Diagnosis and pharmacological management of Parkinson's - SIGN

Diagnosis anD Pharmacological management of Parkinson’s Disease
3 narrative review of publications describing
patient issues
3.1 content of narratiVe reView
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A narrative review of the qualitative literature was conducted to identify issues of concern to
patients with PD. The search strategy is outlined in section 8.1
The narrative review identified six themes that arose either from incidental findings from other
research or as primary topics in their own right. These were:
communication
attitudes to drug therapy
information needs
family/carer needs
non-motor symptoms
multidisciplinary team working.
These topics reflect the most frequently cited issues and are not a comprehensive list of insights
generated by qualitative researchers. These topics are not discrete, they overlap and are interrelated.
for example, one study highlights the communication implications of non-motor
symptoms, such as diminished attention span.
Much of the literature identified was limited by the methodological quality of the studies (see
supplementary material on SIGN website for further details of the methodological analyses
undertaken).
3.2 communication
The ability to communicate is a vital part of normal life and deficits in communication can
have a devastating effect. Good communications are very important for people with PD, both
at the initial diagnostic stage and also as the condition progresses. Studies have suggested that
this must be a three-way process between the person with PD, their carers and the appropriate
professionals. A sharing of information with family members was perceived to be vital for each
person to understand their individual situation. A deterioration in the quality of speech of a
person with PD, in parallel with disease progression, has a significant negative impact on the
communication process. One person stated “…my voice doesn’t come out correctly”. 6 This
also made it difficult for him to express emotion. In addition, interruption, or the finishing of
sentences by others, was highlighted as impacting on a person’s ability to interact in a social
context. This particularly occurs when a person gets slightly confused in mid-sentence. This may
lead to social isolation as the person may be embarrassed by their disease and its symptoms.
The effect of altered emotions during the communication process was also highlighted. One
person said: “I don’t have the ability to control my emotion”. 7 People felt unable to tell others
about their PD, especially at the early stages as they were unsure about the potential reaction.
One person said “the people you work with do not understand when I have to ask to leave
early on Tuesday to go to [my] appointment”. 8
3.3 attituDes to Drug theraPY
Although people with PD are likely to react in a range of different ways when they start drug
therapy, there are few studies which describe this from the patient’s perspective. The main
issue identified was the importance of information provision at the time of diagnosis about
the condition, therapy and progression. One factor that impacted on the experience of taking
medication was for people to realise that they were not alone. Meeting with other people with
PD reassured them that others also had to take different medication, frequently with unwanted