scholarly journals A Call to Action: Promoting Diversity, Equity, and Inclusion in Parkinson’s Research and Care

2021 ◽  
pp. 1-4
Author(s):  
Bernadette Siddiqi ◽  
Andrew Koemeter-Cox
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Health Equity ◽  
Research Participation ◽  
Call To Action ◽  
Research Results ◽  
Societal Challenges ◽  
Holistic Understanding ◽  
Equity And Inclusion ◽  
Incomplete Picture

The current base of knowledge around Parkinson’s disease has been assembled in partnership with a cohort of participants that does not resemble the diversity of people with the disease. This poor representation in research results in an incomplete picture of the disease and disparities in care. The Michael J. Fox Foundation has defined four major areas of action: 1) identifying barriers and solutions to research participation; 2) funding inclusive research with greater participant diversity; 3) building a clinician/researcher workforce committed to health equity; and 4) supporting a more holistic understanding of PD. While factors driving disparities, including broader societal challenges, are complex, it is imperative that the PD research, care, and patient communities move in a decisive and coordinated fashion to identify and implement strategies that advance treatments for everyone with PD and eliminate care inequities.

scholarly journals Hispanic Perspectives on Parkinson’s Disease Care and Research Participation

2021 ◽  
pp. 1-11
Author(s):  
Lisa Damron ◽  
Irene Litvan ◽  
Ece Bayram ◽  
Sarah Berk ◽  
Bernadette Siddiqi ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Native Language ◽  
Research Participation ◽  
Ongoing Research ◽  
Research Recruitment ◽  
Research Opportunities ◽  
Research Engagement ◽  
Wide Range ◽  
Tertiary Center

Background: Hispanics are under-represented in Parkinson’s disease (PD) research despite the importance of diversity for results to apply to a wide range of patients. Objective: To investigate the perspective of Hispanic persons with Parkinson disease (PWP) regarding awareness, interest, and barriers to participation in research. Methods: We developed and administered a survey and qualitative interview in English and Spanish. For the survey, 62 Hispanic and 38 non-Hispanic PWP linked to a tertiary center were recruited in Arizona. For interviews, 20 Hispanic PWP, 20 caregivers, and six physicians providing service to Hispanic PWP in the community were recruited in California. Survey responses of Hispanic and non-Hispanic PWP were compared. Major survey themes were identified by applying grounded theory and open coding. Results: The survey found roughly half (Q1 54%, Q2 55%) of Hispanic PWP linked to a tertiary center knew about research; there was unawareness among community Hispanic PWP. Most preferred having physician recommendations for research participation and were willing to participate. Hispanics preferred teams who speak their native language and include family. Research engagement, PD knowledge, role of family, living with PD, PD care, pre-diagnosis/diagnosis emerged as themes from the interview. Conclusion: Barriers exist for participation of Hispanic PWP in research, primarily lack of awareness of PD research opportunities. Educating physicians of the need to encourage research participation of Hispanic PWP can address this. Physicians need to be aware of ongoing research and should not assume PWP disinterest. Including family members and providing research opportunities in their native language can increase research recruitment.

Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson’s Disease

2021 ◽  
pp. 1-10
Author(s):  
Franziska Thieken ◽  
Lars Timmermann ◽  
Keywan Sohrabi ◽  
Christiane Woopen ◽  
Björn Schmitz-Luhn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Assessment Tool ◽  
Well Being ◽  
Social Resilience ◽  
Longitudinal Assessment ◽  
Parkinsonian Syndromes ◽  
Holistic Understanding

Background: Parkinsonian syndromes are heterogeneous chronic neurodegenerative disorders associated with both motor and non-motor symptoms. The symptoms have major psychosocial effects on the quality of life of patients and can be a burden for caregivers. So far, several questionnaires have been developed to assess quality of life in Parkinsonism, but none of these include the positive sides on well-being such as personal and social resilience factors. Objective: The aim of this study is to develop a digital framework for a longitudinal assessment of quality of life during the progression of Parkinson’s disease. Methods: The CHAPO model (Challenges and Potentials) has been established in a vast study by Wagner et al. to assess the quality of life of older people. This model includes environmental and individual factors, life chances, and life results, such as individual life evaluation, from a subjective as well as an objective point of view. Therefore, it has been adapted in several development steps to include the specific aspects that affect quality of life in Parkinsonian syndromes. The development process included 6 steps: definition, refinement, operationalization, piloting/debriefing, adjustment, and integration. Results: The development of the CHAPO-PD model has been completed and it represents the first main result of this study. Conclusion: By taking a holistic understanding of quality of life into account, we expect to detect previously unrecognized factors, which correlate to the subjective well-being of Parkinson’s disease patients, and aim to use these findings to improve the health care structures for patients with Parkinson’s disease and related disorders.

scholarly journals Disclosure of research results in genetic studies of Parkinson's disease caused by LRRK2 mutations

2015 ◽  
Vol 30 (7) ◽  
pp. 904-908 ◽  
Author(s):  
Claustre Pont-Sunyer ◽  
Susan Bressman ◽  
Deborah Raymond ◽  
Amanda Glickman ◽  
Eduardo Tolosa ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Genetic Studies ◽  
Research Results

scholarly journals Reaching Those Most in Need – A Call to Action for Advanced Parkinson’s Disease

2016 ◽  
Vol 11 (1) ◽  
pp. 20 ◽  
Author(s):  
Shashank Agarwal ◽  
Jori E Fleisher ◽  
◽  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Continuity Of Care ◽  
Research Subjects ◽  
Research Attention ◽  
Advanced Parkinson’S Disease ◽  
Call To Action ◽  
Lost To Follow Up

Much of the clinical and research attention for Parkinson’s disease (PD) has focused on mild to moderate stages. As the disease advances, it can become difficult for patients to attend clinical visits. These patients are often lost to follow-up, and consequently, vanish from the pool of potential research subjects who could inform our management of this understudied population. We aim to increase awareness about this population and potential interventions to improve continuity of care and foster research in advanced PD.

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