Scleral Lens and Prosthetic Replacement of the Ocular Surface Ecosystem Utilization in Ocular Graft-versus-Host Disease: A Survey Study

Abstract

Purpose To evaluate the utilization of scleral lenses and prosthetic replacement of the ocular surface ecosystem devices (SL/PDs) in the management of ocular graft-versus-host disease (oGVHD). Patients and Methods A survey of 15 questions was sent via email to 6032 subjects registered with the Blood and Marrow Transplant Information Network. The survey reviewed transplant history, graft-versus-host disease history, as well as oGVHD symptoms and onset. Additional questions surveyed treatments used for oGVHD, as well as the degree of ocular symptom control and experience with SL/PDs. A total of 306 respondents met the eligibility requirements to be part of the analyzed cohort. Results The mean number of symptoms reported from the analyzed cohort was 4.79 ± 2.44, median (IQR) of 5.0 (3.0 to 7.0), with the most common symptom being gritty, dry eyes (87%). The mean number of treatments utilized across the analyzed cohort was 3.21 ± 2.55, median (IQR) of 2.5 (1.0 to 5.0), with the most common treatment being artificial tears (86%). Wearing scleral lenses resulted in a mean of 5.42 ± 1.86, median (IQR) of 6.0 (4.0 to 7.0) symptoms improving, with improved dryness/grittiness of the eyes (94%), improved eye pain (92%) and improved quality of life (89%) being the most commonly improved symptoms. Fifty-six percent of those wearing scleral lenses wished the lenses had been recommended sooner. The most common reason patients cited for not wearing scleral lenses was that they had never heard of them (63%). Conclusion SL/PDs help to control the symptoms of oGVHD. With their use, clinicians are able to improve the quality of life of this patient population. Despite the known benefits, SL/PDs still remain underutilized in oGVHD care. A majority of current SL/PD wearers wish that they had been recommended sooner as a treatment option. SL/PDs should be considered a component of comprehensive oGVHD management.

Ocular Graft-versus-Host Disease Underdiagnosis: A Survey Study

“…The authors created a 15-question survey ( Appendix 1 : Survey ) to characterize the participants’ GVHD history, ocular symptoms, oGVHD diagnosis, prior treatments and history of SL/PD use as previously reported. 19 The survey questions asked respondents if they have ever experienced one or more of the nine ocular symptoms including vision changes throughout the day, burning and/or stinging, gritty and/or dry eyes, feeling as if something is stuck in the eyes, eye pain or discomfort, light sensitivity, sensitivity to wind or airflow, eye and/or eyelid redness, or excessive tearing. The respondents were asked to check all symptoms that applied.…”

“…The respondents were asked to check all symptoms that applied. 19 The next set of questions revolved around treatment use to mitigate symptom presentation and severity. Respondents were asked to check all the treatments they have ever tried from a comprehensive list including artificial tears or lubricant drops, artificial tear ointment or lubricant ointment or gel, Restasis or Cequa eye drops, Xiidra eye drops, steroid eye drops, serum tears eye drops, punctal plugs, bandage contact lenses, scleral lenses, Vitamin A ointment, lacriserts, amniotic membrane graft, lid gland exfoliation, oral doxycycline antibiotic pill, or tarsorrhaphy.…”

“…Respondents were asked to check all the treatments they have ever tried from a comprehensive list including artificial tears or lubricant drops, artificial tear ointment or lubricant ointment or gel, Restasis or Cequa eye drops, Xiidra eye drops, steroid eye drops, serum tears eye drops, punctal plugs, bandage contact lenses, scleral lenses, Vitamin A ointment, lacriserts, amniotic membrane graft, lid gland exfoliation, oral doxycycline antibiotic pill, or tarsorrhaphy. 19 The subjects were guided through the survey by question logic to stay on respective pathways given their personal experience with ocular symptoms and treatments.…”

“…As previously reported, 19 a link to the study survey (SurveyMonkey, San Mateo, CA) was emailed to 6032 blood and bone marrow transplant patients who were members of the Blood and Marrow Transplant Information Network (BMTinfonet https://www.bmtinfonet.org ), a not-for-profit 501(c)3 transplant advocacy organization. The email was sent to the subjects on January 17th, 2021.…”

“…Our recent publication based on the first portion of the survey showed that despite the known benefits, SL/PDs have been greatly underutilized in oGVHD care. 19 Through the survey-collected data, we also had the opportunity to look into the potential biases that might have contributed to the underdiagnosis of oGVHD.…”