Purpose: To assess how general glaucoma patients understand their disease compared with patients from the Shanghai Glaucoma Club and various influencing factors as well. Shanghai Glaucoma Club was further evaluated to determine its efficacy on its members' understanding and knowledge of glaucoma.
Methods: A total of 301 glaucoma patients in Shanghai Glaucoma Club and 314 general glaucoma patients were investigated by a questionnaire, composed of three parts and consisting of 20 questions. The first part asked questions about 'level of cognition about glaucoma', the second part was about 'compliance of medication and follow-up', and the third part was about 'life style and habit'. Answers were graded on each question and scores were summed up separately for each part and as a total. Differences of scores and influencing effects were analysed using multivariate linear regression (stepwise) between the two groups.
Results: The average total scores of the general glaucoma patients and the glaucoma club members were 19.6 +/- 5.4 and 23.8 +/- 4.0 (t = -11.14 P < 0.01), respectively. After multivariate linear regression adjustment for the effects of age, diagnosis and educational level glaucoma club members still had 3.73 points edge over the general patients.(t = 8.14, P < 0.01). The club was shown to be the strongest positive factor influencing patients' cognition. Patients in Shanghai Glaucoma Club understood the nature and course of glaucoma significantly better than the general glaucoma patients (t = 10.97, P < 0.01) and also lived healthier lives (t = 7.55, P < 0.01). The level of background education was found to be a positive influencing factor although age was negatively correlated with total score. Primary glaucoma patients demonstrated better cognition of their diseases compared with secondary glaucoma patients, and those patients unaware of their type of glaucoma produced lower scores.
Conclusions: This study demonstrated significant differences regarding the basic understanding of glaucoma between two groups: general glaucoma patients and members of the Shanghai Glaucoma Club. Club members presented with better cognition of glaucoma and self-management compared with general glaucoma patients. Therefore, the Shanghai Glaucoma Club is an effective medium to improve patients' knowledge of disease and compliance for medication.