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      Internet chemotherapy information: impact on patients and health professionals

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          Abstract

          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.

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          Most cited references17

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          Cancer patients' information needs and information seeking behaviour: in depth interview study.

          To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. Qualitative study based on in-depth interviews. Outpatient oncology clinics at a London cancer centre. 17 patients with cancer diagnosed in previous 6 months. Analysis of patients' narratives to identify key themes and categories. While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information: faith, hope, and charity. Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carry on with life as normal and could be maintained through silence and avoiding information, especially too detailed or "unsafe" information. Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarce resources-including information and explanations-had to be shared and meant that limited information was accepted as inevitable. Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.
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            Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease. Implications for cancer screening and management.

            Two main psychologic coping styles for dealing with cancer and other health threats have been identified: monitoring (attending to) or blunting (avoiding) potentially threatening information. This article reviews results and implications from this research relevant to cancer screening and management. The Monitor-Blunter Style Scale has been used extensively to assess and categorize patients with regard to these coping styles to predict their differential responses to various cancer-related screening and management regimens. Patients characterized by a monitoring coping style generally are more concerned and distressed about their cancer risk, experience greater treatment side effects, are more knowledgeable about their medical situation, and are less satisfied with and more demanding about the psychosocial aspects of their care. They also prefer a more passive role in clinical decision making, are more adherent to medical recommendations, and manifest greater psychologic morbidity in response to cancer-related threats. Patients fare better (psychologically, behaviorally, and physiologically) when the information they receive about their medical condition is tailored to their own coping styles: generally those with a monitoring style tend to do better when given more information, and those with a blunting style do better with less information. However, patients with a monitoring style who are pessimistic about their future or who face long term, intensely threatening, and uncontrollable medical situations may require not just more information, but also, more emotional support to help them deal with their disease.
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              Information needs of cancer patients in west Scotland: cross sectional survey of patients' views.

              To assess the needs of patients with cancer for information about their condition. Cross sectional survey of patients' views by means of semistructured interview with questionnaire. A regional cancer centre and two university hospitals in west Scotland. 250 (93%) of 269 cancer patients invited to participate in study who were selected by age, sex, socioeconomic status, and tumour site to be representative of cancer patients in west Scotland. Patients' need to know whether they had cancer, the medical name of their illness, progress through treatment, how treatment works, side effects, chances of cure, and treatment options. 79% (95% confidence interval 73% to 84%) of patients wanted as much information as possible, and 96% (93% to 98%) had a need or an absolute need to know if they had cancer. Most patients also wanted to know the chance of cure (91% (87% to 94%)) and about side effects of treatment (94% (90% to 97%)). When the replies were cross tabulated with patients' age, sex, deprivation score, and type of treatment there was a linear trend for patients from more affluent areas to want more information and those from deprived areas to want less. There was a strong preference for diagnosis of cancer to be given by a hospital doctor (60% (53% to 66%). Almost all patients wanted to know their diagnosis, and most wanted to know about prognosis, treatment options, and side effects.
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                Author and article information

                Journal
                Br J Cancer
                Br. J. Cancer
                British Journal of Cancer
                Nature Publishing Group
                0007-0920
                1532-1827
                14 February 2012
                19 January 2012
                : 106
                : 4
                : 651-657
                Affiliations
                [1 ]Department of Oncology/Haematology, Northampton General Hospital NHS Trust , Cliftonville, Northampton, NN1 5BD, UK
                [2 ]Department of Clinical Oncology, The Churchill Hospital, Oxford Radcliffe Hospitals NHS Trust , Old Road, Oxford OX3 7LJ, UK
                Author notes
                Article
                bjc2011601
                10.1038/bjc.2011.601
                3322953
                22262319
                bf9f5260-edfa-43df-b1e1-e82b69505c67
                Copyright © 2012 Cancer Research UK
                History
                : 02 September 2011
                : 28 November 2011
                : 16 December 2011
                Categories
                Clinical Studies

                Oncology & Radiotherapy
                chemotherapy,education of patients,health personnel,nurses,physicians,internet
                Oncology & Radiotherapy
                chemotherapy, education of patients, health personnel, nurses, physicians, internet

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