The neurology quality-of-life measurement initiative.
Arch Phys Med Rehabil
; 92(10 Suppl): S28-36, 2011 Oct.
Article
em En
| MEDLINE
| ID: mdl-21958920
OBJECTIVE: To describe the development and calibration of the banks and scales of the Quality of Life in Neurological Disorders (Neuro-QOL) project, commissioned by the National Institute of Neurological Disorders and Stroke to develop a bilingual (English/Spanish), clinically relevant, and psychometrically robust health-related quality-of-life (HRQOL) assessment tool. DESIGN: Classic and modern test construction methods were used, including input from essential stakeholder groups. SETTING: An online patient panel testing service and 11 academic medical centers and clinics from across the United States and Puerto Rico that treat major neurologic disorders. PARTICIPANTS: Adult and pediatric patients representing different neurologic disorders specified in this study, proxy respondents for select conditions (stroke, pediatric conditions), and English- and Spanish-speaking participants from the general population. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Multiple generic and condition-specific measures used to provide construct validity evidence for the new Neuro-QOL tool. RESULTS: Neuro-QOL has developed 14 generic item banks and 8 targeted scales to assess HRQOL in 5 adult (stroke, multiple sclerosis, Parkinson's disease, epilepsy, amyotrophic lateral sclerosis) and 2 pediatric conditions (epilepsy, muscular dystrophies). CONCLUSIONS: The Neuro-QOL system will continue to evolve, with validation efforts in clinical populations and new bank development in health domains not presently included. The potential for Neuro-QOL measures in rehabilitation research and clinical settings is discussed.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
/
Sistemas de Informação
/
Avaliação de Resultados em Cuidados de Saúde
/
National Institutes of Health (U.S.)
/
Doenças do Sistema Nervoso
Tipo de estudo:
Qualitative_research
Aspecto:
Patient_preference
Limite:
Adult
/
Aged
/
Aged80
/
Female
/
Humans
/
Male
/
Middle aged
País/Região como assunto:
America do norte
/
Caribe
/
Puerto rico
Idioma:
En
Revista:
Arch Phys Med Rehabil
Ano de publicação:
2011
Tipo de documento:
Article
País de afiliação:
Estados Unidos
País de publicação:
Estados Unidos