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PROMIS® and Neuro-QoLTM measures are valid measures of health-related quality of life among patients with familial chylomicronemia syndrome.
Fox, Rina S; Peipert, John Devin; Vera-Llonch, Montserrat; Phillips, Glenn; Cella, David.
Afiliación
  • Fox RS; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
  • Peipert JD; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
  • Vera-Llonch M; Department of Global Health Economics and Outcomes Research, Akcea Therapeutics, Cambridge, MA, USA.
  • Phillips G; Department of Value and Evidence Generation, Rhythm Pharmaceuticals, Boston, MA, USA.
  • Cella D; Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.
Expert Rev Cardiovasc Ther ; 18(4): 231-238, 2020 Apr.
Article en En | MEDLINE | ID: mdl-32223345
Background: FCS significantly affects health-related quality of life (HRQOL). Legacy patient-reported outcome measures are often not sensitive to FCS's impact. NIH PROMIS and Neuro-QoL measures may accurately capture HRQOL in FCS patients. This study assessed a broad range of PROMIS and Neuro-QoL measures covering physical, mental, and social HRQOL to determine their suitability for the FCS population.Methods: Adult FCS patients in the United States (N = 25) were recruited to an online survey study and completed several PROMIS short forms and Neuro-QoL computer adaptive tests.Results: Scores were more than 0.5 standard deviations (SD) worse than the normative mean on 10 of 16 normed measures, and more than 0.75 SDs worse than the normative mean on two measures. Responses at the floor and ceiling were occasionally observed, marginal reliabilities were strong, and significant differences across performance status (ps < 0.05) provided preliminary support for construct validity. The measures correlated with each other strongly and as expected.Conclusion: Results support the ability of PROMIS and Neuro-QoL measures to detect HRQOL impairment among patients with FCS. PROMIS and Neuro-QoL measures captured the functional impact and symptom burden associated with FCS, and the broad range of symptom severity experienced by patients with FCS.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Medición de Resultados Informados por el Paciente / Hiperlipoproteinemia Tipo I Aspecto: Patient_preference Límite: Adult / Aged / Female / Humans / Male / Middle aged Idioma: En Revista: Expert Rev Cardiovasc Ther Asunto de la revista: ANGIOLOGIA / CARDIOLOGIA / TERAPEUTICA Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Calidad de Vida / Medición de Resultados Informados por el Paciente / Hiperlipoproteinemia Tipo I Aspecto: Patient_preference Límite: Adult / Aged / Female / Humans / Male / Middle aged Idioma: En Revista: Expert Rev Cardiovasc Ther Asunto de la revista: ANGIOLOGIA / CARDIOLOGIA / TERAPEUTICA Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido