PS18 HSBuddyUp: development of a novel psychosocial support platform for hidradenitis suppurativa

Abstract

Hidradenitis suppurativa (HS) is a chronic inflammatory skin disorder associated with recurrent painful nodules and abscesses. It produces the lowest quality-of-life indices in dermatology. HS is also linked to psychological distress, social isolation and stigma. HSBuddyUp is a support platform designed to characterize the psychosocial impact of HS and inform targeted supportive interventions. Facilitator-led individual and group discussions followed a predefined reflection framework, incorporating mindfulness-based activities to guide self-reflection. Sessions were transcribed verbatim and analysed using grounded theory methodology. HSBuddyUp successfully obtained sponsorship from Novartis, with no involvement in participant engagement or promotion. Over 2 years, we engaged 39 individuals with HS. Seventeen participants engaged in five hybrid sessions. In-person attendance was limited by pain and mobility, while the psychological burden of HS limited emotional capacity to engage. Three themes were constructed through grounded theory analysis of the discussions (Table). Reflections also identified priorities for improvement: earlier diagnosis, equitable specialist access, comprehensive pain and wound management and formalized psychosocial support. The findings from the HSBuddyUp platform emphasize the need for improved awareness, equitable specialist access and integrated, empathetic, patient-centred approaches addressing both the physical and psychosocial burden. These insights will inform continued platform development to enhance self-efficacy, reduce isolation and promote psychosocial wellbeing.TableThe three themes resulting from grounded theory analysisThemeQuotes from participantsDisrupted self-identity‘A colleague complained about my body odour during a HS flare, which was humiliating.’‘During intimacy, I was asked if my scars were a sexually transmitted disease.’Inconsistent access to healthcare‘Some clinicians understand HS more than others, which affects treatment.’‘You have to justify taking up time and demanding care.’Diverse coping strategies‘The dressings are expensive, so I cut them in half.’‘I tried alternative treatments in desperation.’‘Finding an online community built my confidence.’