Information needs and sources of information among cancer patients: a systematic review of research (1980–2003)

2005 ◽  
Vol 57 (3) ◽  
pp. 250-261 ◽  
Author(s):  
Lila J. Finney Rutten ◽  
Neeraj K. Arora ◽  
Alexis D. Bakos ◽  
Noreen Aziz ◽  
Julia Rowland
Keyword(s):  
Systematic Review ◽  
Cancer Patients ◽  
Information Needs ◽  
Sources Of Information

scholarly journals Patient and public perspectives on cell and gene therapies: a systematic review

2020 ◽  
Vol 11 (1) ◽  
Author(s):  
Olalekan Lee Aiyegbusi ◽  
Karen Macpherson ◽  
Lauren Elston ◽  
Susan Myles ◽  
Jennifer Washington ◽  
...  
Keyword(s):  
Systematic Review ◽  
Information Needs ◽  
Current Evidence ◽  
Future Research ◽  
Sources Of Information ◽  
Social Challenges ◽  
Research Education ◽  
Gene Therapies ◽  
Education And Awareness ◽  
Cell And Gene Therapy

AbstractCell and gene therapies offer opportunities for treating disease with potential to restore function, and cure disease. However, they are not without risk and pose complex logistical, economic, ethical and social challenges for health systems. Here we report our systematic review of the current evidence on patient and public knowledge and perspectives of cell and gene therapies, to inform future research, education and awareness raising activities. We screened 10,735 titles and abstracts, and evaluated the full texts of 151 publications. The final selection was 35 publications. Four themes were generated from the narrative synthesis of the study findings namely: (1) Knowledge and understanding of cell and gene therapies, (2) Acceptance of cell and gene therapies (3) Understanding of risk and benefits of therapy, and (4) Information needs and current sources of information. As potential funders or future recipients, it is important that the public and patients are aware of these therapies, understand the issues involved, and can contribute to the debate. This review highlights the need for appropriate patient and public education on the various aspects of cell and gene therapies. High quality studies exploring patient and public opinions and experiences of cell and gene therapy are required. Patient and public perceptions of these therapies, alongside evidence of clinical and cost-effectiveness, will be central to their uptake and use.

scholarly journals Use of Mobile Devices to Help Cancer Patients Meet Their Information Needs in Non-Inpatient Settings: Systematic Review

10.2196/10026 ◽  
2018 ◽  
Vol 6 (12) ◽  
pp. e10026 ◽  
Author(s):  
Rebecca Richards ◽  
Paul Kinnersley ◽  
Kate Brain ◽  
Grace McCutchan ◽  
John Staffurth ◽  
...  
Keyword(s):  
Systematic Review ◽  
Cancer Patients ◽  
Mobile Devices ◽  
Information Needs ◽  
Inpatient Settings

Information seeking for coping with cancer: a systematic review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Emil Petersen ◽  
Jesper Gabs Jensen ◽  
Tove Faber Frandsen
Keyword(s):  
Systematic Review ◽  
Cancer Patients ◽  
Coping Strategy ◽  
Information Seeking ◽  
Information Needs ◽  
Information Science ◽  
Screening Process ◽  
Content Type ◽  
Life Threatening ◽  
The Impact

PurposeInformation seeking can be used to make sense of a situation or solve a problem. Information seeking can be considered a coping strategy when facing illness, crisis or other life-changing events. Cancer is a globally occurring, life-threatening disease, and this review aims to provide an overview of the existing literature on the active information seeking behaviour of cancer patients specifically focussing on how active information seeking serves as a coping strategy.Design/methodology/approachThis study adheres to current guidelines for conducting systematic reviews and consequently, thorough literature searches were conducted in four databases: Medline, Embase, CINAHL and Scopus which resulted in 7,179 publications. Following a careful screening process, this systematic review identifies 14 studies on the use of information seeking to cope with cancer.FindingsThe included studies consist of both qualitative and quantitative approaches to analysing the use of information seeking to cope with cancer. The included studies have focussed primarily on demographic factors, the impact of affect, information needs, sources and coping strategies.Research limitations/implicationsA number of research gaps within library and information science are identified. Bringing research in this field into information science could allow for a greater understanding of information literacy, the use of existing information and the process of information searching when using information seeking to cope with serious illness.Originality/valueThis systematic review focusses on how information seeking serves as a coping strategy for cancer patients and provides an overview of the recent literature.

scholarly journals Addressing the information needs of patients with prostate cancer: A literature review

2009 ◽  
Vol 8 (1) ◽  
pp. 23-33 ◽  
Author(s):  
Neil A. Mc Parland
Keyword(s):  
Prostate Cancer ◽  
Cancer Patients ◽  
Information Needs ◽  
Resource Constraints ◽  
Psychosocial Support ◽  
Well Being ◽  
Sources Of Information ◽  
Face To Face ◽  
Care Workers ◽  
Effective Manner

AbstractPsychosocial support is a cornerstone in the holistic care of cancer patients. The provision of information is a key tool in the psychosocial management of the cancer patient, and it is important that the therapy radiographer is cognizant of the patient's need for information.This article reviews the importance of information to the psychosocial well-being of cancer patients in general, with specific emphasis on patients with prostate cancer. The information services at a large Canadian cancer facility are also reviewed to gain some insight into how the needs of patients with prostate cancer are addressed at the author's workplace.Most patients with prostate cancer have an expressed need for considerable amounts of information at various stages of their cancer journey. The provision of information has a range of benefits to the prostate patient such as helping the patient deal with their diagnosis, assisting with the decision-making process and reducing anxiety.Interpersonal sources of information such as face-to-face communication with the oncologist or radiation therapist are preferred by many patients, including patients with prostate cancer. Other sources that include the internet and written hospital material are also used with varying degrees of effectiveness to deliver information.The provision of quality information in a timely and effective manner cannot be taken for granted. Access to appropriate information resources can be impeded because of poorly designed information material, inadequate communication, ineffective signposting, resource constraints and lack of knowledge/comprehension on the part of frontline health-care workers dealing with the patient. Radiation therapists are encouraged to be advocates for their patients’ information needs and to be involved in initiatives that will improve the quality, dissemination and efficacy of information.

scholarly journals Understanding and information needs of cancer patients regarding treatment‐focused genomic testing: A systematic review

2020 ◽  
Vol 29 (4) ◽  
pp. 632-638 ◽  
Author(s):  
Kamil Wolyniec ◽  
Jessica Sharp ◽  
Smaro Lazarakis ◽  
Linda Mileshkin ◽  
Penelope Schofield
Keyword(s):  
Systematic Review ◽  
Cancer Patients ◽  
Information Needs ◽  
Genomic Testing

scholarly journals The extent to which cancer patients trust in cancer-related online information: a systematic review

PeerJ ◽  
2019 ◽  
Vol 7 ◽  
pp. e7634 ◽  
Author(s):  
Lukas Lange ◽  
Mona Leandra Peikert ◽  
Christiane Bleich ◽  
Holger Schulz
Keyword(s):  
Systematic Review ◽  
Cancer Patients ◽  
Health Care Providers ◽  
Information Needs ◽  
Cancer Information ◽  
The Internet ◽  
Systematic Research ◽  
Online Information ◽  
Care Providers ◽  
Related Information

Background The use of the internet to satisfy information needs is widespread among cancer patients. Patients’ decisions regarding whether to act upon the information they find strongly depend on the trustworthiness of the information and the medium. Patients who are younger, more highly educated and female are more likely to trust online information. The objectives of this systematic review were to examine the extent to which cancer patients trust in cancer-related online information, internet websites as a source of cancer-related information or the internet as a medium of cancer information. Methods A systematic review was conducted using five databases (PROSPERO registration number: CRD42017070190). Studies of any kind were included if they measured cancer patients’ trust in online health information. Study quality was assessed using the Research Triangle Institute (RTI) item bank. A narrative synthesis was undertaken to examine the included studies. Results Of the 7,314 citations obtained by the search, seven cross-sectional studies were included in the synthesis. A total of 1,054 patients reported having some or a great deal of trust in online cancer information; 154 patients reported moderately trusting such information; and 833 patients reported having no or little trust in online cancer information, internet websites as a source of cancer-related information or the internet as a medium of cancer-related information. Two of the seven studies reported between group comparisons for the above-stated patient characteristics. The methodological quality of the included studies was diverse. Conclusion The results of the included studies indicates that approximately half of cancer patients appear to trust cancer-specific online information, internet websites as a source of cancer-related information or the internet as an information medium. However, the small number of included studies, high heterogeneity of participants, methods and outcomes calls for further systematic research. It is important to understand that cancer patients do and will increasingly use trusted cancer information websites to search for information concerning their disease. Therefore, physicians and other health care providers should provide more support and advice to these patients.

African-American and caucasian female cancer patients’ cancer and treatment information needs and preferred information sources

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9073-9073
Author(s):  
R. K. Matsuyama ◽  
C. Grange ◽  
L. J. Lyckholm ◽  
T. J. Smith
Keyword(s):  
African American ◽  
African Americans ◽  
Cancer Patients ◽  
Information Needs ◽  
Information Sources ◽  
Healthcare Providers ◽  
The Internet ◽  
Sources Of Information ◽  
Female Cancer Patients ◽  
Caucasian Female

9073 Background: Patients need information to maximize access to appropriate care, make informed decisions about treatment and communicate with their physicians and other healthcare providers. This study examined information needs related to cancer care and preferred information sources across ethnicities. Methods: A cross-sectional telephone survey was conducted with a random sample of 107 African-American and Caucasian female cancer patients from a university-affiliated cancer clinic. Descriptive analyses characterize patient demographics and information preferences. Multiple logistic regression tested variations in preferences by ethnicity. Results: There were significant differences in what African-American and Caucasian cancer patients considered their primary sources of information about their cancer and treatment. More African-Americans (36%) than Caucasians (9%) said they go to healthcare providers other than their physicians (e.g., nurses, nursing assistants, p=0.002) and use the library (14% vs. 7%) for information about their disease and treatment (p=0.002). Caucasian patients more often said they go to physicians (61% vs. 40%, p<0.01) or the internet (23% vs. 10%, p=0.04) for their information. More African-Americans (84%) than Caucasians (59%) rated information about counseling for emotional support as extremely important (p<0.01) and rated information about issues such as transportation and legal advice as extremely important (75% vs. 55%, p=0.05). There were no differences between ethnicities in desire for information about disease, treatment, side effects, and chances of getting better. Conclusions: All patients desired accurate and comprehensive information about their disease, prognosis and treatment. Significant differences were found between African-Americans and Caucasians in type and means of information. African-American patients were more likely to obtain information from providers other than physicians, and Caucasians were more likely to use the internet. These findings have implications for training professionals and developing programs to provide information to patients about their cancer treatment. No significant financial relationships to disclose.

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