{"title":"A Narrative Medicine Approach to Navigating Barriers to the Diagnosis of Pediatric Neurotrophic Keratopathy.","authors":"Shadia Tannir, Chilando Mulenga, Khoa Tran, Asim Ali, Charline Boente, Gregory H Borschel","doi":"10.1016/j.ajo.2025.03.043","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Neurotrophic keratopathy (NK) is a rare disease characterized by the loss of corneal innervation and increased vulnerability to injury. The diagnosis and treatment of NK can be challenging for pediatric patients and their caregivers. This study explores the experiences of caregivers navigating the diagnostic and treatment journey of pediatric patients with neurotrophic keratopathy.</p><p><strong>Design: </strong>This study is a qualitative study using semi-structured interviews.</p><p><strong>Subjects: </strong>Ten caregivers of pediatric patients with NK who had undergone corneal neurotization (CN) surgery.</p><p><strong>Methods: </strong>Caregivers were interviewed about their experiences related to the diagnostic process, treatment challenges, lifestyle changes, and the impact of CN surgery. Interviews were recorded, transcribed, and analyzed using an inductive-deductive approach to identify recurring themes.</p><p><strong>Main outcomes: </strong>Caregiver experiences and perceptions of diagnostic delays, information-seeking behaviors, lifestyle changes, and the effects of CN surgery on corneal health and quality of life.</p><p><strong>Results: </strong>Five key themes emerged from the analysis: (1) Delays in diagnosis due to insufficient specialist knowledge; (2) Caregivers' proactive efforts in seeking information; (3) Substantial lifestyle changes required by NK; (4) The impact of CN surgery on corneal health and quality of life; and (5) Variability in healthcare experiences, highlighting the need for effective communication. Caregivers expressed frustration with diagnostic delays and highlighted their reliance on external support networks.</p><p><strong>Conclusions: </strong>This study illustrates the need for enhanced awareness among clinicians about NK and the benefits of narrative medicine in fostering caregiver-provider relationships. The challenges reported by families navigating NK inform strategies that may improve diagnosis and treatment of NK.</p>","PeriodicalId":7568,"journal":{"name":"American Journal of Ophthalmology","volume":" ","pages":""},"PeriodicalIF":4.1000,"publicationDate":"2025-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"American Journal of Ophthalmology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.ajo.2025.03.043","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"OPHTHALMOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Objective: Neurotrophic keratopathy (NK) is a rare disease characterized by the loss of corneal innervation and increased vulnerability to injury. The diagnosis and treatment of NK can be challenging for pediatric patients and their caregivers. This study explores the experiences of caregivers navigating the diagnostic and treatment journey of pediatric patients with neurotrophic keratopathy.
Design: This study is a qualitative study using semi-structured interviews.
Subjects: Ten caregivers of pediatric patients with NK who had undergone corneal neurotization (CN) surgery.
Methods: Caregivers were interviewed about their experiences related to the diagnostic process, treatment challenges, lifestyle changes, and the impact of CN surgery. Interviews were recorded, transcribed, and analyzed using an inductive-deductive approach to identify recurring themes.
Main outcomes: Caregiver experiences and perceptions of diagnostic delays, information-seeking behaviors, lifestyle changes, and the effects of CN surgery on corneal health and quality of life.
Results: Five key themes emerged from the analysis: (1) Delays in diagnosis due to insufficient specialist knowledge; (2) Caregivers' proactive efforts in seeking information; (3) Substantial lifestyle changes required by NK; (4) The impact of CN surgery on corneal health and quality of life; and (5) Variability in healthcare experiences, highlighting the need for effective communication. Caregivers expressed frustration with diagnostic delays and highlighted their reliance on external support networks.
Conclusions: This study illustrates the need for enhanced awareness among clinicians about NK and the benefits of narrative medicine in fostering caregiver-provider relationships. The challenges reported by families navigating NK inform strategies that may improve diagnosis and treatment of NK.
期刊介绍：
The American Journal of Ophthalmology is a peer-reviewed, scientific publication that welcomes the submission of original, previously unpublished manuscripts directed to ophthalmologists and visual science specialists describing clinical investigations, clinical observations, and clinically relevant laboratory investigations. Published monthly since 1884, the full text of the American Journal of Ophthalmology and supplementary material are also presented online at www.AJO.com and on ScienceDirect.
The American Journal of Ophthalmology publishes Full-Length Articles, Perspectives, Editorials, Correspondences, Books Reports and Announcements. Brief Reports and Case Reports are no longer published. We recommend submitting Brief Reports and Case Reports to our companion publication, the American Journal of Ophthalmology Case Reports.
Manuscripts are accepted with the understanding that they have not been and will not be published elsewhere substantially in any format, and that there are no ethical problems with the content or data collection. Authors may be requested to produce the data upon which the manuscript is based and to answer expeditiously any questions about the manuscript or its authors.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
