Ocular Chronic Gvhd: Increasing Opportunities for Impact and Awareness

Intro :

Approximately 50% of HSCT recipients develop chronic GVHD and of these 60% suffer from moderate to severe ocular GVHD. The symptoms of ocular GVHD (OCGVHD), blurry vision, burning, foreign body sensation, pain, excessive tearing, and photophobia, have negative effects on quality of life (QOL). We attempt to identify opportunities to increase awareness, acceptance, access to treatment, and care coordination that can improve QOL in OCGVHD.

Methods:

Retrospective review of 2 online surveys conducted by Boston Foundation for Sight (BFS) and keyword searches of BBMT and PubMed. Survey 1 in 2009 included 1127 self-selected respondents from emails sent to 700 BFS patients and posts on 3 patient websites: Dry Eye Zone, NKCF and SJS Foundation. 51 reported OCGVHD (BFS patients N=41) and 476 dry eye without COGVHD (BFS patients N=147).  Survey 2 in 2011 included 149 self-selected respondents from emails to 900 PROSE treatment patients seen in previous 5 years.  19 reported OCGVHD and 94 dry eye (also OCGVHD N=17).

Results:

Survey 1 revealed 26% of COGVHD BFS patients first heard about PROSE treatment from an eye doctor, 26% BMT transplant team, 28% other medical doctors and 20% other sources; versus 46%, 0%, 1.5%, and 52.5% respectively for dry eye patients without COGVHD. Table 1 presents respondent reported experience and success with ancillary and supportive care recommendations for Eye GVHD from 2006 NIH consensus project.   Survey 2 revealed 84% of OCGVHD reported PROSE devices daily wear. 79% would have pursued the treatment months or years earlier if possible, and 31% of these cited lack of awareness of PROSE treatment as a delaying factor. 11% consulted 6 or more ophthalmologists before finding PROSE; 11% 4 or more; and 28% 3 or more. Search of BBMT database on 6 combinations of the terms “ocular”, “chronic”, “graft versus host disease” and/or “GVHD” anywhere in title or body  yields 12 citations including meeting abstracts.  Search of PubMed using same keyword criteria for title only yields 22 citations.

Conclusions:

Despite 2006 consensus workshop recommendations, including multi-disciplinary coordinated care by an ophthalmologist knowledgeable about HCT and GVHD, we have found that with OCGVHD receive higher level treatment with demonstrated impact on QOL only on a delayed basis.  BMT centers are more likely to be a source of referral than eye care providers.   There is now increased availability of autologous serum, scleral lenses, and PROSE treatment.   Increasing awareness among these BMT clinicians, eye care providers, and patients presents an opportunity for impact as far as improvement QOL for HSCT survivors.