Background Idiopathic intracranial hypertension (IIH) is characterized by increased intracranial pressure without evidence of a tumor or any other underlying cause. Headache and visual disturbances are frequent complaints of IIH patients, but little is known about other symptoms. In this study, we evaluated the patients’ perspective on the burden of IIH. Methods For this cross-sectional study, we developed an online survey for patients with IIH containing standardized evaluations of headache (HIT-6), sleep (PROMIS Sleep Disturbance Scale) and depression (MDI) in relation to BMI, lumbar puncture opening pressure (LP OP) and treatment. Results Between December 2019 and February 2020, 306 patients completed the survey. 285 (93 %) were female, mean age was 36.6 years (± 10.8), mean BMI 34.2 (± 7.3) and mean LP OP at diagnosis was 37.8 cmH2O (± 9.5). 219 (72 %) of the participants were obese (BMI ≥ 30); 251 (82 %) reported severe impacting headaches, 140 (46 %) were suffering from sleep disturbances and 169 (56 %) from depression. Higher MDI scores correlated with higher BMI and increased sleep disturbances. Patients with a normalized LP opening pressure reported less headaches, less sleep disturbances and less depression than those with a constantly elevated opening pressure. Conclusions In addition to headaches and visual disturbances, sleep disturbances and depression are frequent symptoms in IIH and contribute to the patients’ burden. Structured questionnaires can help to identify IIH patients’ needs and can lead to personalized and better treatment.
Background: Idiopathic intracranial hypertension (IIH) is characterized by increased intracranial pressure without evidence of a tumor or any other underlying cause. Headache and visual disturbances are frequent complaints of IIH patients, but little is known about other symptoms. In this study, we evaluated the patients’ perspective on the burden of IIH. Methods: For this cross-sectional study, we developed an online survey for patients with IIH containing standardized evaluations of headache (HIT-6), sleep (PROMIS Sleep Disturbance Scale) and depression (MDI) in relation to BMI, lumbar puncture opening pressure (LP OP) and treatment. Results: Between December 2019 and February 2020, 306 patients completed the survey. 285 (93%) were female, mean age was 36.6 years (± 10.8), mean BMI 34.2 (± 7.3) and mean LP OP at diagnosis was 37.8 cmH2O (± 9.5). 219 (72%) of the participants were obese (BMI ≥ 30); 251 (82%) reported severe impacting headaches, 140 (46%) were suffering from sleep disturbances and 169 (56%) from depression. Higher MDI scores correlated with higher BMI and increased sleep disturbances. Patients with a normalized LP opening pressure reported less headaches, less sleep disturbances and less depression than those with a constantly elevated opening pressure. Conclusion: In addition to headaches and visual disturbances, sleep disturbances and depression are frequent symptoms in IIH and contribute to the patients’ burden. Structured questionnaires can help to identify IIH patients’ needs and can lead to personalized and better treatment.
Zusammenfassung Einleitung Retinale arterielle Verschlüsse (RAV) führen bei betroffenen Patienten häufig zu einer dramatischen und irreversiblen Visusreduktion. Bis dato existiert keine evidenzbasierte Standardtherapie. Die systemische Lysetherapie kann nach der Leitlinie zu retinalen arteriellen Verschlüssen der DOG, RG und BVA bis zu einem Zeitfenster von 4 h 30 min angewendet werden. Methoden Wir berichten über 2 Patienten, bei denen ein RAV im Zeitfenster mit einer intravenösen Lysetherapie behandelt wurde. Ergebnisse Bei Patient 1 wurde eine systemische Lysetherapie bei einem Verschluss der A. temporalis inferior 4 h 15 min nach Symptombeginn angewendet. Unmittelbar im Anschluss an die Therapie berichtete der Patient von einer deutlichen Symptombesserung. Drei Monate nach der Therapie bestand eine gute retinale Funktion bei dezenter Atrophie der neurosensorischen Netzhaut. Bei Patient 2 kam es 2 h 30 min nach Symptombeginn bei einem Verschluss der A. temporalis inferior zu einer weiteren Verschlechterung des Visus auf Lichtscheinwahrnehmung mit Zeichen eines Zentralarterienverschlusses (ZAV). Eine notfallmäßige Lysetherapie, die 3 h später durchgeführt wurde, ergab eine deutliche Visusbesserung mit Erhalt des Gesichtsfeldes im inferioren Bereich. Bei beiden Patienten kam es unmittelbar im Anschluss an die Lysetherapie zu einer deutlichen Befundbesserung: Patient 1, rechtes Auge: BCVA initial: 0,5; BCVA 3 Tage nach Lysetherapie: 1,0; keine Defekte im Goldmann-Gesichtsfeld. Patient 2, linkes Auge: BCVA initial: 0,4; dann beobachteter Visusabfall auf Lichtscheinwahrnehmung, BCVA 4 Wochen nach Lysetherapie: 0,6. Schlussfolgerung Zwei Patienten mit akuten arteriellen retinalen Verschlüssen konnten mit einer systemischen Lysetherapie erfolgreich behandelt werden.
Background: Idiopathic intracranial hypertension (IIH) is characterized by increased intracranial pressure without evidence of a tumor or any other underlying cause. Headache and visual disturbances are frequent complaints of IIH patients, but little is known about other symptoms. In this study, we evaluated the patients’ perspective on the burden of IIH. Methods: For this cross-sectional study, we developed an online survey for patients with IIH containing standardized evaluations of headache (HIT-6), sleep (PROMIS Sleep Disturbance Scale) and depression (MDI) in relation to BMI, lumbar puncture opening pressure (LP OP) and treatment. Results: Between December 2019 and February 2020, 306 patients completed the survey. 285 (93%) were female, mean age was 36.6 years (± 10.8), mean BMI 34.2 (± 7.3) and mean LP OP at diagnosis was 37.8 cmH2O (± 9.5). 219 (72%) of the participants were obese (BMI ≥ 30); 251 (82%) reported severe impacting headaches, 140 (46%) were suffering from sleep disturbances and 169 (56%) from depression. Higher MDI scores correlated with higher BMI and increased sleep disturbances. Patients with a normalized LP opening pressure reported less headaches, less sleep disturbances and less depression than those with a constantly elevated opening pressure. Conclusion: In addition to headaches and visual disturbances, sleep disturbances and depression are frequent symptoms in IIH and contribute to the patients’ burden. Structured questionnaires can help to identify IIH patients’ needs and can lead to personalized and better treatment.
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