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: 2.2). 07/2005; 57(3):250-61. DOI: 10.1016/j.pec.2004.06.006
Source: PubMed


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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Available from: Julia Rowland
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    • "The majority of existing studies on care needs of cancer survivors focused on needs in secondary care or to needs in general. Two literature reviews in secondary care showed a need for psychosocial, medical and informational support [38,39]. Yet, it is not specified in these reviews from whom they want to get this support. "
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    ABSTRACT: Background The number of cancer survivors is increasing due to improved treatments. Consequently, general practitioners will treat more and more cancer survivors in the upcoming years. Only little is known about the care needs of these survivors and guidelines to support general practitioners in their treatment of these patients are lacking. The aim of this study was to gain insight in the health care needs of cancer survivors in general practice. Methods A systematic review on cancer survivors’ general practice needs was conducted in PubMed, Embase and the Cochrane Library of Systematic Reviews. Eligible studies could be qualitative or quantitative studies examining cancer survivors’ needs in general practice. Studies of adult survivors, with any cancer type, considered free of active disease and no longer receiving active treatment, were included. For each study a quality score was given using a form developed specifically for this study. Statements about survivors’ general practice needs were collected and corresponding themes were grouped. Results Fifteen studies were included, of which twelve were qualitative. Most mentioned general practice needs were psychosocial needs, mainly being support received form the GP, followed by a need for help with medical issues, and a need for information on cancer, recovery, late treatment effects and on adjusting to life after treatment. Conclusions Cancer survivors have different types of general practice needs that are currently not or insufficiently met. This review provides a starting point for the development of new guidelines for general practitioners to support in cancer survivorship.
    Full-text · Article · May 2014 · BMC Family Practice
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    • "The prevalence of patients living after a diagnosis of cancer has increased due to rising incidence and improving survival [1-3]. Patients often seek information on preventing and detecting further cancer occurrence [4,5]. There is therefore an increasing need to determine the risk of subsequent cancer and to provide appropriate surveillance and behaviour modification advice. "
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    ABSTRACT: There is evidence that cancer survivors are at increased risk of second primary cancers. Changes in the prevalence of risk factors and diagnostic techniques may have affected more recent risks. We examined the incidence of second primary cancer among adults in the West of Scotland, UK, diagnosed with cancer between 2000 and 2004 (n = 57,393). We used National Cancer Institute Surveillance Epidemiology and End Results and International Agency for Research on Cancer definitions of multiple primary cancers and estimated indirectly standardised incidence ratios (SIR) with 95% confidence intervals (CI). There was a high incidence of cancer during the first 60 days following diagnosis (SIR = 2.36, 95%CI = 2.12 to 2.63). When this period was excluded the risk was not raised, but it was high for some patient groups; in particular women aged <50 years with breast cancer (SIR = 2.13, 95%CI = 1.58 to 2.78), patients with bladder (SIR = 1.41, 95%CI = 1.19 to 1.67) and head & neck (SIR = 1.93, 95%CI = 1.67 to 2.21) cancer. Head & neck cancer patients had increased risks of lung cancer (SIR = 3.75, 95%CI = 3.01 to 4.62), oesophageal (SIR = 4.62, 95%CI = 2.73 to 7.29) and other head & neck tumours (SIR = 6.10, 95%CI = 4.17 to 8.61). Patients with bladder cancer had raised risks of lung (SIR = 2.18, 95%CI = 1.62 to 2.88) and prostate (SIR = 2.41, 95%CI = 1.72 to 3.30) cancer. Relative risks of second primary cancers may be smaller than previously reported. Premenopausal women with breast cancer and patients with malignant melanomas, bladder and head & neck cancers may benefit from increased surveillance and advice to avoid known risk factors.
    Full-text · Article · Apr 2014 · BMC Cancer
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    • "Self-management of osteoarthritis can be complex (e.g., Rutten, Arora, Bakos, Aziz, & Rowland, 2005; McBride, Tsai, Knott, & Rogers, 2011). As healthcare moves towards a collaborative care model, it is becoming important for older adults who have osteoarthritis to play a larger role in the management of their disease and its symptoms. "
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    ABSTRACT: Osteoarthritis is a leading cause of chronic pain, affecting approximately one-third of older adults in the United States and imposing a financial burden on the healthcare system. Pain management for osteoarthritis is complex; there is a need for a technology to support people with osteoarthritis to capture, integrate, and display information on pain and mediating factors critical for pain management. We developed a system that can support self-management of osteoarthritis pain, including identification of factors influencing pain. The efficacy of this system was tested with seven older adults— who reported experiencing osteoarthritis pain for at least three years—and three healthcare providers—who reported experience assisting older adults in managing osteoarthritis pain within the past year. For both groups, our system improved their ability to answer comprehension questions about osteoarthritis pain. Overall, this system for tracking and managing pain supported users’ understanding of osteoarthritis pain and its mediators, which could ultimately lead to improved management of osteoarthritis pain.
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