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1.
Neuromodulation ; 25(6): 935-944, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34313376

RESUMO

OBJECTIVE: To evaluate the effects of bilateral caudal zona incerta (cZi) deep brain stimulation (DBS) for Parkinson's disease (PD) one year after surgery and to create anatomical improvement maps based on patient-specific simulation of the electric field. MATERIALS AND METHODS: We report the one-year results of bilateral cZi-DBS in 15 patients with PD. Patients were evaluated on/off medication and stimulation using the Unified Parkinson's Disease Rating Scale (UPDRS). Main outcomes were changes in motor symptoms (UPDRS-III) and quality of life according to Parkinson's Disease Questionnaire-39 (PDQ-39). Secondary outcomes included efficacy profile according to sub-items of UPDRS-III and simulation of the electric field distribution around the DBS lead using the finite element method. Simulations from all patients were transformed to one common magnetic resonance imaging template space for the creation of improvement maps and anatomical evaluation. RESULTS: Median UPDRS-III score off medication improved from 40 at baseline to 21 on stimulation at one-year follow-up (48%, p < 0.0005). PDQ-39 summary index did not change, but the subdomain activities of daily living (ADL) and stigma improved (25%, p < 0.03 and 75%, p < 0.01), whereas communication worsened (p < 0.03). For UPDRS-III sub-items, stimulation alone reduced median tremor score by 9 points, akinesia by 3, and rigidity by 2 points at one-year follow-up in comparison to baseline (90%, 25%, and 29%, respectively, p < 0.01). Visual analysis of the anatomical improvement maps based on simulated electrical fields showed no evident relation with the degree of symptom improvement and neither did statistical analysis show any significant correlation. CONCLUSIONS: Bilateral cZi-DBS alleviates motor symptoms, especially tremor, and improves ADL and stigma in PD patients one year after surgery. Improvement maps may be a useful tool for visualizing the spread of the electric field. However, there was no clear-cut relation between anatomical location of the electric field and the degree of symptom relief.


Assuntos
Estimulação Encefálica Profunda , Doença de Parkinson , Zona Incerta , Atividades Cotidianas , Estimulação Encefálica Profunda/métodos , Seguimentos , Humanos , Doença de Parkinson/diagnóstico , Qualidade de Vida , Resultado do Tratamento , Tremor/terapia
2.
Acta Neurol Scand ; 141(2): 168-176, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31693751

RESUMO

OBJECTIVE: The objectives of this study were to explore the changes in the activities of daily living (ADL) in persons with Parkinson's disease (pwPD) over time and to investigate possible differences in ADL performance between men and women with PD. MATERIALS & METHODS: One hundred twenty-nine persons (76 men) with a clinically established PD self-assessed their ADL performance from the time of diagnosis up to 8 years follow-up using the ADL taxonomy. Other demographic and clinical data (motor state, cognition, depression) were also collected and subjected to further analysis. RESULTS: Nine of 12 domains in the ADL taxonomy showed a change over time (Eating and Drinking [P = .009], Mobility [P < .001], Toilet activities [P = .031], Dressing [P < .001], Personal hygiene [P < .001], Communication [P < .001], Cooking [P = .001], Shopping [P < .001] and Cleaning [P < .001]). In addition to time, two domains, (Shopping [P = .007] and Cleaning [P = .027]) also showed an effect of gender with worse scores in women. The nine ADL domains showing effect of time, showed temporary improvement at 12 months follow-up, most probably due to dopaminergic medication. All nine domains deteriorated at later follow-up. CONCLUSIONS: As expected, there was deterioration in self-assessed performance in the majority od ADL domains over time. Women assessed their ADLs worse in two domains (Shopping and Cleaning) probably reflecting a general gender-related activity pattern rather than being a PD-specific finding.


Assuntos
Atividades Cotidianas , Doença de Parkinson , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Autoavaliação (Psicologia) , Fatores Sexuais
3.
Brain ; 141(10): 3023-3034, 2018 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-30165511

RESUMO

Pallidal deep brain stimulation is an established treatment in patients with dystonia. However, evidence from case series or uncontrolled studies suggests that it may lead in some patients to specific parkinsonian symptoms such as freezing of gait, micrographia, and bradykinesia. We investigated parkinsonian signs using the Movement Disorder Society Unified Parkinson's Disease Rating Scale motor score by means of observer-blinded video ratings in a group of 29 patients treated with pallidal stimulation and a non-surgical control group of 22 patients, both with predominant cervical dystonia. Additional assessments included MRI-based models of volume of neural tissue activated to investigate areas of stimulation related to dystonic symptom control and those likely to induce parkinsonian signs as well as an EMG analysis to investigate functional vicinity of stimulation fields to the pyramidal tract. Compared with controls, stimulated patients had significantly higher motor scores (median, 25th-75th percentile: 14.0, 8.0-19.5 versus 3.0, 2.0-8.0; P < 0.0001), as well as bradykinesia (8.0, 6.0-14.0 versus 2.0, 0.0-3.0; P < 0.0001) and axial motor subscores (2.0, 1.0-4.0 versus 0.0, 0.0-1.0; P = 0.0002), while rigidity and tremor subscores were not different between groups. Parkinsonian signs were partially reversible upon switching stimulation off for a median of 90 min in a subset of 19 patients tolerating this condition. Furthermore, the stimulation group reported more features of freezing of gait on a questionnaire basis. Quality of life was better in stimulated patients compared with control patients, but parkinsonian signs were negatively associated with quality of life. In the descriptive imaging analysis maximum efficacy for dystonia improvement projected to the posteroventrolateral internal pallidum with overlapping clusters driving severity of bradykinesia and axial motor symptoms. The severities of parkinsonian signs were not correlated with functional vicinity to the pyramidal tract as assessed by EMG. In conclusion, parkinsonian signs, particularly bradykinesia and axial motor signs, due to pallidal stimulation in dystonic patients are frequent and negatively impact on motor functioning and quality of life. Therefore, patients with pallidal stimulation should be monitored closely for such signs both in clinical routine and future clinical trials. Spread of current outside the internal pallidum is an unlikely explanation for this phenomenon, which seems to be caused by stimulation of neural elements within the stimulation target volume.


Assuntos
Estimulação Encefálica Profunda/efeitos adversos , Transtornos Parkinsonianos/etiologia , Torcicolo/terapia , Idoso , Feminino , Globo Pálido , Humanos , Masculino , Pessoa de Meia-Idade
4.
J Neurol Neurosurg Psychiatry ; 89(7): 710-716, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29386253

RESUMO

BACKGROUND: Several open-label studies have shown good effect of deep brain stimulation (DBS) in the caudal zona incerta (cZi) on tremor, including parkinsonian tremor, and in some cases also a benefit on akinesia and axial symptoms. The aim of this study was to evaluate objectively the effect of cZi DBS in patients with Parkinson's disease (PD). METHOD: 25 patients with PD were randomised to either cZi DBS or best medical treatment. The primary outcomes were differences between the groups in the motor scores of the Unified Parkinson's Disease Rating Scale (UPDRS-III) rated single-blindly at 6 months and differences in the Parkinson's Disease Questionnaire 39 items (PDQ-39). 19 patients, 10 in the medical arm and 9 in the DBS arm, fulfilled the study. RESULTS: The DBS group had 41% better UPDRS-III scores off-medication on-stimulation compared with baseline, whereas the scores of the non-surgical patients off-medication were unchanged. In the on-medication condition, there were no differences between the groups, neither at baseline nor at 6 months. Subitems of the UPDRS-III showed a robust effect of cZi DBS on tremor. The PDQ-39 domains 'stigma' and 'ADL' improved only in the DBS group. The PDQ-39 summary index improved in both groups. CONCLUSION: This is the first randomised blinded evaluation of cZi DBS showing its efficacy on PD symptoms. The most striking effect was on tremor; however, the doses of dopaminergic medications could not be decreased. cZi DBS in PD may be an addition to existing established targets, enabling tailoring the surgery to the needs of the individual patient.


Assuntos
Estimulação Encefálica Profunda , Doença de Parkinson/terapia , Zona Incerta , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença de Parkinson/complicações , Doença de Parkinson/diagnóstico por imagem , Qualidade de Vida , Método Simples-Cego , Resultado do Tratamento
6.
BMC Neurol ; 14: 89, 2014 Apr 25.
Artigo em Inglês | MEDLINE | ID: mdl-24761767

RESUMO

BACKGROUND: Deep brain stimulation (DBS) is an established treatment for patients with advanced parkinson's disease (PD). Research shows that women are under-represented among patients undergoing DBS surgery. This may be due to gender-biased selection of patients, but patients' wishes and attitudes may also contribute. This study investigated the decision making process to undergo DBS from the patient's perspective, and explored any gender patterns in the participants' decision-making. METHODS: All patients operated on with DBS for PD at the University Hospital of Northern Sweden between January 2002 and April 2010 were invited to an interview study. In this way 39 patients were recruited, 31 men and eight women. Three additional women, operated elsewhere, were recruited to acheive a more gender-balanced sample. In a mixed-method analysis, the interviews were analysed according to the constant comparison technique in grounded theory and descriptive statistics was used to present demographics and compare categories. RESULTS: Three different approaches to DBS were identified among the patients. 'Taking own initiative', included 48% of the patients and implied that the patients' own initiatives and arguments had been crucial for having surgery. 'Agreeing when offered', and accepting DBS when suggested by doctors embraced 43%. The third approach, 'Hesitating and waiting' included < 10% of the patients. Most of the men were either 'taking own initiative' or 'agreeing when offered'. The 11 women were evenly distributed in all three approaches. Among the interviewed, more women than men expressed strong fear of complications and more women consulted friends and relatives prior to deciding about DBS. Half of the patients had held a leadership position at work or in another organisation, and among patients 'taking own initiative' the proportion with leadership experiences was 80%. At time for surgery ten men but no woman were professionally active. CONCLUSION: This study suggests that many patients with advanced PD have to argue and struggle with their clinicians in order to be referred to a DBS-team. The study further suggests that patients' wishes, behaviour and position in society may all contribute to the skewed gender distribution among patients treated with DBS.


Assuntos
Tomada de Decisões , Estimulação Encefálica Profunda , Conhecimentos, Atitudes e Prática em Saúde , Doença de Parkinson/terapia , Adulto , Idoso , Estimulação Encefálica Profunda/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
7.
Neuromodulation ; 17(3): 272-7; discussion 277-8, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24033886

RESUMO

OBJECTIVES: Deep brain stimulation (DBS) is an established treatment for Parkinson's disease. Little is known about patients' own perceptions of living with the implanted hardware. We aimed to explore patients' own perceptions of living with an implanted device. MATERIALS AND METHODS: Semistructured interviews with open-ended questions were conducted with 42 patients (11 women) who had been on DBS for a mean of three years. The questions focused on patients' experiences of living with and managing the DBS device. The interviews were transcribed verbatim and analyzed according to the difference and similarity technique in grounded theory. RESULTS: From the patients' narratives concerning living with and managing the DBS device, the following four categories emerged: 1) The device-not a big issue: although the hardware was felt inside the body and also visible from outside, the device as such was not a big issue. 2) Necessary carefulness: Patients expressed the need to be careful when performing certain daily activities in order not to dislocate or harm the device. 3) Continuous need for professional support: Most patients relied solely on professionals for fine-tuning the stimulation rather than using their handheld controller, even if this entailed numerous visits to a remote hospital. 4) Balancing symptom relief and side-effects: Patients expressed difficulties in finding the optimal match between decrease of symptoms and stimulation-induced side-effects. CONCLUSIONS: The in-depth interviews of patients on chronic DBS about their perceptions of living with an implanted device provided useful insights that would be difficult to capture by quantitative evaluations.


Assuntos
Estimulação Encefálica Profunda/psicologia , Doença de Parkinson/terapia , Atividades Cotidianas , Adulto , Idoso , Estimulação Encefálica Profunda/efeitos adversos , Estimulação Encefálica Profunda/enfermagem , Desenho de Equipamento , Falha de Equipamento , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Doença de Parkinson/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Pesquisa Qualitativa , Autocuidado , Viagem
8.
Mov Disord Clin Pract ; 10(9): 1285-1292, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37772285

RESUMO

Background: The year 2023 marks the 30th anniversary of deep brain stimulation (DBS) of the subthalamic nucleus (STN) for Parkinson's disease (PD). This procedure prompted a universal interest in DBS for various brain disorders and resulted in a unique expansion of clinical and scientific collaboration between many disciplines, with impact on many aspects of society. Objective: To study the anthropology of DBS, that is, its ethno-geographic origins, its evolution, its impact on clinicians and scientists, and its influence on society at large. Material and Methods: The authors scrutinized the geo-ethnic origins of the pioneers of modern DBS, and they evaluated, based on the literature and on a long-term praxis, the development of DBS and its impact on clinicians, on healthcare, and on society. Results: Scientists and clinicians from various geo-ethnic origins pioneered modern DBS, leading to worldwide spread of this procedure and to the establishment of large multidisciplinary teams in many centers. Neurologists became actively involved in surgery and took on new laborious tasks of programming ever more complicated DBS systems. Publications sky-rocketed and the global spread of DBS impacted positively on several aspects of society, including healthcare, awareness of neurological diseases, interdisciplinary relations, conferences, patient organizations, unemployment, industry, etc. Conclusions: STN DBS has boosted the field of deep brain electrotherapy for many neurological and psychiatric illnesses, and DBS has generated a global benefit on many aspects of society, well beyond its clinical benefits on symptoms of diseases. With the ever-increasing indications for DBS, more positive global impact is expected.

9.
Front Psychiatry ; 14: 1059406, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36824668

RESUMO

In research and among clinicians, the focus has shifted from mainly symptom reduction and increasing functionality to a more recovery-oriented focus. Although there are instruments measuring recovery, there has been a lack of instruments sensitive enough to measure the quality of life for people with severe mental health disorders. Therefore, this study aimed to obtain a Swedish version of the Recovering Quality of Life (ReQoL) questionnaire adhering to best practice guidelines using various steps of translation, linguistic validation, and cognitive debriefing. The cognitive debriefing was conducted with seven participants, and all felt the items in the questionnaire were relevant to their health, apprehensible, and easy to complete. However, some issues were raised regarding wording and the concepts behind certain items. All feedback was considered, and some items were revised in response to criticism after continuous discussions. A Swedish version of ReQoL now exists, and although there is a need for ReQoL in different clinical research settings in Sweden, further research is required to psychometrically test the construct validity as well as reliability of the Swedish version in Sweden.

10.
Mov Disord Clin Pract ; 10(5): 783-793, 2023 May.
Artigo em Inglês | MEDLINE | ID: mdl-37205250

RESUMO

Background: Long-term data on the effects of deep brain stimulation (DBS) for essential tremor (ET) is scarce, especially regarding DBS in the caudal Zona incerta (cZi) and the posterior subthalamic area (PSA). Objectives: The aim of this prospective study was to evaluate the effect of cZi/PSA DBS in ET at 10 years after surgery. Methods: Thirty-four patients were included. All patients received cZi/PSA DBS (5 bilateral/29 unilateral) and were evaluated at regular intervals using the essential tremor rating scale (ETRS). Results: One year after surgery, there was a 66.4% improvement of total ETRS and 70.7% improvement of tremor (items 1-9) compared with the preoperative baseline. Ten years after surgery, 14 patients had died and 3 were lost to follow-up. In the remaining 17 patients, a significant improvement was maintained (50.8% for total ETRS and 55.8% for tremor items). On the treated side the scores of hand function (items 11-14) had improved by 82.6% at 1 year after surgery, and by 66.1% after 10 years. Since off-stimulation scores did not differ between year 1 and 10, this 20% deterioration of on-DBS scores was interpreted as a habituation. There was no significant increase in stimulation parameters beyond the first year. Conclusions: This 10 year follow up study, found cZi/PSA DBS for ET to be a safe procedure with a mostly retained effect on tremor, compared to 1 year after surgery, and in the absence of increase in stimulation parameters. The modest deterioration of effect of DBS on tremor was interpreted as habituation.

11.
Acta Neurochir (Wien) ; 154(3): 495-9, 2012 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-22109693

RESUMO

BACKGROUND: Essential tremor (ET) is the most common movement disorder and often affects the quality of life. There are only a few studies evaluating the quality of life after deep brain stimulation (DBS). FINDINGS: This is a prospective study of 16 patients undergoing deep brain stimulation in the caudal Zona incerta (cZi). The quality of life was assessed with Quality of Life in Essential Tremor Questionnaire (QUEST) and SF-36 scores, and the tremor was evaluated using the essential tremor rating scale (ETRS). RESULTS: In the tremor rating, hand tremor on the treated side improved by 95%, hand function by 78% and activities of daily living by 71%. The QUEST score showed statistically significant improvements in the psychosocial and activities of daily living subscores. The SF-36 score did not show any significant improvement. CONCLUSIONS: Although very good tremor reduction was achieved, the improvement in the quality of life scores was more modest. This could partly be explained by the quality of life being affected by other factors than the tremor itself.


Assuntos
Estimulação Encefálica Profunda/psicologia , Tremor Essencial/psicologia , Tremor Essencial/terapia , Qualidade de Vida/psicologia , Subtálamo/cirurgia , Idoso , Estimulação Encefálica Profunda/métodos , Tremor Essencial/fisiopatologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Vias Neurais/anatomia & histologia , Vias Neurais/fisiologia , Vias Neurais/cirurgia , Estudos Prospectivos , Recuperação de Função Fisiológica/fisiologia , Subtálamo/anatomia & histologia , Subtálamo/fisiologia , Resultado do Tratamento
12.
J Neurosurg ; 136(5): 1465-1469, 2022 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-34715655

RESUMO

Recently, a series of historical reports portrayed the first women neurosurgeons in various countries. One such woman, a pioneer on many levels, remained unrecognized: Judith Balkányi-Lepintre. She was the first woman neurosurgeon in France, the first woman war neurosurgeon for the French Army, and the first woman pediatric neurosurgeon in France. Born in 1912 to a Hungarian Jewish family, she graduated with honors from medical school in Budapest in 1935, then moved to Paris where she started neurosurgical training in 1937 at L'Hôpital de la Pitié under the mentorship of Clovis Vincent, the founder of French neurosurgery. Shortly after marrying a French colleague in 1940, she had to escape the Geheime Staatspolizei (Gestapo) in Paris and ended up in Algeria, where she joined the French Army of De Gaulle. As a neurosurgeon, she participated in the campaigns of Italy and France between 1943 and 1945. After the war, she returned to work at La Pitié Hospital. In 1947, she defended her doctoral thesis, "Treatment of cranio-cerebral wounds by projectiles and their early complications." Soon thereafter, she joined Europe's first dedicated children's hospital, Hôpital Necker-Enfants Malades in Paris, and contributed to the establishment of pediatric neurosurgery in France. She remained clinically and academically active at Necker until her death in 1982 but was never promoted.

13.
Mov Disord ; 26(11): 2101-6, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21626564

RESUMO

Studies of deep brain stimulation for dystonia have shown significant motor improvement. However, patients' perceptions of surgery and its effects have been less studied. We aimed to explore perceptions of changes in life in patients with primary dystonia after deep brain stimulation. Thirteen patients underwent thematic interviews 8-60 months after pallidal deep brain stimulation. Interviews were transcribed verbatim and analyzed with grounded theory. Patients described a profound impact of dystonia on daily life. After surgery, physical changes with a more upright posture and fewer spasms translated into an easier, more satisfying life with greater confidence. Notwithstanding this positive outcome, the transition from a limited life before surgery to opportunities for a better life exhibited obstacles: The "new life" after deep brain stimulation was stressful, including concern about being dependent on the stimulator as well as having to deal with interfering side effects from deep brain stimulation. The whole coping process meant that patients had to quickly shift focus from struggling to adapt to a slowly progressive disorder to adjustment to a life with possibilities, but also with new challenges. In this demanding transition process, patients wished to be offered better professional guidance and support. Even though deep brain stimulation provides people with primary dystonia with a potential for better mobility and more confidence, patients experienced new challenges and expressed the need for support and counseling after surgery. Grounded theory is a useful method to highlight patients' own experience and contributes to a deeper understanding of the impact of deep brain stimulation on patients with dystonia.


Assuntos
Estimulação Encefálica Profunda/métodos , Distúrbios Distônicos/psicologia , Distúrbios Distônicos/terapia , Percepção/fisiologia , Qualidade de Vida , Adulto , Idoso , Pessoas com Deficiência , Distúrbios Distônicos/fisiopatologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Resultado do Tratamento
14.
BMC Neurol ; 10: 85, 2010 Sep 23.
Artigo em Inglês | MEDLINE | ID: mdl-20863392

RESUMO

BACKGROUND: The Freezing of Gait Questionnaire (FOGQ) was developed in response to the difficulties of observing and quantifying freezing of gait (FOG) clinically as well as in laboratory settings. However, as the FOGQ is a clinician-administered patient-reported rating scale it cannot be used in postal surveys. Here we report the development and measurement properties of a self-administered version of the FOGQ (FOGQsa). METHODS: A clinical sample and a postal survey sample of non-demented people with Parkinson's disease (PD; total n = 225) completed the FOGQsa and questionnaires concerning physical functioning (PF) and fall-related self efficacy (FES). Additional questions (No/Yes) regarded previous falls and whether they were afraid of falling. The clinical sample was also assessed with the Unified PD Rating Scale (UPDRS). Thirty-five participants completed FOGQsa and were also assessed with the original version (FOGQ) in a clinical interview. RESULTS: There were no differences (P = 0.12) between FOGQ (median, 10; q1-q3, 2-14) and FOGQsa (median, 8; 2-14) scores. The Spearman (rs) and intra-class correlations between the two were 0.92 and 0.91 (95% CI, 0.82-0.95), respectively. For FOGQsa, corrected item-total correlations ranged between 0.68-0.89. Reliability was 0.93 (95% CI, 0.91-0.94). FOGQsa scores correlated strongest with UPDRS Item 14 (Freezing; rs, 0.76) and with FES (rs, -0.74). The weakest correlation was found with age (rs, 0.14). Fallers scored significantly (p < 0.001) higher on FOGQsa compared to non-fallers, median scores 8 (q1-q3, 4-14) versus 2 (0-7). Those expressing a fear of falling scored higher (p < 0.001) than those who did not, median scores 2 (0-7) versus 6 (2-14). CONCLUSIONS: The present findings indicate that the FOGQsa is as reliable and valid as the original interview administered FOGQ version. This has important clinical implications when investigating FOG in large scale studies.


Assuntos
Transtornos Neurológicos da Marcha/diagnóstico , Doença de Parkinson/complicações , Inquéritos e Questionários , Acidentes por Quedas , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Marcha , Transtornos Neurológicos da Marcha/etiologia , Humanos , Masculino , Pessoa de Meia-Idade
15.
Front Neurol ; 11: 779, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32849230

RESUMO

Shame and embarrassment related to Parkinson's disease (PD) are rarely addressed in clinical practice nor studied in neuroscience research, partly because no specific tool exists to detect them in PD. Objective: To develop a self-applied assessment tool of shame and embarrassment specifically related to PD or its treatment, to promptly identify the presence and severity of these two emotions in PD. Methods: Identification and selection of relevant items were obtained from the collection of PD patients' opinions during support groups and interviews. Several further items were added following a literature review. Subsequently, a two-phase pilot study was performed for identification of ambiguous items and omissions, and to obtain preliminary data on acceptability, reliability, validity and relevance of the new scale (SPARK). Results: A total of 105 PD patients were enrolled in the study. Embarrassment was reported in 85% of patients, while shame was present in 26%. Fifteen percent of patients did not describe any shame or embarrassment. On average, the intensity of these two emotions was low with a marked floor effect in SPARK items and subscales. However, SPARK total score inter-individual variability was important (range 1-84 out of 99). Acceptability and quality of data were satisfactory with no floor or ceiling effects (2.9% each) or missing data. Internal consistency (Cronbach's alpha) was 0.94 for total score and 0.73-0.87 for subscales. The scale correlated ≥0.60 with instruments measuring related constructs. Content validity was satisfactory. SPARK total score strongly correlated with impaired health-related quality of life (rS = 0.81), the propensity to feel embarrassed or ashamed (rS = 0.68 and 0.66, respectively), and anxiety (rS = 0.72) and depression (rS = 0.63) levels. Moderate to high correlations were observed between SPARK total score and apathy (rS = 0.46) and a more pronounced personality trait directed toward harm avoidance (rS = 0.46). No significant differences in SPARK scores were found by sex, education level, PD duration, Hoehn and Yahr stages or PD phenotype. Conclusion: Preliminary analysis of psychometric properties suggests that SPARK could be an acceptable and reliable instrument for assessing shame and embarrassment in PD. SPARK could help healthcare professionals to identify and characterize PD-induced shame and embarrassment.

16.
Parkinsons Dis ; 2017: 1939831, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28458943

RESUMO

Objective. To explore, in female and male patients with medically treated, moderately advanced Parkinson's disease (PD), their knowledge and reasoning about Deep Brain Stimulation (DBS). Methods. 23 patients with PD (10 women), aged 46-70, were interviewed at a mean of 8 years after diagnosis, with open-ended questions concerning their reflections and considerations about DBS. The interviews were transcribed verbatim and analysed according to the difference and similarity technique in Grounded Theory. Results. From the patients' narratives, the core category "Processing DBS: balancing symptoms, fears and hopes" was established. The patients were knowledgeable about DBS and expressed cautious and well considered attitudes towards its outcome but did not consider themselves ill enough to undergo DBS. They were aware of its potential side-effects. They considered DBS as the last option when oral medication is no longer sufficient. There was no difference between men and women in their reasoning and attitudes towards DBS. Conclusion. This study suggests that knowledge about the pros and cons of DBS exists among PD patients and that they have a cautious attitude towards DBS. Our patients did not seem to endorse an earlier implementation of DBS, and they considered that it should be the last resort when really needed.

17.
Parkinsons Dis ; 2017: 4151738, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29147597

RESUMO

OBJECTIVE: To evaluate a set of psychometric properties (i.e., data completeness, targeting, and external construct validity) of the Parkinson's disease Activities of Daily Living Scale (PADLS) in people with Parkinson's disease (PD). Specific attention was paid to the association between PADLS and PD severity, according to the Hoehn & Yahr (H&Y) staging. METHODS: The sample included 251 persons with PD (mean age 70 [SD 9] years). Data collection comprised a self-administered postal survey, structured interviews, and clinical assessments at home visits. RESULTS: Data completeness was 99.6% and the mean PADLS score was 2.1. Floor and ceiling effects were 22% and 2%, respectively. PADLS scores were more strongly associated (rs > 0.5) with perceived functional independence, ADL dependency, walking difficulties, and self-rated PD severity than with variables such as PD duration and cognitive function (rs < 0.5). PADLS scores differed across H&Y stages (Kruskal-Wallis test, p < 0.001). Those in H&Y stages IV-V had more ADL disability than those in stage III (Mann-Whitney U test, p < 0.001), whereas there were no significant differences between the other stages. CONCLUSION: PADLS revealed excellent data completeness, acceptable targeting, and external construct validity. It seems to be well suited as a rough estimate of ADL disability in people with PD.

18.
Parkinsonism Relat Disord ; 12(5): 296-301, 2006 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-16554182

RESUMO

Both posteroventral pallidotomy and pallidal deep brain stimulation (DBS) have a documented effect on Parkinsonian symptoms. DBS is more costly and more laborious than pallidotomy. The aim of this study was to analyse the respective long-term effect of each surgical procedure on contralateral symptoms in the same patients. Five consecutive patients, two women and three men, who at first surgery had a mean age of 64 years and a mean duration of disease of 18 years, received a pallidotomy contralateral to the more symptomatic side of the body. At a mean of 14 months later, the same patients received a pallidal DBS on the side contralateral to the pallidotomy. All patients had on-off phenomena and dyskinesias. There were three left-sided and two right-sided pallidotomies, and, subsequently, two left-sided and three right-sided pallidal DBS. The latest evaluation was performed 37 months (range 22-60) after the pallidotomy and 22 months (range 12-33) after the pallidal DBS. Mean UPDRS motor score pre-operatively was 49 and at last follow-up 33 (32.7% improvement, p<0.05). Appendicular items 20-26 contralateral to pallidotomy remained improved more significantly than contralateral to DBS. Dyskinesia scores were also improved more markedly contralateral to the pallidotomy. Two patients exhibited moderate dysarthria and one patient severe dysphonia following DBS. Symptoms contralateral to the chronologically older pallidotomy, especially dyskinesias, rigidity and tremor, were still more improved than symptoms contralateral to the more recent pallidal DBS, despite numerous post-operative patient visits to optimise stimulation parameters.


Assuntos
Estimulação Encefálica Profunda , Globo Pálido/fisiologia , Globo Pálido/cirurgia , Procedimentos Neurocirúrgicos , Doença de Parkinson/cirurgia , Doença de Parkinson/terapia , Idoso , Idoso de 80 Anos ou mais , Antiparkinsonianos/uso terapêutico , Avaliação da Deficiência , Feminino , Seguimentos , Lateralidade Funcional/fisiologia , Humanos , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Doença de Parkinson/tratamento farmacológico , Tomografia Computadorizada por Raios X
20.
Parkinsonism Relat Disord ; 20(2): 137-41, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24262870

RESUMO

BACKGROUND: Stereotactic functional neurosurgery on basal ganglia has a long history and the pioneers are mostly men. We aimed at finding out if there were women who have contributed pioneering work in this field. METHODS: The literature was searched to identify women who have been first to publish innovative papers related to human basal ganglia surgery. RESULTS: Six women fulfilling our criteria were found: Marion Smith, a British neuropathologist, made unique observations on stereotactic lesions of basal ganglia and thalamus on autopsied brains, and the lesions' relation to the reported clinical outcome. Natalia Bechtereva, a Russian neurophysiologist, pioneered the technique of therapeutic chronic deep brain stimulation to treat various brain disorders, including Parkinson's disease (PD). Denise Albe-Fessard, a French neurophysiologist, pioneered the technique of microelectrode recording (MER) in stereotactic functional neurosurgery. Gunvor Kullberg, a Swedish neurosurgeon, contributed in early CT imaging as well as early functional imaging of stereotactic lesions in PD and psychiatric patients. Hilda Molina, a Cuban neurosurgeon, established the Centro Internacional de Restauración Neurológica (CIREN) and pioneered there MER-guided transplant surgery in PD patients. Veerle Vandewalle, a Belgian neurosurgeon, pioneered in 1999 deep brain stimulation (DBS) for Tourette Syndrome. CONCLUSION: Although men constitute the great majority of neurosurgeons, neurologists and other neuro-specialists who have made groundbreaking contributions in basal ganglia surgery, there are women who have made equally important and unique contributions to the field. The principal two techniques used today in functional stereotactic neurosurgery, MER and DBS, have once upon a time been pioneered by women.


Assuntos
Gânglios da Base/cirurgia , Neurocirurgia/história , Feminino , História do Século XX , História do Século XXI , Humanos
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