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  • 1
    Online Resource
    Online Resource
    Benefit evaluation in multiple sclerosis relapse treatment from the patients’ perspective – Development and validation of a new questionnaire
    Elsevier BV ; 2019
    In:  Multiple Sclerosis and Related Disorders Vol. 28 ( 2019-02), p. 256-261
    Details
    In: Multiple Sclerosis and Related Disorders, Elsevier BV, Vol. 28 ( 2019-02), p. 256-261
    Type of Medium: Online Resource
    ISSN: 2211-0348
    URL: Article
    DOI: 10.1016/j.msard.2018.12.021
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2019
    detail.hit.zdb_id: 2645330-7
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  • 2
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    Online Resource
    Towards patients’ understanding of health-related quality of life—a mixed-method study in psoriasis and multiple sclerosis
    Springer Science and Business Media LLC ; 2019
    In:  Quality of Life Research Vol. 28, No. 10 ( 2019-10), p. 2717-2729
    Details
    In: Quality of Life Research, Springer Science and Business Media LLC, Vol. 28, No. 10 ( 2019-10), p. 2717-2729
    Type of Medium: Online Resource
    ISSN: 0962-9343 , 1573-2649
    URL: Article
    DOI: 10.1007/s11136-019-02227-4
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2019
    detail.hit.zdb_id: 2008960-0
    SSG: 5,1
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  • 3
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    Online Resource
    The 27-Item Multiple Sclerosis Quality of Life Questionnaire: A New Brief Measure Including Treatment Burden and Work Life
    Consortium of Multiple Sclerosis Centers ; 2022
    In:  International Journal of MS Care Vol. 24, No. 4 ( 2022-07-01), p. 147-153
    Details
    In: International Journal of MS Care, Consortium of Multiple Sclerosis Centers, Vol. 24, No. 4 ( 2022-07-01), p. 147-153
    Abstract: 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 in 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 instruments. 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 MS-QLQ27. 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.
    Type of Medium: Online Resource
    ISSN: 1537-2073
    URL: Article
    DOI: 10.7224/1537-2073.2020-088
    Language: English
    Publisher: Consortium of Multiple Sclerosis Centers
    Publication Date: 2022
    detail.hit.zdb_id: 2128700-4
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  • 4
    Online Resource
    Online Resource
    Challenges and lessons learned from using anchoring vignettes to explore quality of life response behavior
    Springer Science and Business Media LLC ; 2020
    In:  Quality of Life Research Vol. 29, No. 8 ( 2020-08), p. 2149-2159
    Details
    In: Quality of Life Research, Springer Science and Business Media LLC, Vol. 29, No. 8 ( 2020-08), p. 2149-2159
    Abstract: Asking patients to rate health-related quality of life (HRQoL) of hypothetical individuals described in anchoring vignettes has been proposed to enhance knowledge on how patients understand and respond to HRQoL questionnaires. In this article, we describe the development of anchoring vignettes and explore their utility for measuring response shift in patients’ self-reports of HRQoL. Methods We conducted an explorative mixed-methods study. One hundred patients with multiple sclerosis or psoriasis participated in two interviews at intervals of 3–6 months. During both interviews, patients assessed HRQoL of 16 hypothetical individuals on the SF-12 questionnaire (two vignettes for each of the eight domains of the SF-12). In addition to these quantitative ratings, we used the think-aloud method to explore changes in patients’ verbalization of their decision processes during vignette ratings. Results Agreement of vignette ratings at baseline and follow-up was low (ICCs  〈  0.55). In addition, paired sample t -tests revealed no significant directional mean changes in vignette ratings. Thus, ratings changed non-directionally, neither confirming retest reliability nor a systematic change of assessment. Furthermore, patients’ verbalization of their decision processes did not indicate whether or not the assessment strategy of individual patients had changed. Conclusions Patients’ ratings of anchoring vignettes fluctuate non-directionally over time. The think-aloud method appears not to be informative in exploring whether these fluctuations are due to changes in the individual decision process. Overall, vignettes might not be an appropriate approach to explore response shift, at least with regard to the specific target population and the use of the SF-12.
    Type of Medium: Online Resource
    ISSN: 0962-9343 , 1573-2649
    URL: Article
    DOI: 10.1007/s11136-020-02488-4
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2008960-0
    SSG: 5,1
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  • 5
    Online Resource
    Online Resource
    How to measure fluctuating impairments in people with MS: development of an ambulatory assessment version of the EQ-5D-5L in an exploratory study
    Springer Science and Business Media LLC ; 2021
    In:  Quality of Life Research Vol. 30, No. 7 ( 2021-07), p. 2081-2096
    Details
    In: Quality of Life Research, Springer Science and Business Media LLC, Vol. 30, No. 7 ( 2021-07), p. 2081-2096
    Abstract: Health fluctuations even within a single day are typical in multiple sclerosis (MS), but are not captured by widely used questionnaires like the EQ-5D-5L. This exploratory study aimed to develop an ambulatory assessment (AA) version of the EQ-5D-5L (EQ-5D-AA) where patients rate their health on mobile phones multiple times per day over several days, and to assess its feasibility and face validity. Methods An initial EQ-5D-AA version was based on two patient focus groups. It was then tested and continuously developed in an iterative process: patients completed it over several days, followed by debriefing interviews. Findings were used to refine the EQ-5D-AA, with the resulting version being tested by the subsequent wave of patients until participants declared no need for changes anymore. Before and after the AA period, participants completed the standard paper-based EQ-5D-5L asking about ‘today’. Results Focus group participants reported that their impairments often fluctuated between and within days. They regarded an AA with three assessments per day over seven days most appropriate; assessment should be retrospective to the previous assessment, but not all items should be assessed at each time point. Four waves of AA testing were conducted. Thirteen out of the 17 participants preferred the AA over standard assessment as they regarded it more informative, but not too burdensome. Conclusion The newly developed one-week AA of the EQ-5D-5L captures within-day and day-to-day health fluctuations in people with MS. From the patients’ perspective, it is a feasible and face valid way to provide important information beyond what is captured by the standard EQ-5D-5L.
    Type of Medium: Online Resource
    ISSN: 0962-9343 , 1573-2649
    URL: Article
    DOI: 10.1007/s11136-021-02802-8
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 2008960-0
    SSG: 5,1
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  • 6
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    Online Resource
    Recall of health-related quality of life: how does memory affect the SF-6D in patients with psoriasis or multiple sclerosis? A prospective observational study in Germany
    BMJ ; 2019
    In:  BMJ Open Vol. 9, No. 11 ( 2019-11), p. e032859-
    Details
    In: BMJ Open, BMJ, Vol. 9, No. 11 ( 2019-11), p. e032859-
    Abstract: This study aimed to quantify recall bias in the measurement of health-related quality of life (HRQoL), that is, the extent to which recollection is impaired and leads to distorted judgements. Design Prospective observational study. Setting and participants One hundred patients with two paradigmatic chronic diseases (50 with multiple sclerosis and 50 with psoriasis) were recruited at two outpatient clinics. Methods and outcome measures Patients completed the online version of the 12-Item Short Form Survey (SF-12) repeatedly for 28 consecutive days: (1) daily, considering the past 24 hours; (2) weekly, considering the past 7 days; and (3) on the last day of data collection, considering the past 4 weeks. SF-12 scores for all three measurement approaches were subsequently converted into preference-based utility indices (Short-Form Six-Dimension). Agreement of the three indices was analysed on group and individual patient levels. Results The mean age of participants was 40.3 years (±12.0), and 63% were female. The utility index based on daily recall (0.74±0.13) was more positive than indices based on a weekly (0.70±0.13, p 〈 0.001) or a monthly (0.70±0.14, p 〈 0.001) recall. While agreement of measurement approaches was high on group level (intraclass correlation coefficient 〉 0.85), it was lower for the subgroup of patients experiencing high variability of HRQoL over time. Bland-Altman plots revealed considerable differences on individual patient level. Conclusions On the group level, retrospective overestimation and underestimation of HRQoL almost cancelled out one another and recall bias was relatively small. Therefore, a 4-week recall period could be appropriate when group-level data are used for research or economic evaluations. In contrast, recall bias can be considerable on the individual patient level and may thus impact decision-making in clinical practice. Trial registration number VfD_RECALL_16_003837.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    URL: Article
    DOI: 10.1136/bmjopen-2019-032859
    Language: English
    Publisher: BMJ
    Publication Date: 2019
    detail.hit.zdb_id: 2599832-8
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