Anxiety, Depression, Parkinson's Disease
Conditions
Keywords
Parkinson's disease, Depression, Anxiety, Treatment
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.
Interventions
OTHERNo Intervention. This is a cross-sectional survey study.
No intervention.
Sponsors
National Institute of Neurological Disorders and Stroke (NINDS)
Rutgers, The State University of New Jersey
Study design
Observational model
ECOLOGIC_OR_COMMUNITY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Most Commonly Reported Past Barrier to Mental Health Services: Anyone in my Situation Would be Struggling | Baseline | 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. |
| 2nd Most Commonly Reported Past Barrier to Mental Health Services: Doctors Are Not Sensitive Enough to PD-related Issues | Baseline | 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. |
| 3rd Most Commonly Reported Past Barrier to Mental Health Services: Out of Pocket Cost Was Too High | Baseline | 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. |
| Most Commonly Reported Future Barrier to Mental Health Services: Out of Pocket Cost Was Too High | Baseline | 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. |
| 2nd Most Commonly Reported Future Barrier to Mental Health Services: Doctors Are Not Sensitive Enough to PD-related Issues | Baseline | 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. |
| 3rd Most Commonly Reported Future Barrier to Mental Health Services: Services Are Not Available in my Community | Baseline | 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. |
Countries
United States
Participant flow
Recruitment details
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.
Participants by arm
| Arm | Count |
|---|---|
| People With Parkinson's Disease No Intervention. This is a cross-sectional survey study. : No intervention. | 883 |
| Total | 883 |
Baseline characteristics
| Characteristic | People With Parkinson's Disease |
|---|---|
| Age, Continuous | 63.83 years STANDARD_DEVIATION 10.45 |
| Age, Customized <=18 years | 0 participants |
| Age, Customized >=65 years | 347 participants |
| Age, Customized Between 18 and 65 years | 408 participants |
| Age, Customized Not Available | 128 participants |
| Region of Enrollment United States | 883 participants |
| Sex/Gender, Customized Female | 375 participants |
| Sex/Gender, Customized Male | 380 participants |
| Sex/Gender, Customized Not Available | 128 participants |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | — / — |
| other Total, other adverse events | 0 / 769 |
| serious Total, serious adverse events | 0 / 769 |
Outcome results
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.
Time frame: Baseline
Population: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| People With Parkinson's Disease | 2nd Most Commonly Reported Future Barrier to Mental Health Services: Doctors Are Not Sensitive Enough to PD-related Issues | 58.7 percentage of total respondents |
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.
Time frame: Baseline
Population: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| People With Parkinson's Disease | 2nd Most Commonly Reported Past Barrier to Mental Health Services: Doctors Are Not Sensitive Enough to PD-related Issues | 54.8 percentage of total respondents |
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.
Time frame: Baseline
Population: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| People With Parkinson's Disease | 3rd Most Commonly Reported Future Barrier to Mental Health Services: Services Are Not Available in my Community | 52.0 percentage of total respondents |
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.
Time frame: Baseline
Population: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| People With Parkinson's Disease | 3rd Most Commonly Reported Past Barrier to Mental Health Services: Out of Pocket Cost Was Too High | 40.8 percentage of total respondents |
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.
Time frame: Baseline
Population: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| People With Parkinson's Disease | Most Commonly Reported Future Barrier to Mental Health Services: Out of Pocket Cost Was Too High | 64.0 percentage of total respondents |
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.
Time frame: Baseline
Population: This is an anonymous, cross-sectional survey study. Not all participants responded to every item, so sample size varies between outcome measures.
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| People With Parkinson's Disease | Most Commonly Reported Past Barrier to Mental Health Services: Anyone in my Situation Would be Struggling | 74.8 percentage of total respondents |