title: Resource utilization and quality of life associated with congenital ichthyoses.
abstract: We explored resource utilization (ResUtil) and quality of life (QOL) associated with congenital ichthyoses (CI). Subjects completed an online survey related to clinical severity, demographics, ResUtil, and QOL as measured according to the Dermatology Life Quality Index (DLQI). Validated Likert scales were used to evaluate severity of hyperkeratosis, erythema, and alopecia. ResUtil was determined according to time spent daily treating CI symptoms (TimeTx) and number of ichthyosis-related dermatology visits (DermVisits) per year. We used linear regression to investigate predictors of a transformed DLQI (sqrtDLQI) and logistic regression for ResUtil. Of 235 subjects, 60.2% were female, 83.8% were Caucasian, 42.3% had a family history (FamHx) of CI, and the mean age was 28.7 years (SD 20.3). Predictors for worse QOL were hyperkeratosis severity (β = 0.27, p < 0.01), erythema (β = 0.27, p < 0.01), TimeTx (β = 0.21, p < 0.01), ichthyosis type (β = 0.09, p < 0.01), and age (β = 0.01, p = 0.02). Predictors for DermVisits were hyperkeratosis severity (odds ratio [OR] = 1.38, 95% confidence limit [CL] = 1.01, 1.87), FamHx (OR = 0.28, 95% CL = 0.09, 0.85), age (OR = 0.97, 95% CI = 0.96, 0.99), and alopecia severity (OR = 1.43, 95% CL = 1.12, 1.82). Predictors for treatment duration were erythema (OR = 1.35, 95% CL = 1.02, 1.78), age (OR = 0.98, 95% CL = 0.96, 0.99), and DLQI (OR = 1.09, 95% CL = 1.03, 1.15). Increased hyperkeratosis severity and erythema negatively impact QOL in the CI. Furthermore, increased disease severity predicted greater ResUtil, whereas increased age and FamHx predicted less ResUtil. Our findings suggest that better therapies and increased patient education may improve QOL and decrease ResUtil.
authors: Department of Dermatology, Loyola University, Chicago, Illinois, USA.
authors: Loebat
authors: L
authors: Kamalpour
authors: Bryan
authors: B
authors: Gammon
authors: Kuang-Ho
authors: KH
authors: Chen
authors: Emir
authors: E
authors: Veledar
authors: Michelle
authors: M
authors: Pavlis
authors: Zakiya P
authors: ZP
authors: Rice
authors: Suephy C
authors: SC
authors: Chen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000505:Alopecia / Q000151:congenital / Q000523:psychology / Q000628:therapy; D002648:Child; D002675:Child, Preschool; D004890:Erythema / Q000151:congenital / Q000523:psychology / Q000628:therapy; D005260:Female; D006295:Health Resources / Q000706:statistics & numerical data*; D006801:Humans; D007057:Ichthyosis / Q000235:genetics / Q000523:psychology* / Q000628:therapy; D007223:Infant; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012720:Severity of Illness Index; D055815:Young Adult