Abstract
The objectives of the present study were to determine the role of cognitive and mood disorders as determinants of health-related quality of life (HRQOL) in multiple sclerosis (MS), as well as to evaluate the validity of self-assessed HRQOL in cognitively impaired patients and the agreement between self-assessed and proxy-reported HRQOL. The study included 204 MS inpatients and outpatients seen between April and September 1997 at three participating centers. The MS quality of life 54 (MSQOL-54) was explained to the patients by a neurologist who also assisted them to complete the questionnaire. A proxy version of the MSQOL-54 was completed independently by each patient's designated proxy.
The mean age of the patients was 43 years; the mean expanded disability status scale (EDSS) score was 4.5. Cognitively compromised patients had considerable difficulties in completing the questionnaire, and gave a high percentage of missing and inconsistent items. Depressive symptoms and age had the most important influence on patients' HRQOL. The level of agreement between self-assessed and proxy-reported HRQOL was moderate to substantial for most scales, with proxy informants rating patients as slightly more impaired. Although the patient should be the best informant concerning HRQOL, information from a proxy respondent may be preferable in patients with severe cognitive impairment.
Sommario
Abbiamo stimato il contributo dei disturbi cognitivi e timici nel determinare la qualità di vita associata allo stato di salute (QDVAS) dei pazienti con sclerosi multipla (SM), la validità della QDVAS riportata dai pazienti con deficit cognitivo, e Faccuratezza della stima di QDVAS del paziente effettuata da parte della persona a lui vicina. Erano considerati eleggibili i pazienti con SM ambulatoriali ed ospedalizzati afferiti nel periodo aprile–settembre 1997 presso i tre centri partecipanti. Il neurologo curante illustrava al paziente FMS quality of life 54 (MSQOI -54) e, se necessario, lo assisteva nella compilazione. Una versione proxy dell'MSQOL-54 era completata indipendentemente da parte dalla persona the il paziente considerava a lui più vicina.
I 204 pazienti avevano un' età media di 43 anni ed un punteggio medio di 4.5 all'expanded disability status scale (EDSS). I pazienti cognitivamente compromessi hanno presentato difficoltà nella compilazione del questionario ed hanno fornito un elevato numero di risposte mancanti o incoerenti. I principali determinanti della QDVAS sono risultati la presenza di sintomi depressivi e l' età del paziente. Il grado di accordo try la QDVAS riportata dal paziente e dal proxy era moderato o sostanziale per gran parte delle scale, con una generale tendenza da parte del proxy a sottostimare la QDVAS. Nonostante il paziente sia la fonte più appropriata per la stima della sua QDVAS, l'impiego di informazioni ottenute da un proxy è da preferirsi in presenza di deterioramento mentale.
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Solari, A., Ghezzi, A., Mendozzi, L. et al. Relation of cognitive impairment and depression to quality of life in multiple sclerosis patients. Ital J Neuro Sci 19 (Suppl 6), S392–S398 (1998). https://doi.org/10.1007/BF00539594
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DOI: https://doi.org/10.1007/BF00539594