Growing up with juvenile vulvar lichen sclerosus, the experiences and care needs of adult women with lichen sclerosus since childhood: a qualitative exploration

Beth Morrel; Janneke H J Kampherbeek; Marianne J Ten Kate-Booij; Irene A M van der Avoort; Colette L M van Hees; Kiki M G J Wigny; Curt W Burger; Suzanne G M A Pasmans; Marjolein Lugtenberg

doi:10.1093/bjd/ljae203

Growing up with juvenile vulvar lichen sclerosus, the experiences and care needs of adult women with lichen sclerosus since childhood: a qualitative exploration

Br J Dermatol. 2024 May 21:ljae203. doi: 10.1093/bjd/ljae203. Online ahead of print.

Authors

Affiliations

¹ Department of Obstetrics and Gynecology, Erasmus MC University Medical Center Rotterdam, The Netherlands.
² Department of Dermatology, Erasmus MC University Medical Center Rotterdam, The Netherlands.
³ Department of Obstetrics and Gynecology, Ikazia Hospital, Rotterdam, The Netherlands.
⁴ Research and Development Office (RDO), Erasmus MC University Medical Center Rotterdam, The Netherlands.
⁵ Department of Dermatology and Sophia Children's Hospital-Center of Pediatric Dermatology, Erasmus MC University Medical Center Rotterdam-Sophia Children's Hospital, Rotterdam, The Netherlands.
⁶ Department Tranzo, Tilburg School of Social and Behavioural Sciences, Tilburg University, Tilburg, The Netherlands.

PMID: 38769589
DOI: 10.1093/bjd/ljae203

Abstract

Background: Vulvar Lichen Sclerosus (VLS) is a chronic remitting condition affecting the genital skin of females of all ages. Although qualitative studies have been conducted focusing on women with VLS in mid-life or older, less is known about the experiences of individuals with VLS from childhood or adolescence onward.

Objective: To gain understanding of the experiences of women with a history of juvenile VLS (JVLS) regarding the impact of the disease on their personal lives, and their experiences and needs regarding care and guidance.

Methods: A qualitative study was conducted consisting of 27 in-depth face-to-face interviews with adult women with a histologically confirmed history of JVLS, striving for maximum variation and saturation. Interviews were audio-taped and transcribed verbatim. A thorough thematic content analysis was performed.

Results: Three main themes were identified. I. Varying impact of living with JVLS: Women experienced diverse emotional and physical impact, from shame and denial to complete acceptance, from restrictions in daily functioning to no limitations. They felt hindered by their own lack of knowledge about JVLS, and generally expressed a positive influence of sharing their experiences with people close to them. II. Finding one's way in care and guidance: While navigating care and guidance, women often felt hindered by knowledge gaps among health care professionals (HCPs), lack of continuity in care and guidance, lack of life-stage adjusted and future-oriented information provision, inadequate guidance around life events, and insufficient monitoring of determinants of therapy adherence. III. Need for patient-tailored care: Patients stressed the need for age-appropriate and life-phase adjusted information, guidance around life-events and compassionate contact with knowledgeable HCPs, aware of the determinants of therapy adherence and influencing factors.

Conclusions: Age-appropriate life-phase adjusted individually tailored care for women diagnosed with VLS in childhood or adolescence is needed. Care and guidance from childhood onward should encompass a standard of care adapted to the individual as needs change over time. This involves taking interpersonal differences into account, including differences in support network and coping strategies. These findings demonstrate the need for improving awareness and knowledge about (J)VLS among HCPs, especially primary care providers, and among the general public.