Improving Documentation of Impulse Control Disorders at a Movement Disorder Program During the COVID-19 Pandemic.

Background and Objectives: Impulse control disorders (ICD) are a group of behaviors in Parkinson disease (PD), (compulsive buying, gambling, binge eating, craving sweets, and hypersexuality) that occur in up to 20% of individuals with PD, sometimes with devastating results. We sought to determine the rate of ICD screening based on 2020 quality measures for PD care by the American Academy of Neurology. Methods: We conducted a quality improvement project to document and improve physician ICD screening in a tertiary movement disorder program. Serial medical records were reviewed for 5 weeks before and 13 weeks after an educational session and documentation tool deployments in 2020. Inclusion criteria included the following: idiopathic PD, PD dementia (PDD), or dementia with Lewy bodies (DLB). Individual encounters for 109 patients preintervention and 276 patients postintervention were reviewed. Results: There was no difference between the preintervention and postintervention (pre-IG vs post-IG, respectively) in terms of age, male to female ratio, proportion of patients with PD, PDD, or DLB, duration of diagnosis, or levodopa equivalents. There was a shift to increased ICD queries above the median for the study period (28.8%) for 7 consecutive weeks in post-IG. The frequency of ICD diagnosis was not different from pre-IG to post-IG (95% confidence interval, 0-32.6 vs 2.7-13.4%, p = 0.444). Discussion: ICD queries immediately after ICD education and dissemination of documentation tools increased. Both preintervention and postintervention groups were similar in demographic and clinical characteristics. This program was instituted at the height of wave 2 of the COVID-19 pandemic in Alberta during staff redeployment and 100% shift to telemedicine ambulatory care. Our results demonstrate that amid a crisis, quality improvement can still be effective with education and provision of tools for clinicians.

Palliative care in Parkinson disease and related disorders.

Although neuropalliative care is a relatively new field, there is increasing evidence for its use among the degenerative parkinsonian syndromes, including idiopathic Parkinson disease, progressive supranuclear palsy, multiple system atrophy, dementia with Lewy bodies, and corticobasal syndrome. This chapter outlines the current state of evidence for palliative care among individuals with the degenerative parkinsonian syndromes with discussion surrounding: (1) disease burden and needs across the conditions; (2) utility, timing, and methods for advance care planning; (3) novel care models for the provision of palliative care; and 4) end-of-life care issues. We also discuss currently unmet needs and unanswered questions in the field, proposing priorities for research and the assessment of implemented care models.

Multiple System Atrophy Caregivers' Experience: A Mixed Methods Study.

BACKGROUND: Multiple system atrophy (MSA) is a rare Parkinson-plus syndrome with rapid progression and a high symptom burden. The experience of caregivers of people with MSA has not been closely examined. We therefore sought to document the impact of MSA on caregivers using a mixed methods approach. METHODS: Patients and caregivers were recruited from a movement disorders program in Edmonton, Canada. Participants completed the following survey instruments based on their own or their loved one's symptoms: 36-Item Short-Form Health Survey (SF-36), Multiple System Atrophy health-related Quality of Life scale (MSA-QoL), and Hospital Anxiety and Depression Scale (HADS). Caregivers also completed the Zarit Burden Interview and HADS based on their own experience. Qualitative data were obtained through semi-structured interviews. RESULTS: Nine people with MSA (PwMSA) (age range: 48-78 years) and 11 caregivers (49-76 years) participated. All completed surveys; 7 PwMSA and 10 caregivers were interviewed. Eight PwMSA had the parkinsonian type of MSA (MSA-P) and one a mixed type. Caregivers had on average mild-moderate caregiver burden and mild anxiety. Caregiver burden and anxiety were correlated. Qualitative subthemes under the caregiving theme included keeping the patient safe, caregivers' own health, and communication symptoms cause frustration. The rapid progression of illness was bewildering to caregivers and increased their workload. Public home care services were invaluable to caregivers' maintaining their loved ones at home. Caregivers were inventive in finding sources of hope and quality of life for their loved ones. CONCLUSION: Publicly funded home care was essential for caregivers of PwMSA in this study. Caregiver support is needed to provide this unrecognized workforce with information and resources to face this challenging condition.

Key concepts and opportunities.

Neuropalliative care is an emerging field dedicated to applying palliative care approaches to meet the needs of persons living with neurologic illness and their families. The development of this field acknowledges the unique needs of this population, including in terms of neuropsychiatric symptoms, the impact of neurologic illness on personhood, and the logistics of managing neurologic disability. In defining the goals of this field, it is important to distinguish between neuropalliative care as an approach to care, as a skillset, as a medical subspecialty, and as a public health goal as each of these constructs offers their own contributions and opportunities. As a newly emerging field, there are nearly unlimited opportunities to improve care through research, clinical care, education, and advocacy.

Cannabinoids in movement disorders.

INTRODUCTION: On the basis of both scientific progress and popular lore, there is growing optimism in the therapeutic potential of cannabis (marijuana) and cannabinoid-based chemicals for movement disorders. There is also notable skepticism regarding the scientific basis for this therapeutic optimism and significant concerns regarding the safety and regulation of cannabinoid products, particularly those available without prescription. METHODS: In recognition of the high interest and controversial nature of this subject, the meeting committee of the International Parkinson and Movement Disorders Society arranged for a talk on cannabis at the 2019 annual meeting's Controversies in Movement Disorders plenary session. This paper summarizes the highlights of this session. RESULTS: The endocannabinoid system is strongly tied to motor function and dysfunction, with basic research suggesting several promising therapeutic targets related to cannabinoids for movement disorders. Clinical research on cannabinoids for motor and nonmotor symptoms in Parkinson's disease, Huntington's disease, Tourette's syndrome, dystonia, and other movement disorders to date are promising at best and inconclusive or negative at worst. Research in other populations suggest efficacy for common symptoms like pain. While social campaigns against recreational cannabinoid use focus on cognitive changes in adolescents, the long-term sequelae of regulated medical use in older adults with movement disorders is unknown. The overall risks of cannabinoids may be similar to other commonly used medications and include falls and apathy. CONCLUSION: Further research is greatly needed to better understand the actual clinical benefits and long-term side effects of medical cannabis products for movement disorders indications and populations.

Movement disorders in COVID-19 times: impact on care in movement disorders and Parkinson disease.

PURPOSE OF REVIEW: The purpose of this review is to outline the impact of the COVID-19 pandemic on movement disorder holistic care, particularly in the care of people with Parkinson disease (PWP). RECENT FINDINGS: As the pandemic unfolds, a flurry of literature was published regarding the impact of COVID-19 on people with Parkinson disease including the direct impact of infection, availability of ambulatory care, loss of community-based team care, and acceptability of telemedicine. SUMMARY: COVID-19 has impacted the care of PWP in numerous ways. Recognizing infection in PWP poses challenges. Specific long-term complications, including emerging reports of long COVID syndrome is a growing concern. Caregivers and PWP have also been impacted by COVID-19 social isolation restrictions, with radical changes to the structure of social networks and support systems globally. In a matter of weeks, the global community saw an incredible uptake in telemedicine, which brought benefits and pitfalls. As PWP adapted to virtual platforms and the changing architecture of care delivery, the pandemic amplified many preexisting inequities amongst populations and countries, exposing a new 'digital divide'.

What's in the Sauce? The Specific Benefits of Palliative Care for Parkinson's Disease.

CONTEXT: Increasing evidence demonstrates the benefits of palliative care among individuals with Parkinson's disease and related disorders (PDRD), but the critical components that contribute to therapeutic effects are not well understood. OBJECTIVES: To determine the specific items most responsive to a palliative care intervention in PDRD and identify key correlates of improvement in patient and care partner outcomes. METHODS: The main trial was a pragmatic comparative effectiveness trial of outpatient integrated palliative care compared to standard care among participants with PDRD (NCT02533921), showing significantly higher patient QOL at six months and lower care partner burden at 12 months. We used longitudinal regression models to analyze changes in subdomains of patient QOL and care partner burden and Spearman correlations to evaluate key correlates of change scores in patient and care partner outcomes. We performed a secondary analysis of data from 210 patients and 175 care partners. RESULTS: Compared to controls, patients in the intervention reported greater improvement in perceptions of the "self as a whole" at six months (coeff = 0.22, P < 0.05) and care partners reported greater reduction in stress, anger, and loss of control at 12 months (coeff = -.40, -0.25, -0.31, P < 0.05). Positive change in numerous patient non-motor symptoms and grief correlated with improved patient QOL, reduced patient anxiety, and increased care partner spirituality. Alleviation of care partner anxiety and depression correlated with reduced care partner burden. CONCLUSION: Specific benefits of an integrated palliative approach in PDRD include improvement in patient holistic self-impressions, care partner self-efficacy, and non-motor symptoms.

Access and Attitudes Toward Palliative Care Among Movement Disorders Clinicians.

BACKGROUND: Neuropalliative care is an emerging field for those with neurodegenerative illnesses, but access to neuropalliative care remains limited. OBJECTIVE: We sought to determine Movement Disorder Society (MDS) members' attitudes and access to palliative care. METHODS: A quantitative and qualitative survey instrument was developed by the MDS Palliative Care Task Force and e-mailed to all members for completion. Descriptive statistics and qualitative analysis were triangulated. RESULTS: Of 6442 members contacted, 652 completed the survey. Completed surveys indicating country of the respondent overwhelmingly represented middle- and high-income countries. Government-funded homecare was available to 54% of respondents based on patient need, 25% limited access, and 21% during hospitalization or an acute defined event. Eighty-nine percent worked in multidisciplinary teams. The majority endorsed trigger-based referrals to palliative care (75.5%), while 24.5% indicated any time after diagnosis was appropriate. Although 66% referred patients to palliative care, 34% did not refer patients. Barriers were identified by 68% of respondents, the most significant being available workforce, financial support for palliative care, and perceived knowledge of palliative care physicians specific to movement disorders. Of 499 respondents indicating their training in palliative care or desire to learn these skills, 55% indicated a desire to gain more skills. CONCLUSIONS: The majority of MDS member respondents endorsed a role for palliative care in movement disorders. Many members have palliative training or collaborate with palliative care physicians. Although significant barriers exist to access palliative care, the desire to gain more skills and education on palliative care is an opportunity for professional development within the MDS. © 2021 International Parkinson and Movement Disorder Society.

Dopaminergic Therapy for Motor Symptoms in Early Parkinson Disease Practice Guideline Summary: A Report of the AAN Guideline Subcommittee.

BACKGROUND AND OBJECTIVES: To review the current evidence on the options available for initiating dopaminergic treatment of motor symptoms in early-stage Parkinson disease and provide recommendations to clinicians. METHODS: A multidisciplinary panel developed practice recommendations, integrating findings from a systematic review and following an Institute of Medicine-compliant process to ensure transparency and patient engagement. Recommendations were supported by structured rationales, integrating evidence from the systematic review, related evidence, principles of care, and inferences from evidence. RESULTS: Initial treatment with levodopa provides superior motor benefit compared to treatment with dopamine agonists, whereas levodopa is more likely than dopamine agonists to cause dyskinesia. The comparison of different formulations of dopamine agonists yielded little evidence that any one formulation or method of administration is superior. Long-acting forms of levodopa and levodopa with entacapone do not appear to differ in efficacy from immediate-release levodopa for motor symptoms in early disease. There is a higher risk of impulse control disorders associated with the use of dopamine agonists than levodopa. Recommendations on initial therapy for motor symptoms are provided to assist the clinician and patient in choosing between treatment options and to guide counseling, prescribing, and monitoring of efficacy and safety.

Clinical perception and management of Parkinson's disease during the COVID-19 pandemic: A Canadian experience.

BACKGROUND: The COVID-19 pandemic has necessitated the social isolation of the population and the rapid implementation of remote care for patients with neurodegenerative diseases. The objective of this study was to explore the perceived impact of confinement in patients with Parkinson's disease and document the effects of gender and living environment. METHODS: We recruited two cohorts from the Canadian provinces of Québec and Alberta, which differed in the dynamics of COVID-19 spreading at the time of the study, and administered a questionnaire on the perceived effects of confinement on daily living and disease management. RESULTS: The data reveals that approximately half of the patients experienced a change in one or more clinical symptoms, with differences observed between gender (e.g. day-to-day changes in slowness in men, aggravated headaches in women) and geographic location (e.g. increased depression in Alberta but reduced sleep quality in Québec). Furthermore, participants identifying as women or living in Alberta implemented more frequently home or online exercise. Lastly, high levels of satisfaction with phone or video consultations did not translate into a sustained interest to pursue this mode of healthcare. CONCLUSIONS: This study suggests that COVID-19-related confinement affected Parkinson's disease manifestation and management. Patients also reported varying levels of interest to continue remote care. A number of differences reported in our study were seemingly related to gender and living environment.

DBS-Edmonton App, a Tool to Manage Patient Expectations of DBS in Parkinson Disease.

OBJECTIVE: After deep brain stimulation (DBS) for Parkinson disease (PD), patients often do not report the level of satisfaction anticipated. This misalignment can relate to patients' expectations for an invasive treatment and insufficient knowledge of DBS's effectiveness in relieving motor and nonmotor symptoms (NMS). Patient satisfaction depends on expectations and goals for treatment. We hypothesized that improving patient education with a patient-centered shared decision-making tool emphasizing autonomy would improve patient satisfaction and clinical outcome. METHODS: We developed a computer application (DBS-Edmonton app), allowing patients with PD to input their symptoms and to learn how effective DBS addresses their prioritized symptoms. Sixty-two volunteers referred for DBS used the DBS-Edmonton app. DBS-related knowledge and patient perceptions of the DBS-Edmonton app were assessed with pre- and post-use questionnaires. Fourteen of 24 patients who proceeded to DBS achieved optimization at 6 months. Perceived functional improvement was assessed and compared with 12 control patients with DBS who did not use the DBS-Edmonton app. RESULTS: All 62 volunteers considered the DBS-Edmonton app helpful and would recommend it to others. There was improved knowledge about how NMS and axial symptoms respond to DBS. Postoperatively, there was no significant difference in symptoms improvement assessed by standard scales between the groups. Volunteers who used the DBS-Edmonton app had greater satisfaction (p = 0.014). CONCLUSION: This interventional study showed that the DBS-Edmonton app improved DBS-related knowledge and patient satisfaction, independent of the objective motor outcome. It may assist patients in deciding to proceed to DBS and can be easily incorporated into practice to improve patient satisfaction post-DBS.

Psychological Impact of Parkinson Disease Delusions on Spouse Caregivers: A Qualitative Study.

There is growing research on carers of people with Parkinson's disease (PD) experiences. However, the impact on carers by PD delusions is not specifically examined. We conducted a qualitative study using semi-structured interviews of spouse carers of PD patients with delusions. Thematic analysis was employed using MAXQDA 2018. Twelve spouse participants (SPs) were interviewed. Four themes emerged: Managing incredulity: trying to make sense of delusion content; Hypervigilance: constant alertness to bizarre and threatening discourse and behavior; Defensive strategizing: anticipating delusions and potential consequences; Concealing and exposing: ambivalence about disclosing the effect of delusions yet wanting support. SPs reported effects on their emotional well-being and marital relationship and challenges to an orderly, predictable life. SPs were reluctant to share their experiences due to delusion content (often infidelity and sexual in nature) and a desire to protect their spouses' image. SPs' awareness of the potential for delusional thought was low prior to their occurrence. Conclusions: education surrounding potential neurobehavioral changes should occur for patients and carers. Clinicians should be aware that the impact of delusions on carers is often greater than disclosed in clinical interviews. Interdisciplinary teams speaking separately to spousal carers may improve disclosure and delivery of appropriate psychological support.

White matter hyperintensities in patients with Parkinson's disease: A systematic review and meta-analysis.

INTRODUCTION: Mechanisms driving neurodegeneration in Parkinson's disease (PD) are unclear and neurovascular dysfunction may be a contributing factor. White matter hyperintensities (WMH) are commonly found on brain MRI in patients with PD. It is controversial if they are more prevalent or more severe in PD compared with controls. This systematic review aims to answer this question. METHODS: A systematic search of electronic databases was conducted for studies of WMH in patients with PD. A qualitative synthesis was done for studies reporting WMH prevalence or WMH scores on a visual rating scale (VRS). In studies reporting total WMH volume, the difference between patients with PD and controls was pooled using random effects meta-analysis. RESULTS: Among 3860 subjects from 24 studies, 2360 were cases and 1500 controls. Fifteen studies reported WMH scores and four studies reported the prevalence of WMH. On VRS, five studies reported no difference in WMH scores, three found higher WMH scores in PD compared to controls, three reported increased WMH scores either in periventricular or deep white matter, and four reported higher scores only in PD with dementia. In studies reporting WMH volume, there was no difference between patients with PD and controls (pooled standardized mean difference = 0.1, 95%CI: -0.1-0.4, I2 = 81%). CONCLUSION: WMH are not more prevalent or severe in patients with PD than in age-matched controls. PD dementia may have more severe WMH compared to controls and PD with normal cognition. Prospective studies using standardized methods of WMH assessment are needed.

Prognostic predictors relevant to end-of-life palliative care in Parkinson's disease and related disorders: a systematic review.

Parkinson's disease and related disorders (PDRD) are the second most common neurodegenerative disease and a leading cause of death. However, patients with PDRD receive less end-of-life palliative care (hospice) than other illnesses, including other neurologic illnesses. Identification of predictors of PDRD mortality may aid in increasing appropriate and timely referrals. To systematically review the literature for causes of death and predictors of mortality in PDRD to provide guidance regarding hospice/end-of-life palliative care referrals. We searched MEDLINE, PubMed, EMBASE and CINAHL databases (1970-2020) of original quantitative research using patient-level, provider-level or caregiver-level data from medical records, administrative data or survey responses associated with mortality, prognosis or cause of death in PDRD. Findings were reviewed by an International Working Group on PD and Palliative Care supported by the Parkinson's Foundation. Of 1183 research articles, 42 studies met our inclusion criteria. We found four main domains of factors associated with mortality in PDRD: (1) demographic and clinical markers (age, sex, body mass index and comorbid illnesses), (2) motor dysfunction and global disability, (3) falls and infections and (4) non-motor symptoms. We provide suggestions for consideration of timing of hospice/end-of-life palliative care referrals. Several clinical features of advancing disease may be useful in triggering end-of-life palliative/hospice referral. Prognostic studies focused on identifying when people with PDRD are nearing their final months of life are limited. There is further need for research in this area as well as policies that support need-based palliative care for the duration of PDRD.

Device-aided therapies for advanced Parkinson disease: insights from an international survey.

PURPOSE: In the advanced stage of Parkinson disease (PD), therapeutic interventions include device-aided therapies such as continuous subcutaneous apomorphine infusion (CSAI), levodopa-carbidopa intestinal gel (LCIG) infusion, and deep brain stimulation (DBS). Recent evidence has underlined the general lack of randomized, blinded, head-to-head studies on device-aided therapies for advanced PD. METHODS: To better clarify the real-world attitude of clinicians on this matter, we conducted an international survey of forty-four experienced movement disorder specialists regarding the management of device-aided therapies in advanced PD. RESULTS: Our international survey showed a general agreement that nowadays, motor complications are less common compared to the past (59% agreement), that guidelines to identify candidates for device-aided therapies are currently lacking (57% agreement), and that device-aided therapies will have increased demand in the future (75% agreement). CONCLUSIONS: We conclude that guidelines to assist clinicians and patients to choose device-aided therapies are required.