Oncology information on the Internet

Owing to new developments in Internet technologies, the amount of available oncology information is growing. Both patients and caregivers are increasingly using the Internet to obtain medical information. However, while it is easy to provide information, ensuring its quality is always a concern. Thus, many instruments for evaluating the quality of health information have been created, each with its own advantages and disadvantages. The increasing importance of online search engines such as Google warrants the examination of the correlation between their rankings and medical quality. The Internet also mediates the exchange of information from one individual to another. Mailing lists of advocate groups and social networking sites help spread information to patients and caregivers. While text messages are still the main medium of communication, audio and video messages are also increasing rapidly, accelerating the communication on the Internet. Future health information developments on the Internet include merging patients' personal information on the Internet with their traditional health records and facilitating the interaction among patients, caregivers and health-care providers. Through these developments, the Internet is expected to strengthen the mutually beneficial relationships among all stakeholders in the field of medicine.     

Evaluation of the Heidelberg cancer information service by the consumer

The Cancer Information Service (KID) was established 1986 as a model project of the BMJFFG in the German Cancer Research Center. Its task is to provide the general public with quickly accessible information about cancer research, cancer prevention, cancer diagnosis, cancer treatment and cancer after-care by phone. Aim of this study was to collect data by a questionnaire given to a sample of 444 callers to describe the characteristics of the callers, their motivation to use the service, the contents of the inquiries and their judgement of effectivity of the work of the service. It was found that nearly 80% of the callers were patients and their relatives, predominantly in the period after the primary treatment. Their questions concerned the field of medical treatment. Their motivation to use the service was not lack of information, but to reinforce the knowledge they already had. The callers fundamentally appreciated the institution of an information service and 62% were satisfied with the actual work of the KID.     

Quality of health information on the Internet in pediatric neuro-oncology

The Internet is now the single largest source of health information and is used by many patients and their families who are affected by childhood brain tumors. To assess the quality of pediatric neuro-oncology information on the Internet, we used search engines to look for information on five common tumor types (brain stem glioma, craniopharyngioma, ependymoma, low-grade glioma, and medulloblastoma). The Web sites were evaluated for content quality by using the validated DISCERN rating instrument. Breadth of content and its accuracy were also scored by a checklist tool. Readability statistics were computed on the highest-rated sites. Of 114 evaluated Web sites, the sources were as follows: institutional, 46%; commercial, 35%; charitable, 15%; support group, 2%; and alternative medicine, 2%. Good interobserver correlation was found for both ratings instruments. The DISCERN tool rated Web sites as excellent (4%), good (7%), fair (29%), poor (39%), or very poor (21%). Only 5% of the Web sites provided one or more inaccurate pieces of information. Web sites were found deficient in topics covering etiology, late effects, prognosis, and treatment choices. Few sites offered information in languages other than English, and readability statistics showed an average required reading level of U.S. grade 12+ (the suggested level being grades 6-8 for an adult audience). The Internet is increasingly being used as a source of oncology information for patients and their families. Health care professionals should be actively involved in developing high-quality information for use in the next generation of Web sites.     

The impact of the Internet on cancer outcomes

Each day, more than 12.5 million health-related computer searches are conducted on the World Wide Web. Based on a meta-analysis of 24 published surveys, the author estimates that in the developed world, about 39% of persons with cancer are using the Internet, and approximately 2.3 million persons living with cancer worldwide are online. In addition, 15% to 20% of persons with cancer use the Internet "indirectly" through family and friends. Based on a comprehensive review of the literature, the available evidence on how persons with cancer are using the Internet and the effect of Internet use on persons with cancer is summarized. The author distinguishes four areas of Internet use: communication (electronic mail), community (virtual support groups), content (health information on the World Wide Web), and e-commerce. A conceptual framework summarizing the factors involved in a possible link between Internet use and cancer outcomes is presented, and future areas for research are highlighted.     

Deciding on PSA-screening - Quality of current consumer information on the Internet

Purpose of the studyGiven that screening for prostate cancer has the potential to reduce prostate cancer mortality at the expense of considerable overdiagnosis and overtreatment, the availability of core consumer information – correct, balanced and supportive of autonomous decision-making – is a must. We assessed the quality of consumer information available through the Internet per November 2009 and its possible contribution to informed decision-making by potential screenees.MethodsConsumer information on PSA-screening was sought through the Internet in November 2009. Materials had to be targeted at potential consumers, offered by not-for-profit organisations, released in 2005 or after, in English or Dutch. Per material 2 of the authors assessed independently from each other whether standardised pre-defined topics were addressed, whether the content was correct and which approach was taken towards the decision-making process about uptake.ResultsTwenty-three materials were included, of which 11 were released (shortly) after the results of 2 large randomized-controlled trials (RCTs) that evaluated the effectiveness of screening for prostate cancer had been published in March 2009. That a PSA-test result can be abnormal because of non-cancerous conditions (false positive) and that it may miss prostate cancer (false negative) was not addressed in 2/23 and 8/23 materials, respectively. The risk of overdiagnosis and overtreatment was not mentioned in 6 out of 23. PSA-screening was presented as a usual thing to do in some materials, whereas other materials emphasised the voluntary nature of PSA-screening (‘it is your decision’). The content of 19/23 materials was considered sufficiently informative according to the pre-defined criteria, 12/23 materials were considered supportive of informed decision-making by men.ConclusionsMost materials of not-for-profit organizations supplied adequate information about PSA-screening, whilst the degree of persuasion towards uptake reflected variations in opinions on men’s autonomy regarding their own health.     

Quality of childhood brain tumour information on the Internet in French language

The continuing growth of the Internet has transformed the access to medical information. However, there are still little data on the quality of e-Health information available. This study examined the content and readability of paediatric neuro-oncology information on the Internet in the French language. The first 30 uniform/universal resource locators (URLs) from each of six search engines using the search terms "medulloblastoma", "ependymoma", "craniopharyngioma", "brainstem glioma" and "low grade glioma" were retrieved for accuracy and evaluation when appropriate. Eligible web sites were rated using the Discern instrument and a 13-items checklist. Readability was assessed using Flesch Reading Ease score. Out of 815 sites visited, only 22 fulfilled the evaluation criteria. Most sites rated either fair (25%), poor (59%) or very poor (13%). The mean readability score was 19.8 (6-32), indicative of poor accessibility by readability and complex vocabulary content. The poor quality of e-Health information is not specific of Web sites in French. The role of cooperative groups and the Health Care System in providing and disseminating clear and compelling medical information is essential.     

A study of cancer information for cancer patients on the internet

Background  There have been few studies of the information provided for cancer patients on the internet. Methods  Using the Japanese language, we searched for cancer-related web pages, using the Google search engine, and evaluated the characteristics of the 150 top-ranked search results. We collected information on the operators of the websites, number of links, existence of a search function, and advertisements on the site. According to their contents, the 150 websites were classified into seven categories, of which five (numbers 1, 2, 3, 4, and 6) each accounted for 20% of the websites. The categories were: (1) media-related websites (e.g., newspapers and publishers), and portal sites; (2) patient association websites, patient's diaries, blogs by patients and/or their families (n = 33); (3) websites of medical institutions (e.g., hospitals; n = 27); (4) websites of research institutions (e.g., universities; n = 35); (5) websites of pharmaceutical companies; (6) other websites providing medical information (n = 32); and (7) other websites that did not belong to categories 1–6. Outgoing links were common in websites created by media-related organizations (median, 13) or patients and their families (median, 15), but such links were not common in the other types of websites (median, 0–4). Eight of the 13 cancer based hospitals in Japan, as well as the National Cancer Center were publishing general cancer information on their websites. Of the 13 cancer based hospitals, 12 included a link to the National Cancer Center. The National Cancer Center had the largest amount of information (736 575 words), exceeding the amount provided by the other cancer based hospitals (1 622–155 515 words). Two of the 7 websites of academic associations (included in category 6) had cancer information for patients, but the document sizes were small (3230–44 091 words). Conclusion  The website of the National Cancer Center is the most prominent source of general cancer information for patients, but it still has room for improvement in its usability.     

Relating information needs to the cancer experience. 2. Themes from six cancer narratives

Many different issues may arise for individuals with cancer, where the provision of information can be an effective coping strategy. It is also clear that information needs change over time and vary from person to person. This paper considers six cancer narratives from a study seeking to identify the information needs of people with cancer that emerged out of their cancer experience. Six respondents were invited to tell their story through in-depth interviews and narrative analysis uncovered thematic aspects of the lived experience. Themes emerged which showed that cancer impacts on different aspects of an individual's self-identity, including body image, family, social and work relationships. Cancer was viewed as an intrusion and the illness engendered feelings of vulnerability that impacted on their normal coping mechanisms. This resulted in a decreased ability to process information. While individuals expressed medical information needs, they were less likely to articulate their need for information when it related to other areas of their lives. Individuals reached a turning point during their experience, when the self-acknowledgement that they were living with cancer, enabled them to become more active respondents in the information process. As this stage cannot readily be identified as occurring at a specific point of the cancer trajectory, communication channels need to be kept open regarding information-giving. This raises questions about areas for further study.     

A computerized cancer patient information system.

The purpose of this study was to realize a computer system for cancer data automatic processing. A clinical research in oncological practice is usually time consuming and often not reliable or deceiving because of a number of various errors. Until now, only a few information systems have been specifically designed for cancer data processing, and these have a limited capacity of autonomous data elaboration. Our system, based on an original computer program, can compile, store and process essential data on cancer diseases, with a high degree of reliability and high speed of elaboration. Input and output of this system are simplified and user oriented, without limitations for the subject at study on clinical research, and no particular training of the physicians involved is necessary.     

Internet chemotherapy information: impact on patients and health professionals

Background:

Reliable information can improve patients'' knowledge of chemotherapy. As internet chemotherapy information (ICI) is increasingly viewed as a valuable patient education tool, we investigated the impact of ICI on patient care and analysed health professionals'' (HPs'') attitudes towards ICI.

Methods:

The following questionnaires were distributed: (1) self-administered questionnaire randomly given to 261 patients receiving chemotherapy (80% returned); and (2) separate questionnaire given to 58 HPs at the same UK Oncology Centre (83% returned).

Results:

Just over half of the patient respondents accessed the internet regularly. They were younger, with higher incomes and qualifications. Key search topics included chemotherapy modes of action, symptom management and treatment success, and most considered ICI useful. More than half wanted to discuss ICI with HPs but most did not get the opportunity. Although the majority of HP respondents supported the need for patients to retrieve ICI, most questioned the accuracy of ICI and did not routinely recommend its use.

Conclusion:

This study has shown that ICI is generally perceived by patients to be a valuable information resource. Given the potential impact of ICI, the following should be addressed in future studies: (1) inequalities in accessing ICI; (2) maintaining the quality of ICI (with clear guidance on recommended websites); (3) bridging the gap between the perception of ICI by patients and HPs; (4) integration of ICI with traditional consultation models.     

Latest information on the treatment of uterine cervical cancer

We investigated the role of hemoglobin level in chemoradiation therapy for patients with advanced cervical cancer by reviewing the literature for current therapeutic information. We found that anemia during chemoradiation therapy is an important physiological factor in determining the long-term prognosis of patients with advanced cervical cancer.     

Internet health resources and the cancer patient

The last decade has witnessed an explosion of online information regarding cancer and healthcare. Accompanying this has been a large body of research analyzing the quality of this information, how patients perceive these data and how this affects the doctor-patient relationship. This report reviews this literature, summarizing the current state of internet health resources available to the cancer patient and identifying areas for future research. Studies indicate that there are considerable internet resources available to cancer patients and that patients are using these resources as secondary information sources. Specifically, studies indicate that 16-64% of patients are using the internet to obtain health information. For the most part, patients perceive the online information to be reliable but maintain a healthy degree of skepticism. Studies objectively evaluating cancer information on the internet indicate that there is reasonable quality, although the language level of many sites is higher than that of the average American, which may limit the utility of the websites. Finally, while there is widespread internet use by physicians, healthcare providers are skeptical of their patients' ability to use the internet and may even be somewhat threatened by it. In summary, while there is a fairly large literature on internet resources available to the cancer patient, more research is needed. Specifically, it is important to better understand how patients access health information online and their associated preferences so that we can improve cancer patient's access to high quality health information on the internet to facilitate decision-making and health outcomes.     

Overview of the Internet and prostate cancer resources

The hallmark of the age of personal computers is the ability to obtain information and communicate with others on nearly any subject using a computer connected to the global network known as the Internet. Information on many diseases is available on the World Wide Web. Information on prostate cancer, including its characteristics, diagnosis, and treatment, is abundantly present on the Internet. This article provides an overview of Internet prostate cancer resources, presenting a brief history of the Internet and its ubiquitous application, the World Wide Web, with a discussion of search engines, the utilization of web resources by physicians (including evaluating web sites, and a highly selected list of noteworthy sites), and the growing use of electronic mail (e-mail) in the patient-physician relationship.     

Evaluation of the SCA instrument for measuring patient satisfaction with cancer care administered via paper or via the Internet

BackgroundPatients’ perspectives provide valuable information on quality of care. This study evaluates the feasibility and validity of Internet administration of Service Satisfaction Scale for Cancer Care (SCA) to assess patient satisfaction with outcome, practitioner manner/skill, information, and waiting/access.Patients and methodsPrimary data collected from November 2007 to April 2008. Patients receiving cancer care within 1 year were recruited from oncology, surgery, and radiation clinics at a tertiary care hospital. An Internet-based version of the 16-item SCA was developed. Participants were randomised to Internet SCA followed by paper SCA 2 weeks later or vice versa. Seven-point Likert scale responses were converted to a 0–100 scale (minimum–maximum satisfaction). Response distribution, Cronbach’s alpha, and test–retest correlations were calculated.ResultsAmong 122 consenting participants, 78 responded to initial SCA. Mean satisfaction scores for paper/Internet were 91/90 (outcome), 95/94 (practitioner manner/skill), 89/90 (information), and 86/86 (waiting/access). Response rate and item missingness were similar for Internet and paper. Except for practitioner manner/skill, test–retest correlations were robust r = 0.77 (outcome), 0.74 (information), and 0.75 (waiting/access) (all P < 0.001).ConclusionsInternet SCA administration is a feasible and a valid measurement of cancer care satisfaction for a wide range of cancer diagnoses, treatment modalities, and clinic settings.