How Patients Seek and Value Online Scar-Related Information: A Qualitative Study

Pathological scarring (PS) following surgical procedures, burns, or trauma poses significant clinical, psychological, and socio-economic challenges. Despite the high prevalence of PS, reliable information resources are limited, often leading individuals to depend on unvalidated online sources. To address this gap, we developed MyScarSpecialist.com, an evidence-based website providing comprehensive information on scar types, characteristics, and treatment options. This study aimed to optimize the website through co-creation with patients and clinicians.

Semi-structured focus group meetings were conducted with patients and carers; sessions were recorded, transcribed, and analyzed using thematic analysis.

From the 3 focus group meetings with 15 patients with scars and 3 carers, four key themes emerged: (1) Information Sources: The Role of Professionals, Peers, and Digital Media in information sharing; (2) Desired information: From scar typing to treatment outcomes to psychosocial impact; (3) Website design: Audience preferences on content layering, information load, and image positioning; (4) Readability: Optimizing content for comprehension. Participants highlighted the need for enhanced peer support and resources addressing the psychological impact of scarring.

These findings provide comprehensive insights for optimizing medical educational websites, ensuring inclusivity, accessibility, and empowerment for patients through co-designed strategies.