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What patients want to know about adverse events

Study
Results
Desire for information
Doctors' behaviour
Comment

A reader asked the very pertinent question about what information patients wanted about adverse events of treatment. This is one of those perennial questions for which the answer varies from nothing to everything. A quick search indicated an important paper Bandolier had managed to overlook [1]. It is important because it asked a lot of patients, and because the answer is very clear.

Study


The population was a convenience sample of adults aged 18 years or older attending outpatients clinics, accompanying family, medical students or non-professional employees. Over two weeks individuals in these categories were approached in outpatients and asked to participate in completing a questionnaire. The questionnaire had a number of questions, about demographics, about what patients wanted to know about adverse events of treatment, and how they wanted their doctors to behave in terms of informing patients about adverse events (which were always called side effects in the questionnaire).

Results


Of 2,500 individuals approached, 2,348 (94%) agreed to participate. These were mostly women (61%), and the mean age was 47 years, with a good spread between younger and older age groups, though only 17% were aged over 65 years. These participants had a mean of 14 years of education.

Desire for information


Two questions asked patients to select one answer that reflected their opinion about the information they would want about adverse events of medication. The first of these was preceded by a statement that some adverse events were common, and some rare, but a response was required for all adverse events. The second was preceded by a statement that some adverse events were mild, but some were serious (defined as causing prolonged discomfort, disability, or death), but a response was required for serious adverse events.

For both the choices were as follows:
  1. I want to hear of any side effects from the doctor no matter how rare.
  2. I want to be told if a side effect has occurred in 1 in 100,000 patients.
  3. I want to hear if a side effect has occurred in 1 in 100 patients.
  4. I am not interested in being informed as to side effects.

The results for this question are shown in Figure 1. Over 90% of patients answered that they wanted to know about adverse events (all or serious) if they occurred at a rate of as rare as 1 in 100,000 people.


Figure 1: What patients want to know about adverse events






Doctors' behaviour


Another two questions asked about the behaviour expected of doctors. Overwhelmingly (68%) respondents wanted doctors to give the same information to all their patients rather than using their judgement by withholding information from some. When asked whether doctors were ever justified in withholding information about adverse events, 73% considered that they were not.

Comment


We might choose to ignore these results because they come from Kansas, but it is worth reflecting that this study is not only large, but is probably the only such study we have. It is absolutely clear, that patients want to know about adverse events, and they expect their doctors to level with them. There is considerable analysis of differences between ages or education levels, but these are small compared with the clarity of the answer.

There is a bit of a problem, as most readers will have spotted. First, that adverse event information of the required quantity and quality is simply not available for many medicines. Second, that given the large number of adverse events that occur with any medicines, the average GP consultation will need to be expanded from 10 minutes to an hour or more. Third, as any readers of Bandolier will know, we simply haven't a clue as to how best to convey information about risk in ways that patients will understand.

Ho hum. As Chairman Mao once said (or says he said), the longest journey starts with a single step. And it will be a long journey, because what patients think they know now is miles from reality. A survey of 100 patients admitted on acute medical on call in Dublin [2] indicated that they considered NSAIDs and PPIs to be equally the safest of drugs.

References:

  1. DK Ziegler et al. How much information about adverse events of medication do patients want from physicians? Archives of Internal Medicine 2001 161:706-713.
  2. G Cullen et al. Patients' knowledge of adverse reactions to current medications. British Journal of Clinical pharmacology 2006 62:232-236.

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