Assessing Quality of Life in Genital Lichen Sclerosus: The Role of Disease Severity and Localization—A Swedish Prospective Cohort Study
Abstract
1. Introduction
Primary Aim of the Study
2. Materials and Methods
2.1. Study Design and Population
2.2. Data Collection
2.3. Dermatology Life Quality Index
2.4. Lichen Sclerosus Score
2.5. Ethical Considerations
2.6. Statistical Analysis
3. Results
3.1. Cohort Characteristics
3.2. Lichen Sclerosus Score (LSc Score)
3.3. LSc Score in Relation to DLQI
3.4. LSc Score and Specific DLQI Questions
- Question 1: “Over the last week, how itchy, sore, painful or stinging has your skin been?”
- Question 8: “Over the last week, how much has your skin created problems with your partner or any of your close friends or relatives?”
- Question 9: “Over the last week, how much has your skin caused any sexual difficulties?”
- Before treatment, only Question 1 (symptoms) was significantly associated with LSc severity;
- After treatment, only Question 8 (interpersonal impact) showed a significant correlation;
- No significant association was found with Question 9 (sexual difficulties) at either timepoint.
3.5. Anatomical Site of Involvement
3.6. Anatomical Site Comparisons: Clinically Relevant Trends
4. Discussion
Strengths and Limitations
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Exclusion Criteria |
---|
Age < 18 years |
Pregnancy |
Current cancer diagnosis or treatment (except for extragenital basal cell carcinoma or squamous cell carcinoma) |
Prior circumcision for LSc before inclusion |
Ongoing systemic anti-inflammatory or immunomodulating treatment or its discontinuation within the past week |
Ongoing systemic antibiotic use or its discontinuation within the past week |
Topical treatment (antibiotics, corticosteroids, calcineurin inhibitors) on the affected area within the past week |
Use of antiseptics or disinfectants on the affected area within 24 h of assessment |
Inability to understand Swedish or provide informed consent |
LSc Score Visit 1 | LSc Score Visit 2 | |
---|---|---|
Pruritus (0–2) | ||
Burning (0–2) | ||
Soreness (0–2) | ||
Pain during intercourse (0–2) | ||
Erosions (0–2) | ||
Sclerosis (0–2) | ||
Redness (0–2) | ||
Hypopigmentation (0–2) | ||
Total LSc score (0–16) |
Female Patients | Male Patients |
---|---|
Perineum | Glans penis |
Labia minora | Foreskin |
Labia majora | Coronal sulcus |
Clitoris | Frenulum |
Perianal area | Perianal area |
Multisite involvement | Multisite involvement |
Total (n = 136) | Men (n = 88) | Women (n = 48) | |
---|---|---|---|
Median age (range) | 62 (18–87) | 59 (18–86) | 64 (31–87) |
Baseline LSc Score (IQR) | Follow-Up LSc Score (IQR) | Z-Score | p-Value | |
---|---|---|---|---|
Total (n = 136) | 7.0 (4.0–10.0) | 5.0 (3.0–8.0) | −4.357 | <0.001 * |
Men (n = 88) | 6.0 (4.0–9.0) | 4.0 (3.0–6.0) | −4.568 | <0.001 * |
Women (n = 48) | 10.0 (6.0–13.0) | 8.0 (5.0–11.0) | −1.413 | <0.158 |
Overall Population (n = 136) | Men (n = 88) | Women (n = 48) | ||||
---|---|---|---|---|---|---|
Before R (p-Value) | After R (p-Value) | Before R (p-Value) | After R (p-Value) | Before R (p-Value) | After R (p-Value) | |
Q1 | 0.604 (<0.001) | 0.512 (<0.001) | 0.628 (<0.001) | 0.470 (<0.001) | 0.495 (<0.001) | 0.194 (0.188) |
Q8 | 0.374 (<0.001) | 0.351 (<0.001) | 0.487 (<0.001) | 0.254 (0.017) | 0.088 (0.550) | 0.299 (0.039) |
Q9 | 0.389 (<0.001) | 0.241 (0.005) | 0.489 (<0.001) | 0.255 (0.017) | 0.189 (0.199) | 0.102 (0.489) |
Localizations in Females | n (%) | Localizations in Males | n (%) |
---|---|---|---|
Perineum | 19 (40) | Foreskin and corona | 36 (41) |
Perineum and labia minora and majora | 8 (17) | Foreskin | 14 (16) |
Perianal and perineum and vulva | 7 (15) | Glans, foreskin and corona | 13 (15) |
Labia minora and labia majora | 6 (12) | Glans penis | 7 (8) |
Perineum and labia minora | 4 (8) | Perianal and penis | 7 (8) |
Clitoris | 2 (4) | Glans and foreskin | 5 (6) |
Labia minora | 1 (2) | Sulcus corona penis | 4 (4) |
Labia majora | 1 (2) | Perianal | 2 (2) |
Perineum and labia majora | 0 (0) | Glans and corona | 0 (0) |
Perianal | 0 (0) | Frenulum | 0 (0) |
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Lundin, F.; Jeppsson, C.; Seifert, O.; Kravvas, G.; Jerkovic Gulin, S. Assessing Quality of Life in Genital Lichen Sclerosus: The Role of Disease Severity and Localization—A Swedish Prospective Cohort Study. Med. Sci. 2025, 13, 111. https://doi.org/10.3390/medsci13030111
Lundin F, Jeppsson C, Seifert O, Kravvas G, Jerkovic Gulin S. Assessing Quality of Life in Genital Lichen Sclerosus: The Role of Disease Severity and Localization—A Swedish Prospective Cohort Study. Medical Sciences. 2025; 13(3):111. https://doi.org/10.3390/medsci13030111
Chicago/Turabian StyleLundin, Filippa, Cassandra Jeppsson, Oliver Seifert, Georgios Kravvas, and Sandra Jerkovic Gulin. 2025. "Assessing Quality of Life in Genital Lichen Sclerosus: The Role of Disease Severity and Localization—A Swedish Prospective Cohort Study" Medical Sciences 13, no. 3: 111. https://doi.org/10.3390/medsci13030111
APA StyleLundin, F., Jeppsson, C., Seifert, O., Kravvas, G., & Jerkovic Gulin, S. (2025). Assessing Quality of Life in Genital Lichen Sclerosus: The Role of Disease Severity and Localization—A Swedish Prospective Cohort Study. Medical Sciences, 13(3), 111. https://doi.org/10.3390/medsci13030111