Living With Parkinson’s Disease
Figure 1: The Effect of the Presence of Non-motor Symptoms of Parkinson’s Disease on Quality of Life Measured By Parkinson’s Disease Questionnaire-3912
100
10 20 30 40 50 60 70 80 90
Median PDQ-39 SI score 0
Yes No 29.6 19.1
Gastro- intestinal
29.3 18.5 Pain
Urinary 28.7 19.9
32.1 22.8
Cardio- vascular
28.3 18.5 Sleep
Fatigue 32.6 17.2
Apathy 36.0 20.1
PDQ-39 = Parkinson’s disease questionnaire-39; SI = single index. Source: Reproduced with permission from John Wiley & Sons.12 restless leg syndrome, apathy, fatigue and anxiety.7 It has been
proposed that this sequence of events fits in with the neuropathology of PD, whereby the disease ‘starts’ in the olfactory bulb and only when it has progressed does the pathology ‘spread’ to the substantia nigra and cause motor symptoms.8,9
In the future, this could have
huge implications for the early identification, treatment and prevention of PD, and assessment of the full range of non-motor symptoms will almost certainly be central to such early detection.
Despite their frequency, non-motor symptoms of PD are often under- recognised, and this article explores the evidence for non-motor symptoms being the most important determinant of QoL.
Non-motor Symptoms and Quality of Life A survey of more than 2,000 patients by the UK Parkinson’s Disease Society showed that many of the symptoms of PD that most affected people’s lives were non-motor aspects such as sleep problems, depression, memory loss, anxiety, pain and balance.10
Subsequent
publications have confirmed that while motor symptoms have an effect on QoL, measured by PDQ-39, non–motor symptoms such as psychiatric, autonomic and sensory symptoms also contribute significantly to reducing QoL in PD.11
A large-scale study involving
1,072 patients showed that the non-motor symptoms with the largest negative impact on QoL included apathy, psychiatric symptoms including depression, fatigue, attention–memory problems, sleep problems and pain (see Figure 1).12
The development of the NMSS provides a useful tool for quantifying non-motor symptoms in patients.13,14
The NMSS is now accepted as a
reproducible, valid and precise instrument, and a clear correlation between worsening NMSS scores and PDQ-39 scores has been demonstrated – further confirming the importance of non-motor symptoms on QoL in patients with PD.5,15
The correlation between
NMSS scores and QoL (both PDQ-39 and PDQ-8) was greater (correlation coefficient 0.70) than the correlation between measures of motor function (Unified Parkinson’s Disease Rating Scale [UPDRS] III and Hoehn and Yahr staging) and QoL (correlation coefficients ranging from 0.41 to 0.51).4,5,15
This strong correlation exists irrespective of the stage of PD, and scores on both the NMSS and PDQ-8 increase with the 10
duration of disease. Generally, non-motor symptoms that are common in advanced PD (duration >10 years) are also present at an earlier stage (disease duration <1 year).
Long-term follow-up studies show it is the non-motor symptoms such as depression, dementia, dribbling of saliva and choking that are a major cause of disability and the primary cause of hospitalisations.16,17
32.7 20.1
Attention Memory
28.5 22.9 Skin
Psychiatric 29.7 17.9
Respiratory 32.4 22.9
It is
crucial, therefore, that both motor and non-motor symptoms are considered when aiming to improve the QoL of patients with PD.
Treatment and Quality of Life
An observational study of changes in QoL in people with PD, The audit of changes in quality of life in people with Parkinson’s disease (PDLIFE), has demonstrated that initiating antiparkinsonian treatment at, or shortly after, diagnosis helps maintain the patient’s QoL in the first 18 months.1
In 188 treatment–naive patients, 74 (39 %) started monotherapy for PD within nine months of diagnosis, 127 (68 %) started monotherapy within 18 months of diagnosis, while 61 (32 %) remained untreated. The QoL measured by PDQ-39 deteriorated significantly at nine months (p<0.05) and further deteriorated at 18 months (p<0.05) in patients who remained treatment-naive. In contrast, monotherapy ensured that QoL was maintained at nine months and 18 months (see Figure 2).1
All eight domains of the PDQ-39
(mobility, activities of daily living, emotion, stigma, social, cognition, communication and bodily discomfort) significantly worsened after 18 months in treatment-naive patients with a moderate-to-large effect size – monotherapy maintained scores in most domains.1
The findings from PDLIFE have important implications. Treatment is initiated when the physician believes the patient has deteriorated, but this belief is apparently based on the motor status of the patient. As such, QoL may deteriorate in untreated individuals owing to non-motor symptoms. Treatment initiation should therefore be based on both motor and non-motor status as both these aspects of PD have early and detrimental effects on QoL. One possible barrier to initiating treatment at diagnosis, and thus preventing rapid deterioration in QoL, is a lack of awareness and non-declaration of non-motor symptoms.18
In
patients whose non-motor symptoms were assessed by the NMSS, approximately 40 % of symptoms were not declared to healthcare
EUROPEAN NEUROLOGICAL REVIEW SUPPLEMENT
PDQ-39 single index score
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