Adverse healthcare experiences are correlated with increased time to diagnosis in women with vulvar inflammatory dermatoses: a retrospective cohort survey

Rivera, Sydney; Dehner, Kylie; Flood, Anna; Dykstra, Chandler; Mauskar, Melissa M; DeMaria, Andrea L

doi:10.1093/bjd/ljae003

Cited by 3 publications

References 8 publications

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Hidden hurts: life with lichen sclerosus – a patient’s perspective

Galentine,

Powers,

McAleer

et al. 2024

British Journal of Dermatology

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A patient with vulvar lichen sclerosus bravely shares her experiences living with this hidden, painful, life-altering, and potentially stigmatizing vulvar dermatologic condition. Complemented by a clinician's perspective on the complexities of managing such patients, this piece aims to illuminate the numerous psychosocial challenges posed by lichen sclerosus. Through this dual narrative, we seek to deepen providers’ knowledge of the impact lichen sclerosus has on patients’ lives and the nuanced care required to support them.

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Hidden hurts: life with lichen sclerosus – a patient’s perspective

Galentine,

Powers,

McAleer

et al. 2024

British Journal of Dermatology

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Loss, shame and secrecy in women’s experiences of a vulval skin condition: A qualitative study

Rees,

Arnold

2024

Health (London)

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Vulval lichen sclerosus (LS) is a chronic dermatological condition affecting the anogenital area, causing intense itching, pain and bleeding. It can change the terrain of the vulva, causing loss of vulval anatomy and altered texture and appearance of the skin. There has been little research into how women experience the materialities of a dermatological vulval disease. We aimed to understand experiences of living with LS, using a feminist lens to examine the influence of societal attitudes towards women’s bodies and the vulva. We conducted qualitative interviews with 20 women with vulval LS, taking a critical feminist grounded theory approach. While we found that women’s experiences of vulval LS symptoms was normalised as a part of womanhood, there was a silencing of speech about the vulva generally, and vulval symptoms more specifically. This caused profound shame and loneliness, and was a barrier to disclosing and seeking help for vulval symptoms, leading to delayed diagnosis and disease progression. Loss of vulval architecture resulted in a loss of (feminine) self and the sense of a body which was whole.

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A Comprehensive Analysis of Online Patient Educational Materials for Lichen Sclerosus (Preprint)

Foster,

Chang,

Mauskar

2024

Preprint

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BACKGROUND Lichen sclerosus is a vulvar skin condition with sincere effects on patient quality of life. Due to the sensitive nature of the disease, patients are more likely to search their health information online. However, little is known about the quality of online patient educational materials for lichen sclerosus. OBJECTIVE To comprehensively assess online patient educational materials for lichen sclerosus METHODS Keyword searches for “lichen sclerosus” and “vulvar lichen sclerosus” were conducted using Google. Relevant results were assessed for readability, understandability, actionability, and overall quality. RESULTS Online patient educational materials were consistently written at a level higher than the recommended grade level and lacked understandability, actionability, and overall quality. CONCLUSIONS As patients increasingly turn to online information for their health decisions, it is noteworthy that the majority of materials lacked acceptable readability, understandability, actionability, or overall quality. To bridge this gap, healthcare providers can play an important role by identifying or creating resources with accurate information to recommend to their patients. Future efforts in the development of patient education materials should prioritize improving readability, understandability, and actionability for vulvar lichen sclerosus.

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Adverse healthcare experiences are correlated with increased time to diagnosis in women with vulvar inflammatory dermatoses: a retrospective cohort survey

Cited by 3 publications

References 8 publications

Hidden hurts: life with lichen sclerosus – a patient’s perspective

Hidden hurts: life with lichen sclerosus – a patient’s perspective

Loss, shame and secrecy in women’s experiences of a vulval skin condition: A qualitative study

A Comprehensive Analysis of Online Patient Educational Materials for Lichen Sclerosus (Preprint)

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