Development and Validation of Quality of Life in Idiopathic Intracranial Hypertension (QOLIH) questionnaire

Background Poor 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. Methods This 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). Results Confirmatory factor analysis (CFA) revealed that standardized factor loadings were generally acceptable (>0.60) for Q1-12. However, Q13 and Q14 consistently displayed weak loadings (<0.40), suggesting their removal. Cronbach’s Alpha for the total score of the QOLIH questionnaire (Q1–12) in the Egyptian patients was 0.940, and in the Turkish patients, it was 0.938, indicating excellent internal consistency. There were statistically significant correlations of a strong degree between QOLIH total score and HIT-6, SF-12, and LVQOL total scores in Egyptian and Turkish patients ( r coef. > 0.7). Conclusion The 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.