Assessing Quality of Life in Patients with Multiple Sclerosis

2010 ◽  
Vol 12 (1) ◽  
pp. 34-41 ◽  
Author(s):  
Daniel S. Bandari ◽  
Timothy L. Vollmer ◽  
Bhupendra O. Khatri ◽  
Tuula Tyry

Health-related quality of life (HRQOL) is an important consideration for patients with a chronic disease such as multiple sclerosis (MS). We conducted a review of published articles and conference proceedings to evaluate the use of patient-reported measures of HRQOL in MS. A variety of HRQOL measures are used in MS research and clinical practice settings. Generic HRQOL instruments lack domains considered important to MS patients and are subject to significant floor and ceiling effects when used in MS patients. MS-specific instruments, including the Multiple Sclerosis Quality of Life–54, Multiple Sclerosis Quality of Life Inventory, and Multiple Sclerosis International Quality of Life, offer both advantages and limitations in assessing HRQOL in MS patients. Only a few reports on the use of these instruments to assess HRQOL outcomes in clinical studies have been published. MS-specific instruments hold the most promise in the assessment of the relationship between disease-modifying drug treatment and HRQOL in MS patients. Further research is needed to better understand the limitations of MS-specific HRQOL instruments in clinical research and practice. Future MS drug therapy trials should include the use of MS-specific instruments to prospectively assess HRQOL as a study outcome.

2018 ◽  
Vol 61 (8) ◽  
pp. 2084-2098 ◽  
Author(s):  
Christiane Lingås Haukedal ◽  
Janne von Koss Torkildsen ◽  
Björn Lyxell ◽  
Ona Bø Wie

Purpose The study compared how parents of children with cochlear implants (CIs) and parents of children with normal hearing perceive their children's health-related quality of life (HR-QOL). Method The sample consisted of 186 Norwegian-speaking children in the age span of 5;0–12;11 (years;months): 106 children with CIs (53% boys, 47% girls) and 80 children with normal hearing (44% boys, 56% girls). No children had known additional disabilities affecting language, cognitive development, or HR-QOL. Parents completed the generic questionnaire Pediatric Quality of Life Inventory (Varni, Seid, & Kurtin, 2001), whereas children completed a test battery measuring different aspects of language and hearing. Results Parents of children with CIs reported statistically significantly poorer HR-QOL in their children, on Pediatric Quality of Life Inventory total score and the subdomains social functioning and school functioning. Roughly 50% of parents of children with CIs reported HR-QOL levels (total score) within normal limits. No significant differences between groups emerged on the physical health and emotional functioning subscales. For the children in the group with CIs, better speech perception in everyday situations was associated with higher proxy-ratings of HR-QOL. Better spoken language skills were weakly to moderately associated with higher HR-QOL. Conclusions The findings suggest that the social and school situation is not yet resolved satisfactorily for children with CIs. Habilitation focusing on spoken language skills and better sound environment may improve social interactions with peers and overall school functioning.


2003 ◽  
Vol 5 (1) ◽  
pp. 8-14 ◽  
Author(s):  
Godelieve Nuyens ◽  
Paul Van Asch ◽  
Eric Kerckhofs ◽  
Luc Vleugels ◽  
Pierre Ketelaer

Background: The MS Quality of Life Index (MSQLI) is a modular health-related quality of life instrument consisting of the Health Status Questionnaire (SF-36) and nine MS-specific measures. The purpose of this study is to assess whether adding all the proposed MS-specific measures to the SF-36 is necessary to obtain a more comprehensive measurement of quality of life in MS. Method: Eighty-eight persons with multiple sclerosis, 42 men and 46 women, with an average age of 52.5 ± 11 years, completed the MSQLI questionnaires. The predictive value of SF-36 items to MS-specific scales was low to moderate, with r2-values ranging between 0.02 and 0.57. The accuracy of the predictive models was not sufficient enough to replace the MS-specific scales with the SF-36 items. Conclusion: Adding scales to the SF-36 may be valuable to obtain a more comprehensive view on the quality of life of people with MS. (Int J MS Care. 2003; 5: 8–14)


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