The patients' perspective on the burden of idiopathic intracranial hypertension.

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.

Sonographic assessment of the optic nerve and the central retinal artery in idiopathic intracranial hypertension.

PURPOSE: Transorbital sonography easily detects papilledema and enlarged optic nerve sheath diameters (ONSD) in IIH (idiopathic intracranial hypertension) patients. As the central retinal artery is located within the optic nerve, its hemodynamic properties might be affected by the increased pressure. In this study we assessed the diagnostic usefulness of transorbital sonography in IIH with a special focus on color Doppler imaging of the central retinal artery. IIH patients presented papilledema and enlarged ONSD. ONSD accurately predicted an increased intracranial pressure in IIH (cut-off: 5.8 mm, 81% sensitivity, 80% specificity). 24 h following therapeutic lumbar puncture ONSD diminished significantly, whereas papilledema was not changed. PSV (peak systolic velocity) and Vmean (mean flow velocity) of the central retinal artery were increased in IIH patients compared to controls. PSV accurately predicted an increase of intracranial pressure (cut-off: 11.0 cm/s, 70% sensitivity, 69% specificity). PI (pulsatility index), PSV and Vmean decreased following lumbar puncture. PSV and Vmean decreases were statistically significant for right eyes only in which the values changed to normal. In summary, besides ONSD enlargement and papilledema transbulbar sonography demonstrated an alteration of central retinal artery blood flow in IIH patients. Especially PSV might serve as valuable surrogate marker for intracranial pressure in IIH. Furthermore, the change of intra-individual central retinal arteries PI might be a valuable parameter to demonstrate response to lumbar puncture in IIH patients.

Let's Talk About It: Supporting Family Communication during End-of-Life Care of Pediatric Patients.

BACKGROUND: Communication is key in optimizing medical care when a child is approaching end of life (EOL). Research is yet to establish best practices for how medical teams can guide intrafamily communication (including surviving siblings) when EOL care is underway or anticipated for a pediatric patient. While recommendations regarding how medical teams can facilitate communication between the medical team and the family exist, various barriers may prevent the implementation of these recommendations. OBJECTIVE: This review aims to provide a summary of research-to-date on family and medical provider perceptions of communication during pediatric EOL care. DESIGN: Systematic review. RESULTS: Findings from a review of 65 studies suggest that when a child enters EOL care, many parents try to protect their child and/or themselves by avoiding discussions about death. Despite current recommendations, medical teams often refrain from discussing EOL care with pediatric patients until death is imminent for a variety of reasons (e.g., family factors and discomfort with EOL conversations). Parents consistently report a need for honest complete information, delivered with sensitivity. Pediatric patients often report a preference to be informed of their prognosis, and siblings express a desire to be involved in EOL discussions. CONCLUSIONS: Families may benefit from enhanced communication around EOL planning, both within the family and between the family and medical team. Future research should investigate a potential role for medical teams in supporting intrafamily communication about EOL challenges and should examine how communication between medical teams and families can be facilitated as EOL approaches.