The patient experience of diagnostic error
rmsbell at ESEDONA.NET
Sat Oct 19 23:00:04 UTC 2013
Good luck with your big challenge. You have a wonderful opportunity to clarify the length to correct diagnosis and other things for some of the rarer condtions.
Mis-diagnosis of more common conditions such as ovarian and colon cancer may be more difficult for you if the prognosis is poor. To improve your numbers a survey a number of various specialists asking approximately how many missed diagnoses they see in a year might just help. That data alone would be valuable
Myasthenia gravis, Crohn's disease, Factor V Leidin abnormality, and MAC infections in older slim caucasian women come to mind. Speaking to some of the prestigious referral clinics and consultants/specialists there might Identify, with several conditions, enough patients to undertake surveys. I would have thought the patient response would have been related to the time to diagnosis, the severity of the condition, and improvements if there was a cure, or at least treatment, to relieve symptoms.
The other thoughts that come to mind is finding the patients, if alive, satsfying research approval committees, and complying with patient confidentiality regulations.
A big challenge.
There is, I believe the rare disease Organization and a number of support websites. Some centers also have registers for rarer conditions. Pyridoxine dependent epilepsy comes to mind. A condition that is often missed. Here one would be dealing with parents of children.
Perhaps chart reviewing is the way to go.
Somehow, I cannot get my thoughts around your whole project with the idea of having a satisfactory conclusion.
Sent from my iPad
On Oct 19, 2013, at 5:01 AM, "Siggs, Tim" <ts228 at LEICESTER.AC.UK> wrote:
> Good afternoon all,
> I am a Clinical Psychology trainee at the University of Leicester, UK, with an interest in Diagnostic Error and am conducting research into this area for my doctoral thesis. As a clinical psychologist to be,I am particularly interested in the patient experience of diagnostic error with a view to understand the implications of either experiencing, or perceiving the experience of, a diagnostic error with reference to future health behaviours in patients with chronic illnesses e.g. self management of a chronic condition, adjustment, treatment adherence etc. I have followed this listserv for a number of months and have found it to be an interesting and insightful source of topical information, thank you all.
> I am writing today to ask for thoughts and suggestions regarding my research both generally and for a specific question. Firstly there appears to be a lack of published studies exploring the depth of experiencing diagnostic error from a patient perspective, there are several studies looking at adverse events as a whole which include diagnostic error within them (e.g. Elder et al., 2005; Entwistle et al., 2010; Kistler et al., 2010; Kuzel et al., 2004; Mazor et al., 2012; Molassiotis et al., 2009; Ocloo, 2010), but do not offer specification of the diagnostic error experience in itself, and I believe that the impact may be very different for diagnostic error. I feel that illuminating this perspective may help to address the psychological and emotional impact of diagnostic error such as that which can present in a medical psychology department, and this knowledge may also inform ideas regarding the process of diagnostic error from the patient's perspective. So my question to ask is does anyone know of any studies, particularly qualitative, that examine the patient experience of diagnostic error or have any particular thoughts on this topic area? In particular I'm interested to know if there are any identified (evidence based?) approaches to supporting patients who have experienced diagnostic error anyone is aware of?
> Having searched much of the literature I am cognizant of the moves to bring the patient into the patient safety process and also diagnostic error and hope that my proposed research can add to this. Any thoughts or ideas you may have are welcomed.
> Many Thanks
> Tim Siggs
> Trainee Clinical Psychologist
> University of Leicester
> Moderator: Lorri Zipperer Lorri at ZPM1.com, Communication co-chair, Society for Improving Diagnosis in Medicine
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