Measuring perceived benefit and disease‐related burden in patients affected with vulvar lichen sclerosus after a standard topical corticosteroid treatment. Results from a cohort study using Pictorial Representation of Illness and Self‐measure and Dermatology Life Quality Index

Abstract

Improvement in suffering after treatment has been poorly investigated in women affected with vulvar lichen sclerosus (VLS). We performed an observational study on a cohort of VLS patients for assessing the effect of a 12-week topical corticosteroid treatment on their VLS-related burden, as measured with Pictorial Representation of Illness and Self-Measure (PRISM) and Dermatology Life Quality Index (DLQI). Demographics and disease-related subjective and objective scores (at baseline, T0, and at the control visit, T1) were recorded. The PRISM and DLQI were administered at T0 and T1. We assessed the variation of PRISM and DLQI at T1 compared to baseline and the relevance of several variables on these changes. Sixty-three patients were included. A significant improvement was found in both PRISM and DLQI after treatment. A higher coefficient of variations was observed for PRISM and DLQI as compared to subjective and objective scores. Improvement of global subjective score after treatment was the sole variable associated with PRISM and DLQI variations. The corticosteroid treatment led to a significant decrease in the impact of VLS on patients' well-being, in terms of suffering and quality of life impairment. PRISM seems a reliable instrument for integrating clinicians' and patients' perspectives for a comprehensive VLS management.

The impact of genital lichen sclerosus and lichen planus on quality of life: A review

“…Additionally, while based on these data we cannot grade patients in terms of clinical response, other studies have demonstrated improvement in DLQI and PRISM scores from baseline as compared to after a 12-week treatment course of topical corticosteroids. 18 …”

Assessment of the perceived burden associated with Malignant Melanoma with Pictorial Representation of Illness and Self Measure (PRISM) and Melanoma Concerns Questionnaire (MCQ-28)

“…This seems to indicate that all these diseases cause greater suffering than MM, an apparently paradoxical datum that could have several possible explanations. In our experience, albeit limited to subjects affected with inflammatory genital disorders, disease-related symptoms are the main determinants of the PRISM score [ 17 , 18 ]. As previously excised, MM does not usually cause symptoms, unlike many of the other non-neoplastic diseases listed above; this could at least partially justify the difference in mean PRISM scores between conditions characterized by chronic, distressing symptoms and others without.…”

“…In clinical practice, unlike in trials, there is the need for rapid tools, easily understood by subjects of any cultural and social level. Our group has recently tested the use of Pictorial Representation of Illness and Self Measure (PRISM) for assessing the burden of suffering from inflammatory skin disorders, in particular of the genital area [ 17 , 18 ]. It is a visual, non-verbal instrument aimed at quantitatively assessing the burden of illness-related suffering [ 19 – 21 ].…”

Suffering and Quality of Life Impairment in Patients with Eczematous Diseases: Results from an Observational Study Assessing the Relevance of the Involvement of Two Sensitive Body Sites, Namely, the Face and Hands

“…This may be bypassed by using nonverbal instruments, such as Pictorial Representation of Illness and Self Measure (PRISM). This represents a valid tool in defining the impact of issues whose verbalization can determine feelings of shame and embarrassment and has been validated in both dermatological [15][16][17][18][19][20][21][22][23] and non-dermatological disorders [24][25][26][27][28] even concerning the effectiveness of therapy [29,30].…”