Empathy, Expertise, and Availability: Identifying How People with Hidradenitis Perceive Palliative Care Services (GP120)

Outcomes 1. Identify the potential mechanisms by which palliative care impacts visit satisfaction and overall wellbeing of people with hidradenitis suppurativa (HS).2. Describe interventions beyond specialist palliative care that may similarly impact individuals with HS. Key Message The mechanisms through which palliative care (PC) affects patient wellbeing remain under investigated across populations. Using qualitative methods, we identified that individuals with Hidradenitis suppurativa (HS) perceive benefit from PC through four potential mechanisms: 1) active listening, 2) symptom management expertise, 3) addressing psychosocial issues, and 4) availability between visits. Importance The growing literature regarding the operant components and mechanisms of palliative care interventions remains oncology-focused, and little is known regarding how patients with chronic non-cancer conditions experience palliative care. Objective(s) In this qualitative study, we sought to explore how patients with Hidradenitis suppurativa (HS), a chronic inflammatory dermatologic condition that is associated with severe pain and functional impairment, experienced outpatient specialist palliative care (PC). Scientific Methods Utilized We conducted semi-structured interviews with eleven individuals who received outpatient specialist PC. We used thematic analysis to identify themes characteristic of factors that patients perceived as beneficial and/or associated with care satisfaction. Results Four themes emerged regarding factors perceived by patients as particularly beneficial: empathy and active listening; expertise in physical symptom management; assessing and addressing psychosocial needs; and availability of clinic staff between visits. Importantly, each of these themes stood in direct contrast to participants’ prior histories with the healthcare system. Conclusion(s) The elements of PC that participants perceived as beneficial align with the limited literature on drivers of satisfaction with palliative care. It was largely through the person-centered care skills of PC teams (i.e., active listening, ability to successfully address or triage a wide array of concerns, ability to expeditiously respond to messages) that outpatient visits led to perceived satisfaction with care. Impact While participants spoke highly of their experience in an outpatient palliative care clinic, our findings question the relative appropriateness of PC for this population. Many factors that patients perceived as beneficial (active listening, expeditious response to messages) are not inherently specific to a specialty-level palliative care skillset. Recognizing limitations in the specialty palliative care workforce, our study suggests that primary palliative care may remain an unexplored mechanism by which to address HS patient wellbeing.