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| ID | Type | Description | Link |
|---|---|---|---|
| 1K23NS052155-01A2 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Institute of Neurological Disorders and Stroke (NINDS) | NIH |
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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| People with Parkinson's disease | Individuals diagnosed with Parkinson's disease |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| No Intervention. This is a cross-sectional survey study. | Other | No intervention. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Most Commonly Reported Past Barrier to Mental Health Services: "Anyone in my Situation Would be Struggling" | 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. | Baseline |
| 2nd Most Commonly Reported Past Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues" | 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. | Baseline |
| 3rd Most Commonly Reported Past Barrier to Mental Health Services: "Out of Pocket Cost Was Too High" | 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. | Baseline |
| Most Commonly Reported Future Barrier to Mental Health Services: "Out of Pocket Cost Was Too High" | 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. |
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Inclusion Criteria:
Exclusion Criteria:
We are looking for responses from those who have, as well as those who have not, had mental health treatment in the past.
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People with Parkinson's disease.
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| Name | Affiliation | Role |
|---|---|---|
| Roseanne D Dobkin, PhD | Rutgers, The State University of New Jersey | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Rutgers-Robert Wood Johnson Medical School | Piscataway | New Jersey | 08854 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 23589410 | Result | 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. |
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People with Parkinson's disease throughout the United States (US) were recruited from several sources (i.e., support groups affiliated with the American Parkinson's disease Association; internet sites such as the Michael J. Fox Foundation Fox Trial Finder Wedsite). Recruitment took place between June of 2010 and February of 2012.
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| ID | Title | Description |
|---|---|---|
| FG000 | People With Parkinson's Disease | No Intervention. This is a cross-sectional survey study. : No intervention. |
| Title | Milestones | Reasons Not Completed | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
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| ID | Title | Description |
|---|---|---|
| BG000 | People With Parkinson's Disease | No Intervention. This is a cross-sectional survey study. : No intervention. |
| Units | Counts |
|---|---|
| Participants |
|
| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Customized | Number |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | Most Commonly Reported Past Barrier to Mental Health Services: "Anyone in my Situation Would be Struggling" | 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. | This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures. | Posted | Number | percentage of total respondents | Baseline |
|
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | People With Parkinson's Disease | No Intervention. This is a cross-sectional survey study. : No intervention. |
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Self-report biases (social desirability or recall); idiopathic PD could not be confirmed given the anonymous nature of study participation; results may not generalize to all people with PD; participants were self-selected (non-random sample)
| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Dr. Roseanne Dobkin, Associate Professor of Psychiatry | Rutgers-Robert Wood Johnson Medical School | 732-235-4051 | dobkinro@rutgers.edu |
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| ID | Term |
|---|---|
| D010300 | Parkinson Disease |
| D003863 | Depression |
| D001008 | Anxiety Disorders |
| ID | Term |
|---|---|
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
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| Baseline |
| 2nd Most Commonly Reported Future Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues" | 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. | Baseline |
| 3rd Most Commonly Reported Future Barrier to Mental Health Services: "Services Are Not Available in my Community" | 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. | Baseline |
| participants |
|
| Age, Continuous | Mean | Standard Deviation | years |
|
| Sex/Gender, Customized | Number | participants |
|
| Region of Enrollment | Number | participants |
|
|
|
| Primary | 2nd Most Commonly Reported Past Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues" | 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. | This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures. | Posted | Number | percentage of total respondents | Baseline |
|
|
|
| Primary | 3rd Most Commonly Reported Past Barrier to Mental Health Services: "Out of Pocket Cost Was Too High" | 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. | This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures. | Posted | Number | percentage of total respondents | Baseline |
|
|
|
| Primary | Most Commonly Reported Future Barrier to Mental Health Services: "Out of Pocket Cost Was Too High" | 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. | This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures. | Posted | Number | percentage of total respondents | Baseline |
|
|
|
| Primary | 2nd Most Commonly Reported Future Barrier to Mental Health Services: "Doctors Are Not Sensitive Enough to PD-related Issues" | 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. | This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures. | Posted | Number | percentage of total respondents | Baseline |
|
|
|
| Primary | 3rd Most Commonly Reported Future Barrier to Mental Health Services: "Services Are Not Available in my Community" | 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. | This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures. | Posted | Number | percentage of total respondents | Baseline |
|
|
|
| 0 |
| 769 |
| 0 |
| 769 |
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| D009422 | Nervous System Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |
| D001526 | Behavioral Symptoms |
| D001519 | Behavior |
| D001523 | Mental Disorders |