A step forward in hidradenitis suppurativa consultations: The development of conversation cards

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that imposes significant physical and psychological burdens, making self-management essential. Agenda-setting tools, such as conversation cards (CCs), have improved patient engagement and supported self-management in other chronic diseases, yet no analogous tool exists for HS. OBJECTIVE: To design, test and evaluate a set of CCs for patients with HS to facilitate patient-centred dialogue during consultations to support self-management. METHODS: Development followed three stages with inspiration from the Participatory Design (PD) approach. (i) Identification of needs: patient interviews were conducted, transcribed and analysed to extract key themes that informed the initial prototype. (ii) Design: two workshops, one with healthcare professionals (HCPs) and one with patients, were held to refine the prototypes. (iii) Evaluation and testing: The finalized set of CCs was implemented in clinical consultations. Patients were allocated to either Group A (incorporating CCs) or Group B (standard consultations). Post-consultation questionnaires captured the experiences and perceptions of both patients and HCPs. RESULTS: The initial prototype consisted of eight cards. Workshop feedback led to the addition of a ninth card addressing pain. In clinical testing, patients in Group A (n = 22) selected between one and three cards, and their consultations lasted approximately 15 min, almost identical to Group B (n = 22). No statistical differences were found between the groups. Both groups reported high confidence in discussing HS, felt able to address difficult topics and perceived influence over the consultation's content. Group A expressed a positive attitude towards future use of CCs. HCPs found the cards user-friendly and indicated interest in using them in future clinical encounters. CONCLUSION: A nine-card CC set was designed and positively evaluated by patients and HCPs. CCs appear to be a practical, patient-focused tool to support consultations. However, a larger prospective study is needed to confirm their impact on self-management.