A Patient-Based Needs Assessment for Living Well with Parkinson Disease: Implementation via Nominal Group Technique

Abstract

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.

Potenzialanalyse zur physiotherapeutischen Laufbandtherapie bei Morbus Parkinson

“…Klienten wünschen sich Hilfe und Verbesserungen im Umgang mit der Erkrankung bei sozialen Aspekten des täglichen Lebens und in persönlichen Beziehungen, aber auch bei finanziellen, juristischen und bürokratischen Angelegenheiten und im Umgang mit den körperlichen Symptomen [5]. Von einer Behandlung der körperlichen Symptome erwarten Klienten Verbesserungen im Gehen und in der Bewegungsgeschwindigkeit sowie eine Reduktion der Müdigkeit und Steifheit [7].…”

“…Die Inzidenz liegt bei jährlich 160 Neuerkrankungen pro 100.000 Einwohnern über 65 Jahren [10]. Bei gehäuftem Auftreten der Erkrankung im Alter und bei einer steigenden Anzahl von älteren Menschen wird für die nähere Zukunft eine Verdopplung der Prävalenzrate prognostiziert [5]. Dieser Trend wurde bereits in den letzten Jahren sichtbar.…”

Impact of limiting visual input on gait: Individuals with Parkinson disease, age-matched controls, and healthy young participants

“…Impaired gait in PD can lead to falls and limit an individual’s ability to carry out daily tasks, leading to a loss of independence (Morris, Iansek, Matyas, & Summers, 1994) and decreased quality of life (Earhart, 2009; Kleiner-Fisman, Gryfe, & Naglie, 2013). As compared to healthy individuals of the same age, altered gait has been repeatedly reported in individuals with PD who often show reduced stride length, reduced gait velocity, and smaller step amplitude (Earhart & Williams, 2012; Vitorio et al, 2012).…”

Clinical Parameters and Tools for Home-Based Assessment of Parkinson’s Disease: Results from a Delphi study

“…Moreover, as medical care models become more patient-centric, patients' active participation is essential to meet their needs and expectations [4]. It is conceivable that an adequate feedback provided to the user from such a home-based evaluation system may increase self-awareness, and, consequently, self-engagement with positive effects on disease management, and health-related quality of life [5].…”