ReviewInformation needs and sources of information among cancer patients: a systematic review of research (1980–2003)
Introduction
A vast body of research identifying cancer patients’ information needs and the sources from which they receive cancer-relevant information has emerged; our study provides a comprehensive review of this literature [1], [2], [3], [4], [5], [6], [7], [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19], [20], [21], [22], [23], [24], [25], [26], [27], [28], [29], [30], [31], [32], [33], [34], [35], [36], [37], [38], [39], [40], [41], [42], [43], [44], [45], [46], [47], [48], [49], [50], [51], [52], [53], [54], [55], [56], [57], [58], [59], [60], [61], [62], [63], [64], [65], [66], [67], [68], [69], [70], [71], [72], [73], [74], [75], [76], [77], [78], [79], [80], [81], [82], [83], [84], [85], [86], [87], [88], [89], [90], [91], [92], [93], [94], [95], [96], [97], [98], [99], [100], [101], [102], [103], [104], [105], [106], [107], [108], [109], [110], [111], [112]. The benefits of information for cancer patients include increased patient involvement in decision-making and greater satisfaction with treatment choices [20], [60]; improved ability to cope during the diagnosis, treatment, and post-treatment phases [63], [113], [114]; reductions in anxiety and mood disturbances [96], [115]; and improved communication with family members [116], [117], [118]. Information seeking has been demonstrated to play a critical role in individuals’ efforts to cope with the disruption of quality of life associated with cancer diagnosis and treatment [119]. Because effective communication is known to be key to optimal health outcomes, understanding what patients need to know, when during the course of care, and from whom they receive this information becomes vital to ensuring the delivery of quality cancer care. To date, most studies of patients’ information needs have been conducted in distinct sets of patients at limited periods during their care. Furthermore, many of the existing reviews of this literature have limited to specific cancers (e.g. [120], [121]). To our knowledge, no comprehensive attempt has been made to synthesize findings from previous investigations to provide a broad overview of cancer patients’ information needs over time.
Our review of the literature aims to synthesize this body of research to discern cancer patients’ information needs and the sources from which they receive cancer-relevant information throughout their cancer journey. Specifically, this review seeks to address the following objectives: (1) identify cancer patients’ information needs during their cancer journey, (2) identify the sources cancer patients use to obtain cancer-relevant information, and (3) examine whether, and to what extent needs and information sources sought vary by phase of the cancer care continuum (diagnosis, treatment, post-treatment/survivorship, relapse/recurrence, and end-of-life).
Section snippets
Methods
A review of the literature published over the past 20 years was conducted using the following databases: Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Social Science Citation Index (SSCI), and PsychINFO. The search was limited to articles published in English between January 1, 1980 and July 31, 2003, involving adult samples. To be comprehensive, we conducted a fairly broad search using the following search terms in conjunction with the term cancer: information
Sample characteristics
Characteristics of the samples described in the articles were coded and summarized (Table 1). In the majority of articles reviewed, samples included patients with a variety of cancer diagnoses (52%); samples focusing exclusively on breast cancer patients (25%) or patients with prostate cancer (16%) were also common. The average sample size was n = 352, ranging from (n = 1) [80] to (n = 13,136) [24]. Since the search was limited to articles published in English, it is not surprising that the
Methodological critique of studies
There is a great deal of consistency in the content of information needs and sources reported across diverse samples and varied methodologies, which provides a cohesive picture of cancer patients’ information needs and sources. However, there are several conceptual, measurement, and design limitations of this literature that are worth noting.
Conclusions
Our review provides a better understanding of the relative focus of this expanding body of literature through summary of both the number of articles addressing a particular category of information need and/or information source as well as the total number of occurrences of a particular category of need or source in the entire literature. The use of qualitative and quantitative approaches to analyzing these reports provides greater understanding of patients’ needs and the sources of information
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