Patient and physician perceptions of disease management in Parkinson’s disease: results from a US-based multicenter survey

Abstract

Background: Clinical care for patients with Parkinson’s disease (PD) is complex, and disconnect may exist between patient and physician perceptions of treatment, disease awareness, and impact on quality of life (QoL). Relatively few studies have analyzed patient and physician perspectives of disease management concurrently, and even fewer have compared responses between corresponding patients and their physicians. This study aimed to characterize these aspects and identify opportunities to improve alignment.

Methods: This cross-sectional study used an online survey and chart review. Participating physicians completed a profiling survey, followed by patient record forms (PRFs) for their next five patients with PD. Patients completed paper questionnaires. PRFs were matched with patient questionnaires, and patient and physician responses compared.

Results: Of 107 participating physicians, 70 completed 350 PRFs. Patients completed 71 questionnaires; 66 were matched to PRFs. From a physician perspective, there was alignment between the motor symptoms that were most bothersome for patients and those that were most discussed (physicians felt tremor was most bothersome for most patients [71%]; 77% of physicians included tremor among top three most discussed), but disconnect between the most bothersome and most discussed nonmotor symptoms (physicians felt fatigue was most bothersome for most patients [35%]; cognitive impairment was the most discussed nonmotor symptom, with 52% of physicians including it in top three most discussed). Patients and physicians reported moderate satisfaction with current PD medication. Patients considered form of delivery more important than did physicians. Physicians showed a strong level of awareness of PD’s impact on patient QoL, although validated QoL instruments were not widely used. Physicians were more confident than patients about patients’ awareness of support resources for patients with PD.

Conclusion: Nonmotor symptoms, form of medication delivery, and awareness of support services are areas where PD physician and patient alignment could be increased to improve outcomes.

Keywords:

• Parkinson’s disease
• survey
• disease awareness
• quality of life
• patients
• physicians

Acknowledgments

The authors thank the physicians, patients, and their caregivers who took part in the survey.

The authors would like to acknowledge the outstanding contribution of their late co-author Joseph D’Souza to this research, for his dedication to science, and for his efforts to help improve the lives of people with Parkinson’s disease.

Medical writing and editorial assistance was provided by Lauri Arnstein, MA, MBBS (Evidence Scientific Solutions, London, UK) and Nicole Meinel, PhD, CMPP (Evidence Scientific Solutions, London, UK), funded by UCB Pharma (Smyrna, GA, USA), and publication coordination was provided by Helen Ysak, PharmD (Publication and Data Dissemination Lead – Neurology, UCB Pharma, Smyrna, GA, USA). This survey was funded by UCB Pharma, Smyrna, GA, USA. UCB Pharma was responsible for the design and conduct of the survey, the collection, analysis, and interpretation of the data, and was involved in the preparation and review of the manuscript. The authors made the final decision to submit the manuscript for publication.

Ethics approval and informed consent

This research was compliant with the European Pharmaceutical Market Research Association Code of Conduct and the Health Insurance Portability and Accountability Act of 1996. Ethical approval was not required. Informed consent was obtained from all physicians at the start of the online survey, and from all patients on the paper questionnaire they completed.

Abbreviations

PD, Parkinson’s disease; PDQ-39, 39-item Parkinson’s Disease Questionnaire; PRF, patient record form; PRO-PD, Patient-Reported Outcome Tool for Parkinson’s Disease; PRO-APD, Patient-Reported Outcome Tool for Advanced Parkinson’s Disease; QoL, quality of life.

Author contributions

All authors were involved in designing the study and interpretation. Neal Hermanowicz is a physician who took part in this study. Angela McMean conducted the study and was involved in data analysis. All authors were involved in the decision to submit the article for publication, drafting or critically revising the manuscript and approved the final version for submission to this journal. Joseph D’Souza was unable to approve the final revised version which addressed peer reviewer comments; however, all of his co-authors approved the final revised version for publication and agree to be accountable for all aspects of the work.

Disclosure

Neal Hermanowicz was on the UCB Speakers’ Bureau and received honoraria in 2016. Neal Hermanowicz also reports personal fees from UCB Pharma, outside the submitted work. Michelle Castillo-Shell is a salaried employee of UCB Pharma and has received stock options from her employer. Angela McMean is a salaried employee of Ashfield Healthcare Communications Group Ltd. Jesse Fishman is a former employee of UCB Pharma and is a current employee of Janssen Pharmaceuticals. Jesse Fishman also reports personal fees from Johnson and Johnson and UCB Pharma, during the conduct of the study. Joseph D’Souza was an employee of UCB Pharma when the study was conducted and the manuscript developed. The authors report no other conflicts of interest in this work.