Measuring quality of life and identifying what is important to Jordanian living with multiple sclerosis using the Arabic version of the patient-generated index.

BACKGROUND Patient-generated index (PGI) is one of the individualized measures used to measure the quality of life (QOL) in people with different chronic conditions including multiple sclerosis (MS). However, the psychometric properties of the Arabic version of the PGI have not been fully established in Jordanian living with MS. Therefore, the objective of this study is to identify what matters to Jordanian living with MS and to contribute evidence toward the psychometric properties of the Arabic version of the PGI. METHODS A total of 75 participants with MS completed three QOL measures; PGI, the patient determined disease steps (PDDS), and EQ-5D. Generalized estimating equations were used to compare the total score of three QOL measures. Bland-Altman plot and Spearman's correlation coefficient were used to study the relationships and differences between the PGI and the other study measures (PDDS and EQ-5D). RESULTS Only 66 (88%) of the participants were able to complete the PGI. Overall, 36 areas of QOL concern were nominated by the participants using the PGI with the top three areas were emotional function (47%), involuntary movement reaction functions (45.5%), and walking (44 %). The average global score of the PGI was lower (34 ± 22) than the global score of the EQ-5D (69 ± 23), and the PDDS (68 ± 24). PGI had a moderate correlation with EQ-5D and PPDS. CONCLUSION The Arabic version of the PGI is a feasible, acceptable, and valid measure among Jordanians with MS. PGI also captures more important areas that contribute to QOL than EQ-5D and PDDS. PGI could improve the decision making and guide healthcare professionals to provide appropriate intervention programs to reduce the burdens from MS disease and improve QOL.