Corticobasal Degeneration, Dementia With Lewy Bodies, MSA - Multiple System Atrophy, Olivopontocerebellar Atrophies, Parkinsonism, Parkinson's Disease, Pick Disease, Progressive Supranuclear Palsy, Shy-Drager Syndrome
Conditions
Keywords
Parkinson's Disease, PD, Complementary and Alternative, CAM
Brief summary
We are trying to identify factors associated with improved quality of life and fewer PD symptoms. We are attempting to identify practices, beliefs, and therapies used by individuals who report excellent quality of life, few PD symptoms, and reduced rates of progression. After agreeing to participate, we will ask participants to fill our questionnaires about their experience with PD, their health in general, along with their food intake every six months for five years.
Detailed description
This is a prospective, observational study designed to describe disease progression, symptom change, quality of life, diet and lifestyle habits among patients with Parkinson's disease (PD). This study will identify and describe those individuals with the highest quality of life and least amount of disease activity, in order to describe medication, diet, and lifestyle patterns associated with a lack of PD disease progression and high quality of life. Participants will be asked to complete online surveys every six months for five years. The time requirement is about an hour to an hour and a half every six months. Participants do not need to answer questions if they do not feel comfortable answering. At each six month time point we will send participants an email with the link to the CAM Care in PD survey, a questionnaire about health and wellbeing (completed in REDCap). After participants have completed this survey we will send participants a link to the second survey, about dietary intake (completed on ASA24.gov). Because there is a designated window of time during which surveys must be completed, participants may receive a gentle reminder from us if time is running out. This study is not designed to provide care. Participants are encouraged to consult with any providers you wish. Participants will not directly benefit from the study, but information gathered during the course of this study may help us begin to assess the longer-term effects of complementary and integrative care on health, disease progression and quality of life in PD patients.
Interventions
None listed
Sponsors
Bastyr University
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
19 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Parkinson's disease (PD) * Parkinsonism * Parkinson-plus syndromes (e.g. Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal degeneration (CBGD), Dementia with Lewy bodies) * Must have online access, an email address, basic computer literacy * Must be willing to complete online surveys every 6 months for 5 years
Exclusion criteria
* Inability to read/write English * Inability or unwillingness to complete surveys every six (6) months (\ 90 min)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| CAM Care for PD survey | 5 years | This survey has been developed to identify the complementary and alternative therapies most commonly used by individuals with PD. Results will be reported with descriptive statistics. |
| PROMIS: Global Health | 5 years | This outcome measure will be used to assess general health and well-being in the cohort. |
| Patient-Reported Outcomes in PD (PRO-PD) | 5 years | This outcome measure is a series of 33 slider bars, developed for this study, to evaluate the individual's perception of symptom severity. The cumulative score for all 33 listed symptoms will be reported as the PRO-PD score. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Qualitative | 5 years | Participants will be given 'free space' to provide additional information they consider relevant. |
Countries
United States
Contacts
Primary ContactResearch Assistant
Outcome results
None listed