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CC BY-NC-ND 4.0 · Methods Inf Med 2017; 56(S 01): e123-e128
DOI: 10.3414/ME16-02-0040
Focus Theme – Original Articles
Schattauer GmbH

Patient-driven N-of-1 in Parkinson’s Disease

Lessons Learned from a Placebo-controlled Study of the Effect of Nicotine on Dyskinesia
Sara Riggare
1   Health Informatics Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
,
Kenton T. Unruh
2   School of Medicine, University of Washington, Seattle, WA, USA
,
Jasmine Sturr
1   Health Informatics Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
,
Josefa Domingos
3   Clinical Pharmacological Unit, Instituto de Medicina Molecular, Faculty of Medicine, University of Lisbon, Lisbon, Portugal
,
Jonathan A. Stamford
4   Parkinson’s Movement, The Cure Parkinson’s Trust, London, UK
,
Per Svenningsson
5   Department of Clinical Neuroscience, Center for Molecular Medicine, Karolinska Institutet, Stockholm, Sweden
,
Maria Hägglund
1   Health Informatics Centre, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden
› Author Affiliations Funding: This work was financially supported by FORTE, the Swedish Research Council for Health, Working Life and Welfare [grant number 2014-4238]; and Vinnova, the Swedish Governmental Agency for Innovation Systems.
Further Information

Publication History

received: 17 November 2016

accepted: 08 August 2017

Publication Date:
31 January 2018 (online)

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Summary

Background: New insights and knowledge in biomedical science often come from observation and experimentation. Methods traditionally used include self-experimentation, case reports, randomised controlled trials, and N-of-1 studies. Technological advances have lead to an increasing number of individuals and patients engaging in self-tracking. We use the term patient-driven N-of-1 for self-tracking performed with the explicit intention to disseminate the results by academic publishing.

Objectives: The aim of the study was to: 1) explore the potential role for patient-driven N-of-1 studies as a tool for improving self-management in Parkinson’s disease (PD) using the example of managing levodopa-induced dyskinesia (LID) with nicotine, and 2) based on this example; identify some specific challenges of patient-driven N-of-1 studies.

Methods: We used a placebo controlled patient-driven N-of-1 study with nicotine administered via e-cigarette to treat LID. The first author initiated and conducted the experiment on herself and noted her observations. The evaluations of the potential of N-of-1 for improving self-management of PD as well as the effects of nicotine on dyskinesia were based on the perception of the subject. During the planning and undertaking of the experiment, notes were made to identify challenges specific to patient-driven N-of-1 studies.

Results: The subject was able to distinguish a decrease of her LID from nicotine but no effect from placebo. The main challenges of patient-driven N-of-1 studies were identified to be associated with planning of the study, recruiting a suitable research team, making sure the data collection is optimal, analysis of data, and publication of results.

Conclusions: Our study indicates that nicotine administered via e-cigarette may have an effect on levodopa-induced dyskinesia in individual patients with PD. The main contribution is however highlighting the work done by patients on a daily basis for understanding their conditions and conducting self-tracking experiments. More work is needed to further develop methods around patient-driven N-of-1 studies for PD.

Keywords

Parkinson’s disease - N-of-1 - levodopa induced dyskinesia - patient-driven - Quantified Self
 

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