The functional index for living with multiple sclerosis: development and validation of a new quality of life questionnaire

2009 ◽  
Vol 15 (10) ◽  
pp. 1239-1249 ◽  
Author(s):  
JM Wesson ◽  
JA Cooper ◽  
LS Jehle ◽  
SN Lockhart ◽  
K. Draney ◽  
...  

Addressing health-related quality of life is considered a desirable component of routine care for patients with multiple sclerosis. However, use of available health-related quality of life surveys is not part of routine multiple sclerosis care, possibly due to administration, scoring, and interpretation challenges presented by available questionnaires. The 25-item Functional Index for Living with Multiple Sclerosis (FILMS) questionnaire was developed and validated to allow providers to monitor and easily apply health-related quality of life information to the patient encounter. The development and pilot test processes and the results of the validation study are reported here. Convergent validity, internal consistency reliability, and test—retest reproducibility were evaluated. Strong correlations of Functional Index for Living with Multiple Sclerosis subscales with control questionnaires were demonstrated by Pearson’s correlation coefficients from 0.73 to 0.88. Internal consistency reliabilities ranged from 0.80 to 0.90, demonstrating that items were grouped into the appropriate subscale domains and that the subscale domains and the questionnaire as a whole exhibited good directionality. Test—retest reproducibility was 0.91.

2011 ◽  
Vol 17 (11) ◽  
pp. 1341-1350 ◽  
Author(s):  
X Montalban ◽  
G Comi ◽  
P O’Connor ◽  
SM Gold ◽  
A de Vera ◽  
...  

Background: Health-related quality of life (HRQoL) worsens with multiple sclerosis (MS) relapses and disease progression. Common symptoms including depression and fatigue may contribute to poor HRQoL. Objectives: To report exploratory analyses assessing the impact of fingolimod (FTY720) on HRQoL and depression in a phase II study of relapsing MS. Methods: The Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and Beck Depression Inventory second edition (BDI-II) scores were assessed during a 6-month, placebo-controlled study and optional extension. Results: HAQUAMS total score improved with fingolimod and worsened with placebo. Mean score change from baseline to month 6 was −0.02 with fingolimod 1.25 mg ( p < 0.05 versus placebo), −0.01 with fingolimod 5.0 mg and + 0.12 with placebo. Categorical data supported a clinically important effect of fingolimod on HRQoL. Fingolimod 1.25 mg was also beneficial over placebo in the fatigue/thinking HAQUAMS sub-domain ( p < 0.05 versus placebo). Change in mean BDI-II scores from baseline to month 6 and the proportion of patients with BDI-II scores indicative of clinical depression favored fingolimod 1.25 mg over placebo ( p < 0.05 for both). At month 4, mean BDI-II and HAQUAMS total scores appeared to be maintained in fingolimod-treated patients. Conclusion: Fingolimod 1.25 mg may improve HRQoL and depression at 6 onths compared with placebo in patients with relapsing MS.


2020 ◽  
pp. 0000-0000
Author(s):  
Ricardo N. Alonso ◽  
Maria B. Eizaguirre ◽  
Leila Cohen ◽  
Cecilia Quarracino ◽  
Berenice Silva ◽  
...  

Abstract Background: Scales to assess disability in multiple sclerosis (MS) rarely provides reliable data on the actual global impairment. Upper limbs (UL) dysfunction is usually overlooked, which has a negative impact on the patient's well-being. Objectives: 1) to analyze the association between UL dexterity, lower limbs (LL) speed and the EDSS score. 2) To analyze the difference in UL dexterity between patients with EDSS &lt;5 and ≥5. 3) To study the association that UL dexterity, LL speed and the EDSS score have with both health-related quality of life measurements and depression. Methods: Our sample included 140 adults with MS. They were evaluated using the Nine-Hole Peg Test, the Timed 25-Foot Walk test, the EDSS, the Multiple Sclerosis International Quality of Life questionnaire (MusiQol), and the Beck Depression Inventory. We conducted a thorough descriptive-analytical research using Spearman's correlation, multiple linear regression and structural equation modeling. Results: UL dexterity was more closely related to the EDSS than LL speed (r: 0.43 vs. 0.29, R2: 0.38). UL dexterity was greatest in patients with EDSS &lt;5 (P &lt; .001). Moreover, UL dexterity was negatively associated with EDSS and the MusiQol (rS: between −0.557 and −0.358, P &lt; .05). The correlation that depression has with loss of dexterity in UL was higher than the one it has with LL speed (0.098 vs 0.066, t &gt; 1.96). Conclusions: UL dexterity is associated and global disability, depression, and health-related quality of life. We advocate for the assessment of UL dexterity during MS patients' consultations to adopt a better approach to their functional impairment.


2010 ◽  
Vol 12 (2) ◽  
pp. 83-91 ◽  
Author(s):  
Vivek S. Pawar ◽  
Gauri Pawar ◽  
Lesley-Ann Miller ◽  
Iftekhar Kalsekar ◽  
Jan Kavookjian ◽  
...  

The aim of this study was to evaluate the impact of visual impairment on health-related quality of life (HRQOL) in patients with multiple sclerosis (MS). Patients at an outpatient MS clinic were asked to complete a battery of patient-reported outcome questionnaires. Health-related quality of life was measured using the Hamburg Quality of Life Questionnaire for Multiple Sclerosis (HAQUAMS), while visual impairment was measured using the Visual Function Questionnaire (VFQ). Hierarchical regression was used to determine the relative contribution of visual impairment to HRQOL. Usable responses were obtained for 116 MS patients. Those with higher levels of visual impairment (lower scores on the VFQ) reported significantly lower HRQOL (β = –0.01, P = .0007). Visual impairment also explained an additional 4% variance in the HRQOL scores, independent of disability and depression (ΔR2 = 0.04, F7,108 = 36.58). Overall, disability was the strongest predictor of HRQOL, explaining over 60% of the variation in HRQOL scores. The model explained 70% of the total variance in HRQOL. Given the prevalence of visual impairment and its influence on overall HRQOL, MS patients should be routinely screened using standard ophthalmic examination procedures or self-administered questionnaires such as the VFQ.


2017 ◽  
Vol 56 (4) ◽  
pp. 260-267 ◽  
Author(s):  
Biljana Stern ◽  
Tanja Hojs Fabjan ◽  
Ksenija Rener-Sitar ◽  
Lijana Zaletel-Kragelj

Abstract Purpose To cross-culturally adapt and validate Multiple Sclerosis Quality of Life-54 (MSQOL-54) instrument. Methods The study which enrolled 134 Slovenian multiple sclerosis (MS) patients was conducted from March to December 2013. The internal consistency of the MSQOL-54 instrument was evaluated by Cronbach’s alpha coefficient (α), and its dimensionality assessed by the principal component analysis (PCA). Results The whole instrument had high internal consistency (α=0.88), as well as the majority of its twelve subscales (α=0.83-0.94). The results of the PCA showed two components with eigenvalue greater than 1, explaining 59.4% of the cumulative variance. Further results indicated good construct validity of the instrument with the physical health-related-quality-of-life subscales loading highly on the physical component, and mental health-related-quality-of-life subscales loading highly on the mental component. Conclusion The Slovenian version of the MSQOL-54 instrument proved to be an internally consistent and accurate tool, well accepted by the Slovenian MS patients. The adequate psychometric properties warrant the scientifically sound version of the MSQOL-54 instrument, which is from now on at disposal to all health professionals dealing with MS patients in Slovenia.


2009 ◽  
Vol 100 (3) ◽  
pp. 148-155 ◽  
Author(s):  
L. E. M. A. Pfennings ◽  
H. M. Ploeg ◽  
L. Cohen ◽  
I. Bramsen ◽  
C. H. Polman ◽  
...  

2007 ◽  
Author(s):  
Laura E. Dreer ◽  
G. McGwin ◽  
K. Scilley ◽  
G. C. Meek ◽  
A. Dyer ◽  
...  

2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.


2005 ◽  
Vol 42 (4) ◽  
pp. 355-361 ◽  
Author(s):  
Klaus Sinko ◽  
Reinhold Jagsch ◽  
Verena Prechtl ◽  
Franz Watzinger ◽  
Karl Hollmann ◽  
...  

Objective Evaluation of esthetic, functional, and health-related quality-of-life (HRQoL) outcomes in adult patients with a repaired cleft lip and palate. The treatment for all patients was based on the so-called Vienna concept. Patients/Design Seventy adult patients with a repaired complete cleft lip and palate, ranging in age from 18 to 30 years, were included in the study. Esthetic and functional outcomes were assessed by the patients themselves and by five experts using a visual analog scale. Patients also completed the MOS Short-Form 36 questionnaire to evaluate health-related quality of life. Results Patients rated their esthetic outcome significantly worse than the experts did. No significant differences were observed in the ratings for function. Female patients, especially, were dissatisfied with their esthetic outcomes. In a personal interview, nearly 63% of them asked for further treatment, particularly for upper-lip and nose corrections. The health-related quality-of-life questionnaire revealed low scores for only two subscales, namely social functioning and emotional role. In most subscales of health-related quality of life, patients who desired further treatment had significantly lower scores than did patients who desired no further treatment. Conclusion Surgery of the lip and nose appears to be of prime importance for patients with a cleft lip and palate. Cleft patients who do not request secondary treatment are not always satisfied with the treatment. Patients with realistic expectations in regard to further treatment should be treated by specialists, whereas those with unrealistic expectations should be referred to a clinical psychologist.


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