Study On Self-management And Visual-related Quality Of Life Among Patients With Glaucoma

Objective:(1) To explore the lived experience of self-management among people with glaucoma. (2) To develop and test the Glaucoma Self-Management Questionnaire (GSMQ). (3) To describe the self-management of patients with glaucoma and analyze the influencing factors. (4) To investigate the vision-related quality of life in glaucoma patients and identify the predictors.Methods:This study was carried out in two phases, using combined with qualitative and quantitative research method. Patients for each phase were enrolled at Shanghai Eye & ENT hospital. A qualitative design was adopted in the first phase; data was collected using in-depth interviews with 24 patients diagnosed with primary glaucoma. Based on the result of former stage, the second stage included developing the Glaucoma Self-Management Questionnaire (GSMQ) and testing its reliability and validity. The National Eye Institute Visual Function Questionnaire (NEI-VFQ-25) was used for assessing vision-related quality of life. The demographic and disease-related variables were also collected. A total sample of 167 was included during the second stage. Data analyses were performed with SPSS statistical software.Results:(1) The core-themes of self-management experience in patients with glaucoma were demonstrated as life adjustment, body function promotion, and disease management. (2)The results showed that the GSMQ has satisfactory face and content validity, and excellent internal consistency reliability (overall Cronbach's alpha of 0.891). Exploratory factor analysis identified three-factor structure that explained 65.96 % of the variance. (3) Among the three dimensions of GSMQ (scores range from 1 to 4 points), the highest score was the medical management of disease (3.39±0.60), followed by functional health promotion (3.24±0.60), life adjustment (2.80±0.63) was the lowest domain. Some of the demographic factors and disease-related variables affect the behavior of self-management among glaucoma patients. (4) Regarding the visual-related quality of life (score range of 0 to 100 in which higher scores indicate better quality of life), the lowest scores was general health (32.78±23.59), followed by the genera visual (46.35±19.52) and role difficulties (55.54±22.70), the highest score was the dimension of color vision (89.02±20.76), the remaining dimensions' score distributed between 60 to 80. Multiple linear regression analysis indicated that life adjustment, functional health promotion, positive family history, and binocular visual acuity were predictors of visual-related quality of life in glaucoma patients. Conclusion:This study extends a more nuanced understanding of what is like to live with glaucoma. The lived experience of self-management in this population has its particularity. Chinese culture may affect their adaptation. Our results support the 17-item GSMQ as a feasible and valid tool for assessing and representing self-management experiences in glaucoma patients. Our study indicated that the self-management behavior among patients with glaucoma have further room for improvement. Moreover, self-management behavior can predict their visual-related quality of life. Future research should focus on how to integrate self-management skills with routine nursing practice for glaucoma patients.