Cargando…

A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients

INTRODUCTION: Amblyopia is an important cause of monocular vision impairment worldwide, and it negatively impacts patients’ quality of life (QoL). Understanding patients’ perspectives may help to optimize treatment outcomes and improve treatment adherence. METHODS: This was a non-interventional, ret...

Descripción completa

Detalles Bibliográficos
Autores principales: Syntosi, Annie, Felizzi, Federico, Bouchet, Christine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9587203/
https://www.ncbi.nlm.nih.gov/pubmed/36175822
http://dx.doi.org/10.1007/s40123-022-00571-2
_version_ 1784813854179459072
author Syntosi, Annie
Felizzi, Federico
Bouchet, Christine
author_facet Syntosi, Annie
Felizzi, Federico
Bouchet, Christine
author_sort Syntosi, Annie
collection PubMed
description INTRODUCTION: Amblyopia is an important cause of monocular vision impairment worldwide, and it negatively impacts patients’ quality of life (QoL). Understanding patients’ perspectives may help to optimize treatment outcomes and improve treatment adherence. METHODS: This was a non-interventional, retrospective analysis of social media data available in the public domain posted by patients and caregivers on selected social media channels (Twitter®, forums, blogs, and news) from 12 countries between July 2018 and June 2020. RESULTS: Approximately 2662 conversations relevant to the research objective were analyzed. The patient journey for adults and children was constructed based on the conversations. Eyeglasses, eye patches, contact lenses, and vision exercises were the common treatment options for amblyopia. Patients also reported vision improvement with emerging technologies such as digital therapeutics. Amblyopia and its treatment had a negative impact on QoL, and increased caregiver burden. Insurance coverage, long appointment waiting times, and recurring expenses of treatment options were reported as barriers to treatment. Non-compliance, switching between treatment options or technology, or discontinuation of treatment options was found to emanate from various issues including no improvement of the condition, discomfort with the treatment option, bullying, dissatisfaction with healthcare professional (HCP) recommendation, cost of treatment/issues with insurance coverage, side effects, and/or other unspecified reasons. The need for regular eye examinations, better diagnostic tests, awareness of the disease, awareness amongst HCPs about treatment options, and the need for better health insurance coverage policies emerged as unmet needs. CONCLUSION: This social media listening study generated insights on patients with amblyopia and their caregivers regarding the patient journey, treatment options, reasons for non-compliance, reasons for switching HCPs, barriers to treatment, and unmet needs. Further qualitative research is required to validate the findings. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40123-022-00571-2.
format Online
Article
Text
id pubmed-9587203
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher Springer Healthcare
record_format MEDLINE/PubMed
spelling pubmed-95872032022-11-29 A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients Syntosi, Annie Felizzi, Federico Bouchet, Christine Ophthalmol Ther Original Research INTRODUCTION: Amblyopia is an important cause of monocular vision impairment worldwide, and it negatively impacts patients’ quality of life (QoL). Understanding patients’ perspectives may help to optimize treatment outcomes and improve treatment adherence. METHODS: This was a non-interventional, retrospective analysis of social media data available in the public domain posted by patients and caregivers on selected social media channels (Twitter®, forums, blogs, and news) from 12 countries between July 2018 and June 2020. RESULTS: Approximately 2662 conversations relevant to the research objective were analyzed. The patient journey for adults and children was constructed based on the conversations. Eyeglasses, eye patches, contact lenses, and vision exercises were the common treatment options for amblyopia. Patients also reported vision improvement with emerging technologies such as digital therapeutics. Amblyopia and its treatment had a negative impact on QoL, and increased caregiver burden. Insurance coverage, long appointment waiting times, and recurring expenses of treatment options were reported as barriers to treatment. Non-compliance, switching between treatment options or technology, or discontinuation of treatment options was found to emanate from various issues including no improvement of the condition, discomfort with the treatment option, bullying, dissatisfaction with healthcare professional (HCP) recommendation, cost of treatment/issues with insurance coverage, side effects, and/or other unspecified reasons. The need for regular eye examinations, better diagnostic tests, awareness of the disease, awareness amongst HCPs about treatment options, and the need for better health insurance coverage policies emerged as unmet needs. CONCLUSION: This social media listening study generated insights on patients with amblyopia and their caregivers regarding the patient journey, treatment options, reasons for non-compliance, reasons for switching HCPs, barriers to treatment, and unmet needs. Further qualitative research is required to validate the findings. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40123-022-00571-2. Springer Healthcare 2022-09-29 2022-12 /pmc/articles/PMC9587203/ /pubmed/36175822 http://dx.doi.org/10.1007/s40123-022-00571-2 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by-nc/4.0/Open AccessThis article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Syntosi, Annie
Felizzi, Federico
Bouchet, Christine
A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients
title A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients
title_full A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients
title_fullStr A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients
title_full_unstemmed A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients
title_short A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients
title_sort social media listening study to understand the unmet needs and quality of life in adult and pediatric amblyopia patients
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9587203/
https://www.ncbi.nlm.nih.gov/pubmed/36175822
http://dx.doi.org/10.1007/s40123-022-00571-2
work_keys_str_mv AT syntosiannie asocialmedialisteningstudytounderstandtheunmetneedsandqualityoflifeinadultandpediatricamblyopiapatients
AT felizzifederico asocialmedialisteningstudytounderstandtheunmetneedsandqualityoflifeinadultandpediatricamblyopiapatients
AT bouchetchristine asocialmedialisteningstudytounderstandtheunmetneedsandqualityoflifeinadultandpediatricamblyopiapatients
AT syntosiannie socialmedialisteningstudytounderstandtheunmetneedsandqualityoflifeinadultandpediatricamblyopiapatients
AT felizzifederico socialmedialisteningstudytounderstandtheunmetneedsandqualityoflifeinadultandpediatricamblyopiapatients
AT bouchetchristine socialmedialisteningstudytounderstandtheunmetneedsandqualityoflifeinadultandpediatricamblyopiapatients