Background. Parkinson’s disease (PD) is a neurodegenerative condition with complex subtleties, making it challenging for physicians to fully inform their patients. Given that approximately 50% of Americans access the Internet for health information, the development of a multimedia, web-based application emphasizing targeted needs of people with Parkinson’s disease (PwP) has the potential to change patient’s lives. Objectives. To determine what information PwP perceive could enhance their quality of life. Methods. Group sessions utilizing nominal group technique (NGT) were conducted. Participants were asked “what information do you want to know about that would help you live well with PD?” Silent generation of ideas preceded discussion followed by anonymous ranking of items. A “summary score” (sum of rank × frequency) was calculated. Results. 36 individual items were collapsed into 9 categories. Coping with emotions, changing relationships, and social implications of PD were ranked as most important. Financial supports and skills for self-advocacy were also highly ranked. Conclusions. Qualitative research methodology was utilized to determine the unmet needs of PwP. Results of this survey will inform the development of a patient-oriented, online resource, the goal will be to provide information and strategies to improve symptom management, reduce disability and address all relevant concerns important to those affected by PD. 1. Introduction The incidence of Parkinson’s disease (PD) increases with advancing age, and incidence exceeds 1% after age 65, and 3% after age 80 [1]. The prevalence of PD in those over 80 is projected to double over the next 30 years (from 11.6% to 23.6%) as life expectancy in the elderly increases. In 1998, an estimate of annual PD-related costs in Canada exceeded $560 million, with 70% of these costs related to long-term disability [2]. As with prevalence, the socioeconomic impact of PD is projected to increase dramatically; in Canada, health cost inflation and an aging population are likely to result in costs of almost $1 billion annually in the coming decades. Costs related to lost income for both people living with PD (PwP) and caregivers, and intangible costs associated with emotional anguish, are likely also large [3–7]. The progressive nature of PD symptoms results in profound reduction in quality of life that in some cases can be rated worse than death (based on commonly used health utility measures [8]). Evidence, knowledge, and strategies to delay functional decline in PD do exist. A recent study showed that
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