Abstract
BackgroundThygeson’s superficial punctate keratitis (TSPK) is a rare and still poorly understood disease of the ocular surface, responsible for recurrent episodes of photophobia and eye pain. While TSPK is considered as a benign condition, a subset of patients has frequent recurrences or even chronic disease, two situations in which there are currently no therapeutic guidelines. We used a preexisting Facebook TSPK patient support group to assess the clinical journey and the burden of disease of TSPK.ResultsAn online survey was sent to the patient support group. The first part of the questionnaire gathered information on demographics and the patient’s clinical journey [diagnostic modalities, symptoms, duration and frequency of recurrent episodes (RE), efficacy and tolerance to treatments]. The second part focused on quality of life (QoL) using the Ocular Surface Disease-QoL (OSD-QoL) questionnaire. Seventy-two patients out of 595 members of the support group completed the questionnaire during the 3-months study period. Eighty percent of patients developed symptoms before 30 years old, and 47% reported a delay in the diagnosis above 1 year. Sixty percent of patients reported over 5 RE yearly, and 18% of RE lasted more than 3 months. Forty percent of all patients used cyclosporine eyedrops (50% of those with > 5 episodes/year) and it was perceived as effective by 72% of these patients. The impact on daily life activities was judged as severe by 22% of patients, while 38% reported reduced professional activity and 80% were deeply saddened by their eye condition.ConclusionTSPK patients may present with frequent recurrences and/or chronic disease, that result in a severe impact on QoL, and an off-label use of topical immunomodulatory eye drops, suggesting the urgent need for controlled studies. The utility of using social networks for rare ophthalmic disease research includes, faster data collection, data from patients across the globe, and also raises relevant questions about their real needs.
Highlights
Thygeson’s superficial punctate keratitis (TSPK) is a rare ocular surface disease, characterized by recurrent episodes of photophobia and foreign body sensation, associated with multiple white–grey superficial epithelial lesions, without stromal involvement and mild or absent conjunctival hyperemia [1,2,3]
The clinical evolution is heterogeneous as some patients present with remittent-recurrent disease with variable delay between recurrences, while some suffer from chronic disease, with persistent activity over years [1]
The present study evaluated the burden of disease of TSPK, including clinical journey of TSPK patients and the impact on patient quality of life (QoL) using an online survey targeting a TSPK-specific patient support group on Facebook
Summary
Thygeson’s superficial punctate keratitis (TSPK) is a rare ocular surface disease, characterized by recurrent episodes of photophobia and foreign body sensation, associated with multiple white–grey superficial epithelial lesions, without stromal involvement and mild or absent conjunctival hyperemia [1,2,3]. For patients with frequent recurrences or chronic disease, topical corticosteroid and immunosuppressants such as cyclosporine A (CSA) and tacrolimus seem a good option, suggesting involvement of underlying immunologic mechanisms [8,9,10]. Thygeson’s superficial punctate keratitis (TSPK) is a rare and still poorly understood disease of the ocular surface, responsible for recurrent episodes of photophobia and eye pain. While TSPK is considered as a benign condition, a subset of patients has frequent recurrences or even chronic disease, two situations in which there are currently no therapeutic guidelines.
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