Empathy, expertise, and expeditious communication: identifying how people with hidradenitis suppurativa experience outpatient palliative care

Background

Hidradenitis suppurativa (HS) is a chronic inflammatory condition that significantly impacts quality of life across physical, emotional, and social domains. Palliative care (PC) is specialized care that offers a holistic approach to managing serious illnesses by addressing the multiple dimensions of suffering, yet individuals with chronic dermatologic conditions like HS rarely receive PC. Identifying how individuals with HS experience PC, a medical specialty with an explicit focus on addressing wellbeing holistically, may offer valuable insights for improving broader HS care.

Objectives

To explore how people with HS experience outpatient PC and to identify specific aspects of care driving this experience.

Methods

We conducted semi-structured interviews with eleven individuals with HS who had received outpatient PC at a single academic medical center. Eligible participants were referred from a specialty HS clinic, were English-speaking, and were at least 18 years old. Interviews focused on patients’ perceptions of the outpatient PC experience, including aspects of care impacting physical, emotional, and psychosocial wellbeing. Data was analyzed using thematic analysis to identify visit components driving care experiences.

Results

Four themes emerged as key components driving participants’ experiences in PC: (1) empathy and compassion, (2) expertise in pain and symptom management, (3) psychosocial support through an interdisciplinary team, and (4) effective care coordination and communication. Participants consistently contrasted their PC experiences with past experiences in other healthcare settings.

Conclusions

Our findings indicate that individuals with HS in this study valued aspects of care that prioritize empathy, symptom management, and effective communication. These care components point to the importance of building clinical structures that support patient-centered care for HS. Adequately resourcing dermatology clinics may enable the translation of valuable elements of palliative care into settings where people with HS traditionally seek care.