Patient Perspectives Reveal the Hidden Burden of Drainage in HS

While pain has long been recognized as a dominant driver of disability in hidradenitis suppurativa (HS), other symptoms, particularly chronic and recurrent drainage, remain comparatively underexplored in both clinical trials and routine care. Drainage from HS lesions, typically consisting of pus, blood, or serous fluid and often accompanied by malodor, can significantly disrupt daily functioning and contribute to stigma, embarrassment, and social withdrawal.¹

Efforts to standardize outcome measurement in HS led to the establishment of the Hidradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC), which identified drainage as a core symptom domain requiring routine assessment in clinical trials. As part of this initiative, the Hidradenitis suppurativa DrainagE (HIDE) Scale was developed to provide a validated, patient-reported measure of drainage independent of quality-of-life impact. During the development of this scale, qualitative interviews revealed a broader and more nuanced picture of how patients experience drainage in daily life. The resulting qualitative secondary analysis explores those experiences in depth, with the aim of informing more person-centered approaches to HS care.²

Study Overview

The analysis drew on interview data collected during the development and validation of the HIDE Scale. A total of 38 adults with physician-confirmed HS and experience of draining lesions were interviewed between December 2022 and October 2023 at specialized dermatology clinics in Denmark and the United States. Participants represented a range of ages, genders, ethnic backgrounds, and disease severities, although most had Hurley stage II or III disease.

Using reflexive thematic analysis, researchers re-examined transcripts from concept elicitation and cognitive interviews to focus specifically on patients’ lived experiences of drainage. Three overarching themes emerged: difficulty describing drainage, the impact of drainage on mental well-being, and the physical challenges associated with managing drainage.

Key Findings

Drainage is difficult to explain
Many participants reported that “drainage” was not a term they routinely used or understood prior to clinical encounters. Once defined as the discharge of pus, blood, or wound fluid, patients were able to describe their experiences, often in vivid and highly individualized terms. Drainage was characterized both as a persistent state (constant seeping) and as an episodic process involving buildup, rupture, and release. Patients emphasized that volume alone did not capture severity; color, consistency, odor, anatomical location, and the specific lesion involved were all considered clinically meaningful. Quantifying drainage in precise volumes was viewed as unrealistic, reinforcing the value of patient-reported estimation rather than objective measurement.

Psychological burden and loss of control
Drainage had a significant impact on mental well-being, frequently described as part of a “rollercoaster” cycle of pain, rupture, and temporary relief. The unpredictability of drainage contributed to feelings of loss of control, frustration, and emotional exhaustion. Sudden episodes, particularly in public or intimate settings, were described as distressing and humiliating. Despite this burden, many patients noted that drainage itself was not always the most debilitating aspect of HS; rather, the intense pain during lesion buildup was often perceived as more disabling. Nonetheless, drainage amplified psychological distress by reinforcing unpredictability and social vulnerability.

Physical and practical challenges
Managing drainage required ongoing vigilance. Malodor was consistently cited as one of the most troubling features, persisting despite meticulous hygiene and contributing to social avoidance. Patients described frequent dressing changes, layering of absorbent materials, and repeated clothing changes—sometimes multiple times per day. Researchers noted many carried spare supplies to manage unexpected leakage. The physical workload associated with drainage management, combined with uncertainty about when drainage would occur, imposed a constant cognitive and logistical burden.

Clinical Implications

This analysis underscores that drainage in HS is not a singular or easily quantifiable symptom, but a multidimensional experience encompassing physical, psychological, and social domains. While pain remains a primary treatment target, researchers stated drainage warrants independent attention in both clinical assessment and therapeutic decision-making. The findings support the use of standardized patient-reported tools, such as the HIDE Scale, alongside open-ended clinical dialogue that allows patients to describe drainage in their own terms.

Importantly, the study highlights the need for person-centered care approaches that acknowledge the stigma, emotional distress, and daily management challenges associated with drainage. Addressing these factors may strengthen the patient–clinician relationship, improve shared decision-making, and better align treatment goals with patient priorities.

Limitations

As a qualitative secondary analysis, the findings are not intended to be generalized to all HS populations. The sample included a high proportion of patients with moderate to severe disease and predominantly consisted of women, with limited ethnic diversity in the Danish cohort. Researchers suggested that future research should explore drainage experiences across a broader demographic and disease spectrum.

Conclusion

Drainage is a central yet underappreciated component of the HS disease burden. This qualitative analysis provides detailed insight into how patients experience and interpret drainage, revealing impacts that extend beyond physical symptoms alone. Incorporating both standardized outcome measures and empathetic, individualized discussion into routine care may help clinicians better address this complex symptom and improve overall management of HS.

References

1. Ingram JR, Marzano AV, Prens E, et al. Hidradenitis suppurativa with and without draining tunnels: A real-world study characterizing differences in treatment and disease burden. J Eur Acad Dermatol Venereol. 2025;39(8):1431-1441. doi:10.1111/jdv.20550
2. Thestrup Hansen S, Villumsen B, Khaled M, et al. Experiences of drainage and associated impacts: A qualitative study among patients with hidradenitis suppurativa. JEADV Clin Prac. 2026. doi:10.1002/jvc2.70274.