Deciding on PSA-screening – Quality of current consumer information on the Internet
Introduction
Although evidence for the potential effectiveness of PSA-screening in reducing prostate cancer mortality was only recently published1 and population-based prostate cancer screening programs have not been introduced in Europe (yet), increasing numbers of PSA-screening tests have been performed in recent years. In the United States, up to 52% of the men at risk have had one or more PSA measurements,2 and the numbers in Europe are rising.3
Screening for prostate cancer has the potential to reduce prostate cancer mortality at the population level.1 At the individual level, however, screening participation involves an uncertain benefit and the risk of adverse side effects, e.g. unnecessary treatment of inconsequential disease.4 It has become generally accepted that screen invitees should therefore be enabled to make their own individual evaluation of pros and cons and reach an informed decision about uptake. An informed choice or decision has two core characteristics: first, it is based on relevant, good quality information, and second, the resulting choice reflects the decision-maker’s values.5
In PSA-screening the first step is ‘just a blood test’.6 A low PSA result provides reassurance, but a value above the threshold opens the door to a chain of events with risks of disadvantageous effects, such as overdiagnosis, overtreatment, false positive results and biopsy complications. In theory, decisions to continue or stop can be made at every step; in practice it is difficult to refuse additional diagnostic tests and treatment because ‘both patients and physicians may experience strong positive reinforcement for screening. A patient will be grateful for a negative PSA result or a suspicious PSA result followed by negative biopsy results, whereas a positive PSA result followed by a cancer diagnosis makes a patient grateful that the cancer was detected early’.7 Therefore, the first step, i.e. the decision whether or not to have PSA-screening, is decisive. Decision-making about taking this first step may be supported by information, made available by, e.g. ministries of health, cancer societies and hospitals. We will refer to this information as ‘consumer information’ – and not ‘patient information’ – because the men involved, who may consider uptake of PSA-screening, are not patients. Providing clear, accurate information about the risks of any proposed investigation or treatment, presented in a way potential screenees can understand,8 is complex. The uncertainty of the subsequent steps is difficult to communicate9 and disclosure of negative sides of screening may scare away specific groups, e.g. those with a low social economic status (SES), whilst these same groups may have an increased risk of prostate cancer.10 Consider for instance the situation of African-Americans, who are at an increased risk to develop prostate cancer and more often than Caucasian-Americans have a low SES. Still, the whole screening process needs to be addressed to prevent a man from realising after being diagnosed that, in retrospect, ignorance about prostate cancer disease status was his preference after all.
Although not all potential screenees will want to make an individually based choice, according to Irwig and colleagues, still all screenees ‘should be aware of the screening programme and have received and understood an agreed minimum of information about benefits and harms of the procedure’.11 Such an agreed minimum of information, also referred to as ‘core disclosure’, can enable potential screenees to ask relevant questions and also help them to decide whether they want to enter the screening process or not.
We assessed the content of currently available consumer information and the approach taken towards the decision-making process of men who consider uptake of PSA-screening.
Section snippets
Consumer information
In November 2009 consumer information was sought through the Internet by two of the authors (I.K., R.v.d.B.) using the following search terms: ‘PSA patient information’ (+.pdf), ‘prostate screening information’, ‘PSA leaflet’ (+pdf), ‘PSA-screening leaflet PDF’, ‘prostate cancer screening leaflet PDF’. Per search the first 100–150 hits were checked for relevant materials that were targeted at potential consumers, i.e. men who consider uptake of PSA-screening, offered by not-for-profit
Results
Twenty-three materials were included, mainly offered by organisations from the USA (n = 11) and the United Kingdom (n = 7), but also from Canada, the Netherlands, and Australia, see Table 1. The information was released between 2005 and 2009 with number of words ranging from a minimum 450 to almost 6000 words. Eleven materials were released after March 2009.
Discussion
Most materials of not-for-profit organizations supplied adequate information, whilst the variation in both content and lay-out was considerable. We found that the key points of PSA-screening, considered essential when deciding about uptake of screening, were discussed in 19 out of 23 materials. Whilst PSA-screening was not recommended in the majority of cases, the degree of persuasion towards uptake, i.e. the degree of guiding men towards the adoption of PSA-screening, reflected variations in
Conflict of interest statement
None declared.
Acknowledgement
We gratefully acknowledge the Dutch Cancer Society for funding a fellowship for one of the authors (I.K.).
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