Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes
Abstract Introduction Hidradenitis suppurativa (HS) has a profound negative impact on patients’ health-related quality of life (HRQoL). Here we summarize the evidence on HRQoL and Patient Reported Outcomes (PROs) in patients with HS in real-world settings by conducting a systematic literature review...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Adis, Springer Healthcare
2024-01-01
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| Series: | Dermatology and Therapy |
| Subjects: | |
| Online Access: | https://doi.org/10.1007/s13555-023-01085-w |
| _version_ | 1797275843414720512 |
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| author | Alexa B. Kimball Joslyn Kirby John R. Ingram Tanja Tran Ingrid Pansar Valerie Ciaravino Damon Willems Anne-Mary Lewis-Mikhael Vanita Tongbram Amit Garg |
| author_facet | Alexa B. Kimball Joslyn Kirby John R. Ingram Tanja Tran Ingrid Pansar Valerie Ciaravino Damon Willems Anne-Mary Lewis-Mikhael Vanita Tongbram Amit Garg |
| author_sort | Alexa B. Kimball |
| collection | DOAJ |
| description | Abstract Introduction Hidradenitis suppurativa (HS) has a profound negative impact on patients’ health-related quality of life (HRQoL). Here we summarize the evidence on HRQoL and Patient Reported Outcomes (PROs) in patients with HS in real-world settings by conducting a systematic literature review (SLR) of observational studies. Methods Data sources included MEDLINE, Embase & PsycINFO between January 1, 2010 and August 29, 2021, and conference proceedings between 2019 and 2021. Identified abstracts were reviewed and screened independently by two reviewers. Eligibility criteria included patients with HS of any severity, sample size ≥ 100, reporting PROs including HRQoL measures. Included studies were critically appraised. Results Fifty-eight observational studies matched inclusion criteria. Dermatology Life Quality Index (DLQI) was the most commonly utilized instrument: 57% of included studies reported mean baseline DLQI scores, ranging between 8.4 and 16.9, indicating a very large impact on the patients’ HRQoL. Higher scores were reported with increasing disease severity and among female patients. Pain was assessed mostly by an 11-point (0–10) numeric rating scale (NRS) with a mean baseline score ranging from 3.6 to 7.7 indicating moderate to high pain levels. There was a negative impact of HS on patients’ psychological well-being, based on PRO scores related to depression and anxiety. A high proportion of sexual dysfunction was reported, with a larger impact on women than men. Work productivity and leisure activity were consistently found to be impaired in patients with HS. Conclusions All included studies reported a negative impact of HS on patients’ lives. A diverse set of disease- and non-disease-specific PRO instruments were utilized highlighting the need for more consistent use of HS-specific validated PRO instruments to assess the impact of HS on the different aspects of patients’ HRQoL to allow for data to be more meaningfully interpreted and compared in real-world settings. Patients with HS need better disease management approaches that address the observed low quality of life. |
| first_indexed | 2024-03-07T15:18:53Z |
| format | Article |
| id | doaj.art-4cbe89b28d9a407281fa1c8e886e9636 |
| institution | Directory Open Access Journal |
| issn | 2193-8210 2190-9172 |
| language | English |
| last_indexed | 2024-03-07T15:18:53Z |
| publishDate | 2024-01-01 |
| publisher | Adis, Springer Healthcare |
| record_format | Article |
| series | Dermatology and Therapy |
| spelling | doaj.art-4cbe89b28d9a407281fa1c8e886e96362024-03-05T17:44:39ZengAdis, Springer HealthcareDermatology and Therapy2193-82102190-91722024-01-01141839810.1007/s13555-023-01085-wBurden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported OutcomesAlexa B. Kimball0Joslyn Kirby1John R. Ingram2Tanja Tran3Ingrid Pansar4Valerie Ciaravino5Damon Willems6Anne-Mary Lewis-Mikhael7Vanita Tongbram8Amit Garg9Harvard Medical School and Beth Israel Deaconess Medical Center BostonPenn State UniversityCardiff UniversityUCB PharmaUCB PharmaUCB PharmaUCB PharmaICON PlcICON PlcNorthwell HealthAbstract Introduction Hidradenitis suppurativa (HS) has a profound negative impact on patients’ health-related quality of life (HRQoL). Here we summarize the evidence on HRQoL and Patient Reported Outcomes (PROs) in patients with HS in real-world settings by conducting a systematic literature review (SLR) of observational studies. Methods Data sources included MEDLINE, Embase & PsycINFO between January 1, 2010 and August 29, 2021, and conference proceedings between 2019 and 2021. Identified abstracts were reviewed and screened independently by two reviewers. Eligibility criteria included patients with HS of any severity, sample size ≥ 100, reporting PROs including HRQoL measures. Included studies were critically appraised. Results Fifty-eight observational studies matched inclusion criteria. Dermatology Life Quality Index (DLQI) was the most commonly utilized instrument: 57% of included studies reported mean baseline DLQI scores, ranging between 8.4 and 16.9, indicating a very large impact on the patients’ HRQoL. Higher scores were reported with increasing disease severity and among female patients. Pain was assessed mostly by an 11-point (0–10) numeric rating scale (NRS) with a mean baseline score ranging from 3.6 to 7.7 indicating moderate to high pain levels. There was a negative impact of HS on patients’ psychological well-being, based on PRO scores related to depression and anxiety. A high proportion of sexual dysfunction was reported, with a larger impact on women than men. Work productivity and leisure activity were consistently found to be impaired in patients with HS. Conclusions All included studies reported a negative impact of HS on patients’ lives. A diverse set of disease- and non-disease-specific PRO instruments were utilized highlighting the need for more consistent use of HS-specific validated PRO instruments to assess the impact of HS on the different aspects of patients’ HRQoL to allow for data to be more meaningfully interpreted and compared in real-world settings. Patients with HS need better disease management approaches that address the observed low quality of life.https://doi.org/10.1007/s13555-023-01085-wHidradenitis suppurativaQuality of lifeImpactReal-world evidence |
| spellingShingle | Alexa B. Kimball Joslyn Kirby John R. Ingram Tanja Tran Ingrid Pansar Valerie Ciaravino Damon Willems Anne-Mary Lewis-Mikhael Vanita Tongbram Amit Garg Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes Dermatology and Therapy Hidradenitis suppurativa Quality of life Impact Real-world evidence |
| title | Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes |
| title_full | Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes |
| title_fullStr | Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes |
| title_full_unstemmed | Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes |
| title_short | Burden of Hidradenitis Suppurativa: A Systematic Literature Review of Patient Reported Outcomes |
| title_sort | burden of hidradenitis suppurativa a systematic literature review of patient reported outcomes |
| topic | Hidradenitis suppurativa Quality of life Impact Real-world evidence |
| url | https://doi.org/10.1007/s13555-023-01085-w |
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