Authored by Lamiaa Hassnin Eita*
Abstract
Though traditionally Parkinson’s disease has been considered as a motor disorder, common and disabling non motor symptoms have an increasingly important role in Parkinson’s disease. The non-motor symptoms (NMSs) of Parkinson’s disease are a hallmark cause of disability and associated with the deterioration of life quality.
Aim: The aim of the study was to assess prevalence of NMSs among patients with Parkinson’s disease and its effect on quality of life QOL.
Methods: A quantitative descriptive correlational research design was used. A sample of 96 patients with PD was recruited from psychiatric outpatients’ clinics at Menoufia University Hospital. The Non-motor symptoms questionnaire (NMSs Quest) to detect the presence or absence of symptoms based on yes-no answers and EQ-5D visual analogue scale (EQ-5DVAS) to assess health-related quality of life.
Results: all patients with PD were complaining from one or more of non-motor symptoms and there were negative significant correlations between QOL total score and grand total scores of NMSs as well as its nine domains.
Conclusion: the present study showed that the non-motor symptoms had an effect on the quality of life. Recommendation: More assessment and management of NMSs are recommended for improvement of the quality of life of patients with PD and the involvement of a PD nurse specialist (PDNS) to offer education to the patients with PD and their families, the wider community, and training of clinical and non-clinical staff.
Keywords: Parkinson’s disease; Non-Motor symptoms (NMSs); Quality of life
Introduction
Parkinson’s disease is one of the common neurodegenerative movement disorders after Alzheimer disease. The cardinal manifestations of Parkinson disease are rest tremors, rigidity, bradykinesia and postural instability were described by Jamen Parkinson in 1817. He also described certain non- motor manifestations such as sialorrhea, urinary incontinence, sleep disturbances, feeling light-headed and falling, unpleasant sensations in leg and constipation. It was classified into nine domains which are; urinary, cardiovascular, gastrointestinal, sexual, cognition (apathy/attention/memory), hallucinations/delusions, anxiety/ depression, and sleep and miscellaneous [1]. Parkinson’s disease (PD) is a common and complex disorder, a good knowledge regarding it is essential for taking the best decisions about the diagnosis and management in standard clinical practice [2].
PD affects approximately 1% of general population worldwide, especially those over the 60 years and about 4% in highest age and it is a rare before 50 years [3,4]. In patient with PD, many symptoms not observed if the patient is not to be asked about them. The emphasis in the last decade has been on the motor symptoms of PD, focusing mainly on tremor, postural instability, rigidity, and bradykinesia. Now, it is recognized that the disease is more pervasive with various non -motor symptoms, also, NMS happen throughout the course illness from early to late diseases and at any time [5]. NMSs are not mentioned by the patients with PD unless asked. These symptoms are undeclared because the embarrassment patient’s sensation, or their caregivers and the motor symptoms take the more chance during the patient interviewing. Moreover, the patients are not asked regarding their symptoms which are overlooked.
The non-motor symptoms (NMSs) of Parkinson’s disease (PD) are a hallmark cause of disability and associated with the deterioration of life quality. Therefore, detection of NMSs is very important to optimum health care for patient with PD in clinical practice.
A few studies investigated the NMSs profile in Egyptian PD patients. The prevalence of PD among Egyptians is the highest ratio comparing with other Arabic countries, which may be due to environmental and genetic factors [6]. As much as, 90% of people with PD report NMSs and a number of studies have shown a negative correlation between NMS and quality of life [7]. Nonmotor symptoms (NMSs) of PD include a variety of symptoms such as neuropsychiatric problems (as cognitive impairment, anxiety, depression, psychosis, compulsive disorders and apathy), autonomic manifestation (bowel problems such as constipation, urinary complaints, sleep disorders, fatigue sensory symptoms, and sexual dysfunction [8].
Non- motor symptoms (NMSs) are affected on health-related quality of life (HRQOL), so their searches started to deal with this issue and in some cases their burden can be more disabling when compared with motor symptoms [9]. In the past two decades, studies about HRQOL have revolved around the effect of motor symptoms such as rigidity, bradykinesia, tremor, gait, and balance problems. More recently, few non-motor symptoms of Parkinson’s disease studies have measured the impact of these symptoms on HRQOL in a holistic manner [9]. It is important to ask and detect the problems of non-motor symptoms and assess their severity in order to improve patient care quality.
Some patients were embarrassed to declare these symptoms with the health care provider (HCP) unless they were prompted such as incontinence of bowel or sexual complains, patients were not aware that these symptoms have been related to PD such as drooling and health care provider (HCP) mainly preoccupied by motor symptoms than non-motor symptoms.
There is now urgent indication for the need of a nurse-led clinic for patients with PD. This nurse is in a unique position to provide information, nursing care, and education to enhance the quality of life [10]. As well as nursing duties, the PD specialized nurse carry out other highly important roles such as providing education, information and therapies regarding the patient and the career. The role of the specialized nurse may reduce unnecessary hospitalization and reduce waiting time of patients and lower costs to the system [11]. Nursing care of patients with PD focus on the bio- psychosocial approach and must be based on legal, ethical and theoretical assumptions for health promotion, treatment, prevention of complications and enhance rehabilitation [12]. So, this study aimed at assessing the prevalence of non-motor symptoms, considered as a whole, and its effect on quality of life in patients with Parkinson’s disease.
Significance of the study
Not much is studied concerning NMSs profiles in patients with Parkinson’s disease. Nursing staff have had an active role regarding PD cases to reduce unnecessary hospitalization and costs of care. NMSs are in a less focus for patients’ families, and people who provide nursing in the care of patients [13]. Recognizing and treating these symptoms are essential for high functional outcome.
This information could help psychiatric staff recognize nonmotor symptoms related to PD and manage them early to improve their quality of life. The development of severe NMSs in PD influences rates of nursing homes and adds to the cost of health care of PD. Rigorously applying non-motor symptoms assessment by trained nursing staff would complement the motor assessment which made by the physician.
Aim of the study
The aim of the study was to assess prevalence of NMSs among patients with Parkinson’s disease and its effect on quality of life QOL.
Research questions
a. What is the frequency of each of NMSs?
b. What is the frequency of NMSs domains?
c. What is the degree of severity of each of NMSs domain?
c. What is the degree of severity of each of NMSs domain?
c. What is the degree of severity of each of NMSs domain?
Parkinson’s disease (PD): Is a multisystem neurodegenerative disorder that is characterized by a combination of motor and nonsymptoms (NMSs). PD is an idiopathic movement disorder which is characterized by resting tremor; bradykinesia, pill-rolling tremor and mask like face [14]. Non -Motor symptoms (NMSs) of PD theoretically include a variety of symptoms such as autonomic manifestations (bowel problems such as constipation, sexual dysfunction, and urinary complaints, neuropsychiatric problems (cognitive impairments depression, anxiety and psychosis), sleep disorders, fatigue and sensory symptoms [15]. In the present study, NMSs operationally defined as the percentage of each non motor symptom and its severity or the mean of each NMS domain, that was measured by non -motor symptoms questionnaire which was developed by Chaudhuri [16].
Quality of life: Is theoretically defined as a state of wellbeing. This is a concept that includes domains related to physical, mental, emotional, and social functioning [17]. QOL in the present study is operationally defined as the total score which the patient with PD is reported on the visual Analogue scale (VAS).
Subjects and Methods
Research Design
A quantitative descriptive correlational research design was used.
Setting: The study was conducted at psychiatric outpatients’ clinics at Menoufia University Hospital, Menoufia, Egypt.
Subjects: A convenience sample of 96 patients with PD. All participants with a confirmed PD diagnosis and who agreed to participate, all ages and both genders were enrolled, and no specific exclusion criteria were set. All patients were on pharmacological and non-pharmacological therapies (e.g occupational, speech therapies, and physical to achieve optimal functioning.
Tools of data collection: Three tools were utilized by the researcher
Tool (I): Personal and medical data: structured interview schedule. This tool was developed by the researcher after reviewing the related literature for the purpose of collecting sociodemographic characteristics which include age, gender, and onset of the disease and duration of it.
Tool (II): The Non-Motor Symptoms Questionnaire (NMSs Quest) which developed by Chaudhuri et al. It is a 30 item, validated, self-completed yes-no-type comprehensive questionnaire. All items detect the presence or absence of symptoms based on yesno answers. It was classified the 30 questions into 9 domains: urinary, cardiovascular, gastrointestinal, sexual, cognition (apathy/ attention/memory), hallucinations/delusions, anxiety/depression, sleep and miscellaneous. Seven questions i.e., dribbling of saliva, reduced taste or smell, dysphagia, nausea, constipation, bowel incontinence and incomplete bowel emptying were included in gastrointestinal domain. While urinary domain included questions on urgency and frequency of micturition. Cardiovascular domain included 2 questions-feeling light-headed and falling (syncope) while feeling sad and feeling anxious/ frightened were questions in anxiety/depression domain. Presence of hallucinations and delusions were the two questions in hallucinations/depression domain, while reduced interest and difficulty in performing sex were included in a sexual domain. Memory problems, loss of interest and difficulty in concentration were classified under memory domain Sleep domain included 5 questions on insomnia, increased drowsiness with difficulty in staying awake, vivid dreams, talking or moving in sleep (rest sleep behavioral disorders), unpleasant sensations in leg (restless leg syndrome) whereas the last 5 questions on unexplained pains, changes in weight, swelling of feet, excessive sweating, and double vision were included in miscellaneous domain. Positive responses are summed up to yield a total score. (NMSs QT) ranges from 0 to 30. Higher scores indicate worse NMSs condition.
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