Pain experiences among those living with hidradenitis suppurativa: a qualitative study

Abstract

Background Pain is rated by patients with hidradenitis suppurativa (HS) as the disease’s most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient–provider relationships and help identify strategies for addressing HS pain. Objectives This qualitative study sought to characterize lived pain experiences of those with HS. Methods English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants’ HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. Results Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3–7; scale ranges from 0 to 10, with 10 being most pain). Participants’ descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. Conclusions When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients’ QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.

Factors Affecting Treatment Selection Among Patients With Hidradenitis Suppurativa

“…A recent systematic review of the qualitative literature on experiences of individuals with HS identified a recurring theme of health care failing to meet patients’ needs and expectations. The study’s reported themes of stigmatization and limited access to HS specialty care were also identified in our larger qualitative studies on pain and access to health care in HS. Howell et al highlighted patients’ feelings of inadequate support from their physicians in their HS management.…”

“…Low prescription rates of these agents reflect potential undertreatment of HS, risking disease progression and morbidity. Poor disease control can also lead to an increased need for analgesic medications and searches for alternative pain relief strategies …”

The Influence of Pain on Reduced Quality of Life in Patients with Hidradenitis Suppurativa: A Single-Center Retrospective Study

“…In HS, black race has been associated with diagnostic delay, increased disease severity, lower access to dermatologic specialty care, and increased healthcare utilization [28][29][30]. A qualitative study also suggested perceived stigma from providers led patients to feel hesitant seeking care for their pain and contributed to undertreatment, especially during acute flares [16]. The complex interplay of systemic, patient, and provider factors continues to sustain health disparities experienced by black patients, highlighting the need for comprehensive approaches to address HS pain management.…”

“…Patients living with HS have 1.3-4.8 times higher odds of depression compared to control populations [11][12][13][14]. The painful abscesses and unpredictable flares may limit daily activities in patients with HS and can lead to feelings of hopelessness and social isolation [15,16].…”

Outcome Measures for the Evaluation of Treatment Response in Hidradenitis Suppurativa for Clinical Practice

“…Longitudinal recording of clinical outcomes may also support analyses of treatment effectiveness, which offers insight into treatment effect in the broader HS population that clinical trial data cannot provide . Further integration of patient-reported measures allows capture of treatment effect on symptoms and life quality, which patients may hesitate to discuss due to fear of stigmatization and which may otherwise be underestimated by clinicians . The objective of this study was to provide expert and patient consensus-based recommendations on the application of validated, HS-specific outcome measures that are feasible for clinical practice.…”