OBJECTIVES: A comprehensive understanding of the real-world issues with muscular dystrophy (MD) is essential to improve patient care. There is paucity of data on the patients’ perspective of how MD impacts daily living. This study aimed to understand the patients’ perspective through social media listening.

METHODS: This retrospective study analyzed publicly available data from the r/Muscular Dystrophy subreddit on Reddit spanning January 2018 – November 2023. Natural Language Processing models were used to classify anonymized dataset into relevant posts pertaining to journey of MD patients. The processed data was categorized for further analysis into patient journey information such as symptoms, diagnosis, treatment, and quality of life (QoL).

RESULTS: A total of 802 posts from 511 members were identified on the MD subreddit. Gender information was discerned in 30% of the posts, with male/female distributions reported in 69%/31% of the posts, respectively. Commonly mentioned symptoms were muscle weakness/degeneration (30%), inability/difficulty to walk (25%), and chronic pain (16%) which affected the activities of daily living. Diagnosis was discussed in 28% of posts; of which 6% indicated individuals seeking diagnostic options. Treatment options were mentioned in nearly 18% of posts; out of which 45% discussed therapeutic interventions and 55% mentioned the use of physical therapies/adaptive equipment in conjunction with everyday activities for managing symptoms. Approximately half (53%) of the identified posts highlighted considerable impact on the patients’ emotional and physical well-being. Lack of disease awareness, accurate and timely diagnosis, and limited treatment options were identified as key unmet needs.

CONCLUSIONS: Insights from this study reported patients’ experiences and concerns of living with MD. Assessing patient-generated content revealed that MD imposes a substantial burden of impaired QoL that spans multiple aspects of daily living. Hence, it is critical to integrate patients' insights and address unmet needs when considering disease management including drug development.