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.