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.
12-item QOLIH questionnaire validated for assessing quality of life in idiopathic intracranial hypertensionHow do you measure the hidden toll of a rare brain condition? A new questionnaire captures the daily struggle
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Key Takeaway
Use the validated 12-item QOLIH questionnaire to assess quality of life in patients with idiopathic intracranial hypertension.
This cross-sectional study aimed to develop and validate an idiopathic intracranial hypertension (IIH)-specific quality of life (QOL) assessment tool. The study was conducted on 146 Egyptian and 156 Turkish patients with IIH. Researchers created a 14-item questionnaire, the Quality of Life in IIH patients questionnaire (QOLIH), with items hypothesized into two domains: activities of daily living (ADL) (items Q1-7 and Q12) and psycho-cognitive function (items Q8-11, Q13, Q14). To assess convergent validity, the study 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). Confirmatory factor analysis revealed that standardized factor loadings were generally acceptable (>0.60) for items Q1-12. However, items Q13 and Q14 consistently displayed weak loadings (<0.60) and were subsequently removed. The final 12-item questionnaire demonstrated acceptable convergent validity with the other QOL measures. The internal consistency of the final questionnaire was high, with Cronbach's alpha values > 0.7. The final Arabic and Turkish versions of the QOLIH questionnaire consist of 12 items. The study concludes that both versions are valid and reliable tools for assessing QOL in IIH patients.
What this means for you:
A new 12-question tool reliably measures how IIH disrupts daily life and mental well-being for patients. More on Hypertension
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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.
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