Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Bian W

PROVIDER: S-EPMC6731856 | biostudies-other | 2019 Sep

REPOSITORIES: biostudies-other

ACCESS DATA

Publications

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

Bian Wei W Wan Junli J Tan Mingqiong M Wu Xiaoqing X Su Jun J Wang Lihua L

BMJ open 20190903 9

<h4>Objectives</h4>This study aimed to investigate the experience of patients with wet age-related macular degeneration (wAMD) in treatment decision-making process.<h4>Design</h4>A descriptive qualitative study was designed by using semistructured interviews, and the data analysis was conducted with the thematic analysis approach.<h4>Participants and setting</h4>A convenient and purposive sample of 21 participants diagnosed with wAMD was recruited from May 2018 to September 2018. The study was c ...[more]

PMID: 31481567

Similar Datasets

Project description:IntroductionTo identify patient preference drivers related to the management of wet age-related macular degeneration (wet AMD).MethodsIn this cross-sectional study, a self-explicated 'conjoint analysis' survey was administered online to eligible patients with wet AMD (receiving anti-vascular endothelial growth factor [VEGF] treatment for at least 12 months) from the USA, Canada, UK, France, Spain, Germany, Italy, Japan, Taiwan, and Australia. The survey consisted of six domains with 21 attributes, which were selected on the basis of a literature review, social media listening, and tele-interviews/discussions with patients, clinical experts, and patient groups. Utility and relative importance scores were generated for each attribute and utility difference significance testing was performed using 'unequal variances t tests'. The Patient Activation Measure (PAM-13) questionnaire was administered to assess patients' knowledge, skill, and confidence in self-management.ResultsA total of 466 patients (mean age, 68 years; women, 54%; binocular wet AMD, 28%) with an average anti-VEGF treatment duration of 3.9 years completed the survey. The most important preference domains were 'treatment effects on vision' (non-significant) and 'vision-related symptom burdens' (p < 0.001), followed by 'treatment risk' (p < 0.05), 'impact on daily activities' (p < 0.05), 'burden of clinic/hospital visits' (p < 0.001), and 'impact on psychological well-being'. The five most important attributes in order of importance were clarity of vision, treatment effect on symptoms, quality of vision, time to treatment effect, and time to re-administration. The two most important attributes globally were also in the top three attributes across countries. The majority of participants in the study were level 3 or level 4 of the PAM-13 questionnaire.ConclusionsThis study identified the most important disease and treatment attributes to patients using patient-centred methods. The data showed the degree of harmonization of preferences across geographies and that participants actively adopt behaviours required for improved treatment outcomes. The identified preference drivers may inform future clinical development.

Dataset Information

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

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets