Information needs and sources of information among cancer patients: a systematic review of research (1980-2003). Patient Educ Couns

Division of Cancer Prevention, National Cancer Institute, 6130 Executive Blvd., EPN 4051A, MSC 7365, Bethesda, MD 20892, USA.
Patient Education and Counseling (Impact Factor: 2.6). 07/2005; 57(3):250-61. DOI: 10.1016/j.pec.2004.06.006
Source: PubMed

ABSTRACT Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to ensuring quality care. We reviewed 112 articles published from 1980 to 2003 and developed a typology summarizing cancer patients' information needs and the sources from which they receive information. The majority of articles focused on information needs and sources during the diagnosis and treatment phase. Thus, the most frequent information need was treatment-related (38.1%). The most frequent information source was health professionals (27.3%). We examined patients' information needs and sources along the continuum of care and found that during diagnosis and treatment, information needs about the stage of disease, treatment options, and side-effects of treatment were prominent; during post-treatment, patients continued to need information about treatment, and information about recovery was also important. Future research should examine cancer patients' information needs and sources throughout their cancer journey.

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    • "Further research might be needed to follow up on this result and explore the factors that might cause this variation in information needs. The findings revealed that being in the terminal stage (no active treatment) predicts low information need, and this was consistent with previous studies (Ankem, 2006; Leydon et al., 2000; Matsuyama et al., 2012; Rutten et al., 2005). This might be because patients have lost hope, are depressed, and are overwhelmed by cancer-related symptoms in the later stages of cancer treatment. "
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    ABSTRACT: Cancer diagnosis can leave patients with uncertainty and anxiety that can be reduced by providing timely information and effective communication. Despite information provision being highly important in improving the quality of provided care, no study had been conducted to assess the information needs of Jordanian cancer patients. To investigate the information needs of Jordanian cancer patients. A quantitative research method and a descriptive cross-sectional survey design were used. The sample consisted of 182 Jordanian cancer patients. Participants were recruited from two hospitals; one of them was a university hospital and the second was governmental hospital. The mean age was 46.5 (SD 15.8 years); 52% of the sample were males. In addition, 38% of the patients had haematological tumours and 20% had gastro-intestinal tumours. The majority (157) wanted information about cancer. The results showed that patients would like to know everything about their disease (mean = 3.1, SD 0.9) and medical tests (mean = 3.0, SD 1.0). The results also revealed that younger patients, those who were working, and those with a high income had high information needs. However, patients who had reached the stage of palliative care seemed to require a lesser amount of information than those in the early stage of treatment. Many factors may cause variations in patients' information-seeking behaviour. Therefore, a notational policy for information provision is needed to satisfy different patients' information needs. Healthcare providers should be aware that cancer patients' will continue to need information at all stages.
    European journal of oncology nursing: the official journal of European Oncology Nursing Society 10/2013; 18(1). DOI:10.1016/j.ejon.2013.09.007 · 1.79 Impact Factor
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    • "In Canada , more than half of the working age adults have less than adequate health literacy [20]. Often patients receive information verbally or through information pamphlets [21]. Information can be forgotten when given verbally and written information is not tailored to individuals' needs [22] [23]. "
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    ABSTRACT: To investigate the impact of a Multimode Comprehensive Tailored Information Package (MCTIP) on Head and Neck (H&N) cancer patients' knowledge and satisfaction. A non-randomized controlled trial was conducted at two participating hospitals. One hospital delivered the MCTIP and the second hospital provided normal care. The study was approved by local ethical committees. Patients with Stage III and IV cancer in the H&N region were recruited between their diagnosis and treatment. All participants were evaluated at baseline, 3 and 6months later using the Satisfaction with Cancer Information Profile (SCIP) and a Cancer Knowledge questionnaire. Data were analyzed using descriptive statistics, T tests, chi square tests and finally linear mixed model analyses to test the potential impact of the intervention. A total of 103 participants participated in this study and complete data at all time points were collected for 96. The Test group reported higher levels of Cancer Knowledge and Satisfaction at all time points (p<0.001 with all comparisons) compared to the Control group. Our study demonstrated an association between receiving the multimedia based tailored information and higher levels of satisfaction and cancer knowledge compared to those who receive information in ad hoc manner. Implications: Exploring patients' informational needs is necessary before planning information services to them.
    Oral Oncology 07/2013; 49(9). DOI:10.1016/j.oraloncology.2013.06.005 · 3.03 Impact Factor
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    • "Cancer survivors who are satisfied with the information they received have a better health related quality of life, and lower levels of depression and anxiety [8]. Studies suggest that most cancer patients want as much information as possible [7] [9] [10]. "
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    ABSTRACT: To evaluate perceived level of and satisfaction with information received by endometrial cancer survivors, and to identify associations with socio-demographic and clinical characteristics. All patients diagnosed with endometrial cancer between 1998 and 2007, registered in the Eindhoven Cancer Registry, received a questionnaire including EORTC-QLQ-INFO25. Seventy-seven percent responded (n=742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, radiotherapy, absence of comorbidities, having a partner, having received written information, and higher educational level were associated with higher perceived information receipt. Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient. More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.
    Patient Education and Counseling 05/2012; 88(3):427-35. DOI:10.1016/j.pec.2012.05.002 · 2.60 Impact Factor
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