It destroys my sense of self -worth and renders me almost incapable of making simple choices.”Īnxiety can dramatically impact many aspects of a person’s life and needs to be addressed in order to improve quality of life for PWP, their family members, and care partners. It causes me to think in unproductive ways. When asked to share their experience, the family said: These included a family of three (father with Parkinson’s, mother care partner, and adult son) two patients, and a spouse. To provide perspective from the patient side, six members of the PD community attended.
This provided an opportunity for specialists from different disciplines to learn how each approached the clinical problem. The June, 2018 workshop participants comprised 16 scientists and clinicians with expertise in PD, including movement disorder neurologists, psychiatrists, psychologists, and PD researchers. 3Īs a result of the 2016 survey, the Parkinson’s Foundation organized a workshop focused on anxiety in PD in order to discuss gaps in knowledge for both research and care and propose plans for moving the field forward.
A subsequent stakeholder consensus meeting identified the top 10 management research priorities stress and anxiety ranked second after balance and falls. Using an iterative modified nominal group technique, 1000 individuals, including those with PD, caregivers, family and friends, and healthcare and social service professionals, developed a list of unmet research areas. The prominence of anxiety as an unmet need echoes findings from the Parkinson’s UK earlier priority-setting exercise. Of the 1026 responses received, 141 (13.7%) ranked anxiety as their top unmet need, and 434 (42.3%) ranked anxiety as one of their top three unmet needs.
Respondents were given 33 choices and were asked to rank their top 3 unmet needs. The survey was part of the Foundation’s Community Choice Research Award initiative, which aims to identify unmet needs within the PD community and address those needs through targeted workshops and research funding. 1, 2 In 2016, at the World Parkinson Congress in Portland, Oregon, the Parkinson’s Foundation surveyed Congress attendees with Parkinson’s disease (PD) and their care partners regarding their unmet needs. Anxiety occurs in at least one-third of all people with Parkinson’s disease (PWP) and is one of the main determinants of quality of life.
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