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

Author(s):  
Helen Beckmann ◽  
Christoph Heesen ◽  
Matthias Augustin ◽  
Christine Blome

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.

2001 ◽  
Vol 7 (2) ◽  
pp. 119-130 ◽  
Author(s):  
S M Gold ◽  
C Heesen ◽  
H Schulz ◽  
U Guder ◽  
A Mönch ◽  
...  

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.


2002 ◽  
Vol 99 (2) ◽  
pp. 290-300 ◽  
Author(s):  
James B. Spies ◽  
Karin Coyne ◽  
Noureddine Guaou Guaou ◽  
Deneane Boyle ◽  
Kerry Skyrnarz-Murphy ◽  
...  

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Zoe Morou ◽  
Georgios N. Lyrakos ◽  
Nikolaos G. Papadopoulos ◽  
Nikolaos Douladiris ◽  
Athina Tatsioni ◽  
...  

The aim of the study is to determine the reliability and validity of the Greek version of the Food Allergy Quality of life Questionnaire- Child Form (FAQLQ-CF). After linguistic validation, the Greek FAQLQCF, Food Allergy Independent Measure (FAIM) and Pediatric Quality of Life Inventory (PedsQL™) were used by a physician to interview children diagnosed with food allergy and aged 8-12 via telephone. Cronbach’s alpha was used to evaluate reliability, and factor analysis to assess construct validity. The correlation between FAQLQ-CF and FAIM was moderate (rho=0.509, P<0.001) and internal consistency was strong (Cronbach’s alpha 0.905). FAQLQ-CF discriminated well each question’s contribution to children’s quality of life deterioration (32- 80%), each child’s quality of life (17-89%), children differing in doing things with others (total score 3.55 vs 2.57, difference =0.98 > minimal clinical importance difference = 0.5; P<0.001), but not children differing in reporting anaphylaxis. The total FAQLQ-CF score correlated with the total PedsQL™ score and with the score of one of PedsQL™ subscales, demonstrating convergent validity. Factor analysis uncovered an underlying structure of four factors, explaining 50% of the variance. We can conclude that Greek FAQLQ-CF is a reliable, valid, discriminant tool for interviewing food allergic children aged 8- 12, detecting those in need for immediate care.


2021 ◽  
Author(s):  
BERNA KURT ◽  
ZEYNEP SİPAHİ KARSLI ◽  
BERNA ÖMÜR ÇAKMAK ÖKSÜZOĞLU ◽  
EMİNE ÖZTÜRK ◽  
NESLİHAN DEMİRÖRS ◽  
...  

Abstract Background The objective of this study is to evaluate the impact of peripheral neuropathy on the quality of life of breast cancer patients throughout with monthly follow-up during 4 months of paclitaxel treatment.Material and methods The research was conducted with a prospective cross sectional with four follow-ups descriptive design. The study population consisted of female patients with breast cancer at Ankara Oncology Training and Research Hospital between August 2018 and January 2019. Data were collected the ‘’Patient Information Form’’,‘’EORTC C30 Cancer Quality Of Life Questionnaire’’ and ‘’Chemotherapy-Induced Peripheral Neuropathy Assessment Tool’’. The study was undertaken in accordance with the STROBE checklist for cross-sectional studies. Results Of 79 patients included in the Chemotherapy-Induced Peripheral Neuropathy Assessment Tool except for the general activity subdimension were statistically significant in the ratings of 2nd, compared to 1st; 3rd compared to 1st and 2nd; 4th compared to 1st, 2nd, and 3rd follow-up periods. The overall mean of EORTC C30 Cancer Quality of Life Questionnaire, functional subdimension, symptom severity, and general well-being in the evaluations of 2nd, compared with 1st; 3rd compared with 1st and 2nd; 4th compared with 1st, 2nd, and 3rd follow-up periods it was found that the mean values of symptom that decreased gradually were statistically significant.Conclusion The neuropathy scale was found to be higher in 2nd, 3rd, 4th follow-up periods than in 1st follow-up. Also, EORTC C30 Cancer QLQ subdimensions were high initially but gradually decreased after the fourth cycle. Thus, it was found that the increase in neuropathy symptoms negatively affects the quality of life.


2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Kanokvalai Kulthanan ◽  
Leena Chularojanamontri ◽  
Chuda Rujitharanawong ◽  
Puncharas Weerasubpong ◽  
Marcus Maurer ◽  
...  

Abstract Background The Angioedema Quality of Life (AE-QoL) is the first patient reported outcome measure developed for the assessment of quality of life (QoL) impairment in patients with recurrent angioedema (RAE). This study aimed to evaluate the clinimetric properties of the AE-QoL in Thai patients and to establish categories of QoL impairment assessed by the AE-QoL. Methods The validated Thai version of the Dermatology Life Quality Index (DLQI) and Patient Global Assessment of Quality of Life (PGA-QoL) were used to comparatively evaluate the Thai version of AE-QoL. Spearman correlations between the Thai AE-QoL and two other standard measurements (DLQI and PGA-QoL) were investigated to determine convergent validity. The Thai DLQI and PGA-QoL were used to categorize patients according to their QoL. Known-group validity of the Thai AE-QoL was later analyzed. The reliability of the Thai AE-QoL was investigated using Cronbach’s alpha and intraclass correlation. Three different approaches including the distribution method, receiver operating characteristic curve analysis, and the anchor based-method were used for the interpretability. Results A total of 86 patients with RAE with a median age of 38.0 ± 15.1 years (range 18–76) were enrolled. Of those, 76 patients (88%) had RAE with concomitant wheals, and 10 patients (11.6%) had RAE only. The AE-QoL assessed RAE-mediated QoL impairment with high convergent validity and known-groups validity, high internal consistency and test-retest reliability, and good sensitivity to change. Although the AE-QoL did not differentiate between patients with moderate and large effect as measured by PGA-QoL or DLQI in this study, AE-QoL total values of 0–23, 24 to 38, and ≥ 39 could define patients with “no effect”, “small effect”, and “moderate to large effect” of RAE on their QoL, respectively. Conclusions This study supports the validity and reliability of the Thai version of the AE-QoL, which is a very different language from the original version. Categories allow to classify the effect of RAE on patients’ QoL as “none”, “small”, and “moderate to large”. Further studies are needed to confirm the applicability of AE-QoL in other Asian populations”.


2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Paul Vicuña Serrano ◽  
Gerardo Beltran Serrano ◽  
Iraci L. S. Torres ◽  
Roberta Rossi Graudner ◽  
Wolnei Caumo

Abstract Background To assess the psychometric properties, including internal consistency, construct validity, criterion validity, criterion-group validity, and responsiveness, the Reviewed McGill Quality of Life Questionnaire (MQOL-R), into Brazilian Portuguese-(BrP). Also, to analyze the relationship of the BrP-MQOL-R with the scores on the Karnofsky Performance Scale (KPS) and on the Numerical Pain Scale (NPS 0–10). Methods The BrP-MQOL-R was administered to a sample of 146 adults (men = 78). A team of experts translated the MQOL-R according to international guidelines. Convergent validity and Confirmatory factor analysis (CFA) was performed. Results The BrP-MQOL-R Cronbach’s alpha was 0.85. CFA supported the original four-factor structure, with the following revised model fit-indices: PCLOSE = 0.131, Tucker-Lewis Index (TLI) rho 2 = 0.918, incremental fit index (IFI) delta 2 = 0.936. The convergence validity is supported by a significant correlation between BrP-MQOL-R total scores and their subscales with KPS and with the single item related to the quality of life. And by a converse correlation with the pain scores in the NPS (0–10). Receiver operator characteristics (ROC) analysis showed subjects with KPS equal to or lower than 30% could be discriminated from those with scores on KPS higher than 30% by an area under the curve (AUC) = 0.71, sensitivity = 97%, and specificity = 92%). Conclusion The BrP-MQOL-R proves to be a reliable instrument for assessing the quality of life (QOL) in palliative care (PC), with primary evidence of validity. BrP-MQOL-R presented adequate discriminate properties to identify distinct conditions that impact the QOL in PC.


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