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. 2021 May 6;10(9):1993.
doi: 10.3390/jcm10091993.

Restless Leg Syndrome Is Underdiagnosed in Hereditary Hemorrhagic Telangiectasia-Results of an Online Survey

Freya Droege  1 , Andreas Stang  2 , Kruthika Thangavelu  3 , Carolin Lueb  1 , Stephan Lang  1 , Michael Xydakis  4 , Urban Geisthoff  3
Affiliations

Restless Leg Syndrome Is Underdiagnosed in Hereditary Hemorrhagic Telangiectasia-Results of an Online Survey

Freya Droege et al. J Clin Med. .

Abstract

Background: Recurrent bleeding in patients with hereditary hemorrhagic telangiectasia (HHT) can lead to chronic iron deficiency anemia (CIDA). Existing research points to CIDA as a contributing factor in restless leg syndrome (RLS). The association between HHT-related symptoms and the prevalence of RLS was analyzed.

Methods: An online survey was conducted whereby the standardized RLS-Diagnostic Index questionnaire (RLS-DI) was supplemented with 82 additional questions relating to HHT.

Results: A total of 474 persons responded to the survey and completed responses for questions pertaining to RLS (mean age: 56 years, 68% females). Per RLS-DI criteria, 48 patients (48/322, 15%; 95% confidence interval (CI): 11-19%) self-identified as having RLS. An analysis of physician-diagnosed RLS and the RLS-DI revealed a relative frequency of RLS in HHT patients of 22% (95% CI: 18-27%). In fact, 8% (25/322; 95% CI: 5-11%) of the HHT patients had RLS which had not been diagnosed before. This equals 35% of the total amount of patients diagnosed with RLS (25/72; 95% CI: 25-46%). HHT patients with a history of gastrointestinal bleeding (prevalence ratio (PR) = 2.70, 95% CI: 1.53-4.77), blood transfusions (PR = 1.90, 95% CI: 1.27-2.86), or iron intake (PR = 2.05, 95% CI: 0.99-4.26) had an increased prevalence of RLS.

Conclusions: Our data suggest that RLS is underdiagnosed in HHT. In addition, physicians should assess CIDA parameters for possible iron supplementation.

Keywords: anemia; chronic iron deficiency; hereditary hemorrhagic telangiectasia; restless leg syndrome.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Geographic data of patients with HHT.
Figure 2
Figure 2
Diagnostic assignment of RLS.
See this image and copyright information in PMC

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