The Impact Of Parkinsonism On Healthrelated Quality Of Life

The Parkinson's-Reversing Breakthrough

Parkinson Disease Treatment Options

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Parkinson's Disease

The only parkinsonian disorder that has been assessed in detail with regard to Hr-Qol is PD. Studies on Hr-QoL of patients with PD have improved our understanding of subjectively experienced difficulties associated with this disease, and we now have a clearer understanding of what aspects of Hr-QoL are most important to patients with PD. A full review of the expanding Hr-QoL literature in PD is beyond the scope of this chapter. However, it has consistently been found that all areas of Hr-QoL are affected by PD, not merely the physical impairment or functioning (23,25,26). The main areas of impairment in PD are in physical functioning, emotional reactions, social isolation, and energy. Other domains of impairment of Hr-QoL in PD, include bodily discomfort/pain, self-image, cognitive function, communication, sleep, role function, and sexual function (23,25-27). It has also become clear that in PD, it is not primarily disease severity and presence of the symptoms of PD that determine Hr-QoL, but the disability associated with these symptoms and, more than any other factor, the presence and severity of depression (24,25,28). Further symptoms, which have also been found to be highly relevant to Hr-QoL of patients with PD, are postural instability and falls, impaired cognition, and insomnia. Other factors, including motor complications of treatment, may also be associated with poorer Hr-QoL in subgroups of patients, but this association is no longer significant once other important factors such as depression and disability due to parkinsonism are accounted for.

Potentially Important Quality-of-Life Issues in Atypical Parkinsonian Disorders

A wide range of symptoms are likely to be associated with impaired Hr-QoL in atypical parkinso-nian disorders, including the cardinal features of parkinsonism, nonmotor symptoms such as sexual and autonomic dysfunction, postural instability and falls, cognitive impairment, and visual disturbances.

Some analogies can usefully be drawn from Hr-QoL studies in PD. The degree of disability in atypical parkinsonism is at least as great as in PD and depression occurs in all atypical parkinsonian disorders (29,30). It is therefore likely that these factors are also important in atypical parkinsonian disorders. However, these are likely not to be the only difficulties encountered by patients with atypical parkinsonism in whom, frequently, many systems are affected. The impact of features such as greater autonomic dysfunction, higher rate of falls, behavioral changes, or cognitive impairment, will depend on the type of atypical parkinsonism. In addition, the shortened life expectancy, greater disability, lack of response to treatment, associated nonmotor features, cognitive impairment, and behavioral disturbances in atypical parkinsonian disorders will all impact on patients' subjective evaluation of their Hr-QoL. On the other hand, symptoms that occur less frequently in atypical par-kinsonism than in PD, such as tremor, hallucinations, dyskinesias, and motor fluctuations, are likely to be of lesser importance to the Hr-QoL in patients with atypical parkinsonian disorders.

All of these symptoms may lead to increased dependence on others, a diminished sense of autonomy and self-image (31), impairment of role functioning, emotional disturbances, fear of social stigma associated with physical symptoms, and impairment of social functioning. Table 2 gives examples of features of atypical parkinsonism, domains of Hr-QoL, which can be affected, and demographic and psycho-social variables, which may influence Hr-QoL in patients with atypical parkinsonism.

Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP)

We have recently undertaken in-depth interviews with patients with MSA and PSP and their carers, and conducted a large survey on issues relevant to patients with atypical parkinsonian disorders, with the aim of developing disease-specific Hr-QoL questionnaires for patients with MSA and PSP. There was considerable overlap in reported areas of health-related quality of life issues relevant to patients with PSP and MSA, but also some differences.

Table 2

Examples of Factors Relevant to Hr-Qol in Atypical Parkinsonian Disorders

Table 2

Examples of Factors Relevant to Hr-Qol in Atypical Parkinsonian Disorders

Domains of HR-QoL That May Be Affected

Features of Atypical Parkinsonian Disorders

Demographic Variables

Psychosocial Variables

Physical function, e.g., mobility, bodily

Motor symptoms

Age

Personal, e.g., coping

discomfort, bladder problems

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