Barriers to Mental Healthcare Utilization in Parkinson's Disease

This study has been completed.
Sponsor:
Collaborator:
Information provided by (Responsible Party):
Rutgers, The State University of New Jersey
ClinicalTrials.gov Identifier:
NCT01167608
First received: July 20, 2010
Last updated: June 3, 2014
Last verified: March 2014
  Purpose

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.


Condition Intervention
Parkinson's Disease
Depression
Anxiety
Other: No Intervention. This is a cross-sectional survey study.

Study Type: Observational
Study Design: Observational Model: Ecologic or Community
Time Perspective: Cross-Sectional
Official Title: Barriers to Mental Healthcare Utilization in Parkinson's Disease

Resource links provided by NLM:


Further study details as provided by Rutgers, The State University of New Jersey:

Primary Outcome Measures:
  • Most Commonly Reported Past Barrier to Mental Health Services: "Anyone in my Situation Would be Struggling" [ Time Frame: Lifetime ] [ Designated as safety issue: No ]

    The purpose of this study was to assess the 3 most commonly reported past and future barriers to mental health services. This outcome represents the most common past barrier to mental health services reported by survey respondents. The outcome reported is the percentage of all respondents surveyed who endorsed this particular past barrier. This barrier can best be described as low mental health literacy.

    NOTE: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.


  • 2nd Most Commonly Reported Past Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues" [ Time Frame: Lifetime ] [ Designated as safety issue: No ]

    The purpose of this study was to assess the 3 most commonly reported past and future barriers to mental health services. This outcome represents the 2nd most common past barrier to mental health services reported by survey respondents. The outcome reported is the percentage of all respondents surveyed who endorsed this particular past barrier. This barrier can best be described as limited knowledge of PD amongst treatment providers.

    NOTE: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.


  • 3rd Most Commonly Reported Past Barrier to Mental Health Services: "Out of Pocket Cost Was Too High" [ Time Frame: Lifetime ] [ Designated as safety issue: No ]

    The purpose of this study was to assess the 3 most commonly reported past and future barriers to mental health services. This outcome represents the 3rd most common past barrier to mental health services reported by survey respondents. The outcome reported is the percentage of all respondents surveyed who endorsed this particular past barrier. This barrier can best be described as limited access.

    NOTE: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.


  • Most Commonly Reported Future Barrier to Mental Health Services: "Out of Pocket Cost Was Too High" [ Time Frame: Lifetime ] [ Designated as safety issue: No ]

    The purpose of this study was to assess the 3 most commonly reported past and future barriers to mental health services. This outcome represents the most common future barrier to mental health service reported by respondents to the survey described in the Methods section. Outcome is reported as the percentage of all respondents surveyed who endorsed this particular future barrier. This barrier can best be described as limited access.

    NOTE: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.


  • 2nd Most Commonly Reported Future Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues" [ Time Frame: Lifetime ] [ Designated as safety issue: No ]

    The purpose of this study was to assess the 3 most commonly reported past and future barriers to mental health services. This outcome represents the 2nd most commonly reported future barrier to mental health services reported by those who responded to the survey described in the Methods section. Outcome is reported as the percentage of all respondents surveyed who endorsed this particular future barrier. This barrier can best be described as limited knowledge of PD amongst treatment providers.

    NOTE: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.


  • 3rd Most Commonly Reported Future Barrier to Mental Health Services: "Services Are Not Available in my Community" [ Time Frame: Lifetime ] [ Designated as safety issue: No ]

    The purpose of this study was to assess the 3 most commonly reported past and future barriers to mental health services. This outcome represents the 3rd most common future barrier to mental health service reported by respondents to the survey described in the Methods section. Outcome is reported as the percentage of all respondents surveyed who endorsed this particular future barrier. This barrier can best be described as limited access.

    NOTE: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.



Enrollment: 883
Study Start Date: June 2010
Study Completion Date: March 2013
Primary Completion Date: March 2013 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
People with Parkinson's disease
Individuals diagnosed with Parkinson's disease
Other: No Intervention. This is a cross-sectional survey study.
No intervention.

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

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Probability Sample
Study Population

People with Parkinson's disease.

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.

  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01167608

Locations
United States, New Jersey
Rutgers-Robert Wood Johnson Medical School
Piscataway, New Jersey, United States, 08854
Sponsors and Collaborators
Rutgers, The State University of New Jersey
Investigators
Principal Investigator: Roseanne D Dobkin, PhD Rutgers, The State University of New Jersey
  More Information

Additional Information:
Publications:
Responsible Party: Rutgers, The State University of New Jersey
ClinicalTrials.gov Identifier: NCT01167608     History of Changes
Other Study ID Numbers: 0220100120, 1K23NS052155-01A2
Study First Received: July 20, 2010
Results First Received: March 10, 2014
Last Updated: June 3, 2014
Health Authority: United States: Institutional Review Board
United States: Federal Government

Keywords provided by Rutgers, The State University of New Jersey:
Parkinson's disease
Depression
Anxiety
Treatment

Additional relevant MeSH terms:
Depression
Depressive Disorder
Parkinson Disease
Basal Ganglia Diseases
Behavioral Symptoms
Brain Diseases
Central Nervous System Diseases
Mental Disorders
Mood Disorders
Movement Disorders
Nervous System Diseases
Neurodegenerative Diseases
Parkinsonian Disorders

ClinicalTrials.gov processed this record on October 20, 2014