The phenomenology of pain in Parkinson’s disease.

CC BY-NCBackground: Parkinson’s disease (PD) is a neurodegenerative disorder that is the second most common disorder after Alzheimer’s disease. PD includes both “motor” and “non-motor” symptoms, one of which is pain. The aim of this study was to investigate the clinical characteristics of pain in patients with PD. Methods: This cross-sectional study included 250 patients diagnosed with PD, 70% of which had mild to moderate PD (stages 2/3 of Hoehn and Yahr scale). The average age was 67.4 years, and the average duration since PD diagnosis was 7.1 years. Relevant data collected from PD patients were obtained from their personal medical history. Results: The prevalence of pain was found to be high (82%), with most patients (79.2%) relating their pain to PD. Disease duration was correlated with the frequency of intense pain (R: 0.393; P < 0.05). PD pain is most frequently perceived as an electrical current (64%), and two pain varieties were most prevalent (2.60 ± 0.63). Our findings confirm links between pain, its evolution over time, its multi-modal character, the wide variety of symptoms of PD, and the female sex. Conclusions: Our results demonstrated that the pain felt by PD patients is mainly felt as an electrical current, which contrasts with other studies where the pain is described as burning and itching. Our classification is innovative because it is based on anatomy, whereas those of other authors were based on syndromes

Living with chronic illness scale: international validation of a new self-report measure in Parkinson's disease

Understanding how a person lives with a chronic illness, such as Parkinson's disease (PD), is necessary to provide individualized care and professionals role in person-centered care at clinical and community levels is paramount. The present study was aimed to analyze the psychometric properties of the Living with Chronic Illness-PD Scale (EC-PC) in a wide Spanish-speaking population with PD. International cross-sectional study with retest was carried out with 324 patients from four Latin American countries and Spain. Feasibility, acceptability, scaling assumptions, reliability, precision, and construct validity were tested. The study included 324 patients, with age (mean±s.d.) 66.67±10.68 years. None of the EC-PC items had missing values and all acceptability parameters fulfilled the standard criteria. Around two-third of the items (61.54%) met scaling assumptions standards. Concerning internal consistency, Cronbach's alpha values were 0.68-0.88; item-total correlation was >0.30, except for two items; item homogeneity index was >0.30, and inter-item correlation values 0.14-0.76. Intraclass correlation coefficient for EC-PC stability was 0.76 and standard error of measurement (s.e.m.) for precision was 8.60 (for a EC-PC s.d.=18.57). EC-PC presented strong correlation with social support (rS=0.61) and moderate correlation with life satisfaction (rS=0.46). Weak and negligible correlations were found with the other scales. Internal validity correlations ranged from 0.46 to 0.78. EC-PC total scores were significantly different for each severity level based on Hoehn and Yahr and Clinical Impression of Severity Index, but not for Patient Global Impression of Severity. The EC-PC has satisfactory acceptability, reliability, precision, and validity to evaluate living with PD.S

Living with chronic illness scale: international validation of a new self-report measure in Parkinson’s disease

Understanding how a person lives with a chronic illness, such as Parkinson’s disease (PD), is necessary to provide individualized care and professionals role in person-centered care at clinical and community levels is paramount. The present study was aimed to analyze the psychometric properties of the Living with Chronic Illness-PD Scale (EC-PC) in a wide Spanish-speaking population with PD. International cross-sectional study with retest was carried out with 324 patients from four Latin American countries and Spain. Feasibility, acceptability, scaling assumptions, reliability, precision, and construct validity were tested. The study included 324 patients, with age (mean±s.d.) 66.67±10.68 years. None of the EC-PC items had missing values and all acceptability parameters fulfilled the standard criteria. Around two-third of the items (61.54%) met scaling assumptions standards. Concerning internal consistency, Cronbach’s alpha values were 0.68–0.88; item-total correlation was &gt;0.30, except for two items; item homogeneity index was &gt;0.30, and inter-item correlation values 0.14–0.76. Intraclass correlation coefficient for EC-PC stability was 0.76 and standard error of measurement (s.e.m.) for precision was 8.60 (for a EC-PC s.d.=18.57). EC-PC presented strong correlation with social support (rS=0.61) and moderate correlation with life satisfaction (rS=0.46). Weak and negligible correlations were found with the other scales. Internal validity correlations ranged from 0.46 to 0.78. EC-PC total scores were significantly different for each severity level based on Hoehn and Yahr and Clinical Impression of Severity Index, but not for Patient Global Impression of Severity. The EC-PC has satisfactory acceptability, reliability, precision, and validity to evaluate living with PD

Analysis of four scales for global severity evaluation in Parkinson’s disease

Global evaluations of Parkinson?s disease (PD) severity are available, but their concordance and accuracy have not been previously tested. The present international, cross-sectional study was aimed at determining the agreement level among four global scales for PD (Hoehn and Yahr, HY; Clinical Global Impression of Severity, CGIS; Clinical Impression of Severity Index, CISI-PD; and Patient Global Impression of Severity, PGIS) and identifying which of them better correlates with itemized PD assessments. Assessments included additional scales for evaluation of the movement impairment, disability, affective disorders, and quality of life. Spearman correlation coefficients, weighted and generalized kappa, and Kendall?s concordance coefficient were used. Four hundred thirty three PD patients, 66% in HY stages 2 or 3, mean disease duration 8.8 years, were analyzed. Correlation between the global scales ranged from 0.60 (HY with PGIS) to 0.91 (CGIS with CISI-PD). Kendall?s coefficient of concordance resulted 0.76 (P<0.0001). HY and CISI-PD showed the highest association with age, disease duration, and levodopa-equivalent daily dose, and CISI-PD with measures of PD manifestations, disability, and quality of life. PGIS and CISI-PD correlated similarly with anxiety and depression scores. The lowest agreement in classifying patients as mild, moderate, or severe was observed between PGIS and HY or CISI-PD (58%) and the highest between CGIS and CISI-PD (84.3%). The four PD global severity scales agree moderately to strongly among them; clinician-based ratings estimate PD severity, as established by other measures, better than PGIS; and the CISI-PD showed the highest association with measures of impairment, disability, and quality of life.Fil: Martinez Martin, Pablo. Universidad Carlos III de Madrid. Instituto de Salud; EspañaFil: Rojo Abuin, José Manuel. Consejo Superior de Investigaciones Cientificas. Centro de Ciencias Humanas y Sociales. Instituto de Historia.; EspañaFil: Rodríguez Violante, Mayela. Instituto Nacional de Neurología y Neurocirugía; MéxicoFil: Serrano Dueñas, Marcos. Pontificia Universidad Católica del Ecuador; EcuadorFil: Garreto, Nélida Susana. Universidad de Buenos Aires. Facultad de Medicina. Centro Universitario de Neurologia "dr. Jose Maria Ramos Mejia".; ArgentinaFil: Martínez Castrillo, Juan Carlos. Instituto Ramón y Cajal de Investigación Sanitaria; EspañaFil: Campos Arillo, Víctor. Hospital Xanit International; EspañaFil: Fernández, William. Universidad Nacional de Colombia; ColombiaFil: Chaná Cuevas, Pedro. Universidad de Santiago de Chile. Facultad de Humanidades. Instituto de Ciencias Biomédicas.; ChileFil: Arakaki, Tomoko. Universidad de Buenos Aires. Facultad de Medicina. Centro Universitario de Neurologia "dr. Jose Maria Ramos Mejia".; Argentina. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; ArgentinaFil: Alvarez, Mario Gustavo. Centro Internacional de Restauración Neurológica ; CubaFil: Pedroso Ibañez, Ivonne. Centro Internacional de Restauración Neurológica ; CubaFil: Rodríguez Blázquez , Carmen. Universidad Carlos III de Madrid. Instituto de Salud; EspañaFil: Ray Chaudhuri , Kallol. National Parkinson Foundation International Centre of Excellence; Reino UnidoFil: Merello, Marcelo Jorge. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; Argentina. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentin

Parkinson's disease severity levels and MDS-Unified Parkinson's Disease Rating Scale

Background Severity of PD is usually assessed by means of the motor and disability-based Hoehn and Yahr staging (HY), or clinician and patient global perceptions. Scores of more detailed assessments, as the MDS-UPDRS, have not been translated to a grading that allows assignment of score sections to severity levels. The objective of the present study is to determine cut-off points for PD severity levels based on the MDS-UPDRS. Methods International, observational study. Applied assessments were: HY, MDS-UPDRS, Clinical Impression for Severity Index, and Clinical and Patient Global Impression of Severity. The coincidence in severity level (mild, moderate, severe) of at least two clinical classifications plus the patient's gradation was considered “the criterion of severity”. Cut-off values for each MDS-UPDRS subscale was determined by triangulation of: 1) percentile 90 of the subscale total score; 2) receiver operating characteristic (ROC) analysis; and 3) ordinal logistic regression (OLR) model. Results Sample was composed of 452 consecutive PD patients without dementia, 55.3% males, age 65.1 ± 10.7 years and PD duration 8.7 ± 6.3 years. All HY stages were represented. The “criterion”, classified 275 patients (60.8% of the sample) as: mild PD, 149 (54.2%); moderate, 82 (29.8%); and severe, 44 (16%). The following MDS-UPDRS cut-off points between mild/moderate and moderate/severe levels were found: Part 1: 10/11 and 21/22; Part 2: 12/13 and 29/30; Part 3: 32/33 and 58/59; and Part 4: 4/5 and 12/13. Conclusion Cut-off points to classify PD patients as mild, moderate, or severe on the basis of their MDS-UPDRS scores are proposed.Fil: Martínez Martín, Pablo. Universidad Carlos III de Madrid. Instituto de Salud; EspañaFil: Rodríguez Blázquez, Carmen. Universidad Carlos III de Madrid. Instituto de Salud; EspañaFil: Alvarez, Mario. Departamento de Trastornos del Movimiento y Neurodegeneración. La Habana; CubaFil: Arakaki, Tomoko. Gobierno de la Ciudad de Buenos Aires. Hospital General de Agudos "Ramos Mejía"; Argentina. Universidad de Buenos Aires; ArgentinaFil: Campos Arillo, Víctor. Hospital Xanit International. Málaga; EspañaFil: Chaná, Pedro. Universidad de Santiago de Chile; ChileFil: Fernández, William. Universidad Nacional de Colombia; ColombiaFil: Garretto, Nelida. Gobierno de la Ciudad de Buenos Aires. Hospital General de Agudos "Ramos Mejía"; Argentina. Universidad de Buenos Aires; ArgentinaFil: Martínez Castrillo, Juan Carlos. Hospital Ramon y Cajal. Madrid; EspañaFil: Rodríguez Violante, Mayela. Instituto Nacional de Neurologia y Neurocirugia. Mexico DF; MéxicoFil: Serrano Dueñas, Marcos. Pontificia Universidad Catolica del Ecuador; EcuadorFil: Ballesteros, Diego. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; ArgentinaFil: Rojo Abuin, Jose Manuel. Consejo Español de Investigaciones Científicas. Madrid; EspañaFil: Chaudhuri, Kallol Ray. King's College Hospital. Londres; Reino UnidoFil: Merello, Marcelo Jorge. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Fundación para la Lucha contra las Enfermedades Neurológicas de la Infancia; Argentin

Satisfaction with life scale (SLS-6): first validation study in Parkinson's disease population

Introduction: To explore the psychometric attributes of a new Satisfaction with Life Scale (SLS-6) in a wide Spanish-speaking population with Parkinson's disease (PD).Methods: This was an international, cross-sectional study. Several rater-based and patient-reported outcomes measures for evaluation of PD (e.g., Scales for Outcomes in Parkinson's Disease-Motor) and other constructs (e.g., Duke-UNC Functional Social Support Questionnaire, Scale for Living with Chronic Illness) were applied together with the SLS-6. Acceptability, scaling assumptions, reliability, precision, and construct validity were tested.Results: The study included 324 patients from five countries, with age (mean ± standard deviation) 66.67 ± 10.68 years. None of the SLS-6 items had missing values and all acceptability parameters fulfilled the standard criteria. Scaling assumptions allowed the calculation of a summary index from items 2 to 6, complementary to the global evaluation (item 1). For these five items, Cronbach's alpha was 0.85; the corrected item–total correlation 0.53–0.73; inter-item correlation, 0.45–0.70, with an item homogeneity index of 0.55. The standard error of measurement, based on Cronbach's alpha for a single observation, was 3.48. SLS-6 correlations were moderate to strong (rs ? 0.35) with the patient-reported outcomes and weak to moderate with the rater-based assessments used in the study. The SLS-6 total score was significantly different according to PD severity levels established according to Hoehn and Yahr staging, Clinical Impression of Severity Index, and Patient-Based Global Impression of Severity scale.Conclusion: The results suggest that SLS-6 is an easy, feasible, acceptable, consistent, precise and valid measure to evaluate satisfaction with life in PD patients

Estudio piloto sobre uma medida específica para as perturbações do sono associadas à doença de Parkinson: SCOPA-sono

Introducción. En la enfermedad de Parkinson (EP) existe una alta prevalencia de trastornos del sueño. Objetivos. Comprobar los atributos métricos básicos de la escala SCOPA-sueño para pacientes con EP; objetivo secundario: analizar el impacto del trastorno del sueño en la calidad de vida relacionada con la salud (CVRS) del paciente y de su cuidador principal. Sujetos y métodos. 68 pacientes con EP y sus cuidadores principales. Se aplicaron: Hoehn y Yahr, SCOPA-motor, impresión clínica de gravedad (CISIPD), escala PDSS, Hospital Anxiety and Depression Scale, SCOPA-psicosocial y EuroQoL. El cuidador cumplimentó un cuestionario PDSS sobre el sueño del paciente y las medidas de la CVRS (SF-36, EuroQoL). Se analizaron la aceptabilidad, las asunciones escalares, la consistencia interna, la validez de constructo y la precisión de la SCOPA-sueño. Resultados. La SCOPA-sueño mostró aceptabilidad satisfactoria y asunciones escalares. La subescala sueño nocturno (SC-Sn) presentó leve efecto techo (22,1%), y la subescala somnolencia diurna (SC-Sd), defectuosa validez convergente del ítem 6; la consistencia interna de ambas resultó satisfactoria (alfa = 0,84 y 0,75, respectivamente). SC-Sn correlacionó significativamente con la PDSS (rS= –0,70) y con el cuestionario PDSS cumplimentado por el cuidador (rS = –0,53), y fueron menores los valores respectivos para la SC-Sd (rS= –0,41 y –0,50). Error estándar de la medida: SC-Sn, 1,45; SC-Sd, 1,76. La CVRS del paciente y la del cuidador mostraron una escasa correlación con las medidas de sueño. Conclusiones. La escala SCOPA-sueño es viable, consistente y útil para evaluar el trastorno del sueño en pacientes con EP. La relación entre la CVRS y la alteración del sueño fue débil. [REV NEUROL 2006; 43: 577-83]Introduction. There is a high prevalence of sleep disorders in Parkinson’s disease (PD). Aims. To assess some basic metric attributes of the SCOPA-Sleep scale, a measure for PD patients; secondary objective: to check the impact caused by the sleep disorder on the health-related quality of life (HRQoL) of patients and their caregivers. Subjects and methods. 68 PD patients and their main caregivers; measures: Hoehn and Yahr staging, SCOPA-Motor, Clinical Impression of Severity Index (CISI-PD), PDSS, Hospital Anxiety and Depression Scale, SCOPA-Psychosocial, and EuroQoL. Carers filled in a PDSS questionnaire about patient sleep and HRQoL measures (SF-36, EuroQoL). SCOPA-Sleep acceptability, scaling assumptions, internal consistency, construct validity and precision were determined. Results. SCOPA-Sleep acceptability and scaling assumptions resulted satisfactory, although the nocturnal sleep subescale (SC-Ns) showed a mild ceiling effect (22.1%) and a defective convergent validity was found for daytime sleepiness (SC-Ds) item 6. Internal consistency also was satisfactory for both scales (alpha = 0.84 and 0.75, respectively). The correlation between SC-Ns and PDSS was high (rS = –0.70), as it was between SC-Ns and PDSS questionnaire by caregiver (rS = –0.53). The corresponding coefficients with the SC-Ds gained lower values (rS = –0.41 y –0.50). Standard error of measurement was 1.45 for the SC-Ns and 1.76 for the SC-Ds. Both, patient and caregiver HRQoL showed a loose association with the sleep measures. Conclusion. SCOPA-Sleep is a feasible, consistent, and useful scale for assessment of sleep disorder in PD patients. A weak association between sleep disorder and HRQoL was found. [REV NEUROL 2006; 43: 577-83]Introdução. A doença de Parkinson (DP) associa-se a uma elevada prevalência de perturbações do sono. Objectivos. Comprovar os atributos métricos básicos da escala SCOPA-sono para doentes com DP; objectivo secundário: analisar o impacto das perturbações do sono na qualidade de vida relacionada com a saúde (QVRS) do doente e do seu principal cuidador. Sujeitos e métodos. Foram estudados 68 doentes com DP e respectivos cuidadores. Aplicaramse as escalas: Hoehn e Yahr, SCOPA-motor, Clinical Impression of Severity Index for Parkinson’s Disease (CISI-PD), escala PDSS, Hospital Anxiety and Depression Scale, SCOPA-psicosocial e EuroQoL. O cuidador preencheu um questionário PDSS sobre o sono do doente e as medidas da QVRS (SF-36, EuroQoL). Foram analisadas a aceitabilidade, as assunções escalares a consistência interna, a validade de construção e a precisão da SCOPA-sono. Resultados. A SCOPA-sono revelou aceitabilidade satisfatória e assunções das escalas. A subescala sono nocturno (SC-Sn) apresentou um discreto efeito tecto (22,1%) e a subescala sonolência diurna (SC-Sd) uma validade convergente imperfeita do item 6; a consistência interna de ambas resultou satisfatória (alfa = 0,84 e 0,75, respectivamente). SC-Sn correlacionou-se significativamente com a PDSS (rS = –0,70) e com o questionário PDSS preenchido pelo cuidador (rS = –0,53), e foram menores os valores respectivos para a SC-Sd (rS = –0,41 e –0,50). O erro standard das medidas foi: SC-Sn, 1,45; SC-Sd, 1,76. A QVRS do doente e do cuidador revelou uma ténue correlação com as medidas do sono. Conclusões. A escala SCOPA-sono é viável, consistente e útil para avaliar a perturbação do sono em doentes com DP. Detectou-se uma ténue relação entre a QVRS e a alteração do sono. [REV NEUROL 2006; 43: 577-83

Estudio longitudinal de doentes com doença de Parkinson (ELEP): objectivos e metodologia

La enfermedad de Parkinson (EP) es crónica y progresiva. Desde la perspectiva sociosanitaria, representa una fuente de sufrimiento para el paciente y sus cuidadores, así como una importante carga para la sociedad. La información actual sobre la EP es limitada en cuanto al conocimiento del curso evolutivo relacionado con: 1) el desarrollo y la evolución de los aspectos no motores de la enfermedad; 2) el impacto de estas manifestaciones sobre la discapacidad y la calidad de vida relacionada con la salud (CVRS); 3) los determinantes de la discapacidad y de la pérdida de CVRS; 4) los factores relacionados con la velocidad de progresión de la enfermedad; 5) las pautas de aplicación y la repercusión diferencial a largo plazo (sobre complicaciones, discapacidad, CVRS) de las medidas terapéuticas disponibles; y 6) el impacto de la EP sobre los cuidadores. Además, en la información existente se detecta heterogeneidad en la calidad de las propiedades métricas de los instrumentos de medida aplicados y de los sesgos de selección.Parkinson’s disease (PD) is a chronic and progressive disorder. It produces a significant burden not only for patients, but also for their family and caregivers, with a major socio-economic impact on society. Current knowledge on PD is characterized by scarce information about the evolutionary course of: 1) the non-motor PD features; 2) impact of non-motor PD features on disability and health related quality of life (HRQL) impairment; 3) factors related to disability and HRQL determinants; 4) factors that speed or slow the progression of PD; 5) differential long-term effect of available PD therapeutic schedules and their relationships with disability, complications, and HRQL; and 6) impact of the disease on patients’ caregivers. In addition, heterogeneity in the metric quality of the applied measures and selection bias are frequently foundA doença de Parkinson (DP) é crónica e progresiva. De uma perspectiva socio-sanitária, representa uma fonte de sufrimento para o paciente e seus cuidadores, assim como uma carga importante para a sociedade. A informação actual sobre a DP é limitada em quanto ao conhecimento do curso evolutivo relacionado com: 1) o desenvolvimento e a evolução dos aspectos não motores da doença; 2) o impacto destas manifestações sobre a discapacidade e a qualidade de vida relacionada com a saúde (QVRS); 3) os determinantes da discapacidade e da diminuição de QVRS; 4) os factores relacionados com a velocidade de progressão da doença; 5) as pautas de aplicação e a repercursão diferencial a longo prazo (sobre complicações, discapacidade, QVRS) das medidas terapêuticas disponíveis; e 6) o impacto da DP sobre os cuidadores. Além disso, na informação disponível há uma heterogeneidade na qualidade das propriedades métricas dos instrumentos de medida aplicados e dos enviesamentos de selecção

Criação e protocolo de seguimento longitudinal de uma coorte multipropósito de doentes com doença de Parkinson de diagnóstico recente: projecto VIP

La enfermedad de Parkinson (EP) es una enfermedad neurodegenerativa muy heterogénea desde el punto de vista etiológico, clínico y terapéutico, lo que dificulta la interpretación de resultados de estudios transversales. Son necesarios los registros de pacientes y los estudios longitudinales de cohortes bien caracterizadas desde el punto de vista clínico y terapéutico.Parkinson’s disease (PD) is a quite heterogeneous disorder, thus difficulting the interpretation of transversal studies. Patients’ registries and longitudinal studies can be considered as a priority in order to understand many still unknown aspects of the disease.A doença de Parkinson (DP) é uma doença neurodegenerativa muito heterogénea do ponto de vista etiológico, clínico e terapêutico, o que dificulta a interpretação de resultados de estudos transversais. São necessários os registos de doentes e os estudos longitudinais de coortes bem caracterizadas do ponto de vista clínico e terapêutico