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Patient experience of treatment decision making for wet age-related macular degeneration disease: a qualitative study in China
  1. Wei Bian1,2,
  2. Junli Wan1,2,
  3. Mingqiong Tan1,2,
  4. Xiaoqing Wu3,
  5. Jun Su1,2,
  6. Lihua Wang4
  1. 1 Southwest Hospital/Southwest Eye Hospital, Third Military Medical University (Amy Medical University), Chongqing, China
  2. 2 Key Lab of Visual Damage and Regeneration & Restoration of Chongqing, Chongqing, China
  3. 3 Outpatient Department of Southwest Hospital, Army Military Medical University, Chongqing, China
  4. 4 Admin Office of Southwest Hospital, Army Medical University, Chongqing, China
  1. Correspondence to Lihua Wang; 3146183418{at}qq.com

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.

  • treatment decision making
  • age-related macular degeneration
  • qualitative study

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Footnotes

  • Contributors WB, JW and LW were responsible for the conception and design of the study and compiling the interview schedule. WB, JW, XW and MT were responsible for acquisition of data. WB and JW were responsible for the analysis of the study and interpretation of data. WB and JW drafted the article. WB, JW, XW, JS and MT revised the article critically for important intellectual content. All authors have read and approved the final manuscript.

  • Funding This study was funded by the Chongqing Technology Innovation and Application Demonstration (Social and Livelihood General) Project (cstc2018jscx-msybX0129), Chongqing Social Science Planning Youth Project (2018QNSH42) and Chongqing Postgraduate Education and Teaching Reform Project (yjg172013).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval Ethics Committee of the First Affiliated Hospital of Army Military Medical University, PLA (Ethics Reference KY201862).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

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