Mapping the disease-specific LupusQoL to the SF-6D

Meacock, Rachel; Harrison, Mark; McElhone, Kathleen; Abbott, Janice; Haque, Sahena; Bruce, Ian N.; Teh, Lee‐Suan

doi:10.1007/s11136-014-0892-4

Cited by 12 publications

(14 citation statements)

References 39 publications

(55 reference statements)

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“…The LupusQoL has previously demonstrated good construct, face, discriminative, and concurrent validity, and internal and test–retest reliability, and has been mapped to the Short Form in 6 dimensions 8, 40, 41. Linguistic validations have enabled the instrument to be employed successfully in 51 countries using 77 different languages 42.…”

Section: Discussionmentioning

confidence: 99%

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

McElhone

Abbott

Sutton

et al. 2016

Arthritis Care & Research

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ObjectiveAs a health‐related quality of life (HRQOL) measure, the LupusQoL is a reliable and valid measure for adults with systemic lupus erythematosus (SLE). This study evaluates the responsiveness and minimal important differences (MIDs) for the 8 LupusQoL domains.MethodsPatients experiencing a flare were recruited from 9 UK centers. At each of the 10 monthly visits, HRQOL (LupusQoL, Short Form 36 health survey [SF‐36]), global rating of change (GRC), and disease activity using the British Isles Lupus Assessment Group 2004 index were assessed. The responsiveness of the LupusQoL and the SF‐36 was evaluated primarily when patients reported an improvement or deterioration on the GRC scale and additionally with changes in physician‐reported disease activity. MIDs were estimated as mean changes when minimal change was reported on the GRC scale.ResultsA total of 101 patients were recruited. For all LupusQoL domains, mean HRQOL worsened when patients reported deterioration and improved when patients reported an improvement in GRC; SF‐36 domains showed comparable responsiveness. Improvement in some domains of the LupusQoL/SF‐36 was observed with a decrease in disease activity, but when disease activity worsened, there was no significant change. LupusQoL MID estimates for deterioration ranged from −2.4 to −8.7, and for improvement from 3.5 to 7.3; for the SF‐36, the same MID estimates were −2.0 to −11.1 and 2.8 to 10.9, respectively.ConclusionAll LupusQoL domains are sensitive to change with patient‐reported deterioration or improvement in health status. For disease activity, some LupusQoL domains showed responsiveness when there was improvement but none for deterioration. LupusQoL items were derived from SLE patients and provide the advantage of disease‐specific domains, important to the patients, not captured by the SF‐36.

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Section: Discussionmentioning

confidence: 99%

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

McElhone

Abbott

Sutton

et al. 2016

Arthritis Care & Research

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“…The 28 studies included [15,18,20,24,[31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][47][48][49][50][51][52] were split into two groups: 19 developing novel mapping algorithms in RDs (Table 1), and 9 applying existing algorithms to RD patient-level data (Table 2).…”

Section: Synthesis Of Included Studiesmentioning

confidence: 99%

“…the Glasgow Outcome Scale, GOS). As target measure, EQ-5D was the most prevalent (n=15, of which only one used the 5-level version), while three studies [35,39,41] used the SF-6D, and one mapped to both EQ-5D and 15D. Among those using EQ-5D, 10 studies chose the English tariff, alone or in combination with the Dutch.…”

Section: Novel Mapping Studies In Rdsmentioning

confidence: 99%

“…In terms of study design, eleven performed ad hoc cross-sectional surveys to collect PRO data for mapping [15,33,37,38], or were secondary analyses of cross-sectional data collected for other purposes [18,24,31,39,41,XX,XX]. Five [20,35,40,42,44] used cross-sectional (usually baseline) data from cohort studies, two [36,43] used longitudinal data collected within randomized controlled trials (RCTs), and one [32] identified three studies (two observational and one cross-sectional) from the literature, and accessed their data.…”

Section: Novel Mapping Studies In Rdsmentioning

confidence: 99%

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‘Mapping’ Health State Utility Values from Non-preference-Based Measures: A Systematic Literature Review in Rare Diseases

et al. 2020

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This research was funded by the European Commission's Horizon 2020 research and innovation programme and was undertaken under the auspices of IMPACT-HTA (Grant number 779312). The results presented here reflect the authors' views and not the views of the European Commission. The European Commission is not liable for any use of the information communicated. Data availabilityThe datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

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“…Meacock et al [46] mapped the disease-specific LupusQoL to the SF-6D, a generic preference-based measure of health-related QOL. The authors developed an algorithm for those seeking to use existing data sets to estimate health state utility values from patient responses to the LupusQoL.…”

Section: Additional Recent Publications Incorporating the Patient Permentioning

confidence: 99%

Incorporating the patient's perspective in outcomes research

Hsiao

Fraenkel

2017

Current Opinion in Rheumatology

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Purpose of review Incorporation of the patients’ perspective in clinical research is critical to ensure that outcomes measured reflect those, which matter most to patients. This review summarizes recent efforts to include the patients’ perspective in the development of outcome measures and the importance of encouraging patient participation in decision-making and self-management. Recent findings Since the inclusion of fatigue as a patient-endorsed core outcome measure in rheumatoid arthritis (RA) trials, OMERACT has been instrumental in advocating for patient involvement in the development of core domains and instruments; current endeavors include cultivating an understanding of remission through the eyes of patients and gaining a sense of how to measure features of pain and ‘stiffness’ deemed as important to patients. The concept of remission was further explored in RA patients, highlighting a common goal of returning to normality; additionally, various tools have been developed to assess for unmet needs in rheumatology patients. Advances have also been made in the development and revision of patient-centered core measures in rheumatologic diagnoses outside of RA. Summary Incorporating the patients’ perspective is now considered an essential feature in outcomes research. Future research should focus on how best to involve patients in specific research activities.

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Mapping the disease-specific LupusQoL to the SF-6D

Cited by 12 publications

References 39 publications

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

Sensitivity to Change and Minimal Important Differences of the LupusQoL in Patients With Systemic Lupus Erythematosus

‘Mapping’ Health State Utility Values from Non-preference-Based Measures: A Systematic Literature Review in Rare Diseases

Incorporating the patient's perspective in outcomes research

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