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DIFFERENTIATION OF HEALTH-RELATED QUALITY OF LIFE OUTCOMES BETWEEN FIVE DISEASE AREAS: RESULTS FROM AN INTERNATIONAL SURVEY OF PATIENTS

Published online by Cambridge University Press:  25 September 2018

Olina Efthymiadou ,
Jean Mossman  and
Panos Kanavos
Olina Efthymiadou
Affiliation:
Medical Technology Research Group, LSE Health, London School of [email protected]
Jean Mossman
Affiliation:
Medical Technology Research Group, LSE Health, London School of Economics
Panos Kanavos
Affiliation:
Department of Social Policy, Medical Technology Research Group, LSE Health
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Abstract

Objectives:

Health-related quality of life (HRQoL) data generated by generic, preference-based instruments (i.e., EQ-5D) are highly demanded in health policy decision making, because they allow for direct comparisons of HRQoL outcomes between disease areas. We aimed to quantify HRQoL outcomes in breast cancer (BC), rheumatoid arthritis (RA), multiple sclerosis (MS), rare cancers (RC), and rare disease (RD) patients and understand the patterns that differentiate HRQoL outcomes between these disease areas, and more specifically between rare and more common disease population groups.

Methods:

An international, Web survey of patients measured HRQoL (EQ-5D-5L), self-perceived health (EQ-5D-5L Visual Analogue Scale), and additional QoL dimensions, such as patient disability level.

Results:

We received 675 completed responses. Average utility loss was 53.5 percent, 32.5 percent, and 33.3 percent for RD, RA, and MS patients, respectively, in contrast to 18.6 percent for BC and RC patients. Statistically significant differences (p < .05) were observed between disease groups in all EQ-5D-5L domain outcomes, apart from that of “Anxiety/Depression.” Severe and/or extreme problems were reported in performing usual activities for RD and RC (34 percent and 13 percent of overall problems reported respectively), mobility for MS (18 percent), pain/discomfort for RA (13 percent), and anxiety/depression for BC (7 percent) patients.

Conclusions:

We demonstrated significant differences in the dimensions that drive HRQoL outcomes between rare and more common diseases and showcased that the same EQ-5D utility may reflect very different severities depending on the patient population under investigation. Future research should examine whether outcomes in other, critical HRQoL domains not included in generic measures also highlight significant differences across disease areas.

Keywords

QoL utilitiesPatient preferencesHealth Technology AssessmentEQ-5D-5LRare diseases
Type
Assessment
Information
International Journal of Technology Assessment in Health Care , Volume 34 , Issue 5 , 2018 , pp. 498 - 506
Copyright
Copyright © Cambridge University Press 2018 

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Footnotes

This study was supported by Advance-HTA, a research grant that has received funding from the European Commission, DG Research, 7th Framework Programme for Research (grant agreement No. 305983). The views expressed in this study are those of the authors and do not represent the views of the European Commission, DG Research. We are grateful for the invaluable support of all the European and international patient associations that were invited to participate in the study and voluntarily agreed to share the Web-survey links with their networks of patients. Finally, we are thankful to Hala Hourani, Ansgar Lange, Erica Visintin, and Olivier Wouters for their assistance in translating the survey questionnaires and for providing valuable support in the research process.

References

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