For people living with idiopathic intracranial hypertension (IIH)—a condition where pressure builds up around the brain—the headaches and vision problems are only part of the story. The condition can quietly chip away at a person's quality of life, affecting everything from daily tasks to mental sharpness. Until now, doctors haven't had a specific tool to measure that full impact. This work aimed to create one. Researchers worked with 302 patients from Egypt and Turkey to develop a simple questionnaire called QOLIH. They tested it against other standard health surveys to make sure it was measuring what it should. The final version is just 12 questions, split into two clear areas: how the condition affects your ability to do everyday activities, and how it affects your mood and thinking. The tool proved to be both valid and reliable in both Arabic and Turkish. This means doctors now have a targeted, trustworthy way to ask, 'How is this condition really affecting your life?' It turns the invisible burden of IIH into something that can be seen, discussed, and hopefully addressed.
How do you measure the hidden toll of a rare brain condition? A new questionnaire captures the daily struggle.
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A new 12-question tool reliably measures how IIH disrupts daily life and mental well-being for patients. What this means for you:
A new 12-question tool reliably measures how IIH disrupts daily life and mental well-being for patients. View Original Abstract ↓
BackgroundPoor quality of life (QOL) has emerged as a key morbidity in patients with idiopathic intracranial hypertension (IIH). This work aimed to develop and validate an IIH-specific quality of life assessment tool.MethodsThis cross-sectional study was conducted on 146 Egyptian and 156 Turkish patients with IIH. A 14-item questionnaire was created to assess QOL in those patients; Quality of Life in IIH patients questionnaire (QOLIH). The questionnaire items were hypothesized into two domains: one domain represents activities of daily living (ADL) (Q1-7 and Q12), and the other domain represents psycho-cognitive function (Q8-11, Q13, Q14). To assess the convergent validity of this questionnaire, the following tests were also employed: the Visual Analog Scale (VAS), Headache Impact Test-6 (HIT-6), Short Form-12 Health Survey (SF-12), and Low Vision Quality-of-Life Questionnaire (LVQOL).ResultsConfirmatory factor analysis (CFA) revealed that standardized factor loadings were generally acceptable (>0.60) for Q1-12. However, Q13 and Q14 consistently displayed weak loadings ( 0.7).ConclusionThe final Arabic and Turkish versions of QOLIH questionnaire consist of 12 items. Both versions are valid and reliable tools that can be used in the assessment of QOL in IIH patients.