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1.
Can J Neurol Sci ; 50(1): 49-59, 2023 01.
Artículo en Inglés | MEDLINE | ID: mdl-34742360

RESUMEN

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.


Asunto(s)
Atrofia de Múltiples Sistemas , Calidad de Vida , Humanos , Persona de Mediana Edad , Anciano , Cuidadores , Costo de Enfermedad , Ansiedad , Encuestas y Cuestionarios
2.
Curr Opin Neurol ; 35(4): 494-501, 2022 08 01.
Artículo en Inglés | MEDLINE | ID: mdl-35787539

RESUMEN

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'.


Asunto(s)
COVID-19 , Trastornos del Movimiento , Enfermedad de Parkinson , Telemedicina , COVID-19/complicaciones , COVID-19/epidemiología , Humanos , Trastornos del Movimiento/epidemiología , Trastornos del Movimiento/terapia , Pandemias , Enfermedad de Parkinson/epidemiología , Enfermedad de Parkinson/terapia , SARS-CoV-2 , Síndrome Post Agudo de COVID-19
3.
Mov Disord ; 37(1): 182-189, 2022 01.
Artículo en Inglés | MEDLINE | ID: mdl-34431560

RESUMEN

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.


Asunto(s)
Trastornos del Movimiento , Cuidados Paliativos , Actitud , Humanos , Trastornos del Movimiento/terapia , Encuestas y Cuestionarios
4.
Artículo en Inglés | MEDLINE | ID: mdl-33789923

RESUMEN

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.

5.
Neurol Sci ; 42(7): 2961-2964, 2021 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-33550525

RESUMEN

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.


Asunto(s)
Estimulación Encefálica Profunda , Enfermedad de Parkinson , Antiparkinsonianos/uso terapéutico , Apomorfina/uso terapéutico , Carbidopa/uso terapéutico , Combinación de Medicamentos , Geles/uso terapéutico , Humanos , Infusiones Parenterales , Levodopa/uso terapéutico , Enfermedad de Parkinson/tratamiento farmacológico
6.
Mov Disord ; 33(1): 21-35, 2018 01.
Artículo en Inglés | MEDLINE | ID: mdl-28861905

RESUMEN

There are many rare movement disorders, and new ones are described every year. Because they are not well recognized, they often go undiagnosed for long periods of time. However, early diagnosis is becoming increasingly important. Rapid advances in our understanding of the biological mechanisms responsible for many rare disorders have enabled the development of specific treatments for some of them. Well-known historical examples include Wilson disease and dopa-responsive dystonia, for which specific and highly effective treatments have life-altering effects. In recent years, similarly specific and effective treatments have been developed for more than 30 rare inherited movement disorders. These treatments include specific medications, dietary changes, avoidance or management of certain triggers, enzyme replacement therapy, and others. This list of treatable rare movement disorders is likely to grow during the next few years because a number of additional promising treatments are actively being developed or evaluated in clinical trials. © 2017 International Parkinson and Movement Disorder Society.


Asunto(s)
Trastornos del Movimiento/genética , Trastornos del Movimiento/terapia , Enfermedades Raras/genética , Enfermedades Raras/terapia , Ensayos Clínicos como Asunto/métodos , Humanos , Resultado del Tratamiento
7.
Palliat Med ; 31(9): 861-867, 2017 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-28659011

RESUMEN

BACKGROUND: A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. AIM: To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. DESIGN: A cross-sectional survey study of neurologists. SETTING/PARTICIPANTS: A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. RESULTS: Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. CONCLUSION: Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.


Asunto(s)
Actitud del Personal de Salud , Neurólogos/psicología , Cuidados Paliativos/economía , Enfermedad de Parkinson/economía , Enfermedad de Parkinson/terapia , Derivación y Consulta/economía , Adulto , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y Cuestionarios , Estados Unidos
8.
Can J Neurol Sci ; 43(5): 697-702, 2016 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-27514242

RESUMEN

BACKGROUND: Parkinson's disease (PD) and other parkinsonian syndromes are chronic, progressive neurodegenerative diseases. With advancing disease, both motor and non-motor symptoms represent a considerable burden and symptom relief and quality of life improvement become the main goal of treatment. Botulinum toxins (BTX) are an effective treatment modality for many neurological conditions. METHODS: To understand the potential usefulness of BTX in this population, we performed a retrospective chart review of all patients with a clinical diagnosis of idiopathic PD and atypical parkinsonism who received treatment with BTX injections in our center from 1995 to 2014 for a variety of symptoms. Response to BTX was assessed using a subjective Clinical Global Impression. RESULTS: Records of 160 patients were reviewed. Probable idiopathic PD was the diagnosis in 117 patients (73.1%). The main indication for BTX treatment was pain (50.6% of cases). Other indications were the treatment of functional impairment resulting from dystonia (26.25%), sialorrhea (18.75%), freezing of gait, and camptocormia. Considering pain as indication, 81% of all patients with PD reported benefits after the first BTX injections. This benefit was maintained after the last recorded visit without significant difference in outcome compared with the first injection (p=0.067). Similar results were observed in patients with atypical parkinsonism. CONCLUSIONS: Our results confirm the safety and efficacy of different uses of BTX in the symptomatic treatment of patients with parkinsonism even in advanced stages of the disease, and suggest BTX treatment could have a safe and useful role in the treatment of pain in this population.


Asunto(s)
Toxinas Botulínicas/uso terapéutico , Neurotoxinas/uso terapéutico , Dolor Intratable/tratamiento farmacológico , Enfermedad de Parkinson/tratamiento farmacológico , Enfermedad de Parkinson/fisiopatología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Dimensión del Dolor , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Resultado del Tratamiento
9.
Curr Neurol Neurosci Rep ; 15(5): 26, 2015 May.
Artículo en Inglés | MEDLINE | ID: mdl-25795037

RESUMEN

Although Parkinson's disease (PD) is traditionally viewed as a movement disorder which affects quality of life, recent literature has revealed an increased mortality, a high burden of difficult-to-manage non-motor symptoms (e.g., pain, fatigue), high caregiver distress, and a high utilization of medical services especially in the last year of life. Current medical systems have yet to adequately respond to this mounting evidence through the adoption of palliative care practices and through the provision of palliative care services to both PD patients and to affected families. This holistic, interdisciplinary approach to practice would enhance care delivery, identify and address unmet needs, and avoid interventions and hospitalizations especially in the last months of life. As we approach an era of increased life expectancy, increasing comorbidities among patients, and escalating healthcare costs, physicians must be proactive in focusing on quality of life, reducing medical interventions, and respecting patient autonomy.


Asunto(s)
Manejo de la Enfermedad , Cuidados Paliativos/métodos , Cuidados Paliativos/tendencias , Enfermedad de Parkinson/terapia , Humanos , Enfermedad de Parkinson/psicología , Calidad de Vida
10.
Artículo en Inglés | MEDLINE | ID: mdl-39030949

RESUMEN

BACKGROUND: Depression is common in Parkinson's disease (PD) but is underrecognized clinically. Although systematic screening is a recommended strategy to improve depression recognition in primary care practice, it has not been widely used in PD care. METHODS: The 15-item Geriatric Depression Scale (GDS-15) was implemented at 5 movement disorders clinics to screen PD patients. Sites developed processes suited to their clinical workflow. Qualitative interviews with clinicians and patients provided information on feasibility, acceptability, and perceived utility. RESULTS: Prior to implementation, depression screening was recorded in 12% using a formal instrument; 64% were screened informally by clinical interview, and no screening was recorded in 24%. Of 1406 patients seen for follow-up care during the implementation period, 88% were screened, 59% using the GDS-15 (self-administered in 51% and interviewer administered in 8%), a nearly 5-fold increase in formal screening. Lack of clinician or staff time and inability to provide the GDS-15 to the patient ahead of the visit were the most commonly cited reasons for lack of screening using the GDS-15; 378 (45%) patients completing the GDS-15 screened positive for depression, and 137 were enrolled for a 12-month prospective follow-up. Mean GDS-15 scores improved from 8.8 to 7.0 (P < 0.0001) and the 39-item Parkinson's Disease Questionnaire emotional subscore from 42.2 to 36.7 (P = 0.0007). CONCLUSIONS: Depression screening in PD using a formal instrument can be achieved at much higher levels than is currently practiced, but there are barriers to implementing this in clinical practice. An individual site-specific process is necessary to optimize screening rates.

11.
Mov Disord ; 28(3): 341-6, 2013 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-23390076

RESUMEN

Numerous scales assess dyskinesia in Parkinson's disease (PD), variably focusing on anatomical distribution, phenomenology, time, severity, and disability. No study has compared these scales and their relative ability to detect change related to an established treatment. We conducted a randomized placebo-controlled trial of amantadine, assessing dyskinesia at baseline and at 4 and 8 weeks using the following scales: Unified Dyskinesia Rating Scale (UDysRS), Lang-Fahn Activities of Daily Living Dyskinesia Rating Scale (LF), 26-Item Parkinson's Disease Dyskinesia scale (PDD-26), patient diaries, modified Abnormal Involuntary Movements Scale (AIMS), Rush Dyskinesia Rating Scale (RDRS), dyskinesia items from the Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS), and Clinical Global Impression (severity and change: CGI-S, CGI-C). Scale order was randomized at each visit, but raters were aware of each scale as it was administered. Sensitivity to treatment was assessed using effect size. Sixty-one randomized dyskinetic PD subjects (31 amantadine, 30 placebo) completed the study. Four of the 8 scales (CGI-C, LF, PDD-26, and UDysRS) detected a significant treatment. The UDysRS Total Score showed the highest effect size (η(2) = 0.138) for detecting treatment-related change, with all other scales having effect sizes < 0.1. No scale was resistant to placebo effects. This study resolves 2 major issues useful for future testing of new antidyskinesia treatments: among tested scales, the UDysRS, having both subjective and objective dyskinesia ratings, is superior for detecting treatment effects; and the magnitude of the UDysRS effect size from amantadine sets a clear standard for comparison for new agents.


Asunto(s)
Amantadina/efectos adversos , Antiparkinsonianos/efectos adversos , Discinesia Inducida por Medicamentos/diagnóstico , Índice de Severidad de la Enfermedad , Anciano , Análisis de Varianza , Relación Dosis-Respuesta a Droga , Método Doble Ciego , Femenino , Humanos , Masculino , Persona de Mediana Edad , Enfermedad de Parkinson/tratamiento farmacológico , Tamaño de la Muestra , Sensibilidad y Especificidad , Factores de Tiempo
12.
Curr Neurol Neurosci Rep ; 13(8): 367, 2013 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-23761129

RESUMEN

Palliative care for Parkinson disease (PD) is a new concept in neurodegenerative care. Abundant evidence exists supporting PD as increasing risk of death, most commonly from aspiration pneumonia despite improvements in motor and non-motor symptom management. Palliative care emphasizes an interdisciplinary and holistic approach to symptom management. In the following, the timing for considering palliative care, the communication surrounding this stage of illness, and assessing patients and caregivers will be discussed. Evaluation using the Edmonton Symptom Assessment Scale-PD can help practitioners identify symptoms requiring intervention and track their response to interventions. Adopting palliative care principles will allow neurologists to fulfill the needs of PD patients in advanced stages to the end of life.


Asunto(s)
Cuidados Paliativos , Enfermedad de Parkinson/terapia , Cuidadores/psicología , Humanos , Enfermedad de Parkinson/diagnóstico , Enfermedad de Parkinson/mortalidad , Relaciones Médico-Paciente , Evaluación de Síntomas
13.
Neurol Clin Pract ; 13(6): e200205, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37780813

RESUMEN

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.

14.
Handb Clin Neurol ; 191: 107-128, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36599503

RESUMEN

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.


Asunto(s)
Atrofia de Múltiples Sistemas , Enfermedad de Parkinson , Trastornos Parkinsonianos , Parálisis Supranuclear Progresiva , Humanos , Enfermedad de Parkinson/terapia , Cuidados Paliativos , Parálisis Supranuclear Progresiva/terapia
15.
Neurobiol Dis ; 48(3): 519-25, 2012 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-22766031

RESUMEN

Impulse control disorders such as pathological gambling (PG) are a serious and common adverse effect of dopamine (DA) replacement medication in Parkinson's disease (PD). Patients with PG have increased impulsivity and abnormalities in striatal DA, in common with behavioural and substance addictions in the non-PD population. To date, no studies have investigated the role of extrastriatal dopaminergic abnormalities in PD patients with PG. We used the PET radiotracer, [11C] FLB-457, with high-affinity for extrastriatal DA D2/3 receptors. 14 PD patients on DA agonists were imaged while they performed a gambling task involving real monetary reward and a control task. Trait impulsivity was measured with the Barratt Impulsivity Scale (BIS). Seven of the patients had a history of PG that developed subsequent to DA agonist medication. Change in [11C] FLB-457 binding potential (BP) during gambling was reduced in PD with PG patients in the midbrain, where D2/D3 receptors are dominated by autoreceptors. The degree of change in [11C] FLB-457 binding in this region correlated with impulsivity. In the cortex, [11C] FLB-457 BP was significantly greater in the anterior cingulate cortex (ACC) in PD patients with PG during the control task, and binding in this region was also correlated with impulsivity. Our findings provide the first evidence that PD patients with PG have dysfunctional activation of DA autoreceptors in the midbrain and low DA tone in the ACC. Thus, altered striatal and cortical DA homeostasis may incur vulnerability for the development of PG in PD, linked with the impulsive personality trait.


Asunto(s)
Agonistas de Dopamina/efectos adversos , Dopamina/metabolismo , Juego de Azar/diagnóstico por imagen , Homeostasis/fisiología , Mesencéfalo/diagnóstico por imagen , Enfermedad de Parkinson/diagnóstico por imagen , Juego de Azar/inducido químicamente , Juego de Azar/metabolismo , Humanos , Persona de Mediana Edad , Enfermedad de Parkinson/metabolismo , Enfermedad de Parkinson/psicología , Tomografía de Emisión de Positrones , Pirrolidinas , Radiofármacos , Salicilamidas
16.
Parkinsonism Relat Disord ; 102: 124-130, 2022 09.
Artículo en Inglés | MEDLINE | ID: mdl-36038457

RESUMEN

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.


Asunto(s)
Cannabinoides , Marihuana Medicinal , Trastornos del Movimiento , Adolescente , Anciano , Agonistas de Receptores de Cannabinoides , Cannabinoides/efectos adversos , Endocannabinoides , Humanos , Marihuana Medicinal/efectos adversos , Trastornos del Movimiento/tratamiento farmacológico
17.
Handb Clin Neurol ; 190: 3-15, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36055718

RESUMEN

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.


Asunto(s)
Cuidados Paliativos , Humanos
18.
J Pain Symptom Manage ; 63(6): 1031-1040, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35114353

RESUMEN

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.


Asunto(s)
Enfermería de Cuidados Paliativos al Final de la Vida , Enfermedad de Parkinson , Cuidadores , Humanos , Cuidados Paliativos , Enfermedad de Parkinson/complicaciones , Enfermedad de Parkinson/terapia , Calidad de Vida
19.
Brain Sci ; 11(7)2021 Jun 29.
Artículo en Inglés | MEDLINE | ID: mdl-34210042

RESUMEN

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.

20.
Parkinsonism Relat Disord ; 83: 132-139, 2021 02.
Artículo en Inglés | MEDLINE | ID: mdl-33158747

RESUMEN

In advanced Parkinson's 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). We reappraised the evidence guiding the decision of appropriate device-aided therapies in advanced PD, and systematically reviewed the literature (including ongoing clinical trials) comparing CSAI, LCIG, DBS in terms of efficacy and cost-effectiveness, with particular consideration to possible conflicts of interests. Of 14,980 documents screened, sixteen were included (4 and 13 studies examining efficacy and cost-effectiveness, respectively). LCIG and DBS showed higher efficacy compared to best medical therapy (BMT). DBS was more expensive than BMT and LCIG. Lifetime costs of CSAI were lower of those of DBS, and DBS lifetime costs were lower than those of LCIG. The majority of studies (11 out of 16) showed direct or indirect sponsorship from pharmaceutical or device companies. Only one ongoing clinical trial comparing LCIG with DBS was found. Device-aided therapies address unmet needs in advanced PD. LCIG and DBS are superior to BMT in head-to-head studies; however, initial and lifetime costs should be considered when choosing those therapies. Guidelines to assist clinicians and patients to choose device-aided therapies, free from conflict of interests, are required.


Asunto(s)
Análisis Costo-Beneficio/normas , Evaluación de Resultado en la Atención de Salud/estadística & datos numéricos , Enfermedad de Parkinson/terapia , Guías de Práctica Clínica como Asunto/normas , Humanos
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