8 research outputs found

    Men’s perspectives of prostate cancer screening: A systematic review of qualitative studies

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    <div><p>Background</p><p>Prostate cancer is the most commonly diagnosed non-skin cancer in men. Screening for prostate cancer is widely accepted; however concerns regarding the harms outweighing the benefits of screening exist. Although patient’s play a pivotal role in the decision making process, men may not be aware of the controversies regarding prostate cancer screening. Therefore we aimed to describe men’s attitudes, beliefs and experiences of prostate cancer screening.</p><p>Methods</p><p>Systematic review and thematic synthesis of qualitative studies on men’s perspectives of prostate cancer screening. Electronic databases and reference lists were searched to October 2016.</p><p>Findings</p><p>Sixty studies involving 3,029 men aged from 18–89 years, who had been screened for prostate cancer by Prostate Specific Antigen (PSA) or Digital Rectal Examination (DRE) and not screened, across eight countries were included. Five themes were identified: Social prompting (trusting professional opinion, motivation from family and friends, proximity and prominence of cancer); gaining decisional confidence (overcoming fears, survival imperative, peace of mind, mental preparation, prioritising wellbeing); preserving masculinity (bodily invasion, losing sexuality, threatening manhood, medical avoidance); avoiding the unknown and uncertainties (taboo of cancer-related death, lacking tangible cause, physiological and symptomatic obscurity, ambiguity of the procedure, confusing controversies); and prohibitive costs.</p><p>Conclusions</p><p>Men are willing to participate in prostate cancer screening to prevent cancer and gain reassurance about their health, particularly when supported or prompted by their social networks or healthcare providers. However, to do so they needed to mentally overcome fears of losing their masculinity and accept the intrusiveness of screening, the ambiguities about the necessity and the potential for substantial costs. Addressing the concerns and priorities of men may facilitate informed decisions about prostate cancer screening and improve patient satisfaction and outcomes.</p></div

    Validation of a patient-reported outcome measure for fatigue in patients receiving hemodialysis: the SONG-HD Fatigue instrument

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    Background: Fatigue is a very common and debilitating symptom and identified by patients as a critically important core outcome to be included in all trials involving patients receiving hemodialysis. A valid, standardized measure for fatigue is needed to yield meaningful and relevant evidence about this outcome. Objectives: To validate a core patient-reported outcome measure (PROM) for fatigue in hemodialysis. Design: A longitudinal cohort study was conducted to assess the validity and reliability of a new fatigue measure (SONG-HD Fatigue).Eligible and consenting patients completed the measure at three time points: baseline, a week later and twelve days following the second time point. Cronbach’s α and Intraclass correlation coefficient were calculated to assess internal consistency and Spearman’s rho was used to assess convergent validity. Confirmatory factor analysis was also conducted.Setting: Hemodialysis units in the United Kingdom, Australia and Romania participated in this study.Participants: Adult patients aged 18 years and over, English-Speaking, and receiving maintenance hemodialysis were eligible to participate.Measurements: SONG-HD Fatigue, visual analogue scale for fatigue, 12-Item Short Form survey, Functional Assessment of Chronic Illness Therapy-Fatigue were used.Results: In total, 485 participants completed the study across the United Kingdom, Australia, and Romania. Psychometric assessment demonstrated that the SONG-HD Fatigue is internally consistent (Cronbach’s α =0.81- 0.86) and stable over a one-week period (Intraclass correlation coefficient =0.68-74). The measure demonstrated convergence with Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) and had moderate correlations with other measures that assessed related but not the same concept (12-Item Short Form Survey and Visual Analogue Scale). Confirmatory factor analysis supported the one-factor model. Conclusions: The SONG-HD Fatigue appears to be a reliable and valid measure to be used in trials involving patients receiving hemodialysis. </div

    A Core Outcome Set for Trials in Glomerular Disease

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    Background and objectives Outcomes reported in trials in adults with glomerular disease are often selected with minimal patient input, are heterogeneous, and may not be relevant for clinical decision making. The Standardized Outcomes in Nephrology–Glomerular Disease (SONG-GD) initiative aimed to establish a core outcome set to help ensure that outcomes of critical importance to patients, care partners, and clinicians are consistently reported.Design, setting, participants, and measurements We convened two 1.5-hour workshops in Melbourne, Australia, and Washington, DC, United States. Attendees were identified purposively with 50 patients/care partners and 88 health professionals from 19 countries; 51% were female. Patients and care partners were from the United States, Australia, and Canada, and had experience of a glomerular disease with systemic features (n=9), kidney-limited nephrotic disease (n=9), or other kidney-limited glomerular disease (n=8). Attendees reviewed the results of the SONG-GD Delphi survey and aims of the workshop and then discussed potential core outcomes and their implementation in trials among moderated breakout groups of eight to 12 people from diverse backgrounds. Transcripts of discussions were analyzed thematically.Results Three themes were identified that supported the proposed core outcomes: limiting disease progression, stability and control, and ensuring universal relevance (i.e., applicable across diverse populations and settings). The fourth theme, preparedness for implementation, included engaging with funders and regulators, establishing reliable and validated measures, and leveraging existing endorsements for patient-reported outcomes.Conclusions Workshop themes demonstrated support for kidney function, disease activity, death, life participation, and cardiovascular disease, and these were established as the core outcomes for trials in adults with glomerular disease. Future work is needed to establish the core measures for each domain, with funders and regulators central to the uptake of the core outcome set in trials.</div
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