Disease specific quality of life instruments in multiple sclerosis: Validation of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS)

2001 ◽  
Vol 7 (2) ◽  
pp. 119-130 ◽  
Author(s):  
S M Gold ◽  
C Heesen ◽  
H Schulz ◽  
U Guder ◽  
A Mönch ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Internal Consistency ◽  
Discriminant Validity ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Convergent And Discriminant Validity ◽  
Patient Groups ◽  
Disease Specific

Quality of life (QoL) is discussed as an additional outcome measure in multiple sclerosis (MS). However, few questionnaires assessing disease specific QoL in MS have been published. On the basis of the literature and interviews with clinicians and MS patients, we have developed a disease specific QoL instrument and validated it in a broad range of patients with MS. In this study, a heterogeneous sample of n=237 MS patients completed the newly developed Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS, in German language) and a battery of already validated questionnaires. They further underwent neurological scoring and objective tests. By these means, we investigated its validity, appropriateness, internal consistency, and retest reliability. Internal consistency and retest coefficients were high and satisfied psychometric standards. Convergent and discriminant validity was supported by direction, magnitude and pattern of correlations with other health measures. HAQUAMS subscales and its total score distinguished between patient groups of varied disease severity, cognitive impairment, and affective symptomatology. No floor or ceiling effects were found in either of the HAQUAMS subscales. The HAQUAMS is a reliable, valid and appropriate instrument for QoL assessment in multiple sclerosis. Data of responsiveness are currently being obtained.

Validation of the Multiple Sclerosis International Quality of Life questionnaire

2007 ◽  
Vol 14 (2) ◽  
pp. 219-230 ◽  
Author(s):  
MC Simeoni ◽  
P. Auquier ◽  
O. Fernandez ◽  
P. Flachenecker ◽  
S. Stecchi ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Internal Consistency ◽  
Discriminant Validity ◽  
Short Form ◽  
Life Questionnaire ◽  
Validity And Reliability ◽  
Sf 36 ◽  
Quality Of Life Scale

This study aims to validate the Multiple Sclerosis (MS) International Quality of Life (MusiQoL) questionnaire, a multi-dimensional, self-administered questionnaire, available in 14 languages, as a disease-specific quality of life scale that can be applied internationally. A total of 1992 patients with different types and severities of MS from 15 countries were recruited. At baseline and day 21 ± 7, each patient completed the MusiQoL, a symptom checklist and the short-form (SF)-36 QoL questionnaire. Neurologists also collected socio-demographic, MS history and outcome data. The database was randomly divided into two subgroups and analysed according to different patient characteristics. For each model, psychometric properties were tested and the number of items was reduced by various statistical methods. Construct validity, internal consistency, reproducibility and external consistency were also tested. Nine dimensions, explaining 71% of the total variance, were isolated. Internal consistency and reproducibility were satisfactory for all the dimensions. External validity testing revealed that dimension scores correlated significantly with all SF-36 scores, but showed discriminant validity by gender, socio-economic and health status. Significant correlations were found between activity in daily life scores and clinical indices. These results demonstrate the validity and reliability of the MusiQoL as an international scale to evaluate QoL in patients with MS. Multiple Sclerosis 2008; 14: 219—230. http://msj.sagepub.com

scholarly journals The 27-Item Multiple Sclerosis Quality of Life Questionnaire: A New Brief Measure Including Treatment Burden and Work Life

2021 ◽  
Author(s):  
Helen Beckmann ◽  
Christoph Heesen ◽  
Matthias Augustin ◽  
Christine Blome
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Construct Validity ◽  
Convergent Validity ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Patient Reported ◽  
Disease Specific

Abstract Background: Treatment- and work-related aspects have been neglected in health-related quality of life (HRQOL) measures in multiple sclerosis (MS). We aimed to develop a brief instrument covering all important impairment-, activity-, participation-, and treatment-related aspects for use in research and practice. Methods: The 27-item Multiple Sclerosis Quality of Life Questionnaire (MS-QLQ27) was developed using open item collection, a multidisciplinary expert panel, and cognitive pretesting. It was evaluated for reliability, construct validity, and responsiveness with 100 patients presenting with relapse (84 at follow-up ~14 days later). Construct validity was analyzed by correlating the MS-QLQ27 with the disease-specific Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and generic HRQOL instuments. The Expanded Disability Status Scale (EDSS) was used to analyze known-groups validity. Responsiveness was determined as the correlation of changes in MS-QLQ27 scores with changes in validation criteria. Results: Internal consistency was high (Cronbach α = 0.94 at baseline and 0.93 at follow-up). Convergent validity was supported by direction and magnitude of associations with disease-specific and generic instruments. Correlations with change in convergent criteria were strong, indicating responsiveness. The HAQUAMS showed the strongest associations with the MSQLQ27. The MS-QLQ27 showed the highest effect size compared with other patient-reported outcomes and the EDSS. It successfully distinguished between levels of disease severity. Conclusions: These results indicate that the MS-QLQ27 is a reliable, valid, and highly responsive instrument for assessing HRQOL during relapse evolution in MS. Its advantages are that it is brief yet comprehensive, covering work- and treatment-related aspects not addressed in previous measures.

The UFS-QOL, a New Disease-Specific Symptom and Health-Related Quality of Life Questionnaire for Leiomyomata

2002 ◽  
Vol 99 (2) ◽  
pp. 290-300 ◽  
Author(s):  
James B. Spies ◽  
Karin Coyne ◽  
Noureddine Guaou Guaou ◽  
Deneane Boyle ◽  
Kerry Skyrnarz-Murphy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Questionnaire ◽  
New Disease ◽  
Health Related Quality ◽  
Specific Symptom ◽  
Quality Of Life Questionnaire ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

scholarly journals Polish Adaptation of the Italian Spine Youth Quality of Life Questionnaire

2021 ◽  
Vol 10 (10) ◽  
pp. 2081
Author(s):  
Edyta Kinel ◽  
Krzysztof Korbel ◽  
Piotr Janusz ◽  
Mateusz Kozinoga ◽  
Dariusz Czaprowski ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Internal Consistency ◽  
Spinal Deformity ◽  
Cultural Adaptation ◽  
Life Questionnaire ◽  
Alpha Coefficient ◽  
Cronbach’S Alpha ◽  
Quality Of Life Questionnaire ◽  
Cronbach's Alpha

The study aimed to carry on the process of the cultural adaptation of the Italian Spine Youth Quality of Life Questionnaire (ISYQOL) into Polish (ISYQOL-PL). The a priori hypothesis was: the ISYQOL-PL questionnaire is reliable and appropriate for adolescents with a spinal deformity. Fifty-six adolescents (mean age 13.8 ± 1.9) with idiopathic scoliosis (AIS) with a mean Cobb angle 29.1 (±9.7) and two with Scheuermann juvenile kyphosis (SJK) with a kyphosis angle 67.5 (±17.7) degrees were enrolled. All patients had been wearing a corrective TLSO brace for an average duration of 2.3 (±1.8) years. The Institutional Review Board approved the study. The cross-cultural adaptation of the ISYQOL-PL was performed following the guidelines set up by the International Quality of Life Assessment Project. The reliability was assessed using internal consistency (the Cronbach’s alpha coefficient) and test–retest reliability (intraclass correlation coefficient ICC2.1, CI = 95%); moreover, floor and ceiling effects were calculated. The internal consistency was satisfactory (Cronbach’s alpha coefficient 0.8). The test–retest revealed high reliability with the value of ICC2.1 for the entire group 0.90, CI (0.84 to 0.94). There was neither floor nor ceiling effect for the ISYQOL-PL overall score. The ISYQOL-PL is reliable and can be used in adolescents with spinal deformity.

Development of a new disease-specific quality-of-life questionnaire to adults living with haemophilia

Haemophilia ◽  
2004 ◽  
Vol 10 (4) ◽  
pp. 376-382 ◽  
Author(s):  
P. Arranz ◽  
E. Remor ◽  
M. Quintana ◽  
A. Villar ◽  
J. L. Diaz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Questionnaire ◽  
New Disease ◽  
Quality Of Life Questionnaire ◽  
Disease Specific
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