Pictorial Representation of Illness and Self‐Measure to assess the perceived burden in patients with chronic inflammatory vulvar diseases: an observational study

Abstract

Background Chronic inflammatory vulvar diseases can have a huge detrimental impact on patient welfare. A few studies have addressed this issue so far, mainly measuring patients' quality of life or sexual dysfunction. Objective To assess the burden of suffering in patients with chronic inflammatory vulvar diseases using the Pictorial Representation of Illness and Self-Measure (PRISM), a visual, non-verbal instrument. We also assessed (i) the concordance between PRISM and the Dermatology Life Quality Index (DLQI), (ii) whether some variables, both patient-related and disease-related, affect the patient's suffering and quality-of-life impairment. Methods We evaluated for inclusion in this cross-sectional study all patients who attended our Vulva Unit over a 9month period with histologically proven lichen sclerosus (LS), lichen planus (LP), lichen simplex chronicus (LSC), eczema, plasma cell vulvitis and psoriasis (at least five for each disease). Demographics and disease-related subjective and objective scores were recorded. The PRISM and DLQI were administered. Results We included 87 patients affected with LS, 13 with LSC and seven with LP. Median PRISM values (0-273 mm) ranged from 95 to 120 mm, depending on the disease, and median DLQI scores (0-30) were five for all three groups. Neither PRISM nor DLQI scores differed significantly among the three groups. Moderate coherence was found between PRISM and DLQI (q = 0.5455, P < 0.001). Global subjective score was the only variable significantly associated with the degree of suffering and quality-of-life impairment. Conclusions Pictorial Representation of Illness and Self-Measure proved to be a valuable, highly reliable tool for measuring the perceived burden in these patients. In spite of a moderate correlation, PRISM resulted more sensitive in capturing patient distress than DLQI.

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

“…A first expected result of our study was the great efficacy of a topical potent corticosteroid, like MMF, in improving both symptoms and clinical signs of VLS ( Table 2) and DLQI median score decreased from 6 [3][4][5][6][7][8] to 2 [1][2][3][4][5] (P < .0001). It was particularly interesting that PRISM and DLQI sores showed greater coefficients of variation when compared with those referred to global symptoms (GSS), objective features (GOS) and dyspareunia (Table 3).…”

“…This finding indicates that PRISM may be more reliable than DLQI in capturing the changes in disease-related burden after treatment as well as it appeared in quantifying the baseline burden. 6 Linear regression analysis showed that the global subjective…”

“…The participants were patients who had already taken part in a previous cross sectional study assessing the degree of suffering and quality of life impairment in subjects affected with chronic vulvar disorders. 6 All the VLS patients included in that previous study were put on a 12-week treatment with a topical corticosteroid. The main objectives of the present study were to assess (a) the improvement in both suffering and quality of life impairment, measured with PRISM and DLQI respectively, achieved with treatment; that is, we were interested in measuring the effect of a standard treatment on illness-related burden, using these two different tools; (b) the correlation between PRISM and DLQI in measuring the changes in illness burden obtained with treatment;…”

“…Baseline inclusion and exclusion criteria are reported elsewhere. 6 We included the patients who adhered to the therapeutic regimen and presented to the control visit after treatment.…”

“…No additional treatments, nor cosmetic products, expected to relieve VLS, were administered. A control visit was scheduled after 12 weeks, at treatment completion.As reported in detail in Corazza et al,6 the following data wererecorded at baseline: 1) age at inclusion; 2) marital status; 3) educational level; 4) employment; 5) disease duration; 6) first diagnosis or disease recurrence at inclusion visit. Assessment and scoring of both subjective symptoms and clinical features were performed in consensus by the same investigators for all patients at baseline (T0) and at the 12-week control visit (T1).…”