Thank you in advance- your feedback and insights are invaluable to the BFS team. We really appreciate your ongoing support.

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1 Survey Questions SECTION 1: INTRODUCTION The Boston Foundation for Sight (BFS) is requesting your help in responding to a survey. We are trying to create social networking and support systems to better serve our patients and families and assist the broader community of people struggling with eye-related challenges. Your answers will tell us more about your personal experiences, challenges and knowledge and identify how we can better meet your needs. We expect it will take approximately minutes to fill out and it should be completed by XXX date. We would also appreciate if you could forward this survey to friends and family members. The survey is designed and administered by Beth Beard, a consultant who is working with the Boston Foundation for Sight. Your responses will be reviewed by Ms. Beard and only aggregate information will be shared with BFS staff. Contact information is optional so we encourage you to be as honest and forthright as possible in your responses. Thank you in advance- your feedback and insights are invaluable to the BFS team. We really appreciate your ongoing support. Warmest Regards, Gary Gut, President Boston Foundation for Sight 1. Which of the following statements best describes you? Please check only one a. I am a family member or friend of someone with eye related difficulties (skip to question 6) b. I have had eye related difficulties within the last 5 years c. I am a current Boston Foundation for Sight (BFS) patient d. I am a former BFS patient e. Other SECTION 2: HISTORY OF EYE DIFFICULTIES AND TREATMENT 2. Have you had any of the following diagnoses or results from procedures in the last 5 years? (check all that apply) a. Keratoconus, keratoglobus, or pellucid marginal degeneration b. Complications from Lasik, RK, or PRK c. Complications of corneal transplantation d. Stevens-Johnson syndrome or TENS e. Graft-Versus-Host Disease (GVHD) f. Sjogren's syndrome g. Familial Dysautonomia or congenital cornea anesthesia h. Severe dry eye i. Corneal damage due to accident or injury BFS Survey: Report Back to the Community Page 1

2 j. None k. Other 3. Have you experienced any of the following challenges due to eye related difficulties in the last 5 years? Please rate each according to severity: 1- Have not experienced; 2- mild; 3- moderate; 4- severe a. Reading regular print newspapers, magazines or websites b. Pain or discomfort in or around the eyes c. Worry about eyesight d. Work or hobbies that require seeing well up close such as cooking, fixing things around the house or using hand tools e. Driving during the daytime in familiar places f. Driving at night g. Seeing how people react to things that are being said h. Visiting with people in their homes, at parties or in restaurants i. Going out to see movies, plays or sporting events j. Engaging in physical activity such as walking, strength training, riding a bike or playing sports k. Photosensitivity or light sensitivity 4. Which treatments have you tried in the past 5 years to address your eye-related challenges and how much success have you had with each? (Rating scale: 1- have not tried; 2- little or no success; 3- moderate success; 4-significant success) a. Soft contact lens for vision b. Rigid Gas Permeable contact lenses c. Hybrid contact lenses d. Scleral lens (other than BOS-P or Boston Scleral Lens) e. BOS-P or Boston Scleral Lens f. Topical steroids g. Topical antibiotics h. Topical Immunosupression (Cyclosporine/Restasis) i. Artificial tears, lubricant gel, or lubricant ointment j. Lacriserts k. Bandage soft contact lens (not for vision) l. Autologous Serum m. Oral antibiotics, Tetracycline, Doxycycline, fish oil, or flaxseed oil n. Punctal plugs o. Punctal cautery p. Tarsorrhaphy (sewing lids shut) q. Lasik r. PRK (Photo Refractive Keratectomy s. RK (Radial Keratotomy) t. Limbal stem cell transplant u. Amniotic membrane graft v. Mucous membrane grafting/marginal lid rotation w. Lash electrolysis or cryo x. Surgical or laser revision of cornea transplant y. Other BFS Survey: Report Back to the Community Page 2

3 SECTION 3: QUALITY OF LIFE AND SUPPORT SYSTEMS 5. Please rate the following statements according to how accurately they describe how you personally have been affected by vision difficulties or the vision difficulties of a family member during the last 5 years. (Note: If you are a friend or family member of someone with eye difficulties please rate how their challenges have personally affected your own life) Scale: 1- definitely true; 2- somewhat or mostly true; 3- not sure; 4- somewhat or mostly false; 5- definitely false a. I accomplish less than I would like b. I go out less often c. I am less physically active d. I have less opportunity for social interaction e. I have less control over what I do f. I travel less g. I am more stressed out h. I argue with my spouse, partner or children more than I used to i. I am very focused on my own or my family members eye related difficulties j. My household income has decreased k. I enjoy life less l. Other text line 6. Please describe in your own words how you and your family have been most affected by your eyesight difficulties or the eye difficulties of someone else? 7. Which of the following supports or assistive devices have you and/or your family members utilized in the last 5 years and how sufficient were they in meeting your needs? (1- have not used; 2- would use if available; 3- used but insufficient; 4- used and sufficient) a. Specialized computer software (i.e. text to speech) b. Special glasses or goggles c. Personal aids or caregivers to assist with daily living tasks d. Light dimmers or light-blocking shades/curtains e. Alternative transportation services or ride shares f. One on one support provided by individuals with eye related difficulties or their family members g. Financial support or insurance help h. Job search assistance or career assessments/guidance i. Coaching or help with adaptive workplace solutions j. Individual psychiatric and/or mental health counseling k. Family counseling and/or support groups l. Other 8. The BFS is considering developing a number of additional supports and services to better assist individuals with eye related difficulties and their families. During the last 5 years how likely is it that you or your family members would have used these supports if they were available to you? Scale: 1- not at all; 2- somewhat; 3- very a. Private phone or consultations with eye doctors/specialists b. Online social networking, social support or information sharing among patients and families BFS Survey: Report Back to the Community Page 3

4 c. Opportunities to interact face-to-face with other patients and families (via annual regional events, conferences, etc.) d. Online information sharing or live Q and A sessions with medical professionals e. 1-on-1 patient or family support (online, via phone or in person) f. Hospitality/housing during clinic visits and fittings g. A regular newsletter, listserv or update h. Financial and/or insurance support i. Other Comments SECTION 4: ONLINE RESEARCH AND NETWORKING 9. Which of the following online tools or social network sites do you use and how often do you use them? Rating scale: 1- Do not use; 2- Yearly; 3- Monthly; 4-Weekly; 5- Daily a. Facebook b. MySpace c. LinkedIn d. Plaxo e. Twitter f. Jaiku g. Online bulletin board or forums h. Other: 10. Have you visited any of the following websites in the last year? If so, what did you use the websites for? Rating scale: 1- N/A; 2- general info; 3- social support; 4- research; 5- professional contacts; 6- treatment options; 7- financial support a. Dry Eye Zone b. Steven-Johnson Syndrome Foundation c. NKCF Keratoconus Foundation d. Boston Foundation for Sight e. Bone Marrow Transplant Info Net f. Lighthouse for the Blind and Visually Impaired g. Other 11. Have you conducted online searches (Google, Yahoo, etc.) during the last 2 years to find out more information about eye conditions, diseases, resources or treatments? a. Yes b. No (skip to question 13) 12. What are the most common words or phrases you have used in your searches? Please rank your top 5 in order of frequency a. dry eye, severe dry eye, or chronic dry eye b. scleral lens c. contact lens d. corneal disease, corneal damage, corneal thinning, corneal scarring, or corneal ulcers BFS Survey: Report Back to the Community Page 4

5 e. Keratoconus, KC, corneal ectasia, keratoglobus, or pellucid marginal degeneration f. graft-versus-host-disease,gvhd or bone marrow transplant g. Stevens-Johnson syndrome or TENS h. vision loss, vision impairment, impaired vision,, low vision, limited vision or blindness i. restoring sight or sight restoration j. eye pain k. photosensitivity or light sensitivity l. corneal transplant m. Sjogren's syndrome n. LASIK complications o. ocular surface disease p. Familial Dysautonomia q. anesthetic corneas r. Other SECTION 5: BOSTON FOUNDATION FOR SIGHT 13. How familiar would you say you are with the Boston Foundation for Sight? a. Not at all familiar (skip to Question 21) b. Somewhat familiar c. Very familiar d. I know the BFS mission by heart 14. How did you first hear about the Boston Foundation for Sight? Check only one a. Newspaper/web article, radio or TV b. Dry Eye Zone Website c. Keratoconus Foundation/website d. Steven-Johnson Syndrome Foundation/website e. Bone Marrow Information Network/website f. The Boston Foundation for Sight website g. A friend or family member h. A BFS staff person, volunteer or board member i. A BFS donor j. A BFS patient k. Eye doctor or eye care specialist l. Other medical doctor m. Other 15. If you were asked to describe the Boston Foundation for Sight in 2-4 sentences, what would immediately come to mind? 16. What do you think that BFS does really well and why? BFS Survey: Report Back to the Community Page 5

6 17. Is there anything you would like to see changed or improved about the Boston Foundation for Sight? 18. Have you been fitted for a Boston Ocular Surface Prosthesis (BOS-P) or Boston Scleral Lens (BSL) by BFS? a. Yes b. No 19. Would you like to be more involved with BFS then you are now? a. Yes b. Maybe, but I am not sure how c. No 20. If you answered yes or maybe to the question above, how much interest do you have in the following? Scale: 1- little/none; 2- some; 3- significant a. Providing a place to stay for folks visiting BFS b. Participating in BFS online social networking, social support or information sharing c. Facilitating/organizing BFS online social networking, social support or information sharing d. Offering 1-to-1 patient or family support (online, via phone or in person) e. Sharing your story with others (online, in-person or via newsletter) f. Making a financial donation g. Board service or volunteering h. Referring patients, family members or eye care specialist to BFS i. Other SECTION 6: FINAL COMMENTS AND OPTIONAL CONTACT INFORMATION 21. Do you have any other comments, suggestions or ideas that you would like to share with BFS? 22. Please provide us with as much contact information as you feel comfortable. If you would like us to send you a summary of the survey results please provide you . Name: Phone: Street Address: City: State: Zip Code: Thanks Thank you so much for your time and honest answers! BFS Survey: Report Back to the Community Page 6