Article

Access to Information Sources and Treatment Considerations Among Men With Local Stage Prostate Cancer

University of Washington Seattle, Seattle, Washington, United States
Urology (Impact Factor: 2.19). 08/2009; 74(3):509-15. DOI: 10.1016/j.urology.2009.01.090
Source: PubMed

ABSTRACT

To determine the role of information sources in the treatment decision-making process of men diagnosed with local stage prostate cancer. Diagnosed men have access to a large number of information sources about therapy, including print and broadcast media, the Internet, books, and friends with the disease.
Prospective survey of men with local stage prostate cancer in 3 geographically separate regions was carried out. Most men were surveyed after diagnosis but before starting therapy.
On average, men with local prostate cancer consulted nearly 5 separate sources of information before treatment. The most common source of information was the patient's physician (97%), followed by lay-literature (pamphlets, videos) (76%), other health professionals (71%), friends with prostate cancer (67%), and the Internet (58%). Most men rated the sources they consulted as helpful. Consulting the Internet was associated with considering more treatment options. Several information sources were significantly associated with considering particular treatments, but the magnitude of association was small in relation to patient age, comorbidity, and Gleason score. More than 70% of men stated that they were considering or planning only one type of therapy.
Men with local stage prostate cancer consult a wide range of information sources. Nonphysician information sources appear to influence their treatment considerations, but to a smaller degree than clinical factors.

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    • "Patient decisions are influenced by a variety of factors, including physician advice, patient perception of PC, QoL considerations, and advice from friends and family members [11–15]. A growing number of men now also utilize the internet and online support groups as an additional resource for seeking information and expressing opinions about the treatment decision-making process [16]. The current study builds upon the contributions from prior qualitative studies by collecting and evaluating anonymized, free-form data through NLP from a large number of ICs on the subject of WW and AS. "
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    ABSTRACT: Qualitative research aimed at identifying patient acceptance of active surveillance (AS) has been identified as a public health research priority. The primary objective of this study was to determine if analysis of a large-sample of anonymous internet conversations (ICs) could be utilized to identify unmet public needs regarding AS. English-language ICs regarding prostate cancer (PC) treatment with AS from 2002-12 were identified using a novel internet search methodology. Web spiders were developed to mine, aggregate, and analyze content from the world-wide-web for ICs centered on AS. Collection of ICs was not restricted to any specific geographic region of origin. NLP was used to evaluate content and perform a sentiment analysis. Conversations were scored as positive, negative, or neutral. A sentiment index (SI) was subsequently calculated according to the following formula to compare temporal trends in public sentiment towards AS: [(# Positive IC/#Total IC) - (#Negative IC/#Total IC) x 100]. A total of 464 ICs were identified. Sentiment increased from -13 to +2 over the study period. The increase sentiment has been driven by increased patient emphasis on quality-of-life factors and endorsement of AS by national medical organizations. Unmet needs identified in these ICs include: a gap between quantitative data regarding long-term outcomes with AS vs. conventional treatments, desire for treatment information from an unbiased specialist, and absence of public role models managed with AS. This study demonstrates the potential utility of online patient communications to provide insight into patient preferences and decision-making. Based on our findings, we recommend that multidisciplinary clinics consider including an unbiased specialist to present treatment options and that future decision tools for AS include quantitative data regarding outcomes after AS.
    Full-text · Article · Sep 2013 · PLoS ONE
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    • "The timing of education about treatment options may be critical as prior studies have consistently observed that anxiety about the cancer diagnosis often interferes with objective processing of information about individual risks and benefits of treatment [10,11]. Two recent studies of treatment decision making observed that many patients arrive at a treatment decision almost immediately after being diagnosed, with 65% of patients considering only a single option [12,13]. "
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    ABSTRACT: Background A small pre-test study was conducted to ascertain potential harm and anxiety associated with distributing information about possible cancer treatment options at the time of biopsy, prior to knowledge about a definitive cancer diagnosis. Priming men about the availability of multiple options before they have a confirmed diagnosis may be an opportunity to engage patients in more informed decision-making. Methods Men with an elevated PSA test or suspicious Digital Rectal Examination (DRE) who were referred to a urology clinic for a biopsy were randomized to receive either the clinic’s usual care (UC) biopsy instruction sheet (n = 11) or a pre-biopsy educational (ED) packet containing the biopsy instruction sheet along with a booklet about the biopsy procedure and a prostate cancer treatment decision aid originally written for newly diagnosed men that described in detail possible treatment options (n = 18). Results A total of 62% of men who were approached agreed to be randomized, and 83% of the ED group confirmed they used the materials. Anxiety scores were similar for both groups while awaiting the biopsy procedure, with anxiety scores trending lower in the ED group: 41.2 on a prostate-specific anxiety instrument compared to 51.7 in the UC group (p = 0.13). ED participants reported better overall quality of life while awaiting biopsy compared to the UC group (76.4 vs. 48.5, p = 0.01). The small number of men in the ED group who went on to be diagnosed with cancer reported being better informed about the risks and side effects of each option compared to men diagnosed with cancer in the UC group (p = 0.07). In qualitative discussions, men generally reported they found the pre-biopsy materials to be helpful and indicated having information about possible treatment options reduced their anxiety. However, 2 of 18 men reported they did not want to think about treatment options until after they knew their biopsy results. Conclusions In this small sample offering pre-biopsy education about potential treatment options was generally well received by patients, appeared to be beneficial to men who went on to be diagnosed, and did not appear to increase anxiety unnecessarily among those who had a negative biopsy.
    Full-text · Article · Feb 2013 · BMC Medical Informatics and Decision Making
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    ABSTRACT: The rise in Internet use for seeking health information raises questions about the role the Internet may play in how patients make medical decisions. To examine Internet use and perceived importance of different sources of information by patients making 9 specific medical decisions covering prescription medication initiation, cancer screening, and elective surgery. National sample of US adults identified by random-digit dialing. Cross-sectional survey conducted between November 2006 and May 2007. The final sample comprised 2575 English-speaking US adults aged 40 y and older who had either undergone 1 of 9 medical procedures or tests or talked with a health care provider about doing so during the previous 2 y. Participants indicated if they or other family members used the Internet to seek information related to each of the specific medical decisions and rated how important the health care provider, the Internet (if used), family and friends, and the media (newspapers, magazines, and television) were in providing information to help make the medical decision. Use of the Internet for information related to specific decisions among adults 40 y and older was generally low (28%) but varied across decisions, from 17% for breast cancer screening to 48% for hip/knee replacement. Internet use was higher at younger ages, rising from 14% among those aged 70 y and older to 38% for those aged 40 to 49 y. Internet users consistently rated health care providers as the most influential source of information for medical decisions, followed by the Internet, family and friends, and media. Telephone surveys are limited by coverage and nonresponse. The authors excluded health-related Internet use not associated with the 9 target decisions. A minority of patients reported using the Internet to make specific common medical decisions, but use varied widely by type of decision. Perhaps reflecting perceived risk and uncertainty, use was lowest for screening decisions and highest for surgical decisions.
    Preview · Article · Sep 2010 · Medical Decision Making
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