OBJECTIVES: Published evidence on the humanistic burden of C3G, an ultra-rare renal condition, are scarce. This social media study was conducted to understand the patient journey, quality of life (QoL) and unmet needs from the patients’ perspective.

METHODS: Social media data from September 2015–September 2018 were captured based on a predefined search strategy using MeSH terms, through social media data aggregator. C3G specific social media posts in English language from the US and the UK, on open channels such as twitter, forums, blogs and newswires were analyzed, post anonymization.

RESULTS: A total of 791 relevant posts were analyzed. The focus of the discussions, mainly driven by patients and caregivers, were on seeking or giving advice in regards to diagnosis and treatments, obtaining information on C3G and looking for support groups. The major reasons that led patients to physician visits were edema, fatigue, presence of blood in the urine and hypertension. Diagnosis was reported mainly in patients aged ≤20 years, through biopsy. Nearly 50% of mentions involved initial treatments with anti-hypertensives followed by steroids and/or immunosuppressants. Dialysis and transplant were mentioned as treatment options, adding significant emotional and physical burden. In addition, symptoms like feeling very weak and tired, swellings and always getting sick affected the patients’ day to day activities. C3G patients and their caregivers felt uncertainty about transplant success and anxiety around their future. The absence of proper information in the public domain and counseling support emerged as unmet needs which caused more emotional stress among patients and caregivers.

CONCLUSIONS: The symptoms and emotions associated with the disease reduced the QoL of both patients and caregivers. Furthermore, these patients’ insights shed light on the disease burden from a patients’ perspective and can be taken into account for future drug development programs.