Delivering patient-centered care in Parkinson's disease: Challenges and consensus from an international panel.

Abstract:

:An international panel of movement disorders specialists explored the views and perceptions of people with Parkinson's disease (PD) about their condition and its treatment, including the potential mismatch between the clinician's view of the patient's condition and their own view of what aspects of the disease most affect their daily lives. The initiative was focused on Asian countries, so participants comprised experts in the management of PD from key centers in Asia, with additional insight provided by European and the North American movement disorders experts. Analysis of peer-reviewed publications on patient perceptions of PD and the factors that they consider important to their wellbeing identified several contributing factors to the mismatch of views, including gaps in knowledge of PD and its treatment, an understanding of the clinical heterogeneity of PD, and the importance of a multidisciplinary approach to patient care. The faculty proposed options to bridge these gaps to ensure that PD patients receive the personalized treatment they need to achieve the best possible outcomes. It was considered essential to improve patient knowledge about PD and its treatment, as well as increasing the awareness of clinicians of PD heterogeneity in presentation and treatment response. A multidisciplinary and shared-care approach to PD was needed alongside the use of patient-centered outcome measures in clinical trials and clinical practice to better capture the patient experience and improve the delivery of individualized therapy.

authors

Bhidayasiri R,Panyakaew P,Trenkwalder C,Jeon B,Hattori N,Jagota P,Wu YR,Moro E,Lim SY,Shang H,Rosales R,Lee JY,Thit WM,Tan EK,Lim TT,Tran NT,Binh NT,Phoumindr A,Boonmongkol T,Phokaewvarangkul O,Thongchuam Y,Vora

doi

10.1016/j.parkreldis.2020.02.013

subject

Has Abstract

pub_date

2020-03-01 00:00:00

pages

82-87

eissn

1353-8020

issn

1873-5126

pii

S1353-8020(20)30041-9

journal_volume

72

pub_type

杂志文章
  • Long-term response to continuous duodenal infusion of levodopa/carbidopa gel in patients with advanced Parkinson disease: The Barcelona registry.

    abstract:INTRODUCTION:Continuous infusion of levodopa/carbidopa intestinal gel (LCIG) is an effective treatment for patients with advanced Parkinson Disease (PD) that cannot be further improved by oral therapy. METHODS:We conducted an observational, prospective, and multicenter study to collect, in a large sample of PD treated...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,多中心研究

    doi:10.1016/j.parkreldis.2015.05.014

    authors: Buongiorno M,Antonelli F,Cámara A,Puente V,de Fabregues-Nebot O,Hernandez-Vara J,Calopa M,Pascual-Sedano B,Campolongo A,Valldeoriola F,Tolosa E,Kulisevsky J,Martí MJ

    更新日期:2015-08-01 00:00:00

  • Stroke of the substance nigra and parkinsonism as first manifestation of systemic lupus erythematosus.

    abstract::The authors report one case of parkinsonism associated with systemic lupus erythematosus (SLE): a 45-year-old woman, who presented with a strategic infarct of the right substance nigra secondary to vasculitis, and contralateral symptoms. Other causes of parkinsonism were excluded. She had a partial response to therapy...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2007.08.001

    authors: Orta Daniel SJ,Ulises RO

    更新日期:2008-01-01 00:00:00

  • Gaba and serotonin molecular neuroimaging in essential tremor: a clinical correlation study.

    abstract:BACKGROUND:Essential tremor is the most common movement disorder in adults, but its exact etiology and pathophysiology are still not fully understood. There is some consensus, however, about the involvement of the cerebellum and accumulating evidence points towards a dysfunction of the gabaergic system. We hypothesize ...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2012.04.024

    authors: Gironell A,Figueiras FP,Pagonabarraga J,Herance JR,Pascual-Sedano B,Trampal C,Gispert JD

    更新日期:2012-08-01 00:00:00

  • Parkinson's disease, levodopa-use and the risk of melanoma.

    abstract::Since the early 1970s, the literature has suggested an association between Parkinson's Disease (PD) and/or levodopa-use and an increased risk for the development of malignant melanoma. In some countries, this possible association has even led to a warning in the drug insert leaflet of the possible risk. Recently, five...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.parkreldis.2009.05.002

    authors: Vermeij JD,Winogrodzka A,Trip J,Weber WE

    更新日期:2009-09-01 00:00:00

  • Motor impairment in normal aging, clinically possible Parkinson's disease, and clinically probable Parkinson's disease: longitudinal evaluation of a cohort of prospective brain donors.

    abstract::This study presents data on the antemortem evaluations of a cohort of individuals registered in a brain donation program. Clinical evaluation determined that many individuals were unaware they had clinical signs of Parkinson's disease (PD) (rest tremor, bradykinesia, rigidity). Quantitative motor testing (timed tappin...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/s1353-8020(02)00012-3

    authors: Adler CH,Hentz JG,Joyce JN,Beach T,Caviness JN

    更新日期:2002-12-01 00:00:00

  • 24 h Levodopa-carbidopa intestinal gel may reduce falls and "unresponsive" freezing of gait in Parkinson's disease.

    abstract:OBJECTIVE:We report a prospective, open label study of 24 h levodopa-carbidopa intestinal gel (LCIG) as treatment for levodopa "unresponsive" freezing of gait (FOG) associated with Parkinson's disease. METHOD:5 patients with disabling FOG, documented as being levodopa "unresponsive", were commenced on continuous 24 h ...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2014.12.019

    authors: Chang FC,Tsui DS,Mahant N,Wolfe N,Kim SD,Ha AD,Drury M,Griffith JM,Fung VS

    更新日期:2015-03-01 00:00:00

  • Plasma immune markers in an idiopathic REM sleep behavior disorder cohort.

    abstract:INTRODUCTION:Increasing evidence shows a strong association between idiopathic REM sleep behavior disorder (iRBD) and α-synucleinopathies. Recent studies have indicated an inflammatory mechanism in the pathogenesis of α-synucleinopathies. Whether peripheral inflammatory cytokines are altered in iRBD and can be biomarke...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2020.07.017

    authors: Zhang H,Wang T,Li Y,Mao W,Hao S,Huang Z,Chan P,Cai Y

    更新日期:2020-09-01 00:00:00

  • Impaired decision-making in Parkinson's disease.

    abstract::The present study demonstrated that individuals with Parkinson's disease display impairments in making profitable decisions, as evidenced by poorer performance on the Iowa Gambling Task relative to matched controls. The ability to make beneficial judgments solely correlates with ability to appropriately attribute inte...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2005.12.003

    authors: Mimura M,Oeda R,Kawamura M

    更新日期:2006-04-01 00:00:00

  • Effects of augmented visual feedback during balance training in Parkinson's disease: a pilot randomized clinical trial.

    abstract:BACKGROUND:Balance training has been demonstrated to improve postural control in patients with Parkinson's disease (PD). The objective of this pilot randomized clinical trial was to investigate whether a balance training program using augmented visual feedback is feasible, safe, and more effective than conventional bal...

    journal_title:Parkinsonism & related disorders

    pub_type: 临床试验,杂志文章,随机对照试验

    doi:10.1016/j.parkreldis.2014.09.022

    authors: van den Heuvel MR,Kwakkel G,Beek PJ,Berendse HW,Daffertshofer A,van Wegen EE

    更新日期:2014-12-01 00:00:00

  • Quality of life outcomes after deep brain stimulation in dystonia: A systematic review.

    abstract::Dystonia is an incurable movement disorder which can cause not only physical but also mental problems, leading to impaired health-related quality of life (HRQoL). For patients with dystonia refractory to medical treatment, deep brain stimulation (DBS) is a well-established surgical treatment. The objective of this sys...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2019.11.016

    authors: Tsuboi T,Wong JK,Okun MS,Ramirez-Zamora A

    更新日期:2020-01-01 00:00:00

  • Deep brain stimulation in neurologic disorders.

    abstract::Deep brain stimulation (DBS) is an effective surgical therapy for well-selected patients with medically intractable Parkinson's disease (PD) and essential tremor (ET). The purpose of this review is to describe the success of DBS in these two disorders and its promising application in dystonia, Tourette Syndrome (TS) a...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.parkreldis.2006.03.001

    authors: Halpern C,Hurtig H,Jaggi J,Grossman M,Won M,Baltuch G

    更新日期:2007-02-01 00:00:00

  • Prevalence survey of movement disorders, epilepsy, hypertension and smoking habit in Vejer de la Frontera, Southern Spain-I. Methodology.

    abstract::A prevalence survey of movement disorders, epilepsy, hypertension and smoking was undertaken in Vejer de la Frontera, Southern Spain in 1988. A validated screening instrument designed for door-to-door tracing of specific disorders was used. Neurological diagnoses were based on: (1) direct anamnesis and examination by ...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/s1353-8020(96)00021-1

    authors: Acosta-Varo J,De Pedro-Cuesta J

    更新日期:1996-10-01 00:00:00

  • The pimple sign of progressive supranuclear palsy syndrome.

    abstract:BACKGROUND:Some patients with progressive supranuclear palsy syndrome (PSPS) demonstrate a focal area of midbrain hypometabolism on FDG-PET scans which we call the 'pimple sign'. We assessed its association with midbrain atrophy, its reliability and its ability to differentiate PSPS from corticobasal syndrome (CBS) and...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2013.10.023

    authors: Botha H,Whitwell JL,Madhaven A,Senjem ML,Lowe V,Josephs KA

    更新日期:2014-02-01 00:00:00

  • EIF4G1 gene mutations are not a common cause of Parkinson's disease in the Japanese population.

    abstract::Pathogenic mutations in the EIF4G1 gene were recently reported as a cause of autosomal dominant parkinsonism. To assess the frequency of EIF4G1 mutations in the Japanese population we sequenced the entire gene coding region (31 exons) in 95 patients with an apparent autosomal dominant inherited form of Parkinson's dis...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2014.03.004

    authors: Nishioka K,Funayama M,Vilariño-Güell C,Ogaki K,Li Y,Sasaki R,Kokubo Y,Kuzuhara S,Kachergus JM,Cobb SA,Takahashi H,Mizuno Y,Farrer MJ,Ross OA,Hattori N

    更新日期:2014-06-01 00:00:00

  • Prescribing medications in Parkinson's disease (PD) patients during acute admissions to a District General Hospital.

    abstract::This is a short report illustrating the problems of the prescribing of anti-Parkinson's disease (PD) medication in patients with PD who are admitted acutely to hospital for any reason. There were a large number of complications as a result of inappropriate or lack of anti-PD drug administration and poor understanding ...

    journal_title:Parkinsonism & related disorders

    pub_type: 临床试验,杂志文章

    doi:10.1016/j.parkreldis.2006.11.006

    authors: Magdalinou KN,Martin A,Kessel B

    更新日期:2007-12-01 00:00:00

  • Survival in Parkinson's disease in relation to striatal dopamine transporter binding.

    abstract:OBJECTIVE:To investigate whether dopamine transporter (DAT) binding, as measured with single photon emission computed tomography (SPECT), can be used to predict mortality in patients with Parkinson's disease (PD). METHODS:A total of 162 patients with PD and abnormal [I-123]FP-CIT SPECT were clinically followed for a m...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2017.06.013

    authors: Mäkinen E,Joutsa J,Vahlberg T,Kaasinen V

    更新日期:2017-09-01 00:00:00

  • Consecutive analyses of cerebrospinal fluid axonal and glial markers in Parkinson's disease and atypical Parkinsonian disorders.

    abstract::Cerebrospinal fluid (CSF) levels of neurofilament light protein (NFL), a marker of neuronal damage, are normal in Parkinson's disease (PD) but elevated in multiple system atrophy (MSA) and progressive supranuclear palsy (PSP). Therefore, CSF NFL can help differentiate between PD on one hand and MSA/PSP on the other. I...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2009.07.007

    authors: Constantinescu R,Rosengren L,Johnels B,Zetterberg H,Holmberg B

    更新日期:2010-02-01 00:00:00

  • Long-term outcome of 50 consecutive Parkinson's disease patients treated with subthalamic deep brain stimulation.

    abstract:OBJECTIVE:To describe the long-term outcome in 50 consecutive advanced Parkinson's disease (PD) patients treated with subthalamic nucleus deep brain stimulation (STN-DBS). METHOD:Assessments were carried out at baseline, 6 months, 2 years, and 5 years postoperatively. RESULTS:Compared to baseline scores without medic...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2007.06.012

    authors: Wider C,Pollo C,Bloch J,Burkhard PR,Vingerhoets FJ

    更新日期:2008-01-01 00:00:00

  • The pedunculopontine nucleus and movement disorders: anatomy and the role for deep brain stimulation.

    abstract::The pedunculopontine nucleus (PPN) is a brainstem locomotive center that also processes sensory and behavioral information. Through its connections with basal ganglia structures and the spinal cord, the PPN may play a role in axial motor symptoms in Parkinson's disease (PD). We review the anatomical features of the PP...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/S1353-8020(08)70016-6

    authors: Hamani C,Stone S,Laxton A,Lozano AM

    更新日期:2007-01-01 00:00:00

  • Washout of chronic therapeutic deep brain stimulation increases cortical phase-amplitude coupling.

    abstract::Invasive human brain recordings have shown that acute therapeutic deep brain stimulation (DBS) reduces cortical synchronization, measured by coupling of beta phase to gamma amplitude. Here we show by noninvasive scalp electroencephalography that withdrawal of chronic DBS elevates phase-amplitude coupling, in proportio...

    journal_title:Parkinsonism & related disorders

    pub_type: 信件

    doi:10.1016/j.parkreldis.2019.08.018

    authors: Rajagopalan SS,Miller AM,de Hemptinne C,San Luciano M,Ostrem JL,Starr PA

    更新日期:2019-09-01 00:00:00

  • Revisiting the impact of REM sleep behavior disorder on motor progression in Parkinson's disease.

    abstract:BACKGROUND:Estimation of progression in Parkinson's disease (PD) is useful to guide clinical decisions and to enable patients to plan and manage their life with PD. Rapid eye movement (REM) sleep behavior disorder (RBD) and REM sleep without atonia (RWA) are recognized as early harbingers of neurodegeneration and may p...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2014.01.005

    authors: Sommerauer M,Valko PO,Werth E,Poryazova R,Hauser S,Baumann CR

    更新日期:2014-04-01 00:00:00

  • Autosomal recessive parkinsonism.

    abstract::Several forms of autosomal recessive parkinsonism are known. In three forms, caused by mutations in parkin (PARK2), PINK1 (PARK6), or DJ-1 (PARK7), the phenotype is usually characterized by levodopa-responsive parkinsonism without atypical features. Parkin mutations are most frequent, explaining -50% of the cases with...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/S1353-8020(11)70004-9

    authors: Bonifati V

    更新日期:2012-01-01 00:00:00

  • A pathophysiological model of freezing of gait in Parkinson's disease.

    abstract::Freezing of gait (FOG) is a common phenomenon in Parkinson's disease (PD) affecting over half of those in the advanced stages of the disease and often does not respond to standard drug therapies. This article proposes a possible mechanism by which this disorder of movement comes about. Co-ordinated neural activities a...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2008.08.006

    authors: Lewis SJ,Barker RA

    更新日期:2009-06-01 00:00:00

  • Randomized, controlled pilot trial of solifenacin succinate for overactive bladder in Parkinson's disease.

    abstract:OBJECTIVE:To evaluate the efficacy of solifenacin succinate in Parkinson's disease (PD) patients suffering from overactive bladder (OAB). BACKGROUND:Urinary dysfunction is a commonly encountered non-motor feature in PD that significantly impacts patient quality of life. DESIGN/METHODS:This was a double-blind, randomi...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,多中心研究,随机对照试验

    doi:10.1016/j.parkreldis.2015.02.025

    authors: Zesiewicz TA,Evatt M,Vaughan CP,Jahan I,Singer C,Ordorica R,Salemi JL,Shaw JD,Sullivan KL,Non-Motor Working Group of the Parkinson Study Group (PSG).

    更新日期:2015-05-01 00:00:00

  • Cardiovascular dysautonomia as a cause of falls in Parkinson's disease.

    abstract::Parkinson's disease (PD) patients have a ninefold increased risk of recurring falls compared to healthy controls. The risk of falling due to cardiovascular dysautonomia (CVD) is not quantifiable. But, CVD is an integral part of the disease and at least 20% of PD patients suffer from orthostatic hypotension, an express...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/j.parkreldis.2006.02.001

    authors: Martignoni E,Tassorelli C,Nappi G

    更新日期:2006-05-01 00:00:00

  • Phenotype of non-c.907_909delGAG mutations in TOR1A: DYT1 dystonia revisited.

    abstract:BACKGROUND:In addition to the most frequent TOR1A/DYT1 mutation (c.907_909delGAG), a growing number of TOR1A sequence variants are found in dystonia patients. For most, functional characterization has demonstrated pathogenicity at different levels, implying that TOR1A genetic testing should not be limited to screening ...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2015.08.001

    authors: Dobričić V,Kresojević N,Žarković M,Tomić A,Marjanović A,Westenberger A,Cvetković D,Svetel M,Novaković I,Kostić VS

    更新日期:2015-10-01 00:00:00

  • Interoceptive processing deficit: A behavioral marker for subtyping Parkinson's disease.

    abstract:BACKGROUND:Non-motor symptoms in Parkinson's disease (PD), such as cognitive, emotional, autonomic and somatosensory alterations, are not ubiquitous but vary between the tremor dominant (TD) and postural instability/gait difficulty (PIGD) subtypes of the syndrome. Non-motor phenomena (e.g., anxiety, depression and apat...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2018.05.001

    authors: Santangelo G,Vitale C,Baiano C,D'Iorio A,Longo K,Barone P,Amboni M,Conson M

    更新日期:2018-08-01 00:00:00

  • Immunization strategies for Parkinson's disease.

    abstract::Parkinson's disease (PD) is the most common neurodegenerative movement disorder. Currently, no curative treatments or treatments that interdict disease progression are available. Over the past decade, immunization strategies were developed in our laboratories to combat disease progression. These strategies were develo...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章,评审

    doi:10.1016/S1353-8020(11)70067-0

    authors: Ha D,Stone DK,Mosley RL,Gendelman HE

    更新日期:2012-01-01 00:00:00

  • Dystonic frowning without blepharospasm.

    abstract::We report on two cases who presented with involuntary facial grimacing and frowning. Blepharospasm has never been documented in one, and the other case showed difficulty in lid opening only in the early phase of the disease. Botulinum toxin was effective for both. This is a hitherto unreported presentation of upper fa...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2007.12.001

    authors: Hirota N,Hirota M,Mezaki T

    更新日期:2008-11-01 00:00:00

  • Obsessive compulsive personality disorder in Progressive Supranuclear Palsy, Multiple System Atrophy and Essential Tremor.

    abstract:INTRODUCTION:aim of the study was to evaluate the presence of the Obsessive Compulsive Personality Disorder (OCPeD) in Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP) and Essential Tremor (ET) and in a group of healthy subjects. METHODS:patients affected by MSA, PSP and ET diagnosed according to cu...

    journal_title:Parkinsonism & related disorders

    pub_type: 杂志文章

    doi:10.1016/j.parkreldis.2016.06.015

    authors: Nicoletti A,Luca A,Luca M,Donzuso G,Mostile G,Raciti L,Contrafatto D,Dibilio V,Sciacca G,Cicero CE,Vasta R,Petralia A,Zappia M

    更新日期:2016-09-01 00:00:00