The future management of HS

Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disease with profound impact on quality of life. Increasing recognition of the patient's role as an active partner in their own care has transformed approaches to disease management, yet a conceptual framework for partnerships with people with HS remains lacking. To provide a comprehensive review of meaningful partnerships with people with HS across three levels: the individual, the patient community, and collaborative partnerships. For each level, we review existing evidence, illustrate barriers to meaningful involvement, present examples of successful patient involvement, and propose future directions. A narrative review of the literature was conducted. Barriers to partnership and future priorities were identified from both people with HS and clinicians' perspectives. At the individual level, structured communication strategies including teach-back and shared decision-making improve treatment adherence and patient satisfaction. At the community level, online patient networks provide peer support and health information. At the collaborative level, patient involvement in research design contributes to shaping policy and knowledge. Patient partnership in HS operates across multiple levels and requires tailored strategies to be effective. Engaging people with HS as partners is a respectful approach to create impactful, relevant research with the potential to improve outcomes and quality of care. A three-level framework is proposed to guide future implementation.

Abstract from PubMed