Survey Results
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For the majority of those who had DBS-STN surgery, their quality of life has improved dramatically. We are pleased to present a series of reports designed from the patients' point of view. The reports are presented in most current first.
Click here to download a summary of survey reports conducted by The Parkinson Alliance in a PDF format.
References from our Pain Report.
Quality of Life and Attitude in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation.
Individuals with Parkinson’s disease (PD) are confronted with physical, psychological, and psychosocial issues that impact quality of life, and the medical community is increasingly recognizing health-related quality of life as a major criterion in evaluation of health interventions.
Further assessment of the domains related to health-related quality of life and attitude as it relates to coping with PD is important to further assist in optimizing treatment outcomes.
Fatigue and Apathy in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation.
In recent years, non-motor symptoms of Parkinson’s disease (PD) have received more attention, as these greatly affect quality of life for persons with Parkinson’s disease (PWP), as well as their family and friends. Two poorly understood but common non-motor symptoms in PWP include fatigue and apathy. Each has separate effects on daily life.
Since fatigue and apathy are common in PD, it is important to take a close look at these symptoms, how they may relate to each other, and how they are impacting individuals with PD.
Understanding Pain and Parkinson's Disease for Individuals with and without DBS.
Parkinson’s disease (PD) is classically defined as a movement disorder with primary symptoms of tremor, rigidity, bradykinesia, disturbance of gait, and postural control problems. Pain, however, is increasingly recognized as a disabling symptom and is cited as a major complaint, often prior to confirmation of a PD diagnosis. Little is known about the pain experienced by People with Parkinson’s Disease (PWP), or how PWP find relief from painful symptoms. Furthermore, some studies have found that Deep Brain Stimulation (DBS) may alter the experience of pain in PD. Other studies, however, did not find differences between those PD patients who have DBS and those who do not.
References from our Pain Report.
A closer look at Balance in Parkinson’s disease for those with and without Deep Brain Stimulation: The patient’s perspective.
(Dec. 09) Among the cardinal features of Parkinson Disease (PD), including bradykinesia, rigidity, resting tremor, abnormal postural reflexes and gait disturbance, gait and balance disturbances as well as falls are a leading cause of disability and dependence on others (Muslimovic et al., 2008). The inability to move around due to gait and balance problems is one of the most important causes of decreased quality of life, morbidity, and mortality in patients with PD (Forsaa, et al., 2008; Muslimovic et al., 2008; Pickering, et al., 2007; Rahman et al., 2008). It is known that falls represent a major threat to health status and independence, causing pain and cessation of physical activities, whether due to fear of falling, declining mobility, or balance. In fact, PD patients have 3 times the falls and 5 times the injuries when compared to age-matched individuals who do not have PD (Horak, 2005). Furthermore, there is some indication that Deep Brain Stimulation (DBS) of the subthalamic neucleus (STN) or globus pallidus interna (GPi) can improve gait and balance (e.g., such as speed of walking, as cited in Hausdorff, et al., 2009), while other studies have found that DBS of the STN made gait and balance worse, (e.g., as evidenced by the increased number of falls reported in those patients with DBS as compared to those with medication management only; Weaver et al, 2009).
References from the peer-reviewed manuscripts from our Balance Report.
Speech in Individuals with Parkinson's Disease with and without Deep Brain Stimulation. (Jan. 09) Speech is a complex behavior that is coordinated by an integrated network of sensory, muscular, respiratory, and cognitive systems. As a result of the complex nature of speech, symptoms of speech impairment can be quite diverse, reflecting dysfunction in one or more of these systems. Research has found that speech problems are common in Parkinson’s disease (PD), and it has been found that 70% of persons with PD reported speech impairments after the onset of PD.1 The scientific literature examining speech in PD is vast and the following paragraphs are intended to provide only a brief introduction to this topic as it relates to the current research project.
Feedback regarding the research conducted by The Parkinson Alliance. (Dec. 07) The Parkinson Alliance regularly pursues feedback regarding the research that we conduct. We request feedback about each survey in hopes to ensure that we are meeting the needs of our “community.” We recently conducted phone interviews with participants of our research endeavors to pursue feedback about past surveys and the future direction of research conducted by The Parkinson Alliance.
Differential Impact of Coping Styles on Quality of Life for Individuals with Parkinson's Disease with and without Deep Brain Stimulation. (Oct. 2007) Individuals with Parkinson's disease (PD) are faced with the challenge of coping with a chronic, progressive disease that will alter their lives in numerous ways. Understanding coping reactions and strategies and its impact on quality of life is an area of great importance for patients, family members, and physicians. How an individual copes with specific stressful symptoms of the disease has a significant effect on overall function and well-being. The goal of this project was to learn more about coping strategies/mechanisms (the way people cope with illness) in individuals with Parkinson’s disease who have and have not undergone DBS-STN, and to study the relationship between coping, Quality of Life, and certain patient variables.
The Relationship between Sleep and Emotional Well-being in Individuals with Parkinson’s disease with and without Deep Brain Stimulation. (Feb 2007) Sleep disturbance, including insomnia, sleep apnea, restless leg syndrome, and REM sleep disorder, as well as depression and anxiety are quite prevalent in Parkinson’s disease (PD). The goal of this project was to learn more about the relationship between sleep and emotional well-being in individuals with PD and to learn more about the differences in this relationship in persons who have and have not undergone Deep Brain Stimulation of the Subthalamic Nucleus (DBS-STN)
Sleep in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation. (Jan 2007)
Research has found that a large percentage of individuals with Parkinson’s disease (PD) experience various sleep difficulties including insomnia, sleep apnea, restless leg syndrome, and REM sleep disorder.
The goal of this project was to learn more about sleep in individuals with PD who have and have not undergone Deep Brain Stimulation of the Subthalamic Nucleus (DBS-STN), and to study the relationship between sleep and certain patient variables (e.g., disease duration, time since DBS, and other clinical features).
Anxiety and Depression in Individuals with Parkinson’s Disease with and without Deep Brain Stimulation. (Dec 2006) Research has found that there is a greater prevalence of anxiety and depression in people with Parkinson’s disease (PWP) compared to the general population. The goal of this project was to learn more about anxiety and depression in individuals with Parkinson's disease who have and have not undergone Deep Brain Stimulation of the Subthalamic Nucleus (DBS-STN), and to study the relationship between anxiety, depression and certain patient variables (e.g., disease duration, time since DBS, and other clinical features)
The Parkinson Alliance Quality of Life Scale (PAQLS). (April 2006) Understanding quality of life for patients with PD, from the perspective of the patient, is of great importance. The Parkinson Alliance Quality of Life Scale (PAQLS) was designed to create a unique and comprehensive self-report measure of QoL for individuals with PD who have and have not undergone Deep Brain Stimulation (DBS). The results of this survey provided intriguing perspectives from our participants about motor and non-motor symptoms related to PD, psychosocial factors associated with QoL, and satisfaction with DBS therapy.
Focus 2 Survey and Focus 2 Report. (November 2004)
This survey was designed to examine quality of life and depression and how certain patient and clinical variables relate to aspects of quality of life and depressive symptoms.
Focus 1 Survey and Focus 1 Report. (January 2004) A number of large gaps were uncovered in the patients’ knowledge and understanding of many issues they and their families were struggling with—even as they were recuperating from the surgery. The Focus 1 survey was sent to the respondents of the initial survey. It was an outgrowth of some of the questions that were raised and collected in the "The First Report." This survey compared the severity of many PD symptoms before and after surgery, as reported by forty-nine patients.
The First Report. In 2002, the first DBS-STN survey was distributed to a group of PD patients who had DBS-STN surgery. This survey was designed to collect, analyze, and compare the individual circumstances leading up to, through, and after surgery. We found that the survey helped answer many questions and raised some others. The evaluation of the collective responses is the foundation for The First Report.
The information presented in our past and upcoming surveys is designed from the patients' point of view. It has no constraint or standard statistically validated double-blind random protocols. It offers the patients' unadulterated view as a novel and valuable source of data that will benefit patients and individuals looking for more information on DBS-STN. This information will also prove valuable to the scientific and medical community.