Development and Pilot-Testing of a Patient Decision-Making Aid for Nutrition in Age-Related Macular Degeneration.

Objective: We described the development and pilot-testing of an application based patient decision-making aid (PDA) for nutrition in age-related macular degeneration (AMD). Alpha-testing and beta-testing were performed to explore the PDA's usability, acceptability, and comprehensibility in the design stage and in "real-life" conditions. Methods: A nutrition PDA was developed in this study by a multidisciplinary steering committee that consisted of ophthalmologists, nurses, nutritionists, and methodologists using a systematic development process. The PDA was based on a smartphone native installation and a free-to-use app. First, based on information from literature reviews and focus group interviews for needs assessment, we developed a decision aid prototype. Second, we conducted the alpha testing to explore the acceptability, usability, and comprehensibility of the PDA prototype among 18 AMD patients. Third, a before/after study was conducted to assess changes in the attitudes, risk perceptions, intentions, knowledge, decisional conflicts, and decision self-efficacy of 33 AMD patients. Results: The alpha test proved that the nutrition PDA is acceptable and usable. In the beta test, after the AMD participants used the PDA, their scores for knowledge [mean = 13.3, standard deviation (SD) = 2.92], attitude (mean = 18.97, SD = 2.19), decision self-efficacy (mean = 23.94, SD = 6.04), and preparation significantly increased (mean = 26.30, SD = 4.90), and their score for decisional conflict significantly decreased (mean = 10.15, SD = 3.66). There was no significant difference in anxiety (mean = 2.64, SD = 1.08) before and after the use of the PDA. The mean score in the system usability scale was above 70 (mean = 72.61; SD = 5.38), which indicates the good usability of the PDA. With regard to the PDA acceptability, the scores for satisfaction with its comprehensibility, satisfaction with its attractiveness, and satisfaction with its emotional support were 5.49 (SD = 1.03), 5.30 (SD = 1.40), and 4.91(SD = 1.07), respectively, which show its adequate acceptability. Conclusion: Our study showed that the nutrition PDA was an acceptable and suitable instrument for AMD patients and fit the values of all its stakeholders. This study is an important step in supporting shared decision-making, which has the potential to provide a more patient-centered and value-based nutrition health system for individuals with different types of AMD.

Predictors of health-related quality of life in Chinese patients receiving treatment for neovascular age-related macular degeneration: a prospective longitudinal study.

BACKGROUND: Age-related macular degeneration (AMD) is currently the leading cause of irreversible visual impairment in developed countries and seriously affects the health-related quality of life (HRQoL) of patients. However, the majority of the research in this area employs cross-sectional design; longitudinal research investigating changes in HRQoL and influencing factors is limited. The aim of this study was to use a longitudinal study design to investigate descriptive trends in HRQoL and their predictive factors in Chinese AMD patients receiving treatment with vascular endothelial growth factor inhibitors (anti-VEGF) at baseline and follow-ups. METHODS: In a sample of 142 AMD patients from the outpatient clinic of the Southwest Eye Hospital, a tertiary major hospital in the southwest of China, each patient completed a self-administered questionnaire assessing demographics, clinical features, HRQoL, depression, anxiety, coping style, social support, and self-efficacy at baseline and at 1-, 3-, 6-, and 12-month follow-up appointments. RESULTS: The total score of HRQoL fluctuated, with the highest score at the 6-month follow-up and the lowest score at baseline. Multivariable linear regression showed the predictors of HRQoL are best-corrected visual acuity (BCVA), income level, depression, and visual acuity (VA) of the treated eye at baseline; BCVA, income, and depression at the 1-month follow-up; duration, area of residence, gender, VA of the treated eye, BCVA, income, anxiety, social support, self-efficacy, and depression at the 3-month follow-up; gender, BCVA, income, anxiety, social support, self-efficacy, depression, negative coping, and positive coping at the 6-month follow-up; and BCVA, social support, self-efficacy, and depression at the 12-month follow-up. CONCLUSIONS: The HRQoL and its predictive factors in Chinese AMD patients receiving anti-VEGF treatment fluctuated over time. It is suggested that medical staff should get more information when planning precise care for improving patients' HRQoL.

Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China.

OBJECTIVES: This study aimed to investigate the experience of patients with wet age-related macular degeneration (wAMD) in treatment decision-making process. DESIGN: A descriptive qualitative study was designed by using semistructured interviews, and the data analysis was conducted with the thematic analysis approach. PARTICIPANTS AND SETTING: A convenient and purposive sample of 21 participants diagnosed with wAMD was recruited from May 2018 to September 2018. The study was conducted in the Eye Clinic of Southwest Hospital of Army Medical University in Chongqing located in the southwest of China. RESULTS: The mean age of the participants was 64.48 years (ranging 50-81 years), and the duration of the disease ranged from 6 months to 48 months. Four major themes were identified from the original data analysis. These themes included facing the darkness (choosing from light and darkness and living in pain), constraints on decision making (doctor-oriented decision making, inadequacy of options and time), weighing alternatives (family influence, financial burden and maintaining social function) and decision-making support (professional decision-making assistance and peer support). CONCLUSION: This is a qualitative study attempting to explore the patient experience of treatment decision making for wAMD disease in China. Previous literature has focused on treatment effect and symptoms, rather than the individual experience and the wide contexts from a sociocultural perspective. Further studies, such as cross-sectional studies, can be used to describe the status and determine the influencing factors of decision0making process, so as to develop an impact factor model of decision making and to formulate an intervention for patients with wAMD.

Domains of health-related quality of life in age-related macular degeneration: a qualitative study in the Chinese cultural context.

OBJECTIVE: To explore which areas of health-related quality of life were affected in Chinese patients, and to identify whether the areas are well covered by validated questionnaires. DESIGN: A qualitative study based on semistructured interviews was conducted. A qualitative thematic analysis following the approach of Colaizzi was used to analyse the interview data for significant statements and phrases. The themes and subthemes organised from the analysis were then compared by using the following current instruments: National Eye Institute Visual Function Questionnaire (NEI-VFQ-25), Macular Disease Quality of life Questionnaire (MacDQoL) and Low-Luminance Questionnaire (LLD). PARTICIPANTS AND SETTING: Twenty-one patients with age-related macular degeneration were recruited from the eye clinic of Southwest Eye Hospital in Chongqing, mainland China. RESULTS: The mean age of the participants was 69.8 years (range 57-82 years) and the duration of the disease ranged from 3 months to 6 years. The qualitative analysis revealed nine important domains including symptoms, difficulties with daily activities, depending on others, depression and uncertainty, optimism and hope, social isolation, role change, family support and financial burden. However, all the three questionnaires were insufficient to capture the full extent of quality of life issues of Chinese patients with AMD, and MacDQoL covered more domains when compared with NEI-VFQ-25 and LLD. CONCLUSION: The domains of concepts important to people with AMD in the Chinese culture are not fully represented in the three widely used questionnaires. Nine important domains were identified for the assessment of quality of life and should be considered when assessing the impact of AMD on Chinese individuals. Further studies are needed to develop an AMD quality of life questionnaire, better tailored to the needs and culture of Chinese patients.