Clinical trial NCT01167608: Barriers to Mental Healthcare Utilization in Parkinson's Disease
Official title: Barriers to Mental Healthcare Utilization in Parkinson's Disease
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Parkinson's Disease
Depression
Anxiety
Keywords: Parkinson's disease
Depression
Anxiety
Treatment
Lead sponsor: Rutgers, The State University of New Jersey
Sponsor class: OTHER
Collaborators: name: National Institute of Neurological Disorders and Stroke (NINDS)
First posted: 2010-07-22
Enrollment: 883
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: ECOLOGIC_OR_COMMUNITY
Time perspective: CROSS_SECTIONAL
Sampling method: PROBABILITY_SAMPLE
Study population: People with Parkinson's disease.

Brief summary: Parkinson's disease (PD) is the second most common neurodegenerative disorder in the elderly. In most people, the illness is complicated by co-occurring psychiatric problems such as depression and anxiety. These non-motor concerns negatively affect the course and management of the disease, often leading to poor outcomes for both patients and their families. Despite these deleterious consequences, psychiatric symptoms in PD are both underreported by patients as well as under-recognized and under-treated by health care providers.

The primary purpose of this study is to identify and describe barriers to mental healthcare utilization for people with Parkinson's disease. Secondary objectives include the assessment of attitudes and preferences regarding the need for mental health services in the PD community and the acceptability of telehealth interventions as a method for improving access and quality of care. In order to accomplish these aims, participants will be asked to fill out an anonymous survey which will take about 15-30 minutes to complete. To best accommodate PD patients with varying levels of disability, participants will have the option to complete the survey online, on paper, or over the phone. The information obtained from this study will be used to support future treatment development efforts (i.e., phone and internet based interventions, community based trainings with local providers) intended to improve access and quality of mental health care for people with PD. To the best of the investigators knowledge, this is the first study to systematically examine barriers to mental healthcare utilization in PD in a national sample.

Detailed description: The survey may be completed online at https://www.surveymonkey.com/s/improvecare4pd. Potential participants may also call Dr. Dobkin at 732-235-4051 to complete the survey over the phone or to request a paper copy to mailed out.

Eligibility criteria: Inclusion Criteria:

* Diagnosis of Parkinson's disease
* At least 18 years of age

Exclusion Criteria:

* Less than 18 years of age

We are looking for responses from those who have, as well as those who have not, had mental health treatment in the past.

Primary outcomes:
measure: Most Commonly Reported Past Barrier to Mental Health Services: "Anyone in my Situation Would be Struggling"
timeFrame: Baseline
measure: 2nd Most Commonly Reported Past Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues"
timeFrame: Baseline
measure: 3rd Most Commonly Reported Past Barrier to Mental Health Services: "Out of Pocket Cost Was Too High"
timeFrame: Baseline
measure: Most Commonly Reported Future Barrier to Mental Health Services: "Out of Pocket Cost Was Too High"
timeFrame: Baseline
measure: 2nd Most Commonly Reported Future Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues"
timeFrame: Baseline
measure: 3rd Most Commonly Reported Future Barrier to Mental Health Services: "Services Are Not Available in my Community"
timeFrame: Baseline
Secondary outcomes:
Other outcomes:
Locations:
city: Piscataway
country: United States
facility: Rutgers-Robert Wood Johnson Medical School
state: New Jersey
Study officials:
affiliation: Rutgers, The State University of New Jersey
name: Roseanne D Dobkin, PhD
role: PRINCIPAL_INVESTIGATOR
References:
citation: Dobkin RD, Rubino JT, Friedman J, Allen LA, Gara MA, Menza M. Barriers to mental health care utilization in Parkinson's disease. J Geriatr Psychiatry Neurol. 2013 Jun;26(2):105-16. doi: 10.1177/0891988713481269. Epub 2013 Apr 15.