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. 2022 Oct;269(10):5466-5473.
doi: 10.1007/s00415-022-11207-7. Epub 2022 Jun 14.

The impact of spontaneous intracranial hypotension on social life and health-related quality of life

Christopher Marvin Jesse  1 , Levin Häni  2   3 , Christian Fung  3 , Christian Thomas Ulrich  4 , Ralph T Schär  2 , Tomas Dobrocky  5 , Eike Immo Piechowiak  5 , Johannes Goldberg  2 , Christoph Schankin  6 , Harri Sintonen  7 , Jürgen Beck  3 , Andreas Raabe  2
Affiliations

The impact of spontaneous intracranial hypotension on social life and health-related quality of life

Christopher Marvin Jesse et al. J Neurol. 2022 Oct.

Abstract

Objective: Spontaneous intracranial hypotension (SIH), which is often caused by a spinal cerebrospinal fluid leak, is an important cause of disabling headaches. Many patients report devastating changes in their quality of life because of their symptoms. This study aimed to evaluate the impact of SIH on patients' social/ working life and health-related quality of life (HRQoL).

Methods: We included consecutive patients with proven SIH treated at our institution from January 2013 to May 2020. Patients were contacted and asked to complete the 15D questionnaire for the collection of HRQoL data and to provide additional information on their social life status.

Results: Of 112 patients, 79 (70.5%) returned the questionnaire and were included in the analysis. Of those, 69 were treated surgically (87.3%), and 10 were managed non-operatively (12.7%). Twenty-five (31.6%) patients reported a severe impact on their partnership, 32 (41.5%) reported a moderate or severe impact on their social life. Forty (54.8%) patients reported sick leave for more than 3 months. The mean 15D score was 0.890 (± 0.114) and significantly impaired compared to an age- and sex-matched general population (p = 0.001), despite treatment. Patients with residual SIH-symptoms (36, 45.6%) had significantly impaired HRQoL compared to those without any residual symptoms (41, 51.9%) (p < 0.001).

Conclusion: SIH had a notable impact on the patients' social life and HRQoL. It caused long periods of incapacity for work, and is therefore, associated with high economic costs. Although all patients were appropriately treated, reduced HRQoL persisted after treatment, underlining the chronic character of this disease.

Keywords: Health-related quality of life; Orthostatic headache; Spinal cerebrospinal fluid leak; Spontaneous intracranial hypotension.

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Conflict of interest statement

Harri Sintonen is the developer of the 15D and obtains royalties from its electronic versions. The other authors report no disclosures relevant to the manuscript.

Figures

Fig. 1
Fig. 1
Flow diagram of patients included in the study
Fig. 2
Fig. 2
Impact of SIH on social life. Patients were asked about the influence of SIH on their relationship with their partner, current health status and social activities
Fig. 3
Fig. 3
Duration of sick leave after onset of symptoms due to SIH (wk: weeks; m: months)
Fig. 4
Fig. 4
The mean 15D score and profile of SIH patients and those of an age- and sex-standardized sample of the general population. Dimensions and level of significance are shown in Table 1
See this image and copyright information in PMC

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