Quality of Life in Patients with Hidradenitis Suppurativa: A Scoping Review

1. Introduction

Hidradenitis suppurativa (HS) is a chronic, recurrent inflammatory skin disease characterised by painful nodules, abscesses, sinus tracts, and scarring, typically affecting intertriginous areas such as the axillae, groin, and anogenital region [1]. Lesions may rupture, producing malodorous discharge that contributes to pain, functional limitations, and marked psychosocial distress [2,3]. In Europe, the prevalence of HS ranges from 0.03% to 1%, with disease onset most commonly in early adulthood and a higher incidence among women [4,5,6,7].

The chronic, painful, and unpredictable course of HS, combined with the sensitive localisation of lesions and the limited availability of curative treatments, results in a substantial disease burden. Previous studies have consistently shown that HS has a greater negative impact on quality of life (QoL) than many other chronic dermatological conditions [8,9,10]. Patients frequently report persistent pain, social stigmatisation, emotional distress, impaired body image, difficulties in intimate relationships, and reduced work ability [11,12]. Psychiatric comorbidities, including depression and anxiety, are also more prevalent in individuals with HS compared with the general population [13,14].

Despite the recognised impact of HS on patients’ lives, assessing QoL remains challenging. A wide variety of instruments have been used across studies, resulting in fragmented and heterogeneous evidence. Generic dermatology-related measures, such as the Dermatology Life Quality Index (DLQI), are the most commonly applied tools; however, they may not adequately capture HS-specific features [15,16]. Although several HS-specific QoL instruments have been developed, many still present limitations related to validation, sensitivity, or recall periods, and their use in clinical research remains limited [17,18].

International initiatives, such as the Hidradenitis Suppurativa Core Outcomes Set (HISTORIC), have emphasised the importance of evaluating QoL through a multidimensional framework encompassing physical, psychological, social, emotional, and work-related domains [19]. Nevertheless, these dimensions have not yet been systematically mapped across the existing literature. Given the heterogeneity of study designs, outcomes, and assessment tools, this scoping review aimed to provide a comprehensive synthesis of how QoL has been assessed in patients living with HS, to identify the instruments used, describe the domains explored, and highlight the remaining gaps in the evidence base [20,21].

2. Materials and Methods

2.1. Desing

This scoping review was conducted in accordance with established methodological frameworks for evidence mapping studies. The review followed the framework originally proposed by Arksey and O’Malley [22], as further refined by Levac et al. [23] and the methodological guidance provided by the Joanna Briggs Institute (JBI) [24,25]. Reporting followed the PRISMA extension for scoping reviews (PRISMA-ScR) [26].

In line with the scope of this review, both QoL/Health-Related Quality of Life (HRQoL) instruments and patient-reported outcome measures (PROs) focusing on specific symptoms were considered. QoL instruments were defined as measures capturing the multidimensional impact of HS on daily life. At the same time, symptom-specific PROs were included when they explicitly explored patient-reported experiences closely linked to QoL impairment. These two categories were analytically distinguished throughout the review. The review protocol was registered with Open Science Framework https://doi.org/10.17605/OSF.IO/AUEPJ.

2.2. Eligibility Criteria

Peer-reviewed quantitative and qualitative studies involving patients diagnosed with HS were eligible for inclusion if they reported QoL outcomes, PROs, or instruments used to assess symptoms or QoL. No restrictions were applied regarding publication year or language. Studies were excluded if they focused exclusively on therapeutic interventions without reporting PRO or QoL data, if they were limited to the psychometric validation of instruments without application to HS populations, or if they addressed conditions other than HS. Grey literature and non-empirical publications (e.g., editorials, commentaries) were excluded to maintain a focus on peer-reviewed evidence. In line with scoping review methodology, eligibility criteria were iteratively refined as familiarity with the literature increased.

2.3. Information Sources

A comprehensive literature search was conducted across six electronic databases: PubMed, Cochrane Library, CINAHL, Web of Science, Scopus, and PsycInfo (Ovid). These databases were selected to capture biomedical, nursing, psychological, and health-related literature relevant to QoL and PRO assessment in HS. The search was performed between November 2025 and March 2026, with no restrictions on study design, publication year, or language.

2.4. Search Strategy

Search strategies were developed using a combination of Medical Subject Headings (MeSH), controlled vocabulary, and free-text terms related to HS and QoL. Search strings were tailored to the syntax of each database (Table 1). Reference lists of included full-text articles were also screened to identify additional relevant studies. Retrieved records were managed using Rayyan to facilitate screening, organisation, and duplicate removal.

2.5. Study Selection

Study selection was conducted in two stages. First, two reviewers independently screened titles and abstracts against the eligibility criteria. Potentially relevant articles were subsequently assessed through full-text review. Disagreements were resolved through discussion with a third reviewer to ensure consensus.

2.6. Data Extraction

Data were extracted using a structured charting form developed in Microsoft Excel, in line with JBI guidance [24]. Two reviewers independently extracted data from each included study, with discrepancies resolved by discussion. Extracted data included author, year of publication, country, study design, study objectives, and the QoL or PRO instruments used.

2.7. Critical Appraisal of Individual Sources of Evidence

Consistent with the purpose of scoping reviews, no formal critical appraisal of individual studies was performed [27]. All eligible peer-reviewed studies were included to provide a comprehensive overview of the available evidence.

2.8. Synthesis of Results

A narrative synthesis was used to summarise and present the findings of this scoping review, consistent with established methodological frameworks for scoping studies [22]. Included studies were grouped according to whether they reported QoL outcomes or other patient-reported measures in patients with HS. Findings are presented descriptively and supported, where appropriate, by tables and visual summaries to facilitate the interpretation of patterns across study designs, assessment instruments, and QoL domains.

3. Results

This section may be divided by subheadings. It should provide a concise and precise description of the experimental results, their interpretation, as well as the experimental conclusions that can be drawn.

3.1. Selection of Sources of Evidence

The search strategy yielded 407 records. After removal of duplicates, 234 unique citations were screened at the title and abstract level. Full-text assessment was subsequently performed, resulting in the inclusion of 21 studies that met the eligibility criteria. The study selection process and reasons for exclusion at each stage are presented in the PRISMA flow diagram (Figure 1) [28].

In accordance with scoping review methodology, secondary sources (systematic and narrative reviews) were included when relevant to QoL assessment, instruments, and frameworks, complement findings from primary research.

3.2. Characteristics of Sources of Evidence

The included studies were conducted across eight countries and spanned six geographical macro-regions. Most were carried out in Europe (n = 14, 67%), followed by North America (n = 2, 9.5%), the Middle East/Asia (n = 1, 5%), and international multicentre settings (n = 3, 9.5%). One study did not report the country of origin (n = 1, 5%). Germany was the most represented country, contributing four studies (19%) (Figure 2). Most articles were published in English (n = 20, 95%), and one in Spanish (n = 1, 5%).

3.3. Study Design and Temporal Distribution

Publications increased over the past decade, peaking in 2021 (Figure 3). Most included studies were primary research (n = 15, 71.4%), predominantly cross-sectional (n = 11, 52.4%). Prospective multicentre observational studies were fewer in number (n = 2, 9.5%), and only one quantitative study was identified (n = 1, 5%).

Secondary research comprised six studies (29%), four systematic reviews (19%), and two narrative reviews (9.5%). Study designs and publication characteristics are detailed in Table 2.

3.4. Study Objectives

The objectives were heterogeneous and reflected the multidimensional burden of HS. Several studies aimed to assess the overall impact of HS on patients’ QoL and its association with clinical severity or demographic factors. Other studies focused on specific symptoms, most commonly pain, pruritus, malodor, and sleep disturbances, and their contribution to QoL impairment. Additional research explored psychosocial dimensions, including anxiety, depression, body image, sexual health, work productivity, and emotional burden. Finally, a subset of studies synthesised existing evidence or addressed the broader burden of HS, including diagnostic pathways and patient activation. The main characteristics of the included studies are summarised in Table 2.

3.5. Overview of QoL Assessment in Hidradenitis Suppurativa

Across the included studies, QoL and HRQoL in patients with HS were assessed using a heterogeneous range of validated patient-reported instruments (e.g., [30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49]). The tools employed varied considerably in scope, dimensionality, and disease specificity, reflecting the lack of a standardised approach to QoL assessment in HS.

Dermatology-specific instruments were the most commonly used tools, with the Dermatology Life Quality Index (DLQI) being applied in the majority of primary studies (e.g., [29,30,31,32,33,34,35,36,40,41,42,43,45,46,47]). Multidimensional dermatology-specific measures, such as Skindex-29 and Skindex-17, were used less frequently but allowed a broader evaluation of emotional, psychosocial, and symptom-related domains (e.g., [33,34,35,36,39]).

Generic HRQoL instruments, including the EQ-5D and the SF-36, were employed in a limited number of studies, mainly to assess overall health status and enable comparisons with the general population (e.g., [41,43,46]). Disease-specific QoL instruments for HS were used infrequently, indicating limited uptake of tailored tools in the existing literature (e.g., [48]).

An overview of the QoL and HRQoL instruments used across the included studies and the domains assessed is provided in Table 3. The QoL domains reported in this table reflect the domains explicitly addressed by the original instruments and, where necessary, a thematic grouping derived from instrument subscales or item content, in line with their original validation frameworks.

3.6. QoL and HRQoL Instruments

The DLQI was the most frequently used instrument across the included studies and was consistently applied to capture the overall impact of HS on patients’ daily lives [29,30,31,32,36,40,41,42,43,45,46,47]. Across studies, DLQI-based findings uniformly indicated a marked impairment in QoL. Several studies employed multidimensional dermatology-specific instruments, including Skindex-29 and Skindex-17 [33,34,35,39], which enabled a broader assessment of emotional, psychosocial, and symptom-related domains. These measures allowed a more detailed exploration of patients’ experiences compared with single-score instruments. Disease-specific QoL instruments for HS were used infrequently. Among these, the HS-specific QoL questionnaire was applied in a limited number of studies to assess the overall burden of the disease using a tailored approach [48]. Generic HRQoL instruments, such as the Short Form-36 (SF-36) and the EuroQol-5D (EQ-5D), were employed in a small subset of studies [41,43,46] to evaluate overall health status and health-related disutility, mainly to allow comparisons with the general population. An overview of the QoL and HRQoL instruments used and the domains assessed across the included studies is presented in Table 3.

3.7. Symptom-Related Measures and Their Relationship with QoL

In addition to QoL instruments, several studies assessed key HS-related symptoms, using simple patient-reported scales [36,38,49]. Although these tools do not constitute QoL measures per se, the evidence consistently indicates that symptom burden plays a central role in driving QoL impairment. Pain emerged as the most influential symptom, followed by pruritus and malodor, which were frequently associated with emotional distress, social avoidance, and reduced daily functioning [30,40]. Sleep disturbance was also commonly reported and appeared closely linked to symptom severity [38,49].

3.8. Factors Associated with Poorer QoL

Across the included studies, several factors were consistently associated with poorer QoL in patients with HS. Higher disease severity and greater lesion burden were among the most frequently reported correlates of QoL impairment, although clinical severity scores did not fully explain patients’ perceived burden [31]. Lesion location also emerged as an important factor. Involvement of anogenital areas or other visible and sensitive body sites was associated with increased psychosocial distress and greater impairment in sexual function in [29,33,44]. Demographic and lifestyle factors, including female sex, higher body mass index, obesity, and smoking, were reported to be associated with worse QoL outcomes in several studies [31,36]. Psychological comorbidities, particularly anxiety and depression, frequently co-occurred with severe QoL impairment, highlighting the close relationship between emotional distress and the overall burden of HS [33,39].

3.9. QoL Domains Most Affected

Several QoL domains were consistently reported as being most affected in patients with HS. Physical functioning and daily activities were frequently impaired, largely due to pain, recurrent inflammation, and limitations in mobility and self-care [35,40,47]. Feelings of emotional distress, reduced self-esteem, and perceived stigma were repeatedly described, and often co-occurred with physical symptoms, amplifying overall QoL impairment [29,39]. Social relationships and sexual health emerged as particularly vulnerable domains. Difficulties in social interaction, intimacy, and sexual functioning were commonly reported and contributed to social withdrawal and impaired interpersonal relationships [29,33,44]. Work-related functioning represented another domain of substantial impact. Reduced work ability, absenteeism, and decreased productivity were frequently observed [35,40,47].

4. Discussion

Authors should discuss the results and how they can be interpreted from the perspective of previous studies and of the working hypotheses. The findings and their implications should be discussed in the broadest context possible. Future research directions may also be highlighted.

This scoping review mapped the evidence on QoL and HRQoL amongpatients with HS, focusing on affected domains, assessment instruments, and literature gaps. Overall, the evidence depicts HS as a condition associated with a pervasive, multidimensional burden, across physical functioning, emotional well-being, social relationships, sexual health, and work-related functioning [35,37,44]. A central finding is the marked heterogeneity in QoL assessment approaches. Studies used a wide range of validated tools, with variability in scope, dimensionality, and disease specificity, limiting comparability [30,37,44]. Dermatology-specific instruments, most frequently the DLQI, were widely adopted, but may not fully capture HS-specific concerns [30,36,44]. The use of multidimensional dermatology-specific tools, such as Skindex-29 and Skindex-17, and domain-specific measures like the Body Image Quality of Life Inventory (BIQLI), suggests that single global instruments are insufficient to represent the lived experience of HS [29,33,34,39]. Disease-specific tools such as the HSQoL were used only in a small subset of studies, indicating continued reliance on generic or dermatology-focused measures [37,48]. This gap is relevant because HS combines inflammatory activity, chronic pain, and stigmatising symptoms not fully captured by generic questionnaires [30,44]. Generic HRQoL instruments, including the SF-36 and EQ-5D, were used in some studies to enable broader comparisons and estimate health-related disutility [41,43,46]. However, while useful for cross-condition comparisons, they appear less sensitive to the psychosocial and symptom-driven burden of HS, reinforcing the need for combined measurement strategies. Symptom burden consistently emerged as a key driver of QoL impairment. These findings suggest that QoL in HS cannot be understood through clinical severity alone but must be considered alongside symptom experience and psychosocial context [30,31]. Mental health and psychosocial well-being appear central, with studies highlighting psychological distress, anxiety, depression, impaired self-esteem, and body image disruption as major correlates of QoL impairment [29,33,39]. Lesion location further modulates this burden, as involvement of anogenital or visible areas strongly affects sexuality and intimate relationships [29,33,44]. Work-related functioning is another consistently domain productivity, work limitations, and restrictions in daily activities commonly reported, underscoring the broader socioeconomic burden [35,40,47]. Occupational outcomes were often assessed alongside, rather than integrated within, QoL instruments, reflecting fragmentation in outcome measurement [35,47]. This review also highlights important evidence gaps. Most studies were cross-sectional, limiting understanding of QoL trajectories over time and the impact of symptom fluctuations, disease progression, or care pathways [31,37]. Instrument variability further hampers comparisons across settings and populations, emphasising the need for more consistent and HS-specific measurement strategies [30,34,48].

The identified gaps fall into three areas: (i) methodological gaps, including the predominance of cross-sectional designs and limited longitudinal evidence; (ii) measurement gaps, related to the heterogeneous and often non–HS-specific instruments used to assess QoL; and (iii) clinical gaps, reflecting the limited integration of psychosocial, sexual, and occupational domains into routine assessment strategies.

In conclusion, HS substantially compromises QoL across multiple domains, with symptom burden and psychosocial distress playing a pivotal role. A patient-centred approach should integrate validated QoL instruments with structured symptom evaluation and attention to mental health, sexual wellbeing, and occupational functioning. Future research should prioritise longitudinal designs and improved standardisation of outcome measures [30,35,44].

Limitations

This scoping review has several methodological limitations. First, the quality of included studies was not formally assessed. Second, heterogeneity of study designs, populations, and outcome measures, particularly about QoL instruments and symptom-specific tools, limited comparability and precluded quantitative synthesis. Third, although the search strategy was comprehensive, relevant studies may have been missed, especially unpublished or not indexed data. Finally, the predominance of cross-sectional studies limits interpretation of temporal trends and prevents causal inferences between disease severity, symptoms, and QoL outcomes. Despite these limitations, this review provides a structured overview of current evidence and highlights key gaps for future research.

5. Conclusions

This scoping review shows that HS has a substantial impact on QoL across multiple domains QoL impairment is driven not only by disease severity but also by symptom burden, psychosocial distress, and the lesion location. The findings highlight marked heterogeneity in the instruments used to assess QoL and related outcomes. Dermatology-specific tools are widely used but often fail to capture HS-specific concerns. HS-specific QoL instruments remain underutilised, and most evidence comes from cross-sectional studies, limiting insight into changes over time. Overall, the results underscore the need for more comprehensive and standardised approaches to QoL assessment in HS. Improved integration of multidimensional and HS-specific measures, together with longitudinal study designs, would strengthen the evidence base and better reflect patients’ lived experiences.

6. Implications for Nursing Practice

The findings of this scoping review highlight several implications for nursing and clinical practice. Given the strong association between symptom burden QoL impairment, routine symptom assessment using patient-reported measures may support a more comprehensive understanding of patients’ experiences. As clinical severity does not fully reflect the burden of HS, integrating QoL and PRO measures into clinical care may help identify individual needs beyond disease activity. Attention to psychosocial aspects may further support person-centred care. Overall, a holistic, multidisciplinary approach, where nurses contribute through symptom monitoring, patient education, emotional support, and care coordination, may improve patient management. The use of multidimensional tools may help capture disease complexity and guide care planning.