material, interpersonal sources, media, organizational and scientific resources; however, this part of the questionnaire focused on Internet use, wherein it questioned the main reasons for its use and the types of information that were searched for (general cancer information, treatment options, and prognosis). Patients were also asked about the quantity of information

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they wanted to receive (everything, only the requested information, or nothing). The last part of the questionnaire focused on the way they had coped with the information: emotional reactions after searching (anxiousness, hopefulness), individual feelings about the quality of the information (very accurate, poorly accurate), and, finally, the effects of this research on the treatment selection process (the role that the information played in the decision-making process) and on the patient– physician relationship (they were asked whether they discussed this information with the clinician).

statistical analyses Statistical analyses were carried out using SPSS software, version 12.0 (Chicago, IL). Student t-tests were carried out to test for an association of continuous variables in the context of obtaining cancer information via the Internet. Two tests were conducted to examine the association between categorical variables and Internet use. If any cells <5 (units) were expected, Fisher’s exact tests were conducted instead of chi-square tests. A multivariable logistic regression analysis was carried out to investigate the association of demographic and diagnostic variables with Internet use. Missing data were excluded from the analysis.

results A total of 293 surveys were returned from 170 patients and 123 relatives.

demographic results The mean patient age was 59.9 (range 32–83), whereas the mean family member age was 44.4 (range 24–73). Significantly, more women than men took part in the survey in both groups, with women accounting for 64.1% of patients and 66.6% of relatives. Table 1 reports other sociodemographic data. Internet access significantly differed between patients (55.3%) and relatives (83.7%). Internet use Internet use for medical information differed between patients (27%) and relatives (58%) (Table 2). A solid majority of patients (73%) did not use the web to search for information. Table 1. Patients and relatives demographic data Variables Age (median) Sex Male Female Living environment Urban Rural Highest education Primary school Secondary school University PC access Internet access

Patients (n = 170) 60 (range 28–89)

Relatives (n = 123) 44.4 (range 16–78)

61 (35.9) 109 (64.1)

41 (33.3) 82 (66.7)

116 (68.2) 54 (31.8)

91 (73.9) 32 (26.0)

105 26 39 101 94

(61.8) (15.3) (22.9) (59.4) (55.3)

38 35 50 109 103

All results are expressed as n (%) unless stated otherwise.

(30.9) (28.5) (40.6) (88.6) (83.7)

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Table 2. Types of information sought and reasons for Internet use Variables

Relatives (n = 123)

46 (27) 124 (73)

71 (58) 52 (42)

46 28 25 9

(37) (23) (20) (7)

35 6 6 5

(67) (11.5) (11.5) (10)

16 (13) 59 (48)

0 (0) 49 (94)

19 (41) 4 (9) 4 (9)

50 (70) 15 (21) 5 (7)

19 (41)

1 (2)

Patients OR (95% CI) Sex Male Female Age group <55 55–70 >70 Place of residence Rural Urban Studies Primary Secondary University

Reference 0.70 (0.27–1.84)

Relatives P-value OR (95% CI) 0.476

Reference 1.15 (0.49–2.66)

P-value 0.743

Reference <0.001 0.20 (0.08–0.49) 0.03 (0.00–0.25)

Reference 0.783 0.69 (0.25–1.96) 0.70 (0.36–13.94)

Reference 1.75 (0.52–5.86)

0.366

Reference 0.94 (0.38–2.33)

0.898

Reference 1.56 (0.49–5.02) 2.56 (0.95–6.90)

0.273

Reference 1.32 (0.47–3.67) 2.79 (1.04–7.47)

0.092

CI, confidence interval; OR, odds ratio.

All results are expressed as n (%) unless stated otherwise.

Of those patients who did not use the Internet, 37% reported that they preferred to directly receive information from their clinicians. Similar results were found in the subgroup of companions: 67% stated that the most common reason for not using the Internet to search for medical information was their preference for obtaining that information from clinicians. When non-Internet users were asked whether they would like to use the web to search for medical information, 48% of patients and 94% of relatives expressed their willingness to obtain more cancer-related information from the Internet. The most desired information was similar between the two subgroups: general cancer information (possible therapies, course of the disease, and prognosis) was the most common desire, which was expressed by 41% of patients and 70% of family members, whereas information regarding treatment options was the second most common (expressed by 9% of patients and 21% of relatives). The univariate analysis in the patient group showed no statistically significant association between Internet use and sex (P = 0.472). In contrast, Internet use was significantly associated with age. Median age of Internet users was 51.5 years [interquartile range (IQR): 39–56 years], whereas median age of non-Internet users was 65 years (IQR: 56–63 years) (P < 0.001). Internet use was also associated with university studies (P < 0.001) and urban residence (P < 0.001). Multivariate analysis is shown in Table 3. After adjusting for other variables, Internet use in the patients group was significantly associated with having age <55 years. There was some evidence that Internet use was associated with having university studies compared with having primary education, although this did not reach statistical significance [odds ratio (OR): 2.56; 95% confidence interval (CI) 0.95–6.90]. For the relatives group, the only variable significantly associated with Internet use in the univariable analysis was education level

(P = 0.032). In multivariable analysis, the only factor associated with Internet use in the relatives group after adjusting for other risk factors was having university studies compared with having primary education (OR: 2.79, 95% CI 1.04–7.47). The impact of Internet use by patients on coping with the disease and the consequences of Internet use for the patient– physician relationship are shown in Table 4: 48% of Internet searchers felt more optimistic after the search, and, surprisingly, negative feelings, such as confusion or nervousness/anxiety, were only cited by 48% and 22% of interviewees, respectively. Few patients discussed their Internet search with clinicians (22%). At this point, the primary reason for not discussing medical information with clinicians was the lack of time during the clinical encounter (31%). Interestingly, only 13% reported that they did not discuss their Internet search due to fear of the clinician’s reaction or distrust of the clinician. Finally, when asked about their ideal patient–physician relationship regarding the decision-making process, 90 of 170 patients (53%) looked forward to an equal decision-making process (Table 5).

other sources Patients and relatives who did not use the web (n = 124 and n = 71, respectively) to find medical information were asked to identify the other sources they used to find health information. Health professionals remained the most common source of information for both patients (62%) and their companions (51%). Printed materials (books, leaflets obtained from physicians, magazines, and newspapers) were used by 18% of patients and 25% of relatives. Interpersonal sources (primarily friends and/or family, other patients, and counseling or support groups) were cited by 16% of patients and 8% of relatives. Media other than the Internet (TV, radio) was cited in 3% of patients and 8% relatives, and, finally, the use of health care organizations was low in both groups (1% in patients and 9% in relatives) (Figure 1).

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Internet use for medical information Yes No Reasons for not using Internet Preference for clinicians Lack of a computer Unacquainted with Internet Computer without access to Internet No answer Likelihood of obtaining information among nonusers Principal types of researches Cancer-specific information Treatment options Ways to cope better with the disease Others

Patients (n = 170)

Table 3. Multivariate analyses for Internet use for medical information by patients and relatives characteristics

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Table 4. Impact of information searching on coping with the disease and patient–physician relationship Questions

22 (48) 14 (30) 10 (22) 10 (22) 32 (70) 4 (8)

10 7 4 11

(31) (22) (13) (34)

28 (61) 6 (26) 6 (13) 11 (24) 31 (67) 4 (9)

All results are expressed as n (%).

Table 5. Ideal patient–physician relationship in the decision-making progress Ideal patient–physician relationship Patient and physician should make the decisions in an equal basis Physician should make all the treatment-related decisions according to his knowledge Patient should take all the treatment-related decisions No answer

Patients (n = 170) 90 (53) 58 (34) 8 (5) 14 (8)

All results are expressed as n (%).

discussion The diagnosis of cancer is associated with anxiety about the prognosis, the effectiveness and side-effects of the treatment, and fear for the future. Patients want to receive as much information as possible and this desire for information is undoubtedly an increasing trend among cancer patients [8]. The main reason for this increasing need of information lies in the changes that have been held in the patient–physician relationship: The traditional paternalism has been abandoned and replaced with the principle of autonomy. (We found 53% patients who reported that physicians should be more respectful of the desires of the patient and should make decisions in an equal partnership.) Patients want to play an

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Individual feelings after the search Optimism Confusion Nervousness or anxiety Likelihood of discussing medical information Yes No No answer Reasons for not discussing medical information (n = 32/46) Lack of time during clinical encounter Lack of personal interest Distrust/fear to clinician reaction Others Information achieved useful globally for patient Yes No No answer Information achieved useful for treatment options Yes No No answer

Patients who search medical information (n = 46)

active role in the course of their disease, making their own decisions regarding treatment and outcome [9]. For this purpose, they need to be well informed, and they will search medical information in a variety of sources. Previous studies from the literature have examined cancer patients’ informational needs and sources, and these needs have changed over the years. Earlier studies reported that TV and print media (leaflets and newspapers) were the most frequently cited sources of general information by patients [10]. In these first surveys, computers were only cited as a future source of information. Print resources remained the most common source of information for cancer patients in subsequent studies. In 2004, Basch et al. [11] reported that Internet use was popular as a vehicle for gathering information, but print publications remained the most commonly used resources. The topics of inquiry were similar between print and electronic resources, including diagnosis, the treatment of specific cancer types, nutrition, self-help, cancer biology, and patient experiences. Our survey agrees with these results and also shows a high use of printed materials by both patients and their relatives (18% and 25%, respectively). Therefore, although Internet use has increased worldwide, patient reliance on nonelectronic sources of information remains quite high. Nevertheless, more recent reviews reveal that health professionals (physicians, nurses, and health professionals in general or other health-related professionals) are the most frequently cited sources of information. Rutten et al. [1] showed that health professionals were the most common source of information (27.3%), followed closely by printed materials (26.2%). Our research revealed that among non-Internet users, 62% of patients and 51% of relatives primarily relied on their physicians for information. Other studies have found similar results, wherein health care physicians were consistently the most cited sources, followed by printed materials and interpersonal sources [12]. But, even though health professionals consistently emerge as an important source of health information, it is necessary to evaluate the different sources of information used by patients to improve their care. Because the Internet has become a major source of medical and health information for patients and families [5], we decided to focus our work on Internet use. A study by Hesse et al. [13] has shown that even though physicians remained the most highly trusted source of information according to patients [62.4% (95% CI 60.8% to 64.0%) adults placed significant trust in their physicians], 48.6% (95% CI 46.1% to 51.0%) patients reported first going online for information, whereas only 10.9% (95% CI 9.5% to 12.3%) went first to their physicians. This first study provided evidence for the observation that people were turning to the Internet as an information source of first resort. In the past 5 years, the benefits of the increase in online informationseeking behaviors among patients have been the subject of numerous studies [14–17]. Internet use has become a common phenomenon among individuals who are seeking medical care. Its anonymity, convenience, and the amount of available information make it an attractive medium for the public to obtain medical information. On average, nearly a quarter of Europeans (23%) use the Internet to obtain health information, and 41.5% think

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Sources used to obtain cancer related information among non Internet users 70

60

50

Percent

40 Patients Relatives 30

10

0 Health professionals

Printed materials

Interpersonal sources

Media (TV, radio)

Health care organizations

Sources of information

Figure 1. Sources used to obtain cancer-related information among non-Internet users.

that it is a good way to obtain information [18]. Overall, the current study found that 27% of Spanish cancer patients use the Internet as an information source. The results of our multivariate analyses show that age and educational level are associated with Internet use by patients and educational level is associated with use by relatives. These results are consistent with literature [19–21]. When participants who did not use the Internet as a source of medical information were asked for the reasons, 37% patients and 67% relatives reported doctors as their most preferred source of information. Bash et al and James et al [11, 22] also reported the preference for the clinician among both groups. These findings agree with previous data suggesting that, when surveyed, most patients trust their primary care physicians more than any other health information source and patient–physician relationship should not be deteriorated [23, 24]. The direct consequences of our results in patient–physician relationship cannot be elucidated as a prospective longitudinal study should be conducted to evaluate this issue. Nevertheless, previously it has been shown that the obtention of cancer-related information from the Internet is not likely to replace a face-to-face encounter with a health professional [11, 22, 25, 26]. The low rate of Internet users who discussed the information with doctors during the clinical encounter (22%) reported in our study is similar to rates found in literature (24% and 39% in two different studies [27, 28]). Only a few studies reported higher rates [29]. Fear was suggested to be the main reason, as patients may expect their search to be perceived as a threat to the physician’s authority. In contrast, in our study was the lack of time during the clinical encounter, the main argument reported by interviewers for not discussing the information. Considering that we reported 30% patients who felt more confused after the search in the Internet, improving

communication between patients–oncologists and caregivers– oncologists about the information obtained via Internet should provide help to both patients and relatives [30]. The integration of the new knowledge acquired into the patient–physician interaction might help patients and carers to cope better with the disease and to feel better equipped to manage the new situation [31]. The Internet has many advantages, including its wide availability (at home, work, and libraries), convenience (24 h a day at home), and anonymity [32]. However, there is no quality control of the medical and health information that is posted on the Internet, and anyone with access can establish a web site and post medical information on the Internet [19]. Hence, it is critical to ensure that patients make decisions based on accurate information [33]. Patients and carers would like doctors to provide them with information about which web sites to access [22]. Physicians should encourage discussions about the patient’s search to clear up confusion and ‘prescribe’ accurate web sites to patients in order to guide them to reliable information [34]. The most relevant contribution of our study is the examination of relative’s use and attitudes toward Internet and the determination of different patterns of use. Relatives of cancer patients must also cope with the diagnosis of cancer. Cancer survivorship is increasing and carers need to adapt themselves to the new circumstances. Family members are expected to provide a vital health resource [35]. Ensuring that they have all the information and support is essential as it can impact on patient outcomes. Relatives assist the patient in adjusting to their new diagnoses, in managing their cancer and treatment-related sideeffects, and they also give them psychological support [36]. For them, access to Internet information is reported as important as it supports them in their caring role [26]. To date, most studies about using the Internet for access to cancer-related information

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their relatives trying to be more informated than patients themselves so that they can decide which information they want to hide patients (specially regarding prognosis) [7, 43]. Finally, carers are usually encouraged by cancer patients to conduct this search as these latter reports receiving this type of informational support as a positive experience [41]. Our study had several limitations. First, the sample could be biased in that patients who seek information are more likely to take and complete a questionnaire. Second, questionnaires were only distributed in outpatient clinics; therefore, they may have been primarily completed by healthier patients. Furthermore, responses were self-reported so Internet use could not be verified, and because the questionnaires were designed to be completed within a short period of time, many aspects of Internet search behavior could not be explored in detail. Our results are cross-sectional data; therefore, the future consequences of Internet research (i.e. the changes in patient– physician relationship) cannot be assessed. Because we did not attempt to recruit participants through a national cancer registry, caution is advertised when extrapolating to the rest of Spanish cancer patients and caregivers’ behaviors. Nevertheless, our data and all the previous studies reviewed here draw a representative picture of patients and relatives behaviors toward on line searching and its possible consequences. The central contribution of our study is its potential for showing the differences in information engagement between patients and caregivers. This acquires special relevance in Spain and other countries in which caregivers play a substantial role in the decision-making process. Our data and previous results found in literature suggest that Internet searching helps patients to better cope with their

Table 6. Characteristics of previous studies that searched the use of Internet among cancer patients’ carers Author (year)

Study design

Sample size

Aim

Cornwall et al. (2008) [37]

Cross-sectional data

8 patients and 8 carers

Lo´pez-Go´mez et al. (2008) [38]

Structured interview

99 patients and 65 carers

Pecchioni and Sparks (2007) [39]

Cross-sectional data

84 patients and 84 carers

James et al. (2007) [22]

Semi-structured interview with survey

800 patients and 200 carers

Kirschning et al. (2007) [7]

Cross-sectional data

113 carers

Basch et al. (2004) [11]

Cross-sectional data

223 patients and 220 carers

Edgar et al. (2002) [40]

Cross-sectional data

18 patients and 6 relatives

Chen and Sui (2001) [19]

Cross-sectional data

191 patients (111 made the search with the help of relatives)

Evaluation of e-mail as a method of communication Evaluation of the reasons of Internet use and the type of information sought Evaluation of the satisfaction acquired with different information sources Evaluation of cancer patients and carers attitudes toward Internet compared with other media Evaluation of the relatives reasons for conducting research on the net Evaluation of the use of electronic and nonelectronic informational resources Evaluation of the use of health information on the Internet. Evaluation of news media and Internet as sources of medical information

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and support have been focused on the patient experience. We have reviewed the studies in literature regarding Internet use by carers (Table 6). Overall, their aims were examining patient’s/ carer’s use and attitudes to the Internet, determining patterns of use and themes of web postings and exploring interest in use and usefulness of Internet-based facilities. Our study included 123 questionnaires that were filled out by relatives. The most important data we found was a higher rate of Internet users among relatives (57% versus 27%). Even though our study is a purposive sample and participants were not recruited from a national cancer registry (extrapolation to the rest of the population could induce a bias), it incorporates more data to previous literature. Relatives may be asked to search for information on behalf of the person of cancer, especially when patients do not have access to Internet or are too ill. For them, providing information is considered as an activity they can do for their relative in an effort to help them to cope better with the disease [7, 41, 42]. In literature, studies show different results: James et al. [22] report carers being more likely to use the Internet than patients. Basch et al. [11] report similarity of Internet use between carer and patient. Relatives are more likely to use Internet in combination with other information sources [6, 22, 39, 43]. Others reported on less Internet use by carers, which may be associated with less carers being surveyed. Several hypothesis have been suggested for the higher rate of Internet use among companions: it can result from having less access to medical staff, as they can not always attend the appointments [39], or from feeling that not enough information has been offered to them [7, 43]. Moreover, some carers have reported to access the Internet for information for

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disease and that the discussion of this information in the clinical encounter might strengthen patient–physician relationship and help caregivers to give more support to their relatives. Doctors should help patients to clear up the misunderstandings that arise during Internet searching. From now on, an ‘Internet prescription’ could be incorporated into daily practice. Physicians have the duty to ensure that their patients receive reliable information from the Internet and to guide them to accurate web sites. In Spain where the carers play a central role in the cancer patient’s experience and in other countries where they also become an active part in the decisionmaking process, this Internet prescription should be aimed to families as well. Patient’s outcome might be influenced by the accuracy of this information.

The authors declare no conflicts of interest.

references 1. Rutten LJ, Arora NK, Bakos AD et al. Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns 2005; 57(3): 250–261. 2. Kunst H, Groot D, Latthe PM et al. Accuracy of information on apparently credible websites: survey of five common health topics. BMJ 2002; 324(7337): 581–582. 3. Brock DW. The ideal of shared decision making between physicians and patients. Kennedy Inst Ethics J 1991; 1(1): 28–47. 4. Street RL, Gordon HS. Companion participation in cancer consultations. Psychooncology 2008; 17(3): 244–251. 5. Helft PR, Eckles RE, Johnson Calley CS et al. Use of Internet to obtain cancer information among cancer patients at an urban county hospital. J Clin Oncol 2005; 23(22): 4954–4962. 6. Newnhan G, Burns W, Snyder R et al. Information from the Internet: attitudes of Australian oncology patients. J Intern Med 2006; 36: 718–723. 7. Kirschning S, von Kardorff E, Merai K. Internet use by the families of cancer patients-help for disease management? J Public Health 2007; 15: 23–28. 8. Meredith C, Symonds P, Webster L et al. Information needs of cancer patients in west Scotland: cross sectional survey of patients’ views. BMJ 1996; 313(7059): 724–726. 9. Madder H. Existential autonomy: why patients should make their own choices. J Med Ethics 1997; 23(4): 221–225. 10. James C, James N, Davies D et al. Preferences for different sources of information about cancer. Patient Educ Couns 1999; 37(3): 273–282. 11. Basch EM, Thaler HT, Shi W. Use of information resources by patients with cancer and their companions. Cancer 2004; 100(11): 2476–2483. 12. Walsh Mc, Trentham-Dietz A, Schroepfer TA et al. Cancer information sources used by patients to inform and influence treatment decisions. J Health Commun 2010 Jun; 15(4): 445–463. 13. Hesse BW, Nelson DE, Kreps GL et al. Trust and sources of health information: the impact of the Internet and its implications for health care providers: findings from the first Health Information National Trends Survey. Arch Intern Med 2005; 165(22): 2618–2624. 14. Peterson MW, Fretz PC. Patient use of the Internet for information in a lung cancer clinic. Chest 2003; 123: 452–457. 15. Kuppersmith RB. The physician-patient relationship and the Internet. Otolaryngol Clin North Am 2002; 35: 1143–1147. 16. Dickerson S, Reinhart AM, Feeley TH et al. Patient Internet use for health information at three urban primary care clinics. J Am Med Inform Assoc 2004; 11: 499–504. 17. Fox S. Health Information Online. Washington, DC: Pew Internet & American Life Project 2005.

18. European Commission. Survey of Online Health Information. 2003; http:// europa.eu.int/comm/public_opinion/archives/eb/eb59/eb59_rapport_final_en.pdf (14 November 2011, date last accessed). 19. Chen X, Siu LL. Impact of the media and the Internet on oncology: survey of cancer patients and oncologists in Canada. J. Clin Oncol 2001; 19(23): 4291–4297. 20. Jeannot JG, Froehlich F, Wietilisbach V et al. Patient use on the Internet for health care information in Switzerland for information. Swiss Med Wkly 2004; 134(21–22): 307–312. 21. Castleton K, Fong T, Wang-Gillam A et al. A survey of Internet utilization among patients with cancer. Support Care Cancer 2011; 19(8): 1183–1190. 22. James N, Daniels H, Tahman R et al. A study of information seeking by cancer patients and their carers. Clin Oncol 2007; 19: 356–362. 23. Dutta-Bergman M. Trusted online sources of health information: differences in demographics, health beliefs, and health-information orientation [published online ahead of print September 25, 2003]. J Med Internet Res 2003; 5: e21. Available at: http://www.jmir.org/2003/3/e21/. Accessed November 25, 2008. 24. Morahan-Martin JM. How Internet users find, evaluate, and use online health information: a cross-cultural review. Cyberpsychol Behav 2004; 7: 497–510. 25. Monnier J, Laken M, Carter C. Patient and caregiver interest in Internet-based cancer services. Cancer Pract 2002; 10: 305–310. 26. Morris SM, Thomas C. The carer’s place in the cancer situation: where does the carer stand in the medical setting? Eur J Cancer Care 2002; 10: 87–95. 27. Vondermark D, Ko¨lbl O, Flentje M. The Internet as a source of medical information: investigation in a mixed cohort of radiotherapy patients. Strahlenther Onkol 2000; 176: 532–535. 28. Adler J, Paelecke-Habermann Y, Jahn P et al. Patient information in radiation oncology: a cross-sectional pilot study using the EORTC QLQ-INFO26 module. Radiat Oncol 2009; 4: 40. 29. Helft PR, Hlubocky F, Daugherty CK. American oncologists’ views of Internet use by cancer patients: a mail survey of American Society of Clinical Oncology (ASCO) members. J Clin Oncol 2003; 21(5): 942–947. 30. McMullan M. Patients using the Internet to obtain health information: how this affects the patient-health professional relationship. Patient Educ Couns 2006; 63(1–2): 24–28. 31. Vondermark D. Patient information and decision aids in oncology: need for communication between patients and physicians. J Clin Oncol 2010; 28(29): e567. 32. Williams P, Huntington P, Nicholas D. Health Information on the Internet: a qualitative study of NHS direct online users. Aslib Proc 2003; 55: 304–312. 33. Winker MA, Flanagin A, Chi-Lum B et al. Guidelines for medical and health information sites on the Internet: principles governing AMA web sites. JAMA 2000; 283(12): 1600–1606. 34. Gerber BS, Eiser AR. The patient-physician relationship in the Internet age: future prospects and the research agenda. J Med Internet Res 2001; 3(2): E15. 35. Given BA, Given CW, Kozachick S. Family support in advanced cancer. CA Cancer J Clin 2001; 51: 213–231. 36. Bevan JL, Pecchioni LL. Understanding the impact of family caregiver cancer literacy on patient health outcomes. Patient Educ Couns 2008; 73: 551–556. 37. Cornwall A, Moore S, Plant H. Embracing technology: patients’ family members’ and nurse specialist’ experience of communicating using email. Eur J Oncol Nurs 2008; 12: 198–208. 38. Lo´pez-Go´mez M, Feliu J, Sereno M, et al. Internet use for medical research among cancer patients and their relatives in Spain. Ann Oncol 2008; 19: 1976–1977. 39. Pecchioni L, Sparks L. Health information sources of individuals with cancer and their family members. Health Commun 2007; 21: 143–151. 40. Edgar L, Greenbert A, Remmer J. Providing Internet lessons to oncology patients and family members: a shared project. Psycooncology 2011; 11: 439–446. 41. Simon C, Schramm S. Cancer and the computerized family: towards a clinical ethics of ‘indirect’ Internet use. Med Health Care Philos 2008; 11: 337–341. 42. Ginnosar T. Online participation: a content analysis of differences in utilization of two online cancer communities by men and women, patients and family members. Health Commun 2008; 23: 1–12. 43. Eysenbach G. The impact of the Internet on cancer outcomes. CA Cancer J Clin 2003; 53: 356–371.

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