How to read these numbers
Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are severe reactions, usually to a medicine, that can scar the eye surface. The studies below are about the long-term (chronic) eye damage, not the acute illness. All are retrospective reviews from specialist centers, mostly of people who had tried other treatments first, and none had a comparison group.
Two questionnaires appear often. The Ocular Surface Disease Index (OSDI) measures symptoms; lower is better. The NEI VFQ-25 measures how vision affects daily life; higher is better. Both are explained on the quality-of-life research page. Vision is in logMAR, where lower is better, or in Snellen fractions such as 20/40.
Vision and symptoms in adults
| Study | Who | Design | Vision[1][2][3] | Symptoms and quality of life |
|---|---|---|---|---|
| France, 2009 | 39 patients (67 eyes), mean follow-up 33.3 months | Retrospective | Better eye 0.73 → 0.50 logMAR at 6 months | OSDI 76.9 → 37.1; NEI VFQ-25 25.1 → 67.4 |
| Boston (PROSE), 2015 | 86 patients (167 eyes), median follow-up 16 months | Retrospective cohort | Median 20/60 → 20/25, with no decline by the end of follow-up | NEI VFQ-25 48 → 72 at 6 months |
| Los Angeles (PROSE), 2014 | 27 eyes of 16 patients | Retrospective | 0.43 → 0.14 logMAR | OSDI 70.4 → 37.4 |
Sources: France[1], Boston[2], Los Angeles[3].
Smaller and mixed studies point the same way:
- Mixed surface disease, US, 2000. In a series of 76 eyes where 71% had SJS, 53% of eyes gained 2 or more lines of vision, and 92% of patients reported better quality of life through less light sensitivity and discomfort.[6]
- Brazil, 2010, 10 eyes of 7 patients. Fitting succeeded in 90%, and all of those patients reported better symptoms and sight.[7]
- SJS with keratoconus, India, 2017. In 5 eyes of 3 patients with both conditions, vision improved in all with scleral lenses.[8]
In the Boston cohort, general health ratings also improved, from 57 to 65 out of 100 at six months.[2]
Children
- PROSE in children, Boston, 49 patients. Children were on average 6.4 years old when SJS or TEN began and 9.3 at their first PROSE visit. Median vision improved from 20/80 to 20/30 when the device was dispensed and was still 20/30 at the last visit, after an average of 5.45 years. Fifteen children (30.6%) failed PROSE treatment.[4]
- Scleral lenses in children with surface disease, India, 91 eyes of 67 children. Most eyes (75) had SJS. Over an average of 40 months, vision improved significantly, 66.7% of SJS eyes showed less keratinization (a skin-like change of the eye surface), and no lens-related infections occurred.[5]
For more on children and scleral lenses, see the guide to children and scleral lenses.
Who can be fitted, and who keeps wearing them
Not everyone can wear a scleral lens after SJS. In some eyes, scarring has changed the anatomy too much for a lens to be fitted.
- In the French series, fitting failed in 3 of 39 patients.[1]
- In the Los Angeles series, 19 patients were referred. Three were lost to follow-up during fitting, and 4 could be fitted in only one eye because anatomic changes prevented fitting the other.[3]
- In the Boston pediatric study, 30.6% failed treatment.[4]
We didn’t find adult studies reporting long-term dropout separately for SJS.
Safety
- No serious lens-related events. The French series of 39 patients reported no serious adverse events attributable to the scleral lenses.[1] The Indian pediatric study reported no lens-related infections; complications were the lens edge pressing into the conjunctiva (12% of eyes) and lens breakage (2.2%).[5]
- Blood vessels into the cornea. In the small Indian series of SJS with keratoconus, one patient developed deep blood vessels in the cornea with prolonged wear. They regressed after wear time was reduced and the lens was changed to a more oxygen-permeable material. Another patient stopped because of redness and discomfort.[8]
General scleral lens risks, including infection, apply too. See complications research.
A related option: limbal rigid lenses
A group in Japan has studied a different design, a tear-exchangeable limbal rigid contact lens, in SJS and TEN. In a retrospective series of 53 eyes of 42 patients, average vision improved from 1.61 to 0.86 logMAR after three months and the NEI VFQ-25 score rose from 37.6 to 58.4, with no serious adverse events attributable to the lens.[9] In a later study of 50 eyes followed for an average of 4.3 years, redness of the conjunctiva improved and corneal blood vessel scores did not worsen in any eye.[10] These lenses are not scleral lenses, and they aren’t widely available everywhere. Ask your specialist which designs they use.
For how SJS affects the eye and the full range of treatments, see the Stevens-Johnson syndrome condition page.
Common questions
Can scleral lenses help the eye problems left by Stevens-Johnson syndrome?
For many people, studies suggest yes. In a Boston series of 86 patients treated with PROSE, median vision improved from 20/60 to 20/25, and vision quality-of-life scores rose from 48 to 72 out of 100 after six months. These are results from specialist centers in people who were fitted, without comparison groups.
Can everyone with SJS wear a scleral lens?
No. Scarring can change the eye surface so much that a lens can't be fitted. In a US series, 4 patients could be fitted in only one eye because of changes in the other, and in a French series, fitting failed in 3 of 39 patients. Your fitter will need to examine your eyes to know.
Do scleral lenses work for children with SJS?
In a Boston study of 49 children with SJS or TEN, followed for an average of 5.45 years, median vision improved from 20/80 to 20/30 and stayed improved. But 15 children (30.6%) failed treatment. Ask the fitter how your family will be supported with daily lens care.
Are scleral lenses safe with SJS?
In the French series of 39 patients followed for about three years, no serious adverse events attributable to the lenses occurred. One small report describes new blood vessels growing into the cornea with long wear, which regressed after wear time was reduced and the lens material changed. Regular checks with your fitter matter.
