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Diagnosing Parkinson’s Disease: The Patient Perspective

In Parkinson’s disease (PD), quality of life research has focused on medical therapeutics and management of physical symptoms. Physical mobility, sleep, energy, difficulty with activities of daily living and pain are important contributors to quality of life.1 Emotional reactions and disease related social isolation also contribute to the patient experience of PD.1 Little is known, however, about how patients deal with a new diagnosis of PD. Haines et al explored the time at which patients with PD reveal their diagnosis to others.2 Ninety percent of patients disclosed their diagnosis to family within one month. However, 25% of patients waited longer than one year before disclosing the diagnosis of PD to coworkers or employers. A decreased likelihood of disclosure within the first year was associated with being male, younger and employed.2 The life context of the patient at the time of diagnosis is also likely to influence disclosure. Understanding how patients cope with their disease from the outset is fundamental to fostering a supportive patient-physician relationship. We sought to determine whether there is a common initial response amongst patients at the time of diagnosis of PD. A descriptive cross-sectional study of patients with a diagnosis of PD was undertaken in Southwestern Ontario, Canada. Seventy-nine patients with PD voluntarily participated in this study (ethics approval obtained). A short questionnaire was distributed to all participants asking: