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

  • Olina Efthymiadou (a1), Jean Mossman (a2) and Panos Kanavos (a3)

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.

Copyright

Footnotes

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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.

Footnotes

References

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1.Schlenk, EA, Erlen, JA, Dunbar-Jacob, J, et al. Health-related quality of life in chronic disorders: A comparison across studies using the MOS SF-36. Qual Life Res. 1998;7:5765.
2.Global Burden of Disease Cancer Collaboration. The global burden of cancer 2013. JAMA Oncol. 2015;1:505527.
3.Global Alliance for Musculoskeletal Health. 2010. Influential global alliance calls on governments and the World Health Organisation to prioritise musculoskeletal health following findings of Global Burden of Disease Study. http://bjdonline.org/musculoskeletal-conditions-the-second-greatest-cause-of-disability-2/ (Accessed April 10, 2018).
4.Pfizer, Value of Medicines. Value of medicines for rare diseases. Issued by Global Policy and International Public Affairs. http://www.pfizer.com/files/health/Value_of_Medicine_Rare_Diseases.pdf (Accessed April 22, 2018).
5.Brazier, J, Rowen, D. (2011). NICEDSU technical support document 11: Alternatives to EQ-5D for generating health state utility values. Report By The Decision Support Unit. March 2011. http://www.nicedsu.org.uk/TSD11%20Alternatives%20to%20EQ-5D_final.pdf (Accessed April 6, 2016).
6.EURORDIS (2010). Why Research on Rare Diseases? http://www.eurordis.org/sites/default/files/publications/why_rare_disease_research.pdf (Accessed March 28, 2016).
7.Schuller, Y, Hollak, CEM, Biegstraaten, M. The quality of economic evaluations of ultra-orphan drugs in Europe – a systematic review. Orphanet J Rare Dis. 2015;10:92.
8.Marra, CA, Woolcott, JC, Kopec, JA, et al. A comparison of generic, indirect utility measures (the HUI2, HUI3, SF-6D, and the EQ-5D) and disease-specific instruments (the RAQoL and the HAQ) in rheumatoid arthritis. Soc Sci Med. 2005;60:15711582.
9.Sprangers, MA, de Regt, EB, Andries, F, et al. Which chronic conditions are associated with better or poorer quality of life? J Clin Epidemiol. 2000;53:895907.
10.EuroQol. Who is using EQ-5D?. http://www.euroqol.org/about-eq-5d/how-to-use-eq-5d/who-is-using-eq-5d.html (Accessed March 9, 2015).
11.EuroQoL. EQ-5D-5L, Valuation. https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/valuation/ (Accessed March 11, 2015).
12.EuroQoL. EQ-5D-5L, population norms. https://euroqol.org/eq-5d-instruments/eq-5d-3l-about/population-norms/ (Accessed March 11, 2015).
13.Brooks, R. EuroQoL: The current state of play. Health Policy. 1996;37:5372.
14.Angelis, A, Kanavos, P, López-Bastida, J, et al. Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom. BMC Health Serv Res. 2015;15:428.
15.De Wit, GA, Busschbach, JJ, De Charro, FT. Sensitivity and perspective in the valuation of health status: Whose values count? Health Econ. 2000;9:109126.
16.Krabbe, PF, Tromp, N, Ruers, TJ, van Riel, PL. Are patients' judgments of health status really different from the general population? Health Qual Life Outcomes. 2011;9:31.
17.Versteegh, MM, Leunis, A, Uyl-de Groot, CA, Stolk, EA. Condition-specific preference-based measures: Benefit or burden? Value Health. 2012;15:504513.
18.López-Bastida, J, Linertová, R, Oliva-Moreno, J, et al. Social/economic costs and health-related quality of life in patients with Prader-Willi syndrome in Europe. Eur J Health Econ. 2016;17(Suppl 1):99108.
19.Chevreul, K, Gandré, C, Brigham, KB, et al. Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe. Eur J Health Econ. 2016;17(Suppl 1):4352.
20.Cavazza, M, Kodra, Y, Armeni, P, et al. Social/economic costs and health-related quality of life in patients with Duchenne muscular dystrophy in Europe. Eur J Health Econ. 2016;17(Suppl 1):1929.
21.Winter, Y, Schepelmann, K, Spottke, AE, et al. Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. J Neurol. 2010;257:14731481.
22.Calvert, M, Pall, H, Hoppitt, T, et al. Health-related quality of life and supportive care in patients with rare long-term neurological conditions. Qual Life Res. 2013;22:12311238.
23.Kanavos, P, Nicod, E. What is wrong with orphan drug policies? Suggestions for ways forward. Value Health. 2012;15:11821184.
24.Drummond, M, Towse, A. Orphan drugs policies: A suitable case for treatment. Eur J Health Econ. 2014;15:335340.
25.Mpofu, S, Moots, R. A case of multiple sclerosis associated with rheumatoid arthritis and positive anticardiolipin antibodies. Ann Rheum Dis. 2003;62:376.
26.Dua, T, Garrido Cumbrera, M, Mathers, C, Saxena, S. WHO 2006. Neurological disorders: Public health challenges. Chapter 2: Global burden of neurological disorders estimates and projections. © World Health Organization 2006. http://www.who.int/mental_health/neurology/chapter_2_neuro_disorders_public_h_challenges.pdf (Accessed July 10, 2016).
27.Dickens, C, Creed, F. The burden of depression in patients with rheumatoid arthritis. Rheumatology (Oxford). 2001;40:13271330.
28.Hunter, DJ, Riordan, EA. The impact of arthritis on pain and quality of life: An Australian survey. Int J Rheum Dis. 2014;17:149155.
29.Sidovar, MF, Limone, BL, Coleman, CI. Mapping of Multiple Sclerosis Walking Scale (MSWS-12) to five-dimension EuroQol (EQ-5D) health outcomes: An independent validation in a randomized control cohort. Patient Relat Outcome Meas. 2016;7:1318.
30.Kemanetzoglou, E, Andreadou, E. CNS Demyelination with TNF-α blockers. Curr Neurol Neurosci Rep. 2017;17:36.
31.Heins, MJ, Korevaar, JC, Hopman, PE, et al. Health-related quality of life and health care use in cancer survivors compared with patients with chronic diseases. Cancer. 2016;122:962970.
32.Tordrup, D, Mossman, J, Kanavos, P. Responsiveness of the EQ-5D to clinical change: Is the patient experience adequately represented? Int J Technol Assess Health Care. 2014;30:1019.

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

  • Olina Efthymiadou (a1), Jean Mossman (a2) and Panos Kanavos (a3)

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