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Assessment of health-related quality of life in patients with cystinuria on tiopronin therapy.
Modersitzki, Frank; Goldfarb, David S; Goldstein, Ross L; Sur, Roger L; Penniston, Kristina L.
Afiliación
  • Modersitzki F; Department of Medicine, New York University School of Medicine, NYU Langone Health, 550 First Avenue, OBV A600, New York, 10016, USA. frank.modersitzki@nyulangone.org.
  • Goldfarb DS; Department of Medicine, New York University School of Medicine, NYU Langone Health, 550 First Avenue, OBV A600, New York, 10016, USA.
  • Goldstein RL; Retrophin, Inc., San Diego, CA, USA.
  • Sur RL; University of California San Diego School of Medicine, San Diego, CA, USA.
  • Penniston KL; University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.
Urolithiasis ; 48(4): 313-320, 2020 Aug.
Article en En | MEDLINE | ID: mdl-31834425
ABSTRACT
Cystinuria comprises less than 1% of kidney stones and is associated with impaired health-related quality of life (HRQOL). Limited evidence is available regarding HRQOL of patients with cystinuria treated with tiopronin (Thiola®). The objective of this study was to assess the HRQOL of patients with or without tiopronin treatment. For this cross-sectional survey, patients on tiopronin treatment were recruited through the "Thiola® Total Care Hub," a specialty pharmacy used to dispense tiopronin, and compared with patients not taking tiopronin (non-tiopronin group) who were identified from the Cystinuria Contact Registry at New York University School of Medicine. Consented patients responded to a survey that included questions about their experiences with kidney stones, the Wisconsin stone quality of life (WISQOL) (disease-specific) questionnaire, and the short form-36 version 2 (SF-36v2) (generic) HRQOL questionnaire. Statistical analyses included independent-sample t tests, one-way analysis of variance (ANOVA), and correlations. The survey was completed by 312 patients 267 in the tiopronin group (144 male, 123 female; mean 49 years) and 45 in the non-tiopronin group (10 male, 35 female; mean 48 years). Both groups utilized pain medications similarly (24% overall). Patients on tiopronin had a significantly better HRQOL than patients not on tiopronin for all WISQOL domains (p < 0.001) and all but the physical functioning SF-36v2 domain (p < 0.001), where both groups approached the US normative mean, when controlling for the last stone event. Compared with patients in the non-tiopronin group, patients taking tiopronin reported better HRQOL on both the WISQOL and SF-36v2.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Cistinuria / Tiopronina Tipo de estudio: Observational_studies / Prevalence_studies / Risk_factors_studies Aspecto: Patient_preference Límite: Adolescent / Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Urolithiasis Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Cistinuria / Tiopronina Tipo de estudio: Observational_studies / Prevalence_studies / Risk_factors_studies Aspecto: Patient_preference Límite: Adolescent / Adult / Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Urolithiasis Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos