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Patient-Reported Information

By December 4, 2019Commentary

The health care system often relies on patients to provide information, sometimes about symptoms or activities or adherence to treatment plans and sometimes more formally as patient-reported outcomes in research.  Those of you who watched the medical show House know that he always believed patients lied.  While it may not be as extreme as that, there is good reason to be concerned about the accuracy of information provided by patients.  Knowing the frequency of inaccurate information and whether inaccuracy is more prevalent for certain kinds of data could help clinicians and researchers adjust accordingly.  A poster presented at an American Health Association conference discusses this issue in the context of African Americans and heart disease.    (AJMC Poster)   The study looked at responses by 389 patients to a questionnaire designed to identify risk factors for cardiovascular problems.  The average age was 53 and 61% were female.  Patients were asked to self-report any history of certain conditions and their height and weight.  They were also asked about the presence of various risk factors.  47% inaccurately reported at least one risk factor.  21% under-reported hypertension, while 1% over-reported; 25% under-reported hyperlipidemia, while 9% over-reported; 15% under-reported diabetes versus a 1% over-report; and 3% under-reported obesity and less than 1% over-reported that condition.  You can see the tendency to avoid disclosure of factors that might be perceived negatively; part of the usual human tendency to be in denial.  The consequences are also obvious.  If clinicians relied solely on this self-reported information, they would miss many patients with higher risk factors who might need greater attention to management of their conditions to avoid acute exacerbations of heart disease.  So the message to clinicians is that they shouldn’t rely on patient reported information, although it is probably worth collecting, if only to provide teachable moments for patients in regard to the importance of understanding and accurately communicating their health status and history.  And for all of us as patients, we should be aware that not being fully disclosing, even of things we may be embarrassed by or not want to acknowledge, can hinder the ability of our providers to keep us in optimal health.

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  • Archelle Georgiou says:

    Kevin, while the poster conclusion is valid…. the journalist’s conclusion about the poster was not. Patient’s inaccuracy in self-reported risk factors should is not the same as their accuracy in reporting self-reported OUTCOMES which are things like pain, functionality, appetite, mobility etc. Only patients are able to report their symptoms and the experience they have as a result of an medical intervention. Collecting PROMs is an important & valuable element of assessing the quality and impact of care.

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