Major life changing decision profile: Creation of the Polish language version

Chronic diseases have long-term consequences and can affect individuals' life course. The aim of this study was to create the Polish language version of a questionnaire estimating the impact of the disease on important life decisions-the major life changing decision profile (MLCDP). The translation of the MLCDP followed international guidelines. The created Polish language version of the questionnaire was administered to 32 nephrology and dermatology ward inpatients. To assess its properties, statistical analysis of the results obtained was conducted. The Polish language version of the MLCDP demonstrated very good internal consistency with a Cronbach α coefficient of 0.84. The questionnaire presented excellent test-retest reliability, established with a coefficient ICC of 0.97. The Polish language version of MLCDP has shown high internal consistency and reproducibility, and can be used effectively to assess the cumulative impact of the disease by indicating the number of major life decisions affected by chronic disease

Outcome measures for the evaluation of treatment response in hidradenitis suppurativa for clinical practice

Importance Although several clinician- and patient-reported outcome measures have been developed for trials in hidradenitis suppurativa (HS), there is currently no consensus on which measures are best suited for use in clinical practice. Identifying validated and feasible measures applicable to the practice setting has the potential to optimize treatment strategies and generate generalizable evidence that may inform treatment guidelines. Objective To establish consensus on a core set of clinician- and patient-reported outcome measures recommended for use in clinical practice and to establish the appropriate interval within which these measures should be applied. Evidence Review Clinician- and patient-reported HS measures and studies describing their psychometric properties were identified through literature reviews. Identified measures comprised an item reduction survey and subsequent electronic Delphi (e-Delphi) consensus rounds. In each consensus round, a summary of outcome measure components and scoring methods was provided to participants. Experts were provided with feasibility characteristics of clinician measures to aid selection. Consensus was achieved if at least 67% of respondents agreed with use of a measure in clinical practice. Findings Among HS experts, response rates for item reduction, e-Delphi round 1, and e-Delphi round 2 surveys were 76.4% (42 of 55), 90.5% (38 of 42), and 92.9% (39 of 42), respectively; among patient research partners (PRPs), response rates were 70.8% (17 of 24), 100% (17 of 17), and 82.4% (14 of 17), respectively. The majority of experts across rounds were practicing dermatologists with 18 to 19 years of clinical experience. In the final e-Delphi round, most PRPs were female (12 [85.7%] vs 2 males [11.8%]) and aged 30 to 49 years. In the final e-Delphi round, HS experts and PRPs agreed with the use of the HS Investigator Global Assessment (28 [71.8%]) and HS Quality of Life score (13 [92.9%]), respectively. The most expert-preferred assessment interval in which to apply these measures was 3 months (27 [69.2%]). Conclusions and Relevance An international group of HS experts and PRPs achieved consensus on a core set of HS measures suitable for use in clinical practice. Consistent use of these measures may lead to more accurate assessments of HS disease activity and life outcomes, facilitating shared treatment decision-making in the practice setting

Surgical Procedures in Hidradenitis Suppurativa

Hidradenitis suppurativa is difficult to treat owing to its complex pathomechanism; besides the extensive inflammation with abscesses and inflammatory nodules, there is also an architectural loss with sinus tract formation and in severe cases with extensive scarring. Therefore, surgery is mandatory in moderate and severe HS

Hidradenitis Suppurativa Quality of Life 24 (HSQoL-24)now available for Polish patients: creation and validationof the Polish language version

Introduction: Hidradenitis suppurativa (HS) is a chronic, inflammatory skin disorder with a well-documented impact on quality of life (QoL). Due to the very distinctive features of HS the clinical picture, and lack of specific questions, generic dermatology QoL questionnaires cannot adequately reflect patients’ suffering. Aim: To translate and validate the Polish version of the Hidradenitis Suppurativa Quality of Life 24 (HSQoL-24) questionnaire. Material and methods: The standardized translation process included forward and backward translation from the English version of the instrument. The final version was subsequently validated on a group of 30 HS patients, who completed the questionnaire twice. Internal consistency, test-retest reliability, and reproducibility of the results were also analysed. Results: The Polish version of HSQoL-24 showed excellent internal consistency, with a Cronbach α coefficient of 0.908. Moreover, excellent reproducibility of the results was observed, with an intraclass correlation coefficient of 0.908. The HSQoL global score correlated positively with Dermatology Life Quality Index (DLQI) and Hidradenitis Suppurativa Quality of Life (HiSQoL) questionnaire. Conclusions: The Polish version of HSQoL-24 has excellent internal consistency, good reproducibility, and adequate validity. It may be of help in assessing QoL impairment in HS patients in daily practice and research

Pain in Hidradenitis Suppurativa: A Cross-sectional Study of 1,795 Patients

Hidradenitis suppurativa is a chronic, inflammatory skin disorder that affects the pilosebaceous unit of the intertriginous body areas. Pain is one of the most important problems in patients with hidradenitis suppurativa. The aim of this study, which included 1,795 patients, was to evaluate the prevalence and characteristics of pain. The intensity of pain was assessed with a numerical rating scale. In addition, pain intensity was correlated with various clinical features. Pain was reported by 83.6% of subjects. The majority of patients (77.6%) experienced mild pain; women and smokers tended to experience more intense pain. Pain intensity was greater in patients with multiple affected skin areas and correlated positively with the number of those affected areas (r = 0.151, p < 0.001). There was no difference in pain intensity between affected locations. The worst pain was observed in the patients with the most severe disease and it would weaken significantly along with the severity of hidradenitis suppurativa (assessed using the Hurley staging system and the International Hidradenitis Suppurativa Severity Score System)

Quality-of-Life Impairment among Patients with Hidradenitis Suppurativa: A Cross-Sectional Study of 1795 Patients

The chronic, inflammatory skin disorder hidradenitis suppurativa (HS) is associated well documented negative influences on patients' quality of life (QoL). The aim of this study was to present more robust data on patients' QoL impairment by demographic data and its correlation with well-known HS risk factors on a cohort of 1795 German patients. The instrument used for measuring QoL in this study was the Dermatology Life Quality Index (DLQI). Overall, patients reported a very large effect of HS on their QoL (mean DLQI: 13.2 +/- 8.1 points), and 22% of the analyzed population even reported to consider the effect as extremely large. Women tended to experience significantly higher impairment than men (p < 0.001). QoL impairment correlated positively with pain (r = 0.581, p < 0.001), HS severity (measured by the International Hidradenitis Suppurativa Severity Score System (IHS4)) as well as Hurley. Neck involvement tended to decrease QoL significantly more than any other location (14.7 +/- 8.3 points). This study confirms the enormous influence of HS on patients' QoL in a large cohort. Knowledge of QoL impairment in such patients is crucial for proper understanding and holistic management of this disease

LAight (R) Therapy Is an Effective Treatment Option to Maintain Long-Term Remission of Hurley I and II Hidradenitis Suppurativa: Results from Period B of RELIEVE, a Multicenter Randomized, Controlled Trial

Background: Hidradenitis suppurativa is a chronic, inflammatory, burdensome skin disease where current first-line treatments are limited to topical and/or systemic antibiotics which cannot be applied for long-term disease management. Period B of the RELIEVE study analyzes whether LAight (R) therapy can sustain or even increase remission after a first topical antibiotic treatment cycle. Methods: The RELIEVE study was performed as a two-period multicenter randomized controlled trial with blinded assessment. For period A from week 0 to week 16, the 88 participating Hurley I and II patients were randomized to either a group receiving topical clindamycin 1% solution combined with 8 additional bi-weekly treatments with LAight (R) therapy (group TC + L) or a group which was treated with topical clindamycin 1% solution only (group TC). After 16 weeks, patients entered open-label period B and both groups were treated exclusively with LAight (R) therapy for an additional 16 weeks (8 sessions, group TC + L/L and group TC/L). Results: In total, 88 patients were enrolled in RELIEVE. Seventy-eight patients entered period B; 39 belonged to group TC + L/L and 39 to group TC/L. The IHS4-response at the start of period B was 62% (group TC + L/L) and 33% (group TC + L). During the 16 weeks of additional monotherapy with LAight, in both groups > 90% of patients who responded to therapy in period A maintained their IHS4-response at week 32. IHS4 response rates continued to rise up to 79% of the TC + L/L group and up to 71% of the TC/L group during period B at week 32. Achievement of HiSCR and certain patient reported outcomes confirmed primary endpoint results. Conclusion: LAight (R) therapy is an effective approved therapy option for Hurley I and II HS that can be used continuously to maintain treatment success. During 16 weeks of follow-up in period B, over 90% of patients with response after period A maintained their treatment outcome, while more than 60% of prior nonresponders gained response. The fact that LAight (R) therapy can be applied continuously, is very effective and is well tolerated makes it a valuable treatment tool in the design of HS long-term treatment modalities. (C) 2022 The Author(s).Published by S. Karger AG, Base

Sexual Dysfunction and Quality of Life in Patients with Hidradenitis Suppurativa and Their Partners

Hidradenitis suppurativa (HS) is a chronic skin disease that profoundly affects patients&rsquo; quality of life (QoL) and sexuality. Few data are available on the impact of HS on patients&rsquo; partners. We aimed to explore the QoL and sexual function of patients&rsquo; partners and the factors associated with their impairment and to compare the QoL and sexual function of single patients and those in a stable relationship. We conducted a cross-sectional study at Hospital Universitario Virgen de las Nieves (Granada, Spain) and at the Wroclaw Medical University (Wroclaw, Poland). Patients over the age of 16 years attending their scheduled follow-up and their partners, if any, were included. The Dermatology Life Quality Index (DLQI) and the Family Dermatology Life Quality Index (FDLQI) were used to estimate the QoL of patients and partners, respectively. The FSFI-6 was used to determine sexual dysfunction in women and the IIEF-5 for erectile dysfunction in men. Thirty-four single patients and twenty-eight patients in a stable relationship and their partners were included. Patients had a very large impact (DLQI 12.5 &plusmn; 7.5) and their partners a moderate impact (FDLQI 10.3 &plusmn; 7.1) in their QoL due to HS. Women with HS had a high prevalence of sexual dysfunction (13/32, 40.6%) and men of erectile dysfunction (19/30, 63.3%). Male partners also had a high prevalence of erectile dysfunction (10/17, 58.8%), while only one female partner had sexual dysfunction (1/11, 9.1%). Factors related to disease severity, intensity of symptoms and body mass index were associated with poorer QoL in partners and time of disease evolution with greater erectile dysfunction in male partners. In conclusion, HS not only profoundly affects the QoL and sexuality of patients but also of their partners. Several risk factors have been identified, which should be taken into account in the holistic approach of the disease