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BACKGROUND: Members of vulnerable populations are underrepresented in Parkinson's disease (PD) research. A complex web of research barriers perpetuates this gap. Community-based research methods are one approach to addressing this issue. The present PD study was designed to examine the effectiveness of community-based interventions to overcome barriers and increase research participation among underrepresented groups (URGs). METHODS: Eight study sites across the US were selected and paired based on proposed interventions with specific URGs. Surveys assessed knowledge and attitudes toward PD research. Finally, researchers examined whether the present study affected recruitment to Fox Insight, an online PD research study also recruiting at each site. RESULTS: In total, 474 participants were recruited. At post-intervention for the FIRE-UP PD Study, recruitment increased significantly in intervention compared to control sites among Black and African American non-Hispanic/Latino populations (p = 0.003), White Hispanic/Latino (p = 0.003) populations, and Not Listed Hispanic/Latino populations (p < 0.001) as well as those with an educational attainment of a high school diploma/General Education Diploma (GED) (p = 0.009), and an income <$20,000 (p = 0.005) or between $20,000-$34,999 (p < 0.001). Study surveys measuring changes in awareness and attitudes toward PD research had mixed results. In Fox Insight, 181 participants were passively recruited with a shift toward more diverse participant demographics. CONCLUSION: Research participation demographics reflective of the general population are critical to PD investigation and treatment. The FIRE-UP PD Study showed the effectiveness of localized community engagement strategies in increasing URG recruitment to PD research. Therefore, further PD research employing community-based methods to improve diverse participant recruitment is needed.
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Doença de Parkinson , Seleção de Pacientes , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Negro ou Afro-Americano , Pesquisa Participativa Baseada na Comunidade , Escolaridade , Conhecimentos, Atitudes e Prática em Saúde , Hispânico ou Latino , Grupos Minoritários , Doença de Parkinson/terapia , Doença de Parkinson/psicologia , Estados Unidos , Populações Vulneráveis , BrancosRESUMO
INTRODUCTION: Parkinson's disease (PD) presents unique personal and social challenges, particularly for those with onset before the age of 50 years. AIM: The aim of this article is to evaluate sexual and non-sexual aspects of relationship satisfaction among persons with young-onset PD and their partners. MAIN OUTCOME MEASURES: The main outcome measures were Index of Sexual Satisfaction (ISS) and Golombok-Rust Inventory of Marital State (GRIMS). METHODS: Persons with PD (PWP) and partners who attended the 2005 National Parkinson Foundation Young Onset Network Conference were asked to complete a survey. Each survey included demographics, a clinical history questionnaire, the Beck Depression Inventory (BDI), ISS, and GRIMS. RESULTS: Sixty PWP (63% men, 85% in a relationship) responded to the survey. Median age was 50 years (range 29-62), with a median age at symptom onset of 43 years (range 17-55). ISS scores indicated clinically significant sexual dissatisfaction in 37%. Relationship dissatisfaction measured by the GRIMS was scored as "poor" or worse in 57%. Depressive symptomatology was severe in 19% and mild in 33%. Sexual dissatisfaction (ISS) correlated with relationship dissatisfaction (GRIMS) (correlation coefficient [CC] = 0.58, P < 0.001). Relationship dissatisfaction (GRIMS) correlated with depressive symptomatology (BDI) (CC = 0.38, P = 0.007). No correlations were found with any demographic or disease characteristics. Thirty-two couples (both the PWP and their partner) completed the surveys. Sexual and relationship dissatisfaction among PWP paralleled that of their partner (ISS: CC = 0.48, P = 0.005; GRIMS: CC = 0.61, P < 0.001). Depressive symptomatology of the PWP correlated with their partners' relationship dissatisfaction (CC = 0.46, P = 0.010). CONCLUSIONS: In this study, sexual and relationship dissatisfaction were prevalent among young-onset PD patients. PD patients were similar to their partners in their level of sexual and relationship dissatisfaction. The degree of dissatisfaction did not correlate with demographics or self-reported disease characteristics. Self-reported depressive symptomatology among PD patients was adversely associated with both their and their partner's relationship satisfaction. Wiel
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Casamento/psicologia , Doença de Parkinson/psicologia , Satisfação Pessoal , Comportamento Sexual , Disfunções Sexuais Fisiológicas/psicologia , Adolescente , Adulto , Idade de Início , Comorbidade , Estudos Transversais , Transtorno Depressivo/epidemiologia , Transtorno Depressivo/psicologia , Avaliação da Deficiência , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Doença de Parkinson/epidemiologia , Inventário de Personalidade , Disfunções Sexuais Fisiológicas/epidemiologia , Inquéritos e Questionários , Adulto JovemRESUMO
BACKGROUND: Patients hospitalized with Parkinson's disease (PD) require timely delivery of carbidopa-levodopa (C/L) medication. Ill-timed administration of C/L doses is associated with greater morbidity and longer lengths of stay. OBJECTIVE: To understand the barriers to timely C/L administration, and implement strategies to improve the administration of the drug to hospitalized PD patients. METHODS: Several key strategies were employed in 2015 to improve the timely delivery of C/L doses: 1. three kinds of nursing alert in the electronic medical record (EMR); 2. staff in-service education; 3. stocking immediate-release C/L into automated medication dispensing machines on key hospital units; 4. reports to nurse unit managers on timeliness of C/L administration; and 5. reconciliation of inpatient and outpatient levodopa orders by the hospital pharmacist upon admission. The primary outcome was the percent of C/L doses administered within 60, 30, and 15 minutes of scheduled time. RESULTS: Our urban hospital, affiliated with a Parkinson's Foundation Center of Excellence, had 5,939 C/L administrations in 2018. There was sustained improvement in timely delivery of doses, from 89.3% in 2012 to 96.5% in 2018 (within 60 minutes of the scheduled time), 65.5% to 86.4% (30 minutes), and 42.3% to 71.1% (15 minutes) (all pâ<â0.001). CONCLUSIONS: With multifaceted but relatively simple measures, we were able to "change the culture" so that hospitalized patients with Parkinson's disease receive levodopa on time.
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Agonistas de Dopamina/administração & dosagem , Departamentos Hospitalares , Hospitalização , Levodopa/administração & dosagem , Doença de Parkinson/tratamento farmacológico , Doença de Parkinson/enfermagem , Melhoria de Qualidade , Idoso , Carbidopa/administração & dosagem , Combinação de Medicamentos , Feminino , Departamentos Hospitalares/organização & administração , Departamentos Hospitalares/normas , Hospitais Urbanos , Humanos , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Avaliação de Processos em Cuidados de Saúde , Fatores de TempoRESUMO
OBJECTIVE: To evaluate the Cognitive Linguistic Quick Test (CLQT) as a cognitive screening tool in Parkinson disease (PD). METHODS: A total of 93 patients with PD were evaluated with the Mini-Mental State Examination (MMSE) and the CLQT. The CLQT provides separate ratings for 5 cognitive domains. Descriptive statistics, correlations between the tests, and diagnostic value for dementia were analyzed. RESULTS: Cognitive Linguistic Quick Test correlated well with MMSE. Diagnostic values for dementia were similar for the 2 instruments. Unlike the MMSE, the CLQT also provided domain-specific information on cognitive deficits. Cognitive domains were differentially affected between and within the demented and nondemented patient groups with PD: memory was the weakest domain in the demented group and attention in the nondemented. CONCLUSIONS: The CLQT is a valuable instrument in assessing cognitive dysfunction in PD. The CLQT is superior to the MMSE as it also provides cognitive domain-specific information.
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Transtornos Cognitivos/diagnóstico , Demência/diagnóstico , Testes Neuropsicológicos , Doença de Parkinson/diagnóstico , Idoso , Cognição , Transtornos Cognitivos/complicações , Demência/complicações , Feminino , Seguimentos , Humanos , Linguística , Masculino , Doença de Parkinson/complicações , Valor Preditivo dos Testes , Sensibilidade e EspecificidadeRESUMO
INTRODUCTION: Complementary therapies are commonly used by people with Parkinson's disease to relieve symptoms not fully addressed by pharmacologic and rehabilitation therapies currently available through medical clinics and programs. Three prior surveys in the US have shown that 40-85% of patients have used complementary therapies. We were interested in understanding what complementary therapies (CTs) our patients had used, to treat what symptoms, and whether they felt that the treatments were effective. METHODS: Patients scheduled for a return visit to a center neurologist were mailed a survey and instructed to bring the completed survey to their clinic visit. The survey contained questions on CTs used, effectiveness, and for what symptoms was the CT helpful. Willingness to participate in CT research was also included in the survey. RESULTS: 272 of 435 people with Parkinson's disease who completed the survey (62.5%) had tried some kind of CT, including a higher proportion of women than men (75.7% vs 53.8%; pâ¯<â¯0.01). Massage was the most frequently used therapy followed by yoga, Tai Chi, meditation and acupuncture. A high proportion of patients found the CT to be effective, for instance meditation was viewed as helpful by 85% of patients. Almost 2/3 of patients said they would be willing to participate in a research study of a CT. CONCLUSIONS: Complementary therapies are frequently used by people with Parkinson's disease coming to our center, and are viewed to be helpful for both motor and non-motor symptoms. Formal research assessments of therapies such as meditation are warranted.
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Terapia por Acupuntura/estatística & dados numéricos , Massagem/estatística & dados numéricos , Meditação , Doença de Parkinson/terapia , Avaliação de Resultados da Assistência ao Paciente , Tai Chi Chuan/estatística & dados numéricos , Yoga , Idoso , Idoso de 80 Anos ou mais , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: We undertook this study to identify patients with Parkinson disease (PD) with no or rare falls who may progress to frequent falling by their next annual follow-up visit. METHODS: We analyzed data in the National Parkinson Foundation Quality Improvement Initiative database to identify factors predicting which patients with PD with no or rare falls at the baseline visit will report at least monthly falls at the annual follow-up visit. Multivariable models were constructed using logistic regression. Variables were introduced in 4 blocks: in the 1st block, variables present at or before the baseline visit were entered; in the 2nd, baseline visit assessments; in the 3rd, interventions implemented during baseline visit; and, in the 4th block, changes in comorbidities, living situation, and treatment between visits. RESULTS: Of 3,795 eligible participants, 3,276 (86.3%) reported no or rare falls at baseline visit, and of them, 382 (11.7%) reported at least monthly falls at follow-up visit. Predictors included female sex, <90% diagnostic certainty, motor fluctuations, levodopa treatment, antidepressant treatment, prior deep brain stimulation (DBS), worse quality of life, Hoehn & Yahr stage 2 or 3, worse semantic fluency, and, between visits, addition of amantadine, referral to occupational therapy, social services, or DBS, new diagnoses of cancer or osteoarthritis, and increased emergency visits. CONCLUSIONS: This large-scale analysis identified several predictors of progression to falling in PD. Such identifiers may help target patient subgroups for falls prevention intervention. Some factors are modifiable, offering opportunities for developing such interventions.
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BACKGROUND: Recognizing the factors associated with falling in Parkinson's disease (PD) would improve identification of at-risk individuals. OBJECTIVE: To examine frequency of falling and baseline characteristics associated with falling in PD using the National Institute of Neurological Disorders and Stroke (NINDS) Exploratory Trials in PD Long-term Study-1 (NET-PD LS-1) dataset. METHODS: The LS-1 database included 1741 early treated PD subjects (median 4year follow-up). Baseline characteristics were tested for a univariate association with post-baseline falling during the trial. Significant variables were included in a multivariable logistic regression model. A separate analysis using a negative binomial model investigated baseline factors on fall rate. RESULTS: 728 subjects (42%) fell during the trial, including at baseline. A baseline history of falls was the factor most associated with post-baseline falling. Men had lower odds of post-baseline falling compared to women, but for men, the probability of a post-baseline fall increased with age such that after age 70, men and women had similar odds of falling. Other baseline factors associated with a post-baseline fall and increased fall rate included the Unified PD Rating Scale (UPDRS) Activities of Daily Living (ADL) score, total functional capacity (TFC), baseline ambulatory capacity score and dopamine agonist monotherapy. CONCLUSION: Falls are common in early treated PD. The biggest risk factor for falls in PD remains a history of falling. Measures of functional ability (UPDRS ADL, TFC) and ambulatory capacity are novel clinical risk factors needing further study. A significant age by sex interaction may help to explain why age has been an inconsistent risk factor for falls in PD.
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Acidentes por Quedas , Dopaminérgicos/uso terapêutico , Doença de Parkinson/tratamento farmacológico , Doença de Parkinson/fisiopatologia , Atividades Cotidianas , Idoso , Estudos de Coortes , Conjuntos de Dados como Assunto/estatística & dados numéricos , Progressão da Doença , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Índice de Gravidade de Doença , Fatores de TempoRESUMO
BACKGROUND: A construct calculated as the sum of items 13-15, 29, 30 of the Unified Parkinson's Disease Rating Scale (UPDRS) has been used as an "Ambulatory Capacity Measure" (ACM) in Parkinson disease (PD). Its construct validity has never been examined. A similar construct, consisting of the mean value of the same UPDRS items has been used under the acronym PIGD as a measure of postural instability and gait disorder in PD. OBJECTIVE: To examine the construct validity of the ACM and PIGD in PD. METHODS: We analyzed data in an existing database of 340 PD patients, Hoehn and Yahr stages (HYS) 1-5 who participated in a study of falls. Number of falls (NOF) was recorded over 4 weeks, and UPDRS (mental, ADL, and motor subscales), HYS, Activities Based Confidence Scale (ABC), Freezing of Gait Questionnaire (FOG), Five Times Sit-to-Stand (FTSS), Timed Up-and Go (TUG), Gait Velocity (GV), and Berg Balance Scale (BBS) evaluations were performed. Internal consistency was assessed by Cronbach's alpha. Construct validity was assessed through correlations of the ACM and PIGD to these measures and to their summed-ranks. A coefficient of determination was calculated through linear regression. RESULTS: Mean age was 71.4, mean age at diagnosis 61.4 years; 46% were women; mean UPDRS subscale scores were: Mental 3.7; ADL 15.7; motor: 27.1; mean ACM was 6.51, and mean PIGD 1.30. Cronbach's alpha was 0.78 for both ACM and PIGD. Spearman correlation coefficients between the ACM/PIGD and ABC, FOG, TUG, GV and BBS were 0.69, 0.72, 0.67, 0.58, and 0.70 respectively. Correlation between the ACM/PIGD and summed-ranks of HYS, NOF, ABC, FOG, FTSS, TUG, GV and BBS was high (Spearman r = 0.823, p < 0.0001); 68% of the variability in the summed-ranks was explained by ACM/PIGD. CONCLUSION: The ACM and the PIGD are valid global measures and accurately reflect the combined effects of the various components of ambulatory capacity in PD patients with HY stages 1-4.
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Transtornos Neurológicos da Marcha/diagnóstico , Transtornos Neurológicos da Marcha/etiologia , Doença de Parkinson/complicações , Transtornos de Sensação/diagnóstico , Transtornos de Sensação/etiologia , Índice de Gravidade de Doença , Acidentes por Quedas , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Medo/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença de Parkinson/psicologia , Reprodutibilidade dos Testes , Estatísticas não ParamétricasRESUMO
OBJECTIVES: To determine the rate of and identify reasons for discontinuation of entacapone treatment in Parkinson disease patients. METHODS: A retrospective study design was used, including medical record reviews and telephone call to the patient as needed. RESULTS: Two hundred and twenty-two Parkinson disease patients were started on entacapone over a period of 3 years. One hundred and twenty-two patients (56%) had discontinued the medication by the end of the follow up period. Reasons for discontinuation included lack of efficacy (46%), worsening of parkinsonian symptoms (28%), worsened cognition (20%), dyskinesia (17%), nausea (11%), diarrhea (9%), cost (4%), other side effect (8%), and other, non-medication related reasons (19%). Presence of wearing off at the time of initial treatment and male sex were associated with decreased dropout rates, while the presence of orthostatic hypotension increased the likelihood of discontinuation. Patient age, disease duration, Hoehn and Yahr stage, Unified Parkinson's Disease Rating Scale section II score, presence of dementia, hallucinations, dyskinesias, or depression, number of daily L-dopa doses, and concomitant treatment with dopamine agonists did not affect dropout rate. CONCLUSIONS: Lack of efficacy seems to be the main reason for entacapone discontinuation. Male patients with wearing off and no orthostatic hypotension seem to tolerate the medication better. Advanced disease stage, presence of cognitive dysfunction, and presence of dyskinesia should not necessarily preclude patients from being treated with entacapone, when otherwise indicated.
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Antiparkinsonianos/uso terapêutico , Catecóis/uso terapêutico , Doença de Parkinson/tratamento farmacológico , Fatores de Risco , Idoso , Idoso de 80 Anos ou mais , Esquema de Medicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Exame Neurológico , Nitrilas , Doença de Parkinson/fisiopatologia , Estudos Prospectivos , Estudos Retrospectivos , Fatores de TempoRESUMO
This study is a quantitative comparison of the sputum produced by 12 subjects with cystic fibrosis (CF) who received high-frequency chest compression (HFCC) and standard chest physical therapy (CPT) in randomized order. Six subjects routinely used manual CPT and six routinely used the HFCC. None had acute infections or hospitalization in the six weeks before the study. Two certified respiratory therapists alternated subjects and CPT vs HFCC order during the two weeks of the matched study. For all sessions, the expectorated sputum was collected in preweighed cups, which were reweighed immediately after collection and again after evaporation to dryness. The wet and dry weights of the sputum produced as a result of the two techniques were significantly different, with HFCC having greater weight. Regardless of the mode of therapy, the sputum produced by the subjects who regularly received HFCC had greater water content than did the sputum produced by those subjects who regularly received CPT. No significant difference was found between the two therapists regarding sputum expectorated by the subjects during CPT. These results show that sputum production by subjects with CF who receive CPT by certified respiratory therapists can be as great as the sputum produced by the same subjects who receive HFCC. The results also suggest that unknown factors attributed to the therapists may produce different levels of effort from time to time that may decrease the respiratory therapists' effectiveness, whereas the HFCC therapy may be more consistently effective because it is entirely machine based.
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Oscilação da Parede Torácica , Fibrose Cística/terapia , Escarro , Fibrose Cística/fisiopatologia , HumanosAssuntos
Atenção , Disfunção Cognitiva/terapia , Remediação Cognitiva/métodos , Transtornos Neurológicos da Marcha/terapia , Doença de Parkinson/terapia , Idoso , Atenção/fisiologia , Disfunção Cognitiva/etiologia , Feminino , Transtornos Neurológicos da Marcha/etiologia , Humanos , Masculino , Pessoa de Meia-Idade , Doença de Parkinson/complicações , Resultado do TratamentoRESUMO
BACKGROUND: Falls remain a significant cause of morbidity in PD. Risk factors are not well understood. OBJECTIVE: In this study we explore risk factors for falls in PD utilizing the cross-sectional, baseline data in the National Parkinson Foundation Quality Improvement Initiative (NPF-QII) database. Subjects are being followed prospectively, and this study will provide the basis for subsequent longitudinal analyses. METHODS: A cross-sectional analysis of data from 2,876 ambulatory patients with Parkinson disease enrolled in the NPF-QII at 18 sites. Main outcome measure was falling history in the 3 months preceding assessment. The following were considered as possible predictor variables: age, sex, height, weight, body mass index, disease duration, age at disease onset, investigator's confidence in the diagnosis, Hoehn and Yahr stage, rest tremor, ability to stand unassisted, coexistent pathologies (cardiovascular, respiratory, diabetes, cancer, neurological, osteoarthritis, and "other" comorbidities), anticholinergics, antidepressants, antipsychotics, cognitive enhancers, deep brain stimulation surgery, timed-up-and-go, semantic fluency, and 5 word recall. Variables with associations to the outcome measure in univariate analyses were analyzed in multivariable models using logistic regression. RESULTS: 37.2% of subjects experienced falls. In the multivariable regression model the following variables were found to be independently associated with falls: disease duration; Hoehn and Yahr stage; absence of rest tremor; cardiovascular, arthritis, or "other" comorbidity; antidepressants; deep brain stimulation surgery; timed-up-and-go; and, semantic fluency. CONCLUSION: Disease duration but not age is independently associated with falls in Parkinson disease. Timed-up-and-go accurately reflects falls risk. Impaired semantic fluency is independently associated with falls, while verbal memory is not. Comorbidities, antidepressants, and deep brain stimulation also contribute to falls risk.
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Acidentes por Quedas/estatística & dados numéricos , Doença de Parkinson/epidemiologia , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Fatores de Risco , Estados Unidos/epidemiologiaRESUMO
Mutations in the leucine-rich repeat kinase-2 gene (LRRK2) are responsible for some forms of familial as well as sporadic Parkinson's disease (PD). The purpose of this study was to examine the frequency of a single pathogenic mutation (6055G > A) in the kinase domain of this gene in United States and Tunisian familial PD and to compare clinical characteristics between patients with and without the mutation. Standardized case report forms were used for clinical and demographic data collection. We investigated the frequency of the most common substitution of LRRK2 (G2019S, 6055G>A) and its impact on epidemiological and phenotypic features. The frequency of mutations in Tunisian families was 42% (38/91) and in U.S. families 2.6% (1/39), with the unique opportunity to compare homozygous (n = 23) and heterozygous (n = 109) Tunisian carriers of G2019S substitutions. Individuals with G2019S substitutions had an older age at onset but few other differences compared with families negative for the substitution. Patients with LRRK2 mutations had typical clinical features of PD. Comparisons between individuals with heterozygous and homozygous LRRK2 mutations suggested that gene dosage was not correlated with phenotypic differences; however, the estimated penetrance was greater in homozygotes across all age groups.
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Saúde da Família , Glicina/genética , Doença de Parkinson/epidemiologia , Doença de Parkinson/genética , Proteínas Serina-Treonina Quinases/genética , Serina/genética , Adulto , Idoso , Idoso de 80 Anos ou mais , Comparação Transcultural , Análise Mutacional de DNA , Feminino , Testes Genéticos/métodos , Genótipo , Humanos , Serina-Treonina Proteína Quinase-2 com Repetições Ricas em Leucina , Masculino , Pessoa de Meia-Idade , Mutação/genética , América do Norte/epidemiologia , América do Norte/etnologia , Tunísia/epidemiologia , Tunísia/etnologia , População BrancaRESUMO
We sought to ascertain frequency, type, risk factors of falling, and resulting injuries among parkinsonian patients. A survey was mailed to all patients treated at our center between 1/1/2000 and 4/30/2002 (N = 1,417). Information was collected on falls within the past 2 years, related injuries, and use of health care services. A total of 1,131 responses (response rate, 79.8%) were received. After the exclusion of nonparkinsonian disorders, statistics for the remaining group (n = 1,092) and predictive statistics for those diagnosed before 1/1/2000 (n = 1,013) were calculated. Outcomes included falls, fractures, injuries, surgery, and related use of health care services. Explanatory variables included sex, age, age at diagnosis, disease duration, atypical parkinsonism, and dementia. Most patients (55.9%) were men; 12.2% had atypical parkinsonism; 12.5% had dementia; median age was 74.7 years; median disease duration was 7 years; 55.9% had at least one fall in the past 2 years; 65.0% of them sustained an injury; 33.0% sustained a fracture; 75.5% of injuries required health care services; 40.6% of fractures required surgery. Older age, atypical parkinsonism, longer disease duration, and dementia were risk factors for falling; female sex and older age were predictors of fractures. Need for health care services after an injury was higher among older patients. Further prospective studies will be necessary to elucidate the specific prognostic outcomes of injuries due to falls among parkinsonian patients, and the impact of these injuries on disease progression and quality of life.