Validation and clinical value of the MANAGE-PD tool: A clinician-reported tool to identify Parkinson's disease patients inadequately controlled on oral medications.

INTRODUCTION: Making Informed Decisions to Aid Timely Management of Parkinson's Disease (MANAGE-PD) is a clinician-reported tool designed to facilitate timely identification and management of patients with advancing Parkinson's disease (PD) with suboptimal symptom control while on standard therapy. The objective of this study was to evaluate the validity and clinical value of the tool. METHODS: Driven by structured inputs from a steering committee and panel of PD experts, the tool was developed to classify patients into 3 categories. Validity and clinical value were elucidated using a two-pronged approach: (i) hypothetical patient vignettes (n = 10) developed based on the MANAGE-PD tool and rated by 17 PD specialists and 400 general neurologists (GN) and (ii) patients with PD (n = 2546) managed in real-world clinical settings. Vignette validity was based on concordance between PD experts' clinical judgement and MANAGE-PD vignette categorization. Patient-level data was used for known-group comparisons (validity) and discordant pair analysis (clinical value). RESULTS: The tool demonstrated strong validity and clinical value among PD specialists (intraclass coefficient [ICC] 0.843; Fleiss weighted kappa [ƙweighted] 0.79) and GN (ICC 0.690; ƙweighted 0.65) using patient vignettes. MANAGE-PD also demonstrated real-world validity and clinical value based on ability to identify patients with incrementally higher clinical, economic, and humanistic PD burden across categories of the tool (p < 0.01). CONCLUSIONS: MANAGE-PD demonstrated robust validity and clinical value in identifying patients with suboptimal PD symptom control. Clinical use of MANAGE-PD may complement treatment decision-making and facilitate timely and comprehensive management of patients with advancing PD.

Patterns and predictors of referrals to allied health services for individuals with Parkinson's disease: A Parkinson's foundation (PF) QII study.

INTRODUCTION: Rehabilitation therapies are critical for optimizing quality-of-life and daily functions for individuals living with Parkinson's disease (PD). Thus, understanding the patterns of and under what conditions physicians make rehabilitation referrals is important for optimizing care. METHOD: We analyzed data from 5020 participants (4 countries) collected from 1/3/2016 to 4/20/2018 as part of the Parkinson's Foundation Quality Improvement Initiative (PF QII). Data were analyzed for single discipline and multidiscipline referrals to speech language pathology (SLP), physical therapy (PT), and occupational therapy (OT). Group comparisons (referred vs. not-referred) and regression procedures were implemented to determine demographic and clinical variables that were associated with an increased likelihood of rehabilitation referral. RESULTS: 35.3% of participants were referred to rehabilitation services. Of these, 25.1% received a multidiscipline referral. There was a statistically significant effect of disease stage on both single discipline (χ2(2) = 45.1, p < 0.0001) and multidiscipline (χ2(2) = 74.2, p < 0.0001) referrals, with higher rates in later stages. Referred vs. not-referred participants differed significantly on a number of variables; however, only falls in the 6-months prior, advanced- and moderate-stage disease, older age, hospital admissions, and higher caregiver burden were associated with an increased likelihood of rehabilitation referral (adjusted odds ratios ≥ 1, Range = 1.08 to 1.62). CONCLUSIONS: Despite evidence supporting multidiscipline and proactive rehabilitation in PD, the majority of referrals were made to a single service and may be reactions to falls or advancing disease. Data suggest there may be missed opportunities for optimizing care through proactive rehabilitation interventions.

Variations in hospitalization rates across Parkinson's Foundation Centers of Excellence.

INTRODUCTION: Patients with Parkinson's disease (PD) are at increased risk for hospitalization and often experience worsening of PD when hospitalized. It is therefore important to identify strategies to prevent hospitalization. METHODS: Hospital encounter rates in different Parkinson's Foundation Centers of Excellence in United States, Canada, Israel and the Netherlands were analyzed as part of the Parkinson Foundation Parkinson's Outcomes Project (PF-POP). Multivariate logistic regression was used to estimate the odds ratio for hospitalization, adjusted for risk factors. RESULTS: Baseline age, disease duration, other relative than spouse/partner as care giver, cancer, arthritis, other comorbidities, falls, use of levodopa, use of dopamine agonist, use of COMT inhibitor, occupational therapy before the baseline visit, PDQ-39, MSCI total score and time between visits were significantly associated with the risk of hospital encounters. After adjustment for these factors, two centers had significantly lower odds for hospitalization admission and ER visit (minimum OR 0.3) and four centers had significantly higher odds (maximum OR 1.5) than the average center. Four centers had significantly lower hazard ratios for time to re-hospitalization compared to the average center. Reducing hospital admission rates in those centers with higher than average rates would reduce overall hospitalizations by 11%. Applied to PD patients over 65 nationwide this represents a potential for cost savings of greater than $1 billion over 48 months. CONCLUSION: Encounter rates vary even across expert centers and suggest that practices carried out in some centers may reduce the risk of hospitalization. Further research will be necessary to identify these practices and implement them more widely to improve care for people with PD.

Coexistent Osteoarthritis and Parkinson's Disease: Data from the Parkinson's Foundation Outcomes Project.

BACKGROUND: The impact of concurrent osteoarthritis on mobility and mortality in individuals with Parkinson's disease is unknown. OBJECTIVE: We sought to understand to what extent osteoarthritis severity influenced mobility across time and how osteoarthritis severity could affect mortality in individuals with Parkinson's disease. METHODS: In a retrospective observational longitudinal study, data from the Parkinson's Foundation Quality Improvement Initiative was analyzed. We included 2,274 persons with Parkinson's disease. The main outcomes were the effects of osteoarthritis severity on functional mobility and mortality. The Timed Up and Go test measured functional mobility performance. Mortality was measured as the osteoarthritis group effect on survival time in years. RESULTS: More individuals with symptomatic osteoarthritis reported at least monthly falls compared to the other groups (14.5% vs. 7.2% without reported osteoarthritis and 8.4% asymptomatic/minimal osteoarthritis, p = 0.0004). The symptomatic group contained significantly more individuals with low functional mobility (TUG≥12 seconds) at baseline (51.5% vs. 29.0% and 36.1%, p < 0.0001). The odds of having low functional mobility for individuals with symptomatic osteoarthritis was 1.63 times compared to those without reported osteoarthritis (p < 0.0004); and was 1.57 times compared to those with asymptomatic/minimal osteoarthritis (p = 0.0026) after controlling pre-specified covariates. Similar results hold at the time of follow-up while changes in functional mobility were not significant across groups, suggesting that osteoarthritis likely does not accelerate the changes in functional mobility across time. Coexisting symptomatic osteoarthritis and Parkinson's disease seem to additively increase the risk of mortality (p = 0.007). CONCLUSION: Our results highlight the impact and potential additive effects of symptomatic osteoarthritis in persons with Parkinson's disease.

Changes in Prescribing Practices of Dopaminergic Medications in Individuals with Parkinson's Disease by Expert Care Centers from 2010 to 2017: The Parkinson's Foundation Quality Improvement Initiative.

BACKGROUND: During the past decade, there has been increasing awareness of the side effects of dopamine agonists (DAs), including impulse control disorders. We hypothesized that there may be a shift toward more conservative use of DAs. OBJECTIVE: To explore the change in prescribing practices for dopaminergic medications in Parkinson's disease between 2010 and 2017. METHODS: Data were collected from the Parkinson's Foundation Quality Improvement Initiative registry. Baseline characteristics were compared between the 2010 and 2017 cohorts using chi-squared tests for discrete and t tests for continuous variables. Logistic regressions were conducted for each class of medications to assess the effect of time points (2010 vs. 2017) and prespecified covariates on the probability of prescribing. RESULTS: A total of 2,717 participants from 2010 and 2,900 participants from 2017 were included in the analysis. Mean (standard deviation) age was 67.4 (10) and 68.7 (9.3) for the 2010 and 2017 cohorts, respectively (P < 0.0001). After controlling for baseline characteristics, DA use was unchanged (P = 0.1172). The odds of using monoamine oxidase B inhibitors was 52% higher in 2017 than in 2010 (P < 0.0001), 38% lower for catechol-O-methyltransferase inhibitors (P < 0.0001), 25% lower for amantadine (P < 0.0001), and 31% lower for anticholinergics (P = 0.0153). There was no difference in the utilization of levodopa in the 2 cohorts (86.1% vs. 86.2%; P = 0.5783). CONCLUSIONS: Despite increasing awareness of impulse control disorders, there has been no reduction in the use of DAs during the past decade. Overall, there is less utilization of adjunctive classes of drugs except for an increase in the use of monoamine oxidase B inhibitors.

Predictors of clinically meaningful change in PDQ-39 in Parkinson's disease.

OBJECTIVE: To determine predictors of clinically meaningful change in Health-Related Quality of Life (HRQL) in patients with Parkinson's disease (PD). BACKGROUND: There is limited literature on longitudinal predictors of change in HRQL in PD. METHODS: Data were collected from the National Parkinson Foundation Quality Improvement Initiative (NPF-QII) registry, a multicenter, longitudinal observational study. HRQL is measured by the Parkinson's Disease Questionnaire-39 (PDQ-39). We calculated the PDQ-39 change between every two consecutive visits and generated binary outcomes using the threshold for clinically meaningful change (previously determined to be 1.6). We used chi-squared tests for discrete and t-test for continuous variables for baseline characteristic comparison between patient groups of interest. Generalized linear mixed models with repeated measures were used for identifying the predictors of whether PDQ-39 outcomes worsen over time. RESULTS: Of 8041 subjects enrolled, 5250 had at least one follow-up visit and were included in the analysis. Subjects were separated into two groups, "worse" and "not worse" based on PDQ-39 change >1.6 across consecutive visits. The "worse" group was more likely to be older (p = 0.001), to have motor fluctuations (p = 0.011), be on cognitive enhancers (p = 0.01), and to have more impaired immediate five-word recall (p = 0.04). The "non-worse" group was more likely to have rest tremor (p = 0.003), and to utilize social work/counseling (p = 0.046). CONCLUSIONS: The majority of predictors of worsening of HRQL are baseline disease and demographic characteristics that are difficult to modify. The positive effect of social service/counseling is intriguing and important to further explore in controlled interventional studies.

Sex disparities in access to caregiving in Parkinson disease.

OBJECTIVE: To compare access to caregiving between men and women with Parkinson disease (PD). METHODS: This was a cross-sectional and longitudinal study among participants with PD enrolled in the National Parkinson Foundation Parkinson's Outcomes Project from 2009 to 2014 at 21 international sites. The primary outcome measures were presence of a caregiver at the baseline visit, caregiver burden as measured by the Multidimensional Caregiver Strain Index (MCSI) at baseline, and time to first paid caregiver. RESULTS: A total of 7,209 participants (63% men, 37% women) with PD were evaluated. Men had a mean age of 66.0 (SD 9.8) years, and women had a mean age of 66.9 (SD 9.7) years. More men than women had a caregiver (88.4% vs 79.4%, p < 0.0001). Caregivers of men reported greater strain than those of women (MCSI score 19.9 vs 16.4, p < 0.0001). These differences persisted after controlling for age, disease stage, number of comorbidities, cognitive and mobility measures, and health-related quality of life. In addition, the odds of caregiver accompaniment at baseline visit were lower for women compared to men (odds ratio 0.76, 95% confidence interval [CI] 0.67-0.86), and women had a faster rate to using a paid caregiver than men (hazard ratio 1.76, 95% CI 1.35-2.28) after controlling for potential confounders. CONCLUSIONS: Informal caregiving resources are lower for women than men with PD, despite the finding that their caregivers report less strain than those of men. In addition, women are more likely to use formal, paid caregivers. Strategies to improve access to caregiving, particularly for women, are needed.

Prevalencia de dolor de hombro y sus factores asociados en lesionados medulares parapléjicos usuarios de silla de ruedas / Shoulder pain prevalence and associated factors in spinal cord-injured paraplegic wheelchair users

INTRODUCCIÓN: la prevalencia de dolor de hombro en pacientes parapléjicos usuarios de silla de ruedas es elevada. existe consenso en que el uso de la silla de ruedas manual es un factor importante en el origen de este dolor. no existen estudios en Chile acerca del tema. OBJETIVO: determinar la prevalencia y factores asociados a dolor de hombro en personas con paraplejia secundaria a lesión medular traumática, usuarios de sillas de ruedas, describiendo también las características del dolor. MATERIALES Y MÉTODOS: estudio descriptivo transversal en personas adultas con paraplejia secundaria a lesión medular traumática, que cumplieron los criterios de inclusión. previo consentimiento informado, se les aplicó un cuestionario ISCIPDS:B, enfocado a dolor de hombro. además de preguntar qué tipo de silla de ruedas utilizan, tiempo de autopropulsión, uso de guantes de propulsión y ocupación previa a la lesión medular. se recuperaron datos de registros en ficha clínica para identificar sexo, edad, fecha del accidente, ASIA impairment scale (AIS) y nivel neurológico de la lesión. RESULTADOS: 59 pacientes cumplieron los criterios de inclusión. de ellos, el 61% de ellos refirió dolor en hombro (s). no hubo una asociación estadísticamente significativa entre el dolor en el hombro y la edad, tiempo de evolución de lesión medular, AIS, nivel de lesión neurológica, tipo de silla de ruedas ni el tiempo de uso de la silla de ruedas manual. hubo una asociación estadísticamente significativa entre uso de guantes de propulsión y el dolor de hombro. la afectación bilateral es más frecuente que unilateral. el dolor promedio fue de NRS 5,6. la duración fue referida principalmente como constante, mayor a 1 hora pero menor a 24 horas. la mayor intensidad de dolor se reportó como vespertina. CONCLUSIONES: la prevalencia de dolor de hombro en pacientes chilenos con paraplejia secundaria a lesión medular traumática es alta. es necesaria mayor investigación para determinar si los hallazgos de este estudio se extrapolan a la población general con lesión medular traumática.

INTRODUCCIÓN: the prevalence of shoulder pain in paraplegic patients using wheelchair is high. there is consensus that the use of manual wheelchair is an important factor in the origin of this pain. there are no studies in Chile about this. OBJECTIVE: to determine the prevalence and factors associated with shoulder pain in paraplegic patients for traumatism with spinal cord injury (SCI) wheelchair users, also describing the characteristics of pain. MATERIALS AND METHODS: descriptive transversal study in adults paraplegic patients for traumatism with SCI, who met inclusion criteria. an ISCIPDS:B questionnaire was previously informed, focused on shoulder pain, also asking what kind of wheelchair is being used, time of propulsion, use of propulsion gloves, and if it was being used before the spinal cord injury. further clinical record data were retrieved to identify gender, age, date of accident, ASIA, and neurological injury level. RESULTS: 59 patients met the inclusion criteria, 61% of them reported shoulder pain. there was no statistically significant association between shoulder pain and age, duration of SCI, ASIA, neurological level of injury, type of wheelchair, nor usage time of the manual wheelchair. there was a statistically significant association between the use of gloves propulsion and shoulder pain. bilateral involvement is more often. the average pain was NRS 5.6. the duration was mainly referred as a constant greater than 1hour but less than 24hours. the greater intensity of pain was reported during the evening. CONCLUSIONS: the prevalence of shoulder pain in chilean paraplegic for spinal cord traumatic injury is high. more research is needed to determine whether the findings of this study are extrapolated to the general population.

Regular Exercise, Quality of Life, and Mobility in Parkinson's Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data.

BACKGROUND: Research-based exercise interventions improve health-related quality of life (HRQL) and mobility in people with Parkinson's disease (PD). OBJECTIVE: To examine whether exercise habits were associated with changes in HRQL and mobility over two years. METHODS: We identified a cohort of National Parkinson Foundation Quality Improvement Initiative (NPF-QII) participants with three visits. HRQL and mobility were measured with the Parkinson's Disease Questionnaire (PDQ-39) and Timed Up and Go (TUG). We compared self-reported regular exercisers (≥2.5 hours/week) with people who did not exercise 2.5 hours/week. Then we quantified changes in HRQL and mobility associated with 30-minute increases in exercise, across PD severity, using mixed effects regression models. RESULTS: Participants with three observational study visits (n = 3408) were younger, with milder PD, than participants with fewer visits. After 2 years, consistent exercisers and people who started to exercise regularly after their baseline visit had smaller declines in HRQL and mobility than non-exercisers (p < 0.05). Non-exercisers worsened by 1.37 points on the PDQ-39 and a 0.47 seconds on the TUG per year. Increasing exercise by 30 minutes/week was associated with slower declines in HRQL (-0.16 points) and mobility (-0.04 sec). The benefit of exercise on HRQL was greater in advanced PD (-0.41 points) than mild PD (-0.14 points; p < 0.02). CONCLUSIONS: Consistently exercising and starting regular exercise after baseline were associated with small but significant positive effects on HRQL and mobility changes over two years. The greater association of exercise with HRQL in advanced PD supports improving encouragement and facilitation of exercise in advanced PD.

Impacto del dolor en la calidad de vida del lesionado medular / Impact of pain on quality of life of patients with spinal cord injury

Objetivo: Determinar las características demográficas y de calidad de vida de pacientes con lesión medular y relacionar dolor y calidad de vida (CV) en la población en estudio. Lugar de estudio: Hospital del Trabajador de Santiago, Chile Material y Método: Pacientes parapléjicos adultos con lesión medular completa, y que dieron su consentimiento, completaron el test SF-36 V2 (36 item Short Form Health Survey Versión 2), para medir calidad de vida. Para caracterizar el dolor en los lesionados medulares estudiados, se utilizó el ISCIPBDS (The International Spinal Cord Injury Pain Basic Data Set). También se solicitó información médica y sociodemográfica. Resultados: De una población total de 56 pacientes parapléjicos por trauma raquimedular, 40 pacientes participaron. El 65 por ciento reportó haber tenido dolor los últimos 7 días. 34,6 por ciento de los pacientes con dolor, presentó más de un tipo de dolor. La CV de los pacientes con dolor fue más baja tanto en los componentes físico y mental, como en todos los dominios del SF-36, al ser comparados con pacientes sin dolor. Los pacientes parapléjicos con dolor neuropático presentaron una CV significativamente menor tanto en el componente físico como mental. Los pacientes con dolor severo mostraron una CV significativamente menor en el componente físico. Conclusión: la percepción de la CV es menor en la población de parapléjicos traumáticos con dolor...

Objective: To determine demographic characteristics and associations between pain of patients with traumatic spinal cord injury (SCI) and their quality of life (QoL). Setting: Hospital del Trabajador in Santiago, Chile Method: paraplegic adult patients with complete traumatic spinal cord injury who gave their consent to participate completed the 36 ítem Short Form Health Survey Versión 2 (SF-36 V 2) to assess quality of life. The International Spinal Cord Injury Pain Basic Data Set (ISCIPBDS) was used to collect information about the pain in the SCI population. Sociodemographic and medical data were also solicited. Results: Of a total population of 56 traumatic paraplegic patients, 40 participated. 65 percent of the sample reported to have pain the last 7 days. 34,6 percent of patients with pain had more than one type of pain. QoL in patients with pain was lower in physical and mental components summaries and in all subscales of the SF-36 survey as compared with patients without pain. Paraplegic patients with neuropathic pain had significant lower QoL in both mental and physical components summaries. Patients with severe pain had significant lower QoL in physical component summary. Conclusions: The perceived QoL is decreased in the traumatic paraplegic population with pain...