OBJECTIVE:
To determine the prevalence of NMS in patients of PD presenting to movement disorder clinic at tertiary care centre in Pakistan.
STUDY DESIGN: Cross sectional study.
PLACE AND DURATION OF STUDY: Lahore General Hospital, Lahore, Pakistan from August 2015 to December 31st 2016.
METHODOLOGY: Out of consecutive 102 patients, 85 were included. Diagnosis of Parkinson’s disease was made by UK Parkinson’s disease society brain bank clinical diagnostic criteria. All the participants were required to fill PD NMS questionnaire with help of doctor or family member.
RESULTS
The NMSQuest revealed a mean of nearly 7 different NMS per patient. Autonomic problems like constipation (56%) and nocturia (49 %) were the commonest NMS while urinary urgency was reported by 35% patients. Among depressive symptoms, low mood and feeling sad was reported by 47% whereas 36% reported feeling anxious/panicky. Problem with memory was reported by 46% patients. Feeling of light headedness and dizziness was reported by 40% patients. Problems with sexual relationship were reported by 30% patients. Most common sleep problem was difficulty falling sleep (29%). Pain not related to musculoskeletal system was reported by 30% of patients. Loss or change in ability to taste or smell was reported by 29% patients. Rest of NMSs were less than 25% in frequency.
Conclusion:
NMS are quiet prevalent in PD population. The NMS are equally problematic to patients as are the cardinal symptoms of the disease. Many of NMS are potentially treatable hence diagnosis and treatment of these symptoms should be done vigilantly.
Introduction
Parkinson’s disease (PD), the second most common neurodegenerative disorder, is typically characterized by its motor symptoms namely rigidity, resting tremor, bradykinesia and postural instability (1). Parkinson’s disease (PD) affects 1-2 per 1000 of the population at any time. PD prevalence increases with age and PD affects 1% of the population above 60 years (2). Non-motor symptoms (NMS) of Parkinson’s disease include neuropsychiatric manifestations (cognitive impairment, depression, anxiety, psychosis, apathy, compulsive disorders), sleep disorders, autonomic dysfunction (constipation, urinary and sexual dysfunction ), sensory symptoms and fatigue (3).
NMS are prevalent in over 90% of people with PD from untreated stage to advanced (4). Many studies have shown negative correlation between presence of NMS and quality of life (5). NMS are frequently overlooked during routine consultations and such under-recognition may have serious implications on quality of care as many NMS are potentially treatable (6). NMS of PD such as apathy, pain, bowel incontinence, sexual difficulties and sleep disorders may remain under-reported to the physicians as the patients are either embarrassed or unaware that the symptoms are related to PD(6). Almost 50 % of PD may develop dementia after 15 years of disease progression [7], with prevalence increasing to 80–90 % by the age of 90 years [8]. Cognitive changes are associated with PD. Neuropsychiatric features, particularly depression and psychosis are prevalent at all disease stages and they contribute significantly to disability [9].
Although some NMS of PD such as depression, dementia, dysautonomia and sleep problems are well recognised while others such as, dribbling of saliva, weight changes, sexual problems, and visual problems are less appreciated(10). Some NMS can be related to drug treatment like dopamine for example, dopamine dysregulation syndrome, drug-induced hallucinations or psychosis, and postural hypotension, while fluctuations in motor responses also may have major non-motor components (11).
A study conducted in the US reported that treating physicians in over 50% of consultations did not recognize existing depression, anxiety, and fatigue and existing sleep disturbance was missed in over 40%(12). The importance of recognising NMS is of utmost importance as many of NMS of PD, contrary to common perception are treatable and they may respond to dopaminergic therapy (9). Non-motor symptoms of Parkinson’s disease are troublesome and quality of life is severely affected in both patients with Parkinson’s disease and their caregivers (13).
The NMSQuest is the first self-completed 30 item screening tool containing nine NMS domains designed for rapid screening of NMS, empowering the patient and caregiver to report relevant NMS that may not be otherwise discussed in routine clinical consultations (14).
Pilot validation study assessing feasibility, validity, and acceptability of the NMS questionnaire has been published and the questionnaire has been independently validated and recommended for use in routine clinical practice by the Department of Health in the UK (15).
STUDY DESIGN: Cross sectional study.
SETTING: Lahore General Hospital, Lahore from August 2015 to December 31st 2016.
PATIENTS AND METHODS
Consecutive 102 patients with possible PD presenting to movement disorder clinic, Lahore General Hospital were included. Diagnosis of Parkinson’s disease was made by UK Parkinson’s disease society brain bank clinical diagnostic criteria. Seventeen patients were found to have Parkinson’s plus, concurrent stroke , history of taking antipsychotics and hence were not included in study. Informed consent was obtained. Inclusion criteria were PD diagnosed according to international recognized diagnostic criteria [16], and Exclusion criteria included diseases that resembled PD (Parkinson’s plus etc), patients with stroke, patients who were unable to provide information, dementia and history of antipsychotic use. All the participants were required to fill PD NMS questionnaire with help of doctor or family member. Responses were recorded in YES or NO fashion. Patient only marked yes if he or she had experienced the said symptom/problem in past one month. Routine demographic details and drug history were noted. Declaration of NMS prompted appropriate management of individual symptoms.
DATA ANALYSIS:
After the questionnaires were filled for all of the patients, data analysis was done by calculating the abnormal/yes score for each patients. The percentage abnormal score was used to compare the frequency of different NMS in all patients and also compared male patients with female patients for these symptoms. Prevalence of each NMS was calculated by computing the number of positive responses (symptoms) and calculation of percentage related to the number of patients in the sample.
Analysis was done to estimate the frequency of all NMS among the enrolled patients.
Abnormal score was plotted on y-axis and different NMS were plotted on x-axis. Separate bars were specified for male (blue) vs. female (red) patients.
RESULTS:
The correlations between age of patient and abnormal score as well as disease duration and abnormal score was tried to establish. The age of patient was plotted on x-axis and abnormal score was plotted on y-axis but no correlation was found.
Similarly disease duration was plotted on x-axis and abnormal score was plotted on y-axis but no correlation was found. It was concluded that percentage of abnormal score indicating the severity of NMS in PD patients is not related to the disease duration or patient age.
Constipation and nocturnal urination were two NMS which had a frequency of at least 50 % in all patients whether males or females. Constipation was present in 55% male patients and 67% female patients. Frequency of nocturnal urination was 50% in males and 51% in females.
Swelling of legs, unpleasant sensations in legs, being anxious or sad and suffering unexplained pains were comparatively high in female patients.
NMS symptoms
Percentage
- Constipation 56 % (48)
- Nocturia 49 % (42)
- Feeling sad or blue 47% (40)
- Forgetting to do things 46 % (39)
- Feeling light headed/dizzy 40% (35)
- Feeling anxious or panicky 36% (31)
- Urinary urgency 35% (30)
- Unexplained pains 30% (26)
- Problems with sex 30% (26)
- Difficulty sleeping 29% (25)
- Loss or change in ability to taste or smell 29% (25)
- Loss of interest in surroundings 29% (25)
- Dribbling of saliva 28% (24)
- excessive sweating 24%(21)
- Unpleasant sensation in legs 22% (19)
- frightening dreams 22% (19)
- Unexplained change in weight 20% (18)
- Falling 19% (15)
- difficulty in swallowing food or drink or problems with choking 17% (15)
- Difficulty concentrating or staying focused 16% (14)
- Swelling in legs 15% (13)
- Daytime somnolence 14% (12)
- Double vision 14% (12)
- Decreased/increased libido 13% (11)
- Talking or moving in sleep 11% (10)
- vomiting or feeling of sickness 10%(9)
- Incomplete bowel emptying 10% (9)
- Delusions 8% (7)
- Illusions 7% (6)
- Fecal incontinence 0.6% (5)
Most common non-motor symptoms in males included constipation (55%), getting up regularly to pass urine at night (52) and problems with short term memory (48%) feeling light headed or dizzy (67%), constipation (67%), feeling anxious or panicky (61%) and feeling unpleasant sensations in legs while at rest (50%).
Most common non-motor symptoms in females included feeling sad or blue (78%), unexplained pains (67), feeling light headed or dizzy (67%), feeling anxious or panicky (61%) and feeling unpleasant sensations in legs while at rest (51%).
NMS symptoms – Male Percentage / Female Percentage
- Constipation 56 % 67%
- Nocturia 52 % 50%
- Feeling sad or blue 38% 78%
- Forgetting to do things 48 % 39%
- Feeling light headed/dizzy 33% 67%
- Feeling anxious or panicky 30% 61%
- Urinary urgency 36% 33%
- Unexplained pains 21% 67%
- Problems with sex 30% 1%
- Difficulty sleeping 30% 33%
- excessive sweating 23% 33%
- Unpleasant sensation in legs 15% 50%
- frightening dreams 21% 22%
- difficulty in swallowing food or drink or problems with choking 17% 22%
- vomiting or feeling of sickness 6% 22%
- Dribbling of saliva 30% 22%
- Loss or change in ability to taste or smell 27% 33%
- Fecal incontinence 3% 17%
- Incomplete bowel emptying 11% 11%
- Unexplained change in weight 20% 28%
- Loss of interest in surroundings 32% 22%
- Illusions 5% 17%
- Difficulty concentrating or staying focused 17% 17%
- Decreased/increased libido 10% 1 %
- Falling 27% 17%
- Daytime somnolence 12% 22%
- Talking or moving in sleep 12% 6%
- Swelling in legs 11% 33%
- Double vision 14% 11%
- Delusions 6% 17%
Illusions and delusions although was less prevalent in patients but was comparatively high in females e.g illusions were experienced by 4% of male patients and 18% of female patients.
There was study conducted in Netherlands in year 2013 to determine the prevalence of nonmotor symptoms (NMS) in nursing home residents with Parkinson’s disease (PD) and to establish the association with quality of life (17). As compared to this study, our study shows that frequency of urinary urgency , dribbling of saliva, difficulties staying awake, sleeping difficulties and loss of interest in surroundings were far less common in our study group (35%, 28 %, 14%, 29% and 29% respectively) as compared to them (75%, 63%, 60%, 52% and 60% percent respectively). The symptoms like loss or change in ability to taste and smell and problems with sex were more prevalent in our study (29% and 30% respectively) as compared to them (11% and 6 % respectively). Rest of symptoms were almost comparable in both groups. These findings are summarized in table below.
International study / Our study
- Patients 73 85
- Mean age (yrs) 79 57
NMS
- urinary urgency 75% 35%
- Nocturia 57% 49%
- Constipation 48% 56%
- Depressive symptoms 45% 47%
- Forget to do things 51% 46%
- Dribbling of saliva 63% 28%
- loss or change in ability to taste and smell 11.3% 29%
- difficulties staying awake 60 % 14%
- Unexplained pains 24% 30%
- sleeping difficulties 52% 29%
- loss of interest in surroundings 60% 29%
- Problems with sex 6% 30%
There is another international study conducted by Chaudhary K. Ray to determine the proportion of patients not declaring NMS to healthcare professional as assessed by self completion of the NMS Questionnaire (18).
International study(yrs) / Our study (yrs)
- Patients 242 85
- Mean age 68 57
NMS
- urinary urgency 60% 35%
- Nocturia 46% 49%
- Constipation 48% 56%
- Depressive symptoms 49% 47%
- Forget to do things 51% 46%
- Dribbling of saliva 42% 28%
- loss or change in ability to taste and smell 43% 29%
- difficulties staying awake 35 % 14%
- Unexplained pains 46% 30%
- sleeping difficulties 47% 29%
- loss of interest in surroundings 40% 29%
- Problems with sex 34% 30%
As compared to this study, our study shows that frequency of urinary urgency, dribbling of saliva, loss or change in ability to taste and smell, difficulties staying awake, unexplained pains, sleeping difficulties and loss of interest in surroundings were far less common in our study group (35%, 28 %, 29%, 14%, 30%, 29% and 29% respectively) as compared to them (60%, 42%, 43%, 35%, 46%, 47% and 40% percent respectively). Rest of symptoms were almost comparable in both groups.
Conclusion:
Non-motor symptoms are quiet prevalent in PD population. The NMS are equally problematic to patients as are the cardinal symptoms of the disease. Many of NMS are potentially treatable hence diagnosis and treatment of these symptoms should be done vigilantly.
Management of NMS is largely unfulfilled because of problem at both ends. Most of patients themselves do not come up with problems because they think that these symptoms (NMS) are not related to disease. Doctors are sometimes also over look as they pay more attention to cardinal symptoms of disease rather than patient as a whole. In a nutshell it cannot be overemphasized that patients should be asked to fill NMS questionnaire at regular intervals as disease progresses and treatment plan should be tailored accordingly.