Finding Words to Describe Parkinson’s Pain


Parkinson’s disease (PD) pain is unique, so finding words to describe it is difficult. Not all those with a diagnosis experience pain. But for some, like me, pain is the major, disabling symptom. It is important to find words that describe the pain experience as clearly as possible. There is no “grin and bear it,” nor is this “a pity party.” Instead, this is a search for accurate articulation of the pain experience to help maintain quality of life.

Pain may be an early symptom of PD, according to a study presented at the 2018 World Congress on Parkinson’s Disease and Related Disorders titled “Pain: A marker of prodromal Parkinsons disease?” The American Parkinson Disease Association published research that supports the connection of pain with Parkinson’s, suggesting that if the pain is relieved with dopaminergic medication and the patient has a pattern of painful sensations that correlate to “off” episodes, more credence can be given to the idea that the pain is PD-related.

PD pain can resemble pain from other disease processes, especially as the patient ages and faces a multitude of other pain-causing conditions such as arthritis, spine degeneration, poor muscular conditioning, and such. In my case, PD pain is distinguished by the following:

  • The progression of body pain correlated with the progression of the disease over time.
  • Levodopa, a dopaminergic therapy, successfully reduces the pain.
  • The pain is worse during “off” periods.

My PD pain also has a particular characteristic: stinging (sometimes knife-jabbing), irritating tingling, burning, and muscle heaviness with increased pain on movement. This pain happens over large regions of the body and varies in severity. At its worst, it can last several days and reach level 7, inducing spontaneous tears.

PD with episodic chronic pain is disabling in several ways. First, high levels of pain obstruct clear thinking. Second, high levels of pain induce the fight-or-flight response, which interferes with emotion management. Third, the amount of energy necessary to manage it is very tiring (even more so in the face of the deep fatigue associated with PD). Chronic PD pain entails much more than body symptoms.

Parkinson’s pain is a total experience that touches thoughts, feelings, and relationships. Even when it’s a struggle, finding the words to describe pain experiences is imperative to maintaining quality of life in the face of a difficult diagnosis. Finding the right words helps one communicate the pain experience to care providers, family, and friends — a network of relationships that help form the foundation for quality of life. By communicating the pain, those close to me are more understanding of why I act the way I do, which helps to maintain those relationships.

Over the years, I have watched my PD progression. I have taken the warrior stance to do all I can to slow the progression. My hardest battle is with the total experience of chronic PD pain. Large blocks of time disappear into the fog of war. Over time, I have learned the importance of communicating about the pain daily, sometimes multiple times a day. My partner asks, “Where are you today?” I will say, “I’m at level 5,” followed by a quick mention of the most bothersome symptoms. In the past, I kept track of the pain levels throughout several months to create benchmarks. This is all part of finding the words to describe the Parkinson’s pain experience.

I have been a “communicator” most of my life, but it remains a struggle to find words that describe the unique character of PD pain. If you experience PD pain, please share your descriptors in the comments. Together we may find a common dialogue that will help others.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Parkinson’s Patients and Caregivers are Active, but Lack Self-management Support, Study Finds

Self-management and PD

Patients with Parkinson’s disease and their caregivers are usually active and ready to adopt strategies to improve their quality of life and disease management, but lack self-management support, a study finds.

The study, “Development of the Integrated Parkinson’s Care Network (IPCN): using co-design to plan collaborative care for people with Parkinson’s disease,” was published in Quality of Life Research.

Parkinson’s disease is a progressive neurological disease characterized by the gradual loss of muscle control, sometimes accompanied by cognitive deficits that can significantly affect patients’ quality of life.

For this reason, “people with [Parkinson’s disease] and their caregivers require a collaborative approach to healthcare to optimize functioning and promote quality of life,” researchers stated.

This collaborative approach requires patients and their caregivers to be active, well-informed, confident and willing to engage and communicate with healthcare providers to manage disease symptoms and improve their overall quality of life.

However, the lack of integrated care programs, including self-management strategies and education, often result in “PD patients [being] underinformed about critical care issues and experience lack of collaboration among members of their healthcare team.” Self-management refers to patients having the skills and confidence necessary to manage day-to-day tasks and live well with a chronic health condition.

In this study, researchers developed and implemented an integrated approach to care in a tertiary Parkinson’s disease clinic in Ottawa, Canada.

The team chose a process of co-design, where the user viewpoint is essential to inform service delivery.  Patients and caregiver input was gathered through surveys and interviews and used to  develop a model that incorporates care integration, self-management support, and technology-enabled care: the Integrated Parkinson’s Care Network (IPCN).

The observational, cross-sectional study involved 108 participants who were asked to complete two questionnaires: one to evaluate perceived self-management support (Patient Assessment of Chronic Illness Care plus); and the other to assess knowledge, skills, and confidence for managing their own health or that of a loved one (Patient or Caregiver Activation Measure).

A total of 57 Parkinson’s patients and 31 caregivers completed the questionnaires. A subset of 13 patients, six caregivers and six healthcare providers also participated in semi-structured interviews, designed to gather information on participant experiences of managing disease, accessing or providing care, information and support; and areas that worked well and areas for improvement.

Findings revealed that 58% of study participants were moderately or highly active at facing and managing Parkinson’s daily challenges. Caregivers tended to be slightly more active than those living with the disease. Additionally, older adults who require a mobility aid or assistance with activities of daily living tend to be less active.

“Knowledge of patient and caregiver levels of activation can be used to tailor interventions to promote adoption of health behaviors,” researchers stated.

Although patients’ and caregivers’ perceptions of self-management support varied, in general they expressed a lack of goal-setting and follow-up support or coordination. Findings also identified the need to provide relevant information and assistance to access “resources and ongoing monitoring of how patients are managing their condition.”

Participants felt better informed and satisfied when healthcare providers “engaged in open communication and shared decision-making.”

There was a positive association between patients’ goal-setting and the level of follow-up and coordination of care they received. “Goal-setting that is led by the patient may facilitate a more focused approach to care that supports shared decision-making and targets individualized needs for follow-up,” researchers stated.

The team noted that although these findings are designed to inform service development at one clinic, “they can sensitize healthcare providers to the individualized needs of people with  [Parkinson’s disease] and their caregivers.”

“While participants perceived varying levels and types of self-management support, a lack of goal-setting, follow-up, and coordination of care and access to services were highlighted as gaps. Adapting service provision to address these gaps is critical for collaborative care,” they concluded.

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Focused-ultrasound Lesion Surgery Can Treat Tremors and Improve Life Quality, Study Says

tremors and surgery

Treating tremor in Parkinson’s patients using non-invasive and focused-ultrasound lesion surgery is associated with better quality of life when compared to deep brain stimulation, although both approaches are equally effective in easing this disease symptom, a review study reports.

The study, “Outcomes in Lesion Surgery versus Deep Brain Stimulation in Patients with Tremor: A Systematic Review and Meta-analysis,” was published in the journal World Neurosurgery.

At least 50 percent of people with Parkinson’s, essential tremor (ET) or multiple sclerosis (MS) given oral medications as a first-line treatment for tremor — defined as an involuntary, uncontrollable muscle contraction; most commonly in the hands — do not tolerate these medications over the long term.

Current alternatives include deep brain stimulation (DBS) and lesion surgery (LS), which induces lesions on targeted areas using a heated electrode or focused ultrasound. Prior comparisons have shown that while the two techniques are equally effective in suppressing tremor, DBS led to a greater improvement in function.

But LS with focused ultrasound is gaining in popularity, and one study suggested that it may significantly improve tremor and quality of life.

Researchers at Harvard Medical School conduced a systematic review and a meta-analysis — a type of statistical study that combines the results of various studies — to determine which strategy is most effective in diminishing tremor severity and improving life quality and function in people with Parkinson’s, ET, or MS.

Three online databases were searched for results of randomized clinical trials published up to Jan. 1, 2018, and that included adults treated with either LS or DBS, or serving as controls. Both DBS and LS studies targeted unilateral or bilateral thalamus, pallidum or subthalamic nucleus, all of which are implicated in motor function.

Thirteen Parkinson’s trials were among the 15 included in this study, and the primary outcome for all but one was change in upper limb tremor severity, as assessed with the unified Parkinson’s disease rating scale (UPDRS) part III. Changes in quality of life, cognitive function and neuropsychiatric function were also assessed with variable measures.

A total of 1, 508 patients (mean age range, 48.4 to 70.8) were included, and in addition to the 13 studies involving only Parkinson’s patients, one study looked at people with Parkinson’s, ET and MS, while the remaining study was in people with severe ET.

Four of the 15 trials — involving 125 patients — directly compared DBS to LS. The others compared either LS or DBS with controls.

Results showed that DBS and LS were not significantly different across all analyzed outcomes, which is in line with current guidelines, the researchers noted. All but one trial showed both these types of surgery eased tremor severity. Quality of life findings showed variability in outcomes, which was driven by disease duration. Specifically, longer disease duration correlated with a greater likelihood of surgery and better quality of life.

A subgroup analysis that looked specifically at LS using focused ultrasound revealed that this approach was associated with a significant improvement in quality of life compared to DNS, although changes in tremor severity were similar.

“Policy makers, healthcare providers, and patients could therefore consider focused-ultrasound [LS] as a potential choice for tremor control, based on currently available evidence,” the researchers wrote.

However, results from more studies directly comparing DBS with focused-ultrasound LS are needed, they advised.

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Most Untreated Parkinson’s Patients Have Non-Motor Symptoms, Study Shows

non-motor symptoms

Non-motor symptoms are common among patients with Parkinson’s disease who have not yet received any treatment, and the type of symptoms differs between men and women and onset age groups, a study shows.

The study, “Gender and onset age related-differences of non-motor symptoms and quality of life in drug-naïve Parkinson’s disease,” was published in the journal Clinical Neurology and Neurosurgery.

Parkinson’s disease is mostly recognized by its motor symptoms, such as tremor and postural instability. Several non-motor symptoms, including sleep disorders, neuropsychiatric disturbances, and sensory deficits, have also been reported in Parkinson’s patients at both the early and late stages of the disease.

Increasing evidence suggests that these non-motor symptoms can precede the onset of Parkinson’s motor manifestations and have a significant impact on patients’ quality of life.

Studies addressing the prevalence and nature of Parkinson’s non-motor symptoms have been widely discussed in the general Parkinson’s population, mainly in patients receiving anti-parkinsonian therapy. However, the presence of non-motor symptoms may be confounded by the fact that many of these symptoms arise as part of therapy-related side effects.

In this study, a team of researchers evaluated the prevalence of non-motor symptoms in 569 Chinese patients with Parkinson’s disease who had not yet been treated with any approved therapy.

“Untreated PD [Parkinson’s disease] patients represent a suitable model, which is good for exploring the clinical expression of NMS [non-motor symptoms] as well as motor symptoms,” the researchers wrote.

The team wanted to explore the gender and onset age-related non-motor symptom profiles and investigate the determinants of quality of life in these patients.

Participants were between the ages of 45 and 70 and had a mean disease duration of two years. Approximately 51.7% were women, 18.6% had early-onset disease, and overall patients showed bilateral disease without impairment of balance, as determined by a score of 1.9 on the modified Hoehn and Yahr (H&Y) staging scale.

The mean score on the Unified Parkinson’s Disease Rating Scale (UPDRS III), which assesses the motor signs of Parkinson’s disease, was 21.7, with men exhibiting significantly higher (worse) scores than females.

A total of 552 patients had at least one Parkinson’s non-motor symptom, with 74% reporting sleep disorder or fatigue and 62.7% attention or memory impairments. The rarest manifestation was perceptual problems or hallucinations, which affected 3.7% of patients.

Men showed a higher incidence of urinary and sexual dysfunction, and a significantly lower incidence of sleep issues or fatigue, mood changes or apathy, and attention or memory impairments than women.

The team also found that patients with late-onset disease had a significantly higher incidence of perceptual problems or hallucinations, attention or memory deficits, as well as gastrointestinal, urinary, and sexual dysfunctions than early-onset Parkinson’s patients.

Overall, patients who were depressed and those who had worse non-motor symptoms, in particular sleep problems or fatigue, mood alterations or apathy, attention or memory impairments, or gastrointestinal symptoms, were found to have a poorer quality of life.

“Our study suggests that NMS is common in drug-naïve PD patients,” the researchers wrote.

“NMS, especially sleep/ fatigue, mood/apathy, attention/memory, and gastrointestinal symptoms, are dramatic determinants on decreased QoL [quality of life] in PD patients,” they added. “Management of non-motor symptoms is of great importance to improve the quality of life of early stage Parkinson’s disease patients.”

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Spectramax Light Therapy Shows Promise in Easing Parkinson’s Non-motor Symptoms


PhotoPharmics’s Spectramax light therapy reduces disease severity, lessens non-motor symptoms, and improves the quality of life of Parkinson’s patients, according to recent results of a controlled clinical study.

The study,“Double-blind controlled trial of Spectramax™ light therapy for the treatment of Parkinson’s disease patients on stable dopaminergic therapy” was presented at the International Congress of Parkinson’s Disease and Movement Disorders (MDS), held Oct. 5-9, in Hong Kong, China.

Besides the well-known motor symptoms, Parkinson’s disease also is characterized by non-motor symptoms, such as cognitive impairment, sleep disturbances, depression, and pain.

These non-motor symptoms may occur years before Parkinson’s hallmark loss of dopamine-producing nerve cells and motor symptoms’ onset and usually are resistant to dopaminergic medications.

Parkinson’s patients also have a dysregulated circadian rhythm — the natural “body-clock” that regulates essential functions such as sleep, rest-activity rhythm, and metabolism — which has been increasingly associated with the development of the disease’s motor and non-motor symptoms.

Previous preclinical studies have suggested that light therapy improves the circadian rhythm and may be an effective therapy for both motor and non-motor features of Parkinson’s disease.

“Therapeutic light is the most powerful tool for circadian regulation, and based on our experience in treating circadian-related disorders with specific bandwidth phototherapy, we believe we can make a major difference in treating PD,” Dan Adams, PhotoPharmics’s science officer, said in a press release.

In the randomized, double-blind, clinical study (NCT02175472), PhotoPharmics evaluated the safety and effectiveness of Spectramax light therapy in Parkinson’s patients on stable dopaminergic therapy.

The trial enrolled 92 Parkinson’s patients 45 years or older at three centers in the U.S. and Europe. Participants were randomized to receive one hour of either light therapy (45 patients) or a placebo light (47 patients) every evening over six months. The placebo was a light therapy with a bandwidth that was not thought to be biologically active.

Patient’s disease severity (including motor and non-motor symptoms), sleep disturbances, anxiety, depression, and quality of life were assessed before and after six months of treatment through several validated methods.

According to PhotoPharmics’ website, the company’s Spectramax device, which provides strong but harmless doses of light in specific wavelengths, was mainly set on a table or desk at the participants’ home. This way, patients were able to do several activities — such as read, watch TV, and eat a meal — while receiving the light therapy.

After six months of light therapy, patients showed a clinically meaningful improvement on disease severity — assessed through the Movement Disorders Society-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) — compared with patients in the placebo group.

Treated patients also showed a significant reduction in non-motor symptoms (measured through Part 1 of the MDS-UPDRS), a significant improvement in their quality of life (assessed using the Parkinson’s Disease Questionnaire (PDQ-39)), and an almost statistically significant reduction in daytime sleepiness (measured through the Epworth Sleepiness Scale), compared with those receiving only standard dopaminergic treatment.

Spectramax light therapy was well-tolerated, with dry eye, teary eye, and eye strain being the most common side effects.

These results are a “significant milestone for patients with Parkinson’s disease and showcases what may be the only adjunctive therapy to improve Parkinson’s disease symptoms on top of the dopaminergic medications that patients are likely already taking,” said Kent Savage, PhotoPharmics’ CEO.

PhotoPharmics noted that larger double-blind studies are required to confirm these results, and that the company plans to conduct additional clinical trials to further investigate light therapy in neurodegenerative diseases.

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Non-Motor Symptoms During Wearing-off Periods Associated with Worse Quality of Life in Parkinson’s Patients

Parkinson’s patients with non-motor symptoms during “wearing-off” periods — when symptoms return as their medication wears off — have a significantly worse quality of life compared to patients who only experience the return of motor symptoms, a new study shows.
The study, “Motor and non-motor wearing-off and its impact in the quality of life of patients with Parkinson’s disease,” was published in the journal Arquivos de Neuro-Psiquiatria.
Motor fluctuations refer to the alterations between periods of being “on,” during which a Parkinson’s patient experiences a positive response to medication (generally levodopa), and being “off,” during which the medication wears off and symptoms return.
“Off” periods are more common as the disease progresses and people take medication for a longer period of time.
Motor fluctuations in patients with Parkinson’s disease have been studied extensively. But little is known about non-motor symptoms during “on” and “off” periods.
Motor wearing-off includes the re-emergence of motor symptoms such as tremor, rigidity, and bradykinesia (slowness of movement). Non-motor symptoms include anxiety, fatigue, and depression.
Non-motor symptoms have a significant impact on a patient’s quality of life, as the burden can often be more disabling compared to motor symptoms.
Researchers have developed tools to assess wearing-off in Parkinson’s patients. In particular, the wearing-off questionnaire (WOQ-19) has been used in studies as a screening tool to identify which patients experience the wearing-off phenomena.
The team conducted a cross-sectional study to assess the impact of motor and non-motor wearing-off on daily activities and quality of life in Parkinson’s patients. All patients were evaluated using the movement disorders society unified Parkinson’s disease rating scale (MDS-UPDRS, to follow disease progression), the WOQ-19, and the Parkinson’s disease questionnaire-8 (PDQ-8) to assess quality of life.
Among the 271 patients included, 73.4% had wearing-off. Researchers then classified those patients according to the type: 63.8% had mixed wearing-off (motor and non-motor), 32.7% motor, and 3.5% non-motor.
As expected, the MDS-UPDRS part I total score — which assesses non-motor aspects of daily living — was higher (worse) in the non-motor wearing-off group. Interestingly, there were no differences in MDS-UPDRS part I score between patients in the mixed wearing-off group and those who did not experience wearing off.
“This finding suggests that patients with motor wearing-off may have a lower overall burden of non-motor symptoms, while patients with mixed or no wearing-off have similar burdens,” researchers said. “Conversely, patients with non-motor fluctuations also have a higher burden of non-motor symptoms.”
Parkinson’s patients in the non-motor wearing-off group also had the worst score in the PDQ-8, followed by patients in the mixed wearing-off group. On the other hand, patients with no wearing-off and those with only motor wearing-off had a better quality of life.
“[T]he present study shows that both motor and non-motor fluctuations have an impact on activities of daily living and quality of life. However, the presence of non-motor fluctuations did significantly worsen the quality of life,” the authors wrote.
“The identification and assessment of non-motor fluctuations in the day-to-day clinical practice could result in the improvement of the quality of life of patients with [Parkinson’s disease],” the team concluded.
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Rock Steady Boxing: In the Beginning

rock steady boxing

In September 2017, I started to take Rock Steady Boxing (RSB) classes. RSB has truly made a remarkable impact on improving the quality of my life.

What’s it all about?

The RSB classes I attend twice a week average about 10 to 16 people per class. The ages of the participants vary, and we are all at various stages of the disease. Many participants deal with obvious symptoms like tremors. Some are like me, in the earlier stages of PD with no glaring symptoms.

My late husband was a well-known triathlon swim coach. Steve and I were together for over 33 years, and I was immersed in his world with athletes of all levels. However, I’ve found that the drive, dedication, and commitment of the RSB participants equals or exceeds that of most of the athletes I have known. Everyone I have met in RSB classes is determined to fight this cruel and insidious disease of countless losses. None will let PD get the best of them.

In 75 minutes, we work on our stamina, strength, speed, cognitive skills, and balance. We are encouraged to count loudly and also perform fine motor skill exercises. It is like a group physical therapy session, with the bonus of mental therapy. We celebrate each other’s triumphs, no matter how insignificant they may seem to the casual observer. As an example, if a participant succeeds for the first time to perform a “skip,” we will all loudly cheer him or her on. When we literally stumble or fail at a particular drill, there are more than enough sympathetic shoulders to lean on.

Laughter is the best medicine!

We will laugh at ourselves when the sometimes absurdity of our disease symptoms threaten to dampen our spirits. During our heavy bag punching drills, our coach will sometimes tell us to go faster. I think this is hilarious since “fast” is a foreign concept to me now. Every time she asks us to increase our speed, I break out into belly laughs.

But the tears do flow

However, at some point or another during a class, many of us will experience highly-charged emotional moments. It took only a month of taking RSB classes for me to have my first meltdown.

My emotions got the best of me as I was doing a footwork drill. This was a move I had once done with grace, rhythm, and fluidity, back when I used to dance. Now when I do this step, I feel like I have lead legs, and it takes every bit of my willpower to recreate just the mechanics (forget about the grace of a ballerina) of a once-simple step for me.

Another time, we “shoveled snow.” Using a spoon with our non-dominant hand, we were challenged to fill a bowl with as many cotton balls as we could in 30 seconds. I am right-handed, and my left side is most affected by PD. It was a huge struggle for me even to get nine cotton balls in the bowl using my left hand. My eyes started to well up with tears as I was doing the exercise. I felt so uncoordinated and helpless, trying to will my body to quickly perform such a simple task. The 30 seconds seemed like an eternity, but I was finally able to finish without crying mainly due to the support and kind encouragement from other participants. Seeing the beaming smiles on some of my fellow boxers’ faces bolstered my spirits. It is ironic how failing at one small mindless task can bring a person to tears, yet, if performed well it can be so satisfying, and such a joy.

While it may seem inconsequential, performing a fine motor skill task like “shoveling snow” can become monumental and overwhelming. This is just one small example of the simple movements I had always taken for granted that PD has robbed from me. I suspect that most of my fellow boxers in class that day truly empathized with me. Although their PD challenges may be different and unique to them, I believe they, too, have their moments of despair when they are reminded of what they have lost to this disease. PD affects everyone so differently, and while one class member may perform a drill well, another may struggle tremendously with it. There seems to be no rhyme or reason as to what any one person loses as a result of this disease. One thing we are all cognizant of is that PD does not discriminate. We also realize that what we can easily do today may be robbed from us tomorrow.

To be continued …

Since there is so much to share about my RSB journey, next month, I will continue talking about my boxing experiences.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Italian Self-rating Scale for Quality of Life in Parkinson’s Patients Validated in Study

quality of life scale

The Italian version of the scale most often used to determine quality of life in patients with Parkinson’s disease (PD) — the self-report 39-Item Parkinson’s Disease Questionnaire (PDQ-39) — has been validated for Italian patients, a study reports.

The Italian form of the survey (PDQ-39-IT) can now reliably be used in clinical practice and research to measure the effect of treatments in the quality of life of Italian Parkinson’s patients.

The study, “Quality of life in Parkinson’s disease: Italian validation of the Parkinson’s Disease Questionnaire (PDQ-39-IT),” was published in the journal Neurological Sciences.

The PDQ-39 has been the most widely used measure of health status and quality of life in Parkinson’s patients. It is helpful not only for clinical practice but also for research as an outcome measure in clinical trials testing potential treatments.

It is a scale designed specifically for Parkinson’s patients, containing 39 questions that ask how often patients have difficulties in eight domains: mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, and bodily discomfort.

Since its development in 1995, the questionnaire has been translated, culturally adapted, and validated into 13 different languages.

Before a test can be employed for research or examination purposes, its validity needs to be ensured, and although an Italian translation and adaptation of this test was launched in 2008 — the PDQ-39-IT — its validity had never been verified. 

Researchers have now tested the PDQ-39-IT in 104 patients diagnosed with Parkinson’s disease (mean age 65.7, mean duration of symptoms 7.4 years). Participants were recruited from June to October 2017 from two university hospitals in Rome: the Sapienza University and Tor Vergata University.

An important measure of a scale’s reliability is its internal consistency — that is, how closely related the items within a test are as a group.

To address this, researchers used a statistical coefficient called the Cronbach’s alpha. Except for social support, all other dimensions surveyed by PDQ-39-IT displayed a high Cronbach’s alpha of 0.70 or above. They were also within the range of those found in the original version of the test.

Researchers also examined another measure of a test’s coherence, called test-retest reliability. A subgroup of 35 patients was asked to complete the survey twice, with an interval of three days between the surveys. The scores obtained in the two surveys were compared. There was a high level of agreement between the test and the retest scores for all dimensions tested.

As a measure of the test’s validity, researchers compared the scores obtained in PDQ-39-IT for each patient with those obtained with the Italian version of  36-Item Short Form Health Survey (SF36) — another well-established patient-reported measure of health status.

All dimensions of PDQ-39-IT showed a positive and significant association with the SF-36 questionnaire, again demonstrating the test’s validity.

Overall, the study indicates that PDQ-39-IT “is an acceptable, valid, and reliable tool to measure the quality of life of Italian [Parkinson’s] patients,” researchers wrote.

“It provides Italian clinicians with a valid, reliable, rapidly administrable, and standardized scale to measure quality of life in [Parkinson’s disease], thereby enabling clinicians in all healthcare and rehabilitation professions to make informed decisions,” they added.

In addition, the test is a valuable tool to address the outcome of interventions over the quality of life of Italian Parkinson’s patients participating in clinical trials.

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Computer Model to Select Parkinson’s Patients Who Benefit Most from Deep Brain Stimulation

deep brain stimulation

Cleveland Clinic researchers have developed a new model that accurately predicts whether quality of life would improve in Parkinson’s disease patients after deep brain stimulation, a new study shows.

The tool may help select those who will benefit the most from the procedure, guiding patients and physicians in the decision-making process.

The study, “Quality of Life Improvement Following Deep Brain Parkinson’s Disease: Development of a Prognostic Model,” was published in the journal Neurosurgery.

Deep brain stimulation (DBS), an established treatment for Parkinson’s disease, is a neurosurgical procedure that involves implanting a medical device called a neurostimulator in the brain, which will send electrical impulses to specific brain regions.

While several studies have discussed the potential benefits of using deep brain stimulation, others have reported DBS-associated complications, making it hard for patients to decide whether they should undergo the procedure.

One of the most important markers of success after a surgical procedure is the evaluation of a patient’s quality of life (QoL). Researchers have become very interested in determining the factors that can best predict QoL improvements after DBS surgery.

Investigators attempted to develop a model that can help predict improvement in QoL after surgery for deep brain stimulation.

Specifically, they made use of preoperative patient characteristics and imaging data that would be available in most centers that regularly perform deep brain stimulation.

QoL was measured using the Parkinson’s Disease Questionnaire-39 (PDQ-39). Then, potential predictive factors — such as patient demographics, clinical presentation, imaging scans, and motor and psychological testing — were analyzed for their impact on QoL scores post-surgery.

Among the 67 patients in the study, 36 (53.7%) experienced an improved quality of life following surgery. Researchers discovered that there were five variables that significantly contributed to the QoL outcome.

The first was the number of years since the onset of symptoms. An analysis showed that for every additional year since symptoms onset, patients demonstrated an 11% greater chance of improvement in QoL.

The second variable was bilateral DBS implantation. Essentially, patients who underwent deep brain stimulation implants in both hemispheres of the brain were six times more likely to have an improvement in QoL compared to those who only underwent right-sided DBS.

The third was the UPDRS-III total score, which assesses the motor signs of Parkinson’s disease. Researchers showed that for every extra 1% “on” vs. “off” medication change in UPDRS-III total score, the odds of quality of life improvement increased by 4.5%.

“On” in UPDRS-III refers to patients who are receiving medication and have a good response, while “off” refers to times when patients have a poor response in spite of taking medications. Therefore, patients who are responsive to medication are more likely to experience an improvement in QoL after deep brain stimulation.

The fourth variable was the levodopa-equivalent daily dose. Results showed that for every every additional 100 units of levodopa-equivalent daily dose that a patient was prescribed preoperatively, the improvement in QoL increased by 12.4%

Finally, for every one-point increase in the preoperative PDQ-39 score — which indicates worse QoL — patients experienced a 7.3% increase in odds of improvement after DBS.

To develop the predictive model, researchers used three of these factors: change in PDQ-39, percent change in UPRS-III, and years since symptom onset. These three factors were able to collectively predict improvement in QoL after DBS with an 81% accuracy.

“Our data may serve as the foundation to further refine a clinically relevant prognostic tool that would assist the decision-making process for clinicians and DBS multidisciplinary teams assessing patient candidacy for surgery,” investigators wrote.

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Most Parkinson’s Patients Show Non-movement Symptoms Like Depression, Sleep Problems, Survey Finds

non-movement symptoms

Nearly all Parkinson’s disease patients experience non-movement symptoms, such as sleep disturbances or depression, which affect their quality of life as much as movement-related symptoms, according to an online survey of 700 participants, nearly 600 of whom completed it in full.

Patients’ caregivers are those most likely to detect non-movement manifestations of the disease.

These are the two main conclusion of the online survey, conducted by the Parkinson & Movement Disorder Alliance (PMDAlliance) with the support of Acadia Pharmaceuticals, as part of Parkinson’s Disease Awareness Month.

Of the survey’s respondents, 286 were Parkinson’s patients; 377 were care partners; 10 were noncare partners or family members of Parkinson’s patients; and 27 were categorized as “others.”

The survey, conducted online with members of the PMDAlliance from March 19-31, 2018, revealed that 90% of Parkinson’s patients show non-movement symptoms, manifested as sleep problems (84%), cognitive challenges (75%), anxiety (65%), depression (55%), hallucinations (41%), and delusions (24%).

The negative impact of non-movement symptoms on quality of life was recognized by 84% of the respondents, with nearly half of the patients (49%) finding coping with these symptoms even more challenging that Parkinson’s-related movement symptoms.

The non-movement side of the disease has a generally negative impact on the lives of patients, affecting their social activities with friends and family (70%), intimacy with their partner (68%), and with daily activities, such as household chores (68%) and running errands (67%).

“This survey clearly shows that non-movement symptoms of Parkinson’s disease make it difficult for people with Parkinson’s and their care partners to participate in activities most of us take for granted — running errands, going to the movies, eating out, or simply cooking and cleaning,” Sarah Jones, the CEO of PMDAlliance, said in a press release.

“We urge the entire Parkinson’s community — from the people with Parkinson’s and care partners, to healthcare professionals and support groups — to continue initiating conversations about Parkinson’s symptoms, especially the non-movement ones that greatly impact day-to-day living,” Jones said.

Despite its negative impact on quality of life, care partners detected the non-movement side of Parkinson’s two to four times more than patients themselves.

Hallucinations were observed by 51% of care partners and 23% of patients, and delusions were spotted by 32% of caregivers compared to 8% of patients.

These results both highlight and correlate with literature reporting that non-movement symptoms, like hallucinations and delusions, are often not reported to clinicians — only 10-20% of the cases are actually reported. This may be due to embarrassment or a misunderstanding that the symptoms are associated with the disease, since most of the time devoted to a patient’s visit with a doctor is generally focused on motor symptoms.

Other non-motor symptoms, such as cognitive challenges, anxiety, and depression were more easily detected by caregivers than patients.

“Parkinson’s disease changes how both people with PD [Parkinson’s disease] and care partners think about their future and cope with day-to-day living,” Jones said.

“Care partners are particularly attuned to how the disease is progressing in their loved one, which is why PMDAlliance added new educational resources to our website about the onset and impact of non-movement symptoms of PD,” she said.

“We want to encourage people to report symptoms to their healthcare providers, seek support, and participate in the community. This spring, we’re also hosting several Learn, Live, Connect educational conferences across the country where people can learn more about Parkinson’s disease and its many symptoms,” Jones added.

Doral Fredericks, PharmD (doctor of pharmacy), vice president of medical affairs at Acadia Pharmaceuticals, said Acadia is “honored to partner with PMDAlliance to highlight the impact of non-movement symptoms on both people with Parkinson’s and their care partners.

“We encourage people with Parkinson’s and caregivers to join the effort to raise awareness about this important aspect of Parkinson’s disease,” Fredericks added.

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Source: Parkinson's News Today