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Sviluppo e validazione preliminare della versione abbreviata e computerizzata del questionario di qualità della vita: MSQOL-54 (Multiple Sclerosis Quality of Life - 54)

Tipologia
Progetti nazionali
Programma di ricerca
Bando 2013
Ente finanziatore
FISM
Settore ERC
LS5_11 - Neurological and neurodegenerative disorders
Periodo
01/03/2014 - 31/08/2016
Coordinatore
Rosalba Rosato
Responsabile
Solari Alessandra
Bertolotto Antonio
Lugaresi Alessandra
Confalonieri Paolo
Grasso Maria Grazia

Partecipanti al progetto

Descrizione del progetto

Multiple sclerosis (MS) is the most common disabling neurological disease in young adults, and is characterized by variable disease course and clinical manifestations. Interest in the Health Related Quality of Life (HRQOL) of people with MS (PwMS) has been driven by a desire to broaden traditional outcome measures to include those not always evident on clinical examination, but nevertheless important to the patient. HRQOL inventories help clinicians appreciate patient priorities and facilitate physician-patient communication, but are not used in MS routine health care because they must be administered, processed, scored, stored and retrieved with a relevant logistic and financial implication. The MSQOL-54 is the most used MS-specific HRQOL inventory. The availability of a shorter version in conjunction with a computerized one that immediately processes and scores the items may improve instrument usability and validity.
The main aims of the study were: 1) to refine the MSQOL-54 producing an abbreviated form, also available in an electronic version, and 2) to validate in an independent sample the new (paper and electronic) questionnaire.
A psychometric analysis on existing MSQOL-54 databases (476 PwMS) aimed to identify which items of the original questionnaire can be modified or deleted. The short version, the MSQOL-29, was made by 29 of the original items.  
The MSQOL-29 has been devised both in paper and electronic version, with an integrated scoring routine, and a web application to collect data has been developed.
In order to perform a validation of the MSQOL-29 an independent sample of 600 PwMS has been enrolled; 250 of which received both paper and computerized MSQOL-29 versions in a crossover design to evaluate the equivalence of the two versions. Participants also received the Hospital Anxiety and Depression Scale, the Functional Assessment of MS, the EQ-5DTM questionnaires.
Confirmatory Factor Analysis and Item Response Theory models has been applied  in order to reduce and validate the instrument.

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