Using pre-existing social networks to determine the burden of disease and real-life needs in rare diseases: the example of Thygeson's superficial punctate keratitis.

ABSTRACT:

Background

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. We used a preexisting Facebook TSPK patient support group to assess the clinical journey and the burden of disease of TSPK.

Results

An 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 toleranc

SUBMITTER: Saad R 

PROVIDER: S-EPMC7847580 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature