Quality of Life





Introduction


Hidradenitis suppurativa (HS) is characterized by relapsing, painful, suppurating, bleeding nodules, abscesses, and sinus tracts that primarily affect intertriginous skin. Aside from its debilitating physical manifestations, the disease carries a profound psychological burden and socioeconomic impact. These factors contribute to a significantly impaired quality of life (QoL) for patients with HS. In this chapter, we will cover a broad range of factors that impact QoL in HS patients, including physical symptoms, mental health disorders, substance use disorders, sexual health, and daily and work functions. We also provide recommendations for clinicians on how to mitigate these contributing factors ( Table 21.1 ). Finally, we will end the chapter with a discussion of the high HS-related costs incurred by individual patients and society as a whole.



Table 21.1

Recommendations to Help Mitigate Factors Impacting Quality of Life in Hidradenitis Suppurativa Patients


















































Quality of Life Factor Recommendations for Clinicians
Physical Symptoms
Pain
Pruritus
Drainage
Odor


  • Optimize disease control to reduce malodorous discharge



  • Counsel patients about wound dressings, clothing choices, and other methods of odor control

Mental Health
Depression


  • Screen for depressive symptoms (e.g., sadness, hopelessness, lack of interest in usual activities, reduced appetite, poor concentration)



  • Optimize disease control to reduce impact on mood



  • Ensure patient has a primary care provider



  • Refer to a mental health specialist as needed

Risk of suicide


  • Screen depressed patients for suicidality



  • If risk of suicide suspected, follow institutional/facility protocol to ensure immediate patient safety



  • Follow up closely and collaborate with mental health specialists for long-term care

Anxiety


  • Assess patients for signs and symptoms of anxiety



  • Optimize disease control to reduce severity and frequency of flares



  • Provide patients with a written home-management action plan that provides instructions on flare recognition and steps for treatment



  • If an anxiety disorder is suspected, refer to a mental health specialist

Substance Use Disorders (SUD)
Alcohol, opioids, cannabinoids


  • Screen all patients for use of alcohol, opioids, or cannabinoids



  • Screen habitual users for substance misuse and/or dependence



  • Refer patients with SUD to mental health specialists or treatment centers as needed



  • Provide patients with information regarding substance-specific support networks



  • Monitor patients long-term for SUD relapse

Sexual Health
Sexual distress and dysfunction


  • Elicit patient concerns regarding sexual health



  • Optimize disease control to minimize pain, inflammation, and discharge



  • Ask patients for permission to involve their partners in disease education and expectation management



  • Educate patients and their partners that hidradenitis suppurativa (HS) is not contagious



  • Privately screen patients for intimate partner violence; if suspected, follow protocols to ensure patient safety

Daily and Work Functions
Sleep disturbance


  • Assess for sleep disturbance or insomnia in patients struggling with daily life and work functioning



  • Control physical symptoms of HS and associated psychological components



  • Encourage good sleep hygiene practices



  • Use caution when prescribing sleep pharmacotherapy in patients using alcohol, sleep aids, opioids, or any other substances or medications with central nervous system-depression properties

Work disability


  • Screen for reduced or loss of work productivity and income due to HS-related disability



  • Advocate for work conditions that accommodate patient needs related to HS (e.g., cooler temperatures, appropriate work uniforms, adequate break periods for wound care, etc.)



  • Assist patients in obtaining disability benefits due to debilitating effects of HS when needed



Quality of Life Comparisons to Other Dermatologic Diseases


The impact of HS on patients’ QoL has been compared to that of other chronic dermatoses. There are a few publications in the literature that shed light on this topic, with the majority utilizing patient-level data (e.g., self-reported questionnaires). A French study conducted in a hospital-based setting ( n = 61) found HS to have a more debilitating effect on QoL than neurofibromatosis type 1 (NF1), chronic urticaria, psoriasis, or atopic dermatitis. The authors found significantly higher mean Skindex-France index scores, indicating a stronger impact on QoL in the HS cohort versus the NF1 cohort. HS patients also fared worse in several dimensions of the VQ-Dermato index (a French-language dermatology-specific QoL instrument), with significantly higher mean scores than patients with chronic urticaria, psoriasis, and atopic dermatitis.


Psoriasis is often chosen as a comparator disease due to an abundance of data and shared similarities with HS (i.e., disease chronicity and psychosocial burden). Published data from international clinical trials for adalimumab revealed that HS patients reported significantly higher scores than patients with plaque-type psoriasis in several important QoL metrics (Visual Analog Scale [VAS] pain: 54.3 vs. 36.1; Dermatology Life Quality Index [DLQI]: 15.3 vs. 11.3; EuroQoL 5D VAS 58.8 vs. 50.8). In a study conducted in an Italian outpatient dermatology clinic ( n = 69), similar results were reported in a patient-level assessment of how HS impacts QoL. Compared with psoriasis patients, HS patients in this study reported a higher mean symptom score (69.4 vs. 53.7) and psychosocial score (56.1 vs. 32.7), indicating worse QoL than their psoriasis counterparts.


Despite the higher reported QoL burden of HS than psoriasis, there are currently many more systemic treatment options for psoriasis than HS. We hope that this will change in the near future with increased investigation of potential therapeutic modalities for HS. A discussion of pipeline therapeutics can be found in Chapter 34 .


Physical Symptoms and Disease Severity


Physical symptoms of HS include pain, pruritus, exudation, bleeding, and malodor. Given the chronicity of HS, these symptoms may lead to physical and psychosocial suffering or even disability. A Polish observational study ( n = 103) found that patients identified pain as the most troublesome symptom of their disease. Nearly all of the study participants (97.1%) reported pain during the course of their disease, and 77.5% reported pain in the last 7 days. In comparison, 62.1% reported pruritus over the course of their disease, and 41.7% reported pruritus within the last 7 days. Pain has been described as interfering with activities of daily life, work, personal relationships, and sleep for patients with HS. The pathophysiology and management of pain in HS are discussed in detail in Chapter 19 .


Although pain is the predominantly reported symptom, itch and malodor also impact QoL. A Spanish cross-sectional study involving 233 HS patients revealed statistically significant correlations between DLQI scores and respective Numerical Rating Scale (NRS) values for pain, pruritus, and malodor. The authors found that pruritus intensity was associated with female sex, number of anatomic regions affected, intensity of suppuration, and concomitant Crohn’s Disease. Meanwhile, malodor intensity was positively correlated with body mass index, disease duration, number of affected regions, intensity of suppuration, and Hurley stage classification.


With respect to malodor alone, a Canadian cross-sectional study ( n = 51) found that 88% of the study participants experienced malodorous discharge in affected skin regions. Even though the authors did not find any significant difference in mean DLQI scores between the high-odor and low-odor groups, total and emotions-related mean Skindex-29 scores demonstrated a statistically significant difference between these comparator groups. Patients in this study reported a wide spectrum of management strategies; the most commonly reported ones were wearing loose-fitting clothes, bandaging of malodorous areas, utilizing warm compresses, reducing weight, and using anti-perspirant/deodorants.


Aside from the physical symptoms related to HS, disease severity can also impact QoL profoundly. Studies have shown a significant association between clinical stages of HS and measures on the DLQI. In turn, higher DLQI scores, indicating a greater impact on QoL, correlated with worsening severity of depression, anxiety, and loneliness.


Mental Health


Depression


Depressive disorders are marked by sadness, emptiness, irritability, somatic (e.g., poor sleep and appetite) and cognitive (e.g., poor concentration) features that interfere with an individual’s ability to function. Specifically, major depressive disorder (MDD) as a psychiatric diagnosis is characterized by at least 2 weeks of changes in affect, cognition, and neurovegetative functions. In the United States, the 12-month prevalence of MDD is approximately 7%, and MDD is an established comorbidity of chronic pain.


To date, studies examining the psychiatric burden of HS have primarily focused on the prevalence of depression, and less on anxiety or other psychiatric disorders. Depression has been identified as an important comorbidity of HS in a number of studies, but results of studies examining the prevalence of depressive symptoms have been mixed. A recent meta-analysis of 28 studies of depression in HS found a prevalence of 21% and that HS patients were twice as likely to have depression compared to controls. In a retrospective analysis of new-onset depression in HS patients based on electronic health records data ( n = 49,280 for adult HS patients and 3,042 for pediatric HS patients), depression incident rates of 4.8 per 100 person-years in the adult population and 3.0 per 100 person-years in the pediatric population were reported.


Research has confirmed that feelings of shame, stigma, embarrassment, social isolation, and pain can contribute to depressive symptoms in HS. Since HS patients experience at least one, and often several, of these factors on a daily basis, it is not difficult to understand how depressive symptoms may evolve and intensify over the course of the disease. For instance, in one study ( n = 94), HS patients demonstrated significantly higher scores than healthy controls with respect to depression (5.45 vs. 4.16) and loneliness (UCLA Loneliness Scale: 42.8 vs. 35.57), as well as significantly lower self-esteem (Rosenberg Self-Esteem Scale: 18.91 vs. 19.77).


Suicide


In general, thoughts of death, suicidal ideation, and suicide attempts are common in individuals suffering from MDD. Given that depressive symptoms disproportionately affect HS patients as previously discussed, the risk of suicide for those suffering from this chronic inflammatory disease merits attention. Furthermore, chronic pain, a clinical hallmark of HS, can compound the suicide risk in HS.


A population-based study in the United States ( n = 49,380 HS patients and approximately 23 million non-HS controls) found the absolute risk of completed suicide to be 0.8% in HS compared with 0.3% in the control population. After adjusting for age, gender, and race, the authors reported that HS patients had a significantly increased risk of suicide compared to those without HS (OR: 2.88). The risk of suicide in HS correlated with advancing age, and was the highest in individuals aged 60 or older (OR: 3.62).


A Danish cohort and cross-sectional study ( n = 7,732 HS patients and 4,354,137 background population) corroborated the above findings from the U.S. study regarding the risk of completed suicide in HS. They found a significantly increased risk of completed suicide (adjusted hazard ratio [HR]: 2.42) and antidepressant use (adjusted HR: 1.30) in the HS cohort compared to the background population. Suicidality might not always be apparent, so we recommend screening as appropriate by all members of the interdisciplinary HS care team.


Anxiety


A small number of studies have examined anxiety as an associated psychiatric comorbidity of HS. Anxiety disorders are defined by excessive fear and anxiety along with related behavioral disturbances. They can be further categorized as panic disorder, social anxiety disorder, agoraphobia, or generalized anxiety disorder. Fear of disease flare-ups, malodourous discharge, soiling of clothing from bleeding/exudation, and financial distress have been postulated to exacerbate symptoms of anxiety in HS. In a recently published meta-analysis of 12 studies, the authors found a prevalence of 12% and a nearly two-fold risk of anxiety among HS patients relative to controls.


Bipolar Disorder, Psychosis, and Personality Disorders


Few studies have examined the prevalence of other psychiatric diagnoses, such as bipolar disorder, schizophrenia, or personality disorders. An Israeli cross-sectional study ( n = 4,191 HS patients and 20,941 matched controls) found a significantly higher prevalence of schizophrenia in the HS cohort than the control group (1.4% vs. 0.4%). Analysis of a Finnish registry found that HS patients have a significantly increased risk of being diagnosed with at least one psychiatric comorbidity compared to psoriasis (PSO) patients (OR: 1.34) or those with melanocytic nevi (MN) (OR: 2.04). Respectively, the authors found a significantly higher prevalence of schizophrenia, bipolar disorder, and personality disorders in the Finnish HS population relative to their matched psoriasis and MN controls.


These findings do not indicate causality and need to be further explored. We encourage dermatologists to assess patients for mental health disorders, including those on the psychosis spectrum, as early diagnosis and referral to treatment can be life-changing. They may even enhance adherence to medical therapy and thus affect treatment outcomes for HS patients.


Substance Use Disorders


Several studies have demonstrated an increased prevalence of substance abuse disorders (SUD) in HS patients. One US cross-sectional analysis ( n = 32,625) found a statistically significant difference between the prevalence of SUD among HS patients compared to their non-HS counterparts (4.0% vs. 2.0%; P < .001). Of the HS patients affected by SUD, the three most commonly reported substances are alcohol, opioids, and cannabinoids. While HS patients demonstrate higher instances of SUD, it remains unclear if such behaviors evolved to help them cope with the chronic inflammation and pain of the disease, or if they are more closely tied to the psychosocial burden of living with HS.


Interestingly, the authors found that the likelihood of developing SUD was higher in HS patients who were not diagnosed with depression or anxiety. The authors postulated that chronic pain issues and overall QoL impairment might play a larger role in the development of SUD in HS than the presence of comorbid psychiatric conditions. We recommend a comprehensive approach to managing HS patients affected by SUD. This includes ensuring that the patient has a primary care provider, referring the patient to mental health specialists, as well as addressing the patient’s disease symptoms, psychiatric burden, and other associated comorbidities.


Alcohol


The proportion of SUD cases among HS patients that are attributed to alcohol abuse was reported to be as high as 47.9% in the aforementioned U.S. cross-sectional study. In another study, 27,725 blood donors from Denmark were queried about their drinking habits. Significantly greater proportions of participants with HS reported wine and spirits consumption relative to non-HS participants. There was no significant difference in beer consumption habits between those with and without HS. The authors did not control for psychiatric comorbidities, such as depression, or socioeconomic factors. Moderate depression was found to be significantly more prominent in the HS group (3.2%) than the non-HS group (0.7%), which could have contributed to increased alcohol consumption by HS patients.


A single-center study reported an increased risk of alcohol dependence among HS patients; however, after adjusting for psychiatric comorbidities and other confounding variables, HS patients actually had smaller odds of alcohol dependence compared with the control group. Two case-control studies relying on patient-level data were not able to demonstrate any association between HS and alcohol dependence. Future research with large and well-controlled studies on alcohol dependence and HS is warranted.


Opioids


The Diagnostic and Statistical Manual of Mental Disorder (DSM)-5 publication characterizes opioid use disorder (OUD) along a mild-moderate-severe spectrum, on which a patient’s seeking behavior progresses despite multiple deleterious consequences to their personal and professional lives. In determining whether HS patients are at an inherent risk for OUD, several confounding factors must be taken into account. Given that pain is a hallmark feature of HS, opioids and other forms of pain control have been prescribed to patients suffering from the disease.


Few studies have addressed the incidence and management strategies of OUD in HS. The proportion of SUD cases attributable to opioids has been reported as 32.7% in the US-based cross-sectional analysis. In addition, a separate retrospective cohort study involving over 20,000 HS patients found them to be at a significantly increased risk (adjusted OR: 1.53) of developing new long-term opioid use relative to controls. Certain risk factors, such as advancing age, ever smoking, history of depression, and baseline Charlson comorbidity index score, were correlated with higher odds of OUD development in HS.


We recommend thorough screening for SUD in HS patients and paying special attention to pain management. Over-prescribing opioids to appease patients without adequately assessing their pain control needs could lead to opioid tolerance and dependence in HS. Undertreating pain for fear of inducing opioid addiction can create a cycle of uncontrolled pain, which in turns exacerbates opioid-seeking behavior. Early referral of patients with chronic or recalcitrant pain to pain management specialists is recommended. A mental health specialist may need to be involved to address any underlying psychosocial component that may predispose a patient to opioid misuse. A multi-disciplinary strategy to address OUD may help preserve physician-patient rapport and improve patient adherence to medical therapy.


Cannabinoids


Few studies have shown increased cannabis use among patients with HS. Cannabis accounted for up to 29.7% of SUD cases in the above-referenced US cross-sectional study. A retrospective French study reported a significant difference between the prevalence of cannabis use in the HS cohort (34.0%) during the past 12 months compared to the psoriasis cohort (11.6%). The cannabis users in this study consisted mostly of young men with lower body mass indexes. Of note, both HS and psoriasis participants reported pleasure as the first motivation for cannabis use, not pain control, and the majority of the HS group (69.4%) had begun using cannabis prior to disease onset. Within the HS group, the researchers found no significant differences in Hurley stage, DLQI scores, or disease course between cannabis users and nonusers. Interestingly, cannabis users reported a significantly higher VAS pain score during disease remission periods than nonusers (1.7 vs. 1.1), while there was no statistically significant difference in pain scores between the two groups during disease flares. The level of addiction to cannabis was significantly higher in the HS group compared with the psoriasis group (Cannabis Abuse Testing Score: 8.4 vs. 4.1). These studies highlight the need for further research on cannabis use in HS patients.


Sexual Health


There is limited evidence regarding the impact of HS on sexual health. However, a correlation between sexual distress/dysfunction and decreased QoL in HS patients has been found. Some studies suggest that female HS patients tend to be disproportionately affected by sexual distress compared with their male counterparts.


A Danish study on the psychosocial impact of HS reported descriptive data on intimate relations from 12 participants at a single HS clinic. Patients described finding a partner as challenging due to “disgusting lesions too complicated and too difficult to explain.” Those who were in a relationship found it burdensome to disclose and explain the nature of their HS, and avoided showing their skin to their partners if draining lesions were present. Some of the study participants reported that their sexual life had stopped due to HS.


The impact of HS on sexual health and partner intimacy extends beyond emotional health to encompass safety concerns. A Canadian cross-sectional study with 128 HS patients and 115 acne patients found that HS patients are at a significantly increased risk (OR: 2.35) for intimate partner violence (IPV) compared to the acne control group. Research has uniformly underscored the importance of assessing sexual health during routine clinic visits and as an outcome measure in HS trials. Providers should also have a heightened awareness regarding the risk of IPV among their HS patients and should consider screening for IPV with a validated screening tool.


Daily and Work Functions


The physical symptoms and psychosocial burden associated with HS can interfere with daily life/work functioning and thus further impact patients’ QoL. In this section, we will discuss specific lifestyle and vocational issues experienced by HS patients. These include sleep disturbance, disutility (i.e., disability due to a chronic disease) and loss of work productivity, as well as challenges to implementing recommended lifestyle modifications.


Sleep Disturbance and Daytime Somnolence


In the literature and our clinical experience, HS patients often report sleep disturbance and daytime somnolence. Recent studies have shown that pain and pruritus are major contributors to poor sleep quality. Components of sleep that are affected in HS patients include sleep latency, duration, and disturbance. The authors of a cross-sectional Polish study with over 100 HS patients and 50 healthy controls found that HS patients had a significantly more impaired sleep quality score relative to healthy controls. Severities of pruritus and pain as measured by VAS scores were positively correlated with insomnia scores. These findings are in line with what we have learned from other skin conditions (e.g., atopic dermatitis), where pruritus can lead to disrupted sleep patterns. Activities of daily life may be impacted by two independent factors: pruritus alone, or daytime somnolence as a result of insomnia.


Disutility and Loss of Work Productivity


HS patients often face challenges involving disutility and loss of work productivity. HS typically appears during the second and third decades of life and thus has the potential to negatively impact patients’ early career trajectories. Studies have shown that HS patients missed more workdays than the general public, with one study reporting up to an average work loss of 33.6 days per year. At 2-year follow-up, 23% of the study participants believed that HS negatively impacted their chance for a promotion, and 10% reported losing their jobs due to HS.


A retrospective study investigated a claims database of employed HS patients in the United States. The researchers found that newly diagnosed HS patients experienced a slower income growth and were significantly more likely to leave the work force than controls. HS patients demonstrated statistically significant differences compared to controls in the following metrics: more work loss days (18.4 vs. 7.7), higher annual indirect costs ($2,925 vs. $1,483), and lower annual income ($54,925 vs. $62,357).


Challenges to Implementing Lifestyle Modifications


HS patients often face physical and social barriers, which may hinder their ability to implement positive lifestyle changes. HS has been linked to obesity and active smoking. Despite their deleterious health effects, tobacco usage and overeating are ways in which some patients cope with the stress associated with HS. In a qualitative Danish focus-group study, patients reported feeling that HS and its symptoms are outside their control. As such, they considered any long-term lifestyle modifications as futile.


Studies have shown that appropriate weight loss and smoking cessation can improve the overall health of HS patients. However, in addition to feeling a lack of control over their health, chronic pain often prevents patients from engaging in activities that can help promote weight loss, such as exercising or participating in sports. Moreover, embarrassment and fear of judgment could prevent HS patients from forming healthy social interactions. The aforementioned qualitative study also found that HS patients reported feeling alone regarding their disease and would like the opportunity to meet or have online contact with other HS patients.


Empowering patients to be partners in managing their HS disease may lead to enhanced care outcomes. In addition, encouraging HS patients to explore patient-led groups for social support and sharing of resources may promote a sense of community among them. HS support groups are discussed in detail in Chapter 33 .


Healthcare Costs Related to Hidradenitis Suppurativa


HS places a large socioeconomic burden upon individual patients and society as a whole. First and foremost, the financial consequences of HS rest on the shoulders of each patient. As previously mentioned, HS patients reported more work day loss, lower annual income, and higher total indirect costs compared to the general public. This does not factor in the expenses associated with medical/hygiene supplies (e.g., wound dressings and bandages) and the time dedicated to taking care of HS lesions on a daily basis.


Second, HS-related care can inflict disproportionately high costs on the healthcare system. A 3-year claims data analysis in the United States with over 150,000 patients found that HS patients had a significantly higher rate of inpatient hospitalization (15.8%) than psoriasis patients (10.8%) and healthy controls (8.6%). Similarly, emergency department (ED) utilization was significantly higher in the HS cohort (27.1%) than the psoriasis cohort (17.4%) or the control group (17.2%). The mean outpatient cost was significantly higher among HS patients ($6,863) compared to psoriasis patients ($6,267) and healthy controls ($4,071).


Another U.S.-based cohort study reflected similar findings as above: the HS cohort utilized high-cost healthcare settings significantly more than the psoriasis cohort (hospitalization: 5.1% vs. 1.6%; ED admission: 7.4% vs. 2.6%). Based on data from the US National Inpatient Sample between 2002 and 2012, a separate group of researchers found that HS accounted for greater than $38 million of excess mean costs of mental health-related hospitalizations per year.


The high use of acute care settings likely stems from multiple factors, including delayed or misdiagnosis, poor access to HS treatment centers, and a limited armamentarium of effective and lasting therapy for this disease. Research has shown that patients receive more appropriate and cost-effective care at outpatient dermatology clinics than from non-dermatologists or from ED visits. Increasing awareness of HS among front-line providers to reduce delay in diagnosis, encouraging earlier referrals to dermatology to establish a “home” for HS, and providing patients with written home-management action plans are steps to decreasing acute care setting utilization.


Conclusion


The debilitation and devastation that HS brings to patients’ lives are often widespread. With this chapter, we aimed to paint a more complete picture of the challenges that HS patients face on a daily basis and raise awareness about the profound impact the disease has on patients’ QoL. Most importantly, we hope that this awareness can translate into continued and heightened efforts to improve disease education and research, optimize medical treatments, and expand psychological/social/financial support for HS patients.



References

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Feb 19, 2022 | Posted by in Dermatology | Comments Off on Quality of Life

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