Survey on Unbearable Unexplained Complaints
As a general practitioner (GP), you may sometimes experience a feeling of desperation when your patient presents with symptoms, that you are sure are caused by a medical condition, but the diagnosis has still not been found after many specialist referrals. You don’t know what to do next.
A group of GPs and former GPs at Maastricht University has suggested a term to describe this feeling: “unbearable unexplained complaints” (UUC).
The feeling is “unbearable” because the GP is sure that the symptoms are caused by a medical condition and has objective evidence supporting that (such as an abnormal blood test). Most Dutch GPs recognised this feeling when we presented it at the national family medicine congress in November 2019.
It is not surprising that GPs sometimes experience this UUC-feeling, because the population of people with a rare disease is large: about 1 in every 17 patients has a rare disease. Also, there are a lot of rare diseases: about 8000. For these patients, it takes an average of seven years to find the right diagnosis (1, 2).
What should we do when we experience this UUC-feeling? In Maastricht, we are working on a project to develop an effective online search strategy to help GPs diagnose these UUC.
We want to start by finding out how recognisable and useful this feeling is. Unfortunately, the scientific literature does not offer much on this topic. We would therefore like you, as a member of the EGPRN, to answer five questions to help guide our research on this.
The password for this survey is: egprnmember
Please follow the following link to answer our questions:
https://maastrichtuniversity.eu.qualtrics.com/jfe/form/SV_2fy6hiWjy7nNse9
We are very grateful for your help!
Best wishes,
Dr. Erik Stolper (member of the EGPRN)
Prof. Dr. Geert-Jan Dinant
Richard Maes
Literature
- Nguengang Wakap S, Lambert DM, Olry A, Rodwell C, Gueydan C, Lanneau V, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. European Journal of Human Genetics. 2020;28(2):165-73.
- van Leeuwen YD, Höppener PFHM, Kleijkers SFJ, Dinant GJ, Stolper CF. Onuitstaanbaar Onverklaarde Klachten (OOK). Bijblijven. 2019;35(9):21-7.