Jones R, Pearson J, McGregor S, et al. Cross sectional survey of patients' satisfaction with information about cancer

Department of Public Health, University of Glasgow, Glasgow G12 8RZ.
BMJ Clinical Research (Impact Factor: 14.09). 12/1999; 319(7219):1247-8. DOI: 10.1136/bmj.319.7219.1247
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    • "In 1992, 56% of 1,500 adult cancer survivors in the United States reported having obtained at least one second opinion [4]. In the Netherlands and other Western countries, these needs are acknowledged as patients' rights and are embodied in new laws on Medical Treatment Enactment [9] [10] [11]. No international studies have been performed in pediatric oncology to understand the reasons for seeking a second opinion. "
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    ABSTRACT: Objectives: The goal of this study was to identify second opinion consultations by physicians and to determine patient and family factors that appeared to contribute to a second opinion being sought. Methods: One hundred and fifty consecutive parents of children with cancer recently treated in our Department of Pediatric Hematology Oncology were interviewed by telephone. The questionnaire included epidemiological data, details about the disease, timing of the second opinion consultation, reasons for seeking a second opinion, and the outcome of the consultation. Results: Thirty-seven (24.7%) parents sought a second opinion. Advice was sought from other physicians in the hospital or at other clinics. There was a correlation to a higher socioeconomic status (P = .003) and to the number of educational years (P = .001). Most of the parents sought a second opinion because they wanted confirmation about the treatment protocol and the professional level of the hematologist oncologist/surgeon and the institution. Conclusions: Second opinion consultations were not uncommon and were mainly secondary to the desire for reassurance. Pediatric oncologists should ensure that patients and their families feel comfortable requesting a second opinion consultation.
    Pediatric Hematology and Oncology 12/2014; 32(4). DOI:10.3109/08880018.2014.987938 · 1.10 Impact Factor
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    • "Previous literature suggests that doctors underestimate their patients' need for information [1] [2] [3] while patients generally desires as much information about their condition as possible [4– 10]. Consequently, unfulfilled information needs for different types of patients have been reported [11] [12] [13] [14] [15] [16] [17] [18]. For example, cancer patients report unmet information needs on severity of the disease, prognosis and treatment alternatives [19] and GP patients report unmet needs on risks and benefits of treatments [18]. "
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    ABSTRACT: OBJECTIVE: This study aims to assess unfulfilled information needs of native-Dutch and Turkish-Dutch general practitioner (GP) patients in the Netherlands. In addition, the relation between perceived and recorded information provision by GPs is studied. METHODS: Unfulfilled information needs of native-Dutch (N=117) and Turkish-Dutch patients (N=74) were assessed through pre- and post-consultation questionnaires. Audiotapes of GP consultations were made to code GPs' information provision. RESULTS: Turkish-Dutch patients experience more unfulfilled information needs than native-Dutch patients, in particular those who identify equally with Dutch and Turkish culture. Overall, perceived information provision is hardly related to recorded information provision. CONCLUSION: GPs insufficiently provide Turkish-Dutch patients and, to a lesser extent, native-Dutch patients as well, the information they need. PRACTICE IMPLICATIONS: GPs should be trained in giving adequate, tailored information to patients with various ethnic and cultural backgrounds.
    Patient Education and Counseling 12/2012; 90(2). DOI:10.1016/j.pec.2012.11.013 · 2.20 Impact Factor
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    • "In the USA, more attention is being paid to health literacy [20, 21, 28], i.e. “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions” [29], than in the Netherlands. Since our and other studies have observed that lower educated survivors report worse scores, more attention should be paid to providing information on a basic comprehensive level [19, 22, 23]. "
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    ABSTRACT: To improve posttreatment care for (long-term) lymphoma survivors in the Netherlands, survivorship clinics are being developed. As information provision is an important aspect of survivorship care, our aim was to evaluate the current perceived level of and satisfaction with information received by non-Hodgkin's lymphoma (NHL), Hodgkin's lymphoma (HL) and multiple myeloma (MM) survivors, and to identify associations with sociodemographic and clinical characteristics. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with NHL, HL and MM from 1999 to 2009. In total, 1,448 survivors received a questionnaire, and 1,135 of them responded (78.4 %). The EORTC QLQ-INFO25 was used to evaluate the perceived level of and satisfaction with information. Two thirds of survivors were satisfied with the amount of received information, with HL survivors being most satisfied (74 %). At least 25 % of survivors wanted more information. Young age, having had chemotherapy, having been diagnosed more recently, using internet for information and having no comorbidities were the most important factors associated with higher perceived levels of information provision. Although information provision and satisfaction with information seems relatively good in lymphoma and MM survivors, one third expressed unmet needs. Furthermore, variations between subgroups were observed. Good information provision is known to be associated with better quality of life. Survivorship care plans could be a way to achieve this.
    Annals of Hematology 05/2012; 91(10):1587-95. DOI:10.1007/s00277-012-1495-1 · 2.63 Impact Factor
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