Assessment of Health-Related Quality of Life between People with Parkinson's Disease and Non-Parkinson's: Using Data Drawn from the '100 for Parkinson's' Smartphone-Based Prospective Study

Xiaojing Fan, Duolao Wang, Bruce Hellman, Mathieu F Janssen, Gerben Bakker, Rupert Coghlan, Amelia Hursey, Helen Matthews, Ian Whetstone, Xiaojing Fan, Duolao Wang, Bruce Hellman, Mathieu F Janssen, Gerben Bakker, Rupert Coghlan, Amelia Hursey, Helen Matthews, Ian Whetstone

Abstract

Background: This study aims to assess the specific difference of the health-related quality of life between people with Parkinson's and non-Parkinson's. Methods: A total of 1710 people were drawn from a prospective study with a smartphone-based survey named '100 for Parkinson's' to assess health-related quality of life. The EQ-5D-5L descriptive system and the EQ visual analogue scale were used to measure health-related quality of life and a linear mixed model was used to analyze the difference. Results: The mean difference of EQ-5D-5L index values between people with Parkinson's and non-Parkinson's was 0.15 (95%CI: 0.12, 0.18) at baseline; it changed to 0.17 (95%CI: 0.14, 0.20) at the end of study. The mean difference of EQ visual analogue scale scores between them increased from 10.18 (95%CI: 7.40, 12.96) to 12.19 (95%CI: 9.41, 14.97) from baseline to the end of study. Conclusion: Data can be captured from the participants' own smart devices and support the notion that health-related quality of life for people with Parkinson's is lower than non-Parkinson's. This analysis provides useful evidence for the EQ-5D instrument and is helpful for public health specialists and epidemiologists to assess the health needs of people with Parkinson's and indirectly improve their health status.

Keywords: EQ visual analogue scale; EQ-5D-5L; Parkinson’s disease; prospective study; smartphone.

Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Participants flow chart of 100 for Parkinson’s project.
Figure 2
Figure 2
Frequency of reported problems for participants by gender at baseline (n = 1654). * means significant difference (p < 0.05) between two groups.
Figure 3
Figure 3
Changes of EQ-5D-5L from baseline to end of study for people with Parkinson’s (n = 301). * means significant difference (p < 0.05) among different level of anxiety/depression.

References

    1. Nussbaum R.L., Ellis C.E. Alzheimer’s Disease and Parkinson’s Disease. N. Engl. J. Med. 2003;348:1356–1364. doi: 10.1056/NEJM2003ra020003.
    1. Lewitt P.A. Levodopa for the Treatment of Parkinson’s Disease. N. Engl. J. Med. 2008;359:2468–2476. doi: 10.1056/NEJMct0800326.
    1. Dorsey E.R., Constantinescu R., Thompson J.P., Biglan K.M., Holloway R.G., Kieburtz K., Marshall F.J., Ravina B.M., Schifitto G., Siderowf A. Projected Number of People with Parkinson Disease in the Most Populous Nations, 2005 through 2030. Neurology. 2007;68:384–386. doi: 10.1212/01.wnl.0000247740.47667.03.
    1. Duncan G.W., Khoo T.K., Coleman S.Y., Brayne C., Yarnall A.J., O’Brien J.T., Barker R.A., Burn D.J. The Incidence of Parkinson’s Disease in the North-East of England. Age Ageing. 2014;43:257–263. doi: 10.1093/ageing/aft091.
    1. Linder J., Stenlund H., Forsgren L. Incidence of Parkinson’s Disease and Parkinsonism in Northern Sweden: A Population-Based Study. Mov. Disord. 2010;25:341–348. doi: 10.1002/mds.22987.
    1. Alves G., Müller B., Herlofson K., Hogenesch I., Telstad W., Aarsland D., Tysnes O.B., Larsen J.P. Incidence of Parkinson’s Disease in Norway: The Norwegian Parkwest Study. J. Neurol. Neurosurg. Psychiatry. 2009;80:851. doi: 10.1136/jnnp.2008.168211.
    1. Fahn S. Description of Parkinson’s Disease as a Clinical Syndrome. Ann. N. Y. Acad. Sci. 2003;991:1–14. doi: 10.1111/j.1749-6632.2003.tb07458.x.
    1. Schrag A., Marjan J., Niall Q. What Contributes to Quality of Life in Patients with Parkinson’s Disease? J. Neurol. Neurosurg. Psychiatry. 2000;69:289. doi: 10.1136/jnnp.69.3.308.
    1. Skorvanek M., Martinez-Martin P., Kovacs N., Zezula I., Rodriguez-Violante M., Corvol J.C., Taba P., Seppi K., Levin O., Schrag A.E. Relationship between the Mds-Updrs and Quality of Life in Parkinson’s Disease. J. Neurol. Sci. 2015;353:87–91. doi: 10.1016/j.jns.2015.04.013.
    1. Chaudhuri K.R., Healy D.G., Schapira A.H. Non-Motor Symptoms of Parkinson’s Disease: Diagnosis and Management. Lancet Neurol. 2017;5:235–245. doi: 10.1016/S1474-4422(06)70373-8.
    1. Martinez-Martin P. What is quality of life and how do we measure it? Relevance to Parkinson’s disease and movement disorders. Mov. Disord. 2017;32:382–392. doi: 10.1002/mds.26885.
    1. Brazier J., Ratcliffe J., Saloman J., Tsuchiya A. Measuring and Valuing Health Benefits for Economic Evaluation. [(accessed on 10 November 2016)]; Available online:
    1. Brooks R. A new facility for the measurement of health-related quality of life. Health Policy. 1990;3:199–208.
    1. OFcom Facts and Figures. [(accessed on 3 July 2015)]; Available online:
    1. Druce K.L., McBeth J., van der Veer S.N., Selby D.A., Vidgen B., Georgatzis K., Hellman B., Lakshminarayana R., Chowdhury A., Schultz D.M., et al. Recruitment and Ongoing Engagement in a UK Smartphone Study Examining the Association Between Weather and Pain: Cohort Study. JMIR Mhealth Uhealth. 2017;5:e168. doi: 10.2196/mhealth.8162.
    1. Respiratory Institute Asthma Mobile Health Study. [(accessed on 15 September 2015)]; Available online:
    1. University of Rochester Medical Center Apple Highlights Parkinson’s App with URMC Ties. [(accessed on 9 March 2015)]; Available online: .
    1. Stanford Medicine My-heart Counts iPhone Application. [(accessed on 15 September 2015)]; Available online: .
    1. Mulhern B., O’Gorman H., Rotherham N., Brazier J. Comparing the measurement equivalence of EQ-5D-5L across different modes of administration. Health Qual. Life Outcomes. 2014;17:191. doi: 10.1186/s12955-015-0382-6.
    1. Bot B.M., Suver C., Neto E.C., Kellen M., Klein A., Bare C., Doerr M., Pratap A., Wilbanks J., Dorsey E.R., et al. The mPower study, Parkinson disease mobile data collected using ResearchKit. Sci. Data. 2016;3:160011. doi: 10.1038/sdata.2016.11.
    1. Von Elm E., Altman D.G., Egger M., Pocock S.J., Gøtzsche P.C., Vandenbroucke J.P., STROBE Initiative Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Statement: Guidelines for Reporting Observational Studies. BMJ. 2017;335:806–808. doi: 10.1136/.
    1. Herdman M., Gudex C., Lloyd A., Janssen M.F., Kind P., Parkin D., Bonsel G., Badia X. Development and Preliminary Testing of the New Five-Level Version of Eq-5d (Eq-5d-5l) Qual. Life Res. 2011;20:1727–1736. doi: 10.1007/s11136-011-9903-x.
    1. Van Hout B., Janssen M.F., Feng Y.S., Kohlmann T., Busschbach J., Golicki D., Lloyd A., Scalone L., Kind P., Pickard A.S. Interim Scoring for the Eq-5d-5l: Mapping the Eq-5d-5l to Eq-5d-3l Value Sets. Value Health. 2012;15:708–715. doi: 10.1016/j.jval.2012.02.008.
    1. McCaffrey N., Kaambwa B., Currow D.C., Ratcliffe J. Health-related quality of life measured using the EQ-5D-5L: South Australian population norms. Health Qual. Life Outcomes. 2016;14:133. doi: 10.1186/s12955-016-0537-0.
    1. Jecmenica-Lukic M.V., Pekmezovic T.D., Petrovic I.N., Dragasevic N.T., Kostić V.S. Factors associated with deterioration of health-related quality of life in multiple system atrophy: 1-year follow-up study. Acta Neurol. Belg. 2018;11:1–7. doi: 10.1007/s13760-018-0962-4.
    1. Wang D., Clayton T., A Bakhai A. In: Interaction Clinical Trials: A Practical Guide to Design, Analysis and Reporting. Wang D., Bakhai A., editors. Remedica; Chicago, IL, USA: 2006. pp. 305–316. ISBN-10 1901346722, ISBN-13 9781901346722.
    1. EQ-5D EQ-5D-5L|About. [(accessed on 18 April 2017)]; Available online:
    1. Parkin D., Rice N., Devlin N. Statistical analysis of EQ-5D profiles: Does the use of value sets bias inference? Med. Decis. Mak. 2010;5:556. doi: 10.1177/0272989X09357473.
    1. Golicki D., Niewada M., Buczek J., Karlinska A., Kobayashi A., Janssen M.F., Pickard A.S. Validity of EQ-5D-5L in stroke. Qual. Life Res. 2015;4:845–850. doi: 10.1007/s11136-014-0834-1.
    1. Garciagordillo M.A., Colladomateo D., Olivares P.R., Adsuar J.C. Application of Eq-5d-5l Questionnaire in Patients Suffering from Urinary Incontinence. Actas Urol. Esp. 2016;7:457–462.
    1. Hinz A., Kohlmann T., Stöbel-Richter Y., Zenger M., Brähler E. The quality of life questionnaire EQ-5D-5L: Psychometric properties and normative values for the general German population. Qual. Life Res. 2014;2:443–447. doi: 10.1007/s11136-013-0498-2.
    1. Nguyen L.H., Tran B.X., Hoang L.Q.N., Tran T.T., Latkin C.A. Quality of life profile of general Vietnamese population using EQ-5D-5L. Health Qual. Life Outcomes. 2017;15:199. doi: 10.1186/s12955-017-0771-0.
    1. Szende A., Janssen B., Cabases J. Population Norms for the EQ-5D. In: Szende A., Janssen B., Cabases J., editors. Self-Reported Population Health: An International Perspective Based on EQ-5D. Springer; Dordrecht, The Netherlands: 2014. p. 21.
    1. Lees A.J., Hardy J., Revesz T. Parkinson’s disease. Lancet. 2009;373:2055–2066. doi: 10.1016/S0140-6736(09)60492-X.
    1. Pimenta M., Moreira D., Nogueira T., Silva C., Pinto E.B., Valenca G.T., Almeida L.R.S. Anxiety Independently Contributes to Severity of Freezing of Gait in People with Parkinson’s Disease. J. Neuropsychiatry Clin. Neurosci. 2018;9:6. doi: 10.1176/appi.neuropsych.17090177.
    1. Dissanayaka N.N., Sellbach A., Silburn P.A., O’Sullivan J.D., Marsh R., Mellick G.D. Factors associated with depression in Parkinson’s disease. J. Affect Disord. 2011;132:82–88. doi: 10.1016/j.jad.2011.01.021.
    1. Sophie M., Ford B. Management of pain in Parkinson’s disease. CNS Drugs. 2012;11:937. doi: 10.1007/s40263-012-0005-2.
    1. Ford B. Pain in Parkinson’s disease. Mov. Disord. 2010;S1:S98–S103. doi: 10.1002/mds.22716.
    1. Feng Y., Devlin N., Herdman M. Assessing the health of the general population in England: How do the three- and five-level versions of EQ-5D compare? Health Qual. Life Outcomes. 2015;13:171. doi: 10.1186/s12955-015-0356-8.
    1. Golicki D., Niewada M. EQ-5D-5L Polish population norms. Arch. Med. Sci. 2017;1:191–200. doi: 10.5114/aoms.2015.52126.
    1. Collado M.D., García G.M.A., Olivares P.R., Adsuar J.C. Normative Values of Eq-5d-5l for Diabetes Patients from Spain. Nutr. Hosp. 2015;32:1595–1602.

Source: PubMed

3
Subscribe