How to read these numbers
Ocular graft-versus-host disease (GVHD) can follow a stem cell or bone marrow transplant from a donor. Its main eye problem is severe dry eye, which these studies call keratoconjunctivitis sicca. Every study below enrolled people whose dry eye wasn’t controlled by standard treatments, and most come from specialist centers.
The designs are small case series, chart reviews, a manufacturer’s database, and one patient survey. None had a comparison group. Several report symptom scores only for people still wearing the lenses at follow-up, which tends to make results look better. Symptoms were usually measured with the Ocular Surface Disease Index (OSDI), where lower scores mean fewer symptoms.
Some studies use PROSE, a treatment from the Boston Foundation for Sight that uses customized scleral devices[4]; others use commercially available scleral or mini-scleral lenses. Both work on the same principle: a fluid-filled lens that keeps the cornea wet.
Symptoms and vision
| Study | Who | Design | Symptoms[1][4][6][7] | Vision |
|---|---|---|---|---|
| US, 2007 | 9 consecutive patients | Case series | Median OSDI 81 → 21 within 2 weeks; 12 at last contact | Not reported in the abstract |
| US (PROSE), 2015 | 79 eyes of 40 patients | Retrospective | Average OSDI 72.6 → 21.1 in the 29 patients assessed at follow-up | 90% of eyes improved; 72% gained 2 or more lines |
| France, 2017 | 60 consecutive patients, several centers | Retrospective | Average OSDI 86 → 30 at 2 months | 0.33 → 0.10 logMAR |
| Germany, 2024 | 62 eyes of 31 patients, mini-scleral lenses | Retrospective, median follow-up about 2 years | Median OSDI 73 → 27 | Median 20/40 → 20/25 |
Sources: US 2007[1], US 2015[4], France[6], Germany[7].
Other findings from these studies:
- Surface healing. In the 2015 PROSE series, corneal staining decreased in 66 of 79 eyes (84%). All 9 eyes with filamentary keratitis (strands of mucus and cells stuck to the cornea) and all 3 with open surface defects healed completely.[4]
- Corneal staining fell in the French study (Oxford score 3.2 → 1.3) and the German study (median grade 3 → 1).[6][7]
- Less need for drops. In the 9-patient series, all patients reported better symptoms and used lubricant drops less, and disability from dry eye resolved in 7.[1]
- An early lens study. In a 5-patient series using a commercially available lens, all 10 eyes were fitted, all patients reported better comfort, and vision improved in 7 of 10 eyes.[3]
Quality of life
- Patient survey after fitting, 33 consecutive patients. More than two thirds (73%) reported the highest level of improvement in overall quality of life, 52% for pain, and 63% for light sensitivity. Among those who had trouble reading or driving before, more than 90% reported improvement.[2]
- PROSE network database, 407 patients from 2002 to 2011. Among patients treated across the network in 2010, the NEI VFQ-25 composite score (a vision quality-of-life questionnaire scored out of 100) improved by 41 points, similar to the 30-point gain at the main center.[5]
- French multicenter study. Quality of life, measured by OSDI, improved in 58 of 60 patients (97%).[6]
These questionnaires are explained on the quality-of-life research page.
What wearers say
A 2021 survey reached people registered with a US blood and marrow transplant information network; 306 respondents with ocular GVHD were analyzed. Among those who wore scleral lenses or PROSE devices, 94% said dryness or grittiness improved, 92% said eye pain improved, and 89% said quality of life improved. More than half (56%) wished the lenses had been recommended sooner. Among people not wearing them, the most common reason was never having heard of them (63%).[8]
A survey like this depends on who chooses to answer, and people who are happy with a treatment may be more likely to respond. It’s a useful signal about patient experience, not a measure of success rates.
Who keeps wearing them
| Study | Follow-up | Stopped wearing[6][7][4] |
|---|---|---|
| France, 60 patients | Median 20.5 months | 5 patients (8%) |
| Germany, 31 patients | Median about 2 years | 7 patients (22.6%), most within the first two years |
| US PROSE, 40 patients | Not stated in the abstract | 3 patients stopped; 8 had died |
Sources: France[6], Germany[7], US[4].
In the German study, the reasons for stopping were difficulty handling the lenses (2 patients), no felt benefit (2), recurring herpes simplex keratitis (1), and unknown (2).[7] The deaths in the US series are a reminder that many people with GVHD are living with serious illness, which affects both follow-up and how much effort lens care takes.[4]
Safety
- No serious lens-related events reported. The 9-patient series reported no serious adverse events or infections attributable to the lenses.[1] The German study recorded no adverse events directly attributable to lens wear over a median of about two years.[7]
- Small corneal swelling, no pressure change. In a study of 46 eyes with ocular surface disease, including GVHD, central corneal thickness rose slightly (1.01%) after lens wear, and eye pressure measured after removal did not change significantly.[9]
Immune-suppressing treatment is the primary treatment for chronic GVHD,[1] and the general infection risks of scleral lenses still apply. See complications research for what is known about infection, swelling, and pressure.
For how GVHD affects the eye and what else is used to treat it, see the ocular GVHD condition page. For dry eye from other causes, see scleral lenses for severe dry eye research.
Common questions
Do scleral lenses help ocular GVHD?
In the studies we found, most people with severe GVHD dry eye that hadn't responded to standard treatment had less discomfort and better vision with scleral lenses. In a French multicenter study of 60 patients, 58 (97%) had better quality of life after two months. These are case series without comparison groups.
How quickly do scleral lenses help GVHD symptoms?
In a small US series of 9 patients, the median symptom score fell from 81 to 21 within two weeks of fitting. Your own timeline depends on your eyes and how the rest of your GVHD is being treated.
Will I still need my other GVHD eye treatments?
Probably, at least some of them. In the 9-patient series, people reduced their use of lubricant drops. The authors describe immune-suppressing treatment as the primary treatment for chronic GVHD, with eye measures alongside it. Decisions about medicines belong with your transplant team and eye doctor.
Why do people with GVHD stop wearing scleral lenses?
In a German study of 31 patients, 7 stopped over about two years: 2 because of handling, 2 because they felt no benefit, 1 because of recurring herpes keratitis, and 2 for unknown reasons. The study recorded no adverse events directly attributable to the lenses.
Why didn't my doctor mention scleral lenses?
They may not be right for you, or they may not be available locally. In a survey of 306 people with ocular GVHD, the most common reason non-wearers gave for not using scleral lenses was that they had never heard of them (63%). It's reasonable to ask your eye doctor whether a referral makes sense.