General Introduction 13 1 gender related features is still far from being fully elucidated.35 Furthermore, PD has a long duration, spanning up to decades for affects patients and its management requires a multidisciplinary approach that includes complex pharmacotherapy, neurosurgical procedures, and various non-pharmacological interventions.36 The challenges and consequences of the progression and long-term treatment of PD can disrupt existing gender roles and norms in family and community settings. Gender roles and norms affect attitudes, opportunities, experiences and behaviours of individuals, with important health consequences throughout the life course.37 In this thesis, I investigate the impact of gender in the context of PD with the broader intention to extrapolate insights for the operationalisation of gender in medical research at large. Parkinson’s Disease Parkinson’s Disease is a chronic and progressive neurological movement disorder that is characterized by impairment of movement, cognitive functioning and behavioural and emotional regulation.38 The disease is named after dr. James Parkinson, who first described the symptoms and signs in 1817.39 The main underlying pathological factor is a loss of dopamine producing neurons in the midbrain (substantia nigra), which leads to a range of motor symptoms such as tremor, rigidity, bradykinesia (slowness of movement) and changes in axial mobility (gait, balance, posture). In addition to these clearly observable motor symptoms, PD can also cause a wide range of non-motor symptoms such as anxiety, depression, sleep disturbances, pain, autonomic dysfunction, and cognitive impairments. Since there is currently no cure or even a disease-modifying intervention for PD, and the treatment of PD is largely focused on the management of symptoms and the improvement of quality of life for people living with the disease. Box 2 provides an overview of both the motor and non-motor symptoms related to PD. There is emerging evidence of PD becoming the fastest growing neurological disorder worldwide. The global number of people with PD is projected to exceed 12 million by 2040.40 In observational studies, PD tends to affect men more frequently than women in most countries in the world (Japan being an example of a country where this is different), however, the reasons for this are largely unclear and sex/gender differences in PD prevalence may not be as pronounced as previously assumed.41–43 While gender is considered an important determinant of health in PD research, studies that have investigated the impact of gender on PD have almost exclusively focused on self-reported gender identity; often as a proxy for sex characteristics and rarely included other dimensions of gender. This results in a limited and incomplete picture of the role of gender as contextual and multidimensional social construct and its impact on clinical outcomes and individual illness experiences of people with PD. The aim of this thesis was, therefore, to apply a multiphase investigation to study the impact of gender and its multiple dimensions in the context of PD.
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