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1.
BMJ Open Respir Res ; 8(1)2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33771814

RESUMO

BACKGROUND: There is a paucity of UK data to aid healthcare professionals in predicting which patients hospitalised with community-acquired pneumonia (CAP) are at greatest risk of 30-day readmission and to determine which readmissions may occur soonest. METHODS: An analysis of CAP cases admitted to nine UK hospitals participating in the Advancing Quality Pneumonia Programme. RESULTS: An analysis was performed of 12 157 subjects hospitalised with CAP in the Advancing Quality Programme Database. 26% of those discharged were readmitted within 30 days with readmission predicted by comorbidity including non-metastatic cancer, diabetes with complications and chronic kidney disease. 41% and 66% of readmissions occurred within 7 and 14 days of discharge, respectively. Patients readmitted within 14 days were more likely to have metastatic cancer (6.6% vs 4.5%; p=0.03) compared with those readmitted at 15-30 days. CONCLUSIONS: A quarter of patients hospitalised for CAP are readmitted within 30 days; of those, two-thirds are readmitted within 2 weeks. Further research is required to determine whether such readmissions might be preventable through imple menting measures including in-hospital cross-specialty comorbidity management, convalescence in intermediate care, targeted rehabilitation and advanced care planning.


Assuntos
Infecções Comunitárias Adquiridas , Pneumonia , Infecções Comunitárias Adquiridas/epidemiologia , Infecções Comunitárias Adquiridas/terapia , Hospitalização , Humanos , Readmissão do Paciente , Pneumonia/epidemiologia , Pneumonia/terapia , Fatores de Risco
2.
Disabil Rehabil Assist Technol ; 16(5): 490-496, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-31512539

RESUMO

INTRODUCTION: Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective experience of using telehealth. This study was designed to examine the experiences of using telemonitoring in patients with MND on noninvasive ventilation (NIV). METHODS: Semi-structured interviews were conducted with seven patients (five males; mean age = 63 yrs; median illness duration = 14 m), who used a telemonitoring device for 24 weeks. Caregivers were present at five of the interviews; they supported communications and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. RESULTS: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could reduce costs, save time and ameliorate hassles associated with attending hospital appointments. Participants articulated that telemonitoring enabled symptom awareness and interpretation; the device also enabled the participants to raise concerns and/or requests to the healthcare professionals via the messaging system. Participants confirmed that the telemonitoring device was easy to use, despite some technical issues. CONCLUSIONS: Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients' well-being, while potentially reducing unnecessary clinical contact.Implications for RehabilitationCare for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration.Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring.Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients.Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.


Assuntos
Doença dos Neurônios Motores , Ventilação não Invasiva , Telemedicina , Cuidadores , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
3.
ERJ Open Res ; 6(3)2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32743003

RESUMO

BACKGROUND: We describe implementation of a clinical decision support system, a computer-guided consultation (CGC), in the assessment of subjects referred with suspected obstructive sleep apnoea syndrome (OSAS). METHODS: Two cohorts of patients were assessed. The first 100 cases had data collected with the CGC by a specialist sleep physician (stage1). A further 100 cases were assessed by a nonspecialist using the CGC (stage 2). For each case, the diagnosis suggested by the CGC was compared with the final diagnosis made by a second specialist sleep physician blinded to the CGC diagnosis. RESULTS: Stage 1: of 100 people evaluated, a final diagnosis of OSAS was made by both the sleep specialist and CGC in 88% of cases. In 7 of the remaining 12 cases, both agreed there was "No evidence of OSAS"; in 5 cases the CGC did not reach a final diagnosis instead prompting specialist referral. Stage 2: 100 people were evaluated; 95% were evaluable. Both CGC and the sleep specialist made a diagnosis of OSAS in 83 cases (87%), in 5 cases both agreed there was no OSAS, whereas in 7 cases the CGC prompted a specialist review due to unexplained symptoms. The CGC was concordant with the final diagnosis in 95% and 93% of cases in the two cohorts, respectively and where there was doubt, prompted for clinical review. No OSAS cases were overlooked by the CGC. CONCLUSION: An intelligent CGC program creates opportunities in sleep medicine management pathways to safely yet effectively utilise nonspecialists working under specialist supervision.

4.
JAMA ; 323(1): 60-69, 2020 01 07.
Artigo em Inglês | MEDLINE | ID: mdl-31804680

RESUMO

Importance: Malignant pleural effusion (MPE) is challenging to manage. Talc pleurodesis is a common and effective treatment. There are no reliable data, however, regarding the optimal method for talc delivery, leading to differences in practice and recommendations. Objective: To test the hypothesis that administration of talc poudrage during thoracoscopy with local anesthesia is more effective than talc slurry delivered via chest tube in successfully inducing pleurodesis. Design, Setting, and Participants: Open-label, randomized clinical trial conducted at 17 UK hospitals. A total of 330 participants were enrolled from August 2012 to April 2018 and followed up until October 2018. Patients were eligible if they were older than 18 years, had a confirmed diagnosis of MPE, and could undergo thoracoscopy with local anesthesia. Patients were excluded if they required a thoracoscopy for diagnostic purposes or had evidence of nonexpandable lung. Interventions: Patients randomized to the talc poudrage group (n = 166) received 4 g of talc poudrage during thoracoscopy while under moderate sedation, while patients randomized to the control group (n = 164) underwent bedside chest tube insertion with local anesthesia followed by administration of 4 g of sterile talc slurry. Main Outcomes and Measures: The primary outcome was pleurodesis failure up to 90 days after randomization. Secondary outcomes included pleurodesis failure at 30 and 180 days; time to pleurodesis failure; number of nights spent in the hospital over 90 days; patient-reported thoracic pain and dyspnea at 7, 30, 90, and 180 days; health-related quality of life at 30, 90, and 180 days; all-cause mortality; and percentage of opacification on chest radiograph at drain removal and at 30, 90, and 180 days. Results: Among 330 patients who were randomized (mean age, 68 years; 181 [55%] women), 320 (97%) were included in the primary outcome analysis. At 90 days, the pleurodesis failure rate was 36 of 161 patients (22%) in the talc poudrage group and 38 of 159 (24%) in the talc slurry group (adjusted odds ratio, 0.91 [95% CI, 0.54-1.55]; P = .74; difference, -1.8% [95% CI, -10.7% to 7.2%]). No statistically significant differences were noted in any of the 24 prespecified secondary outcomes. Conclusions and Relevance: Among patients with malignant pleural effusion, thoracoscopic talc poudrage, compared with talc slurry delivered via chest tube, resulted in no significant difference in the rate of pleurodesis failure at 90 days. However, the study may have been underpowered to detect small but potentially important differences. Trial Registration: ISRCTN Identifier: ISRCTN47845793.


Assuntos
Derrame Pleural Maligno/terapia , Pleurodese/métodos , Talco/administração & dosagem , Idoso , Tubos Torácicos , Drenagem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Toracoscopia , Falha de Tratamento
6.
Artigo em Inglês | MEDLINE | ID: mdl-30912468

RESUMO

Objective: Previous studies suggest a positive impact of telehealth in the care of people with motor neuron disease/amyotrophic lateral sclerosis (MND/ALS). This study reports the development of self-reported questions for telemonitoring, using a tablet-based device Careportal®, in the care of patients with MND on noninvasive ventilation (NIV) and its initial impact. Methods: The study consisted of a question development phase and an evaluation phase of the use of Careportal®. The development phase employed a modified Delphi process. The evaluation phase involved a 24-week pilot study with 13 patients (median age = 66; median illness duration = 14 m), who were using NIV. The participants completed overnight oximetry and self-report questions via Careportal® each week, generating interventions where required. Patient-ventilator interaction (PVI) data were monitored and the revised ALS functional rating scale (ALSFRS-R) was completed. Results: Telemonitoring encompassing the newly developed 26-item symptom questions showed good feasibility and validity. During the evaluation phase, 61 interventions were made for 10 patients, including seven patients who had routine clinic appointments during the trial to optimize care. ALSFRS-R showed significant illness deteriorations. Blood oxygen saturation (SpO2) levels were maintained, time ventilated and inspiratory pressures increased during the trial. Conclusions: The MND OptNIVent question set together with weekly ventilator and oximetry monitoring facilitated the maintenance of ventilation and SpO2 levels despite illness progression. The use of the question set, and devices, such as Careportal®, facilitate care and may further enable a single point of contact for patients from which clinicians may offer proactive interventions to optimize care.


Assuntos
Esclerose Amiotrófica Lateral/diagnóstico , Ventilação não Invasiva/normas , Assistência ao Paciente/normas , Autorrelato/normas , Inquéritos e Questionários/normas , Telemedicina/normas , Idoso , Esclerose Amiotrófica Lateral/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ventilação não Invasiva/métodos , Assistência ao Paciente/métodos , Projetos Piloto , Telemedicina/métodos
7.
N Engl J Med ; 378(14): 1313-1322, 2018 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-29617585

RESUMO

BACKGROUND: Malignant pleural effusion affects more than 750,000 persons each year across Europe and the United States. Pleurodesis with the administration of talc in hospitalized patients is the most common treatment, but indwelling pleural catheters placed for drainage offer an ambulatory alternative. We examined whether talc administered through an indwelling pleural catheter was more effective at inducing pleurodesis than the use of an indwelling pleural catheter alone. METHODS: Over a period of 4 years, we recruited patients with malignant pleural effusion at 18 centers in the United Kingdom. After the insertion of an indwelling pleural catheter, patients underwent drainage regularly on an outpatient basis. If there was no evidence of substantial lung entrapment (nonexpandable lung, in which lung expansion and pleural apposition are not possible because of visceral fibrosis or bronchial obstruction) at 10 days, patients were randomly assigned to receive either 4 g of talc slurry or placebo through the indwelling pleural catheter on an outpatient basis. Talc or placebo was administered on a single-blind basis. Follow-up lasted for 70 days. The primary outcome was successful pleurodesis at day 35 after randomization. RESULTS: The target of 154 patients undergoing randomization was reached after 584 patients were approached. At day 35, a total of 30 of 69 patients (43%) in the talc group had successful pleurodesis, as compared with 16 of 70 (23%) in the placebo group (hazard ratio, 2.20; 95% confidence interval, 1.23 to 3.92; P=0.008). No significant between-group differences in effusion size and complexity, number of inpatient days, mortality, or number of adverse events were identified. No significant excess of blockages of the indwelling pleural catheter was noted in the talc group. CONCLUSIONS: Among patients without substantial lung entrapment, the outpatient administration of talc through an indwelling pleural catheter for the treatment of malignant pleural effusion resulted in a significantly higher chance of pleurodesis at 35 days than an indwelling catheter alone, with no deleterious effects. (Funded by Becton Dickinson; EudraCT number, 2012-000599-40 .).


Assuntos
Derrame Pleural Maligno/terapia , Pleurodese/métodos , Talco/administração & dosagem , Idoso , Assistência Ambulatorial , Cateteres de Demora , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Derrame Pleural Maligno/mortalidade , Pleurodese/efeitos adversos , Qualidade de Vida , Método Simples-Cego , Análise de Sobrevida
8.
Pneumonia (Nathan) ; 10: 2, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29593979

RESUMO

BACKGROUND: The majority of patients with community acquired-pneumonia (CAP) are treated in primary care and the mortality in this group is very low. However, a small but significant proportion of patients who begin treatment in the community subsequently require admission due to symptomatic deterioration. This study compared patients who received community antibiotics prior to admission to those who had not, and looked for associations with clinical outcomes. METHODS: This study analysed the Advancing Quality (AQ) Pneumonia database of patients admitted with CAP to 9 acute hospitals in the northwest of England over a 12-month period. RESULTS: There were 6348 subjects (mean age 72 [SD 16] years; gender ratio 1:1) admitted with CAP, of whom 17% had been pre-treated with antibiotics. The in-hospital mortality was 18.6% for the pre-treatment group compared to 13.2% in the "antibiotic naïve" group (p < 0.001). On multivariate analysis, age, male gender and antibiotic pre-treatment were predictors of in-hospital mortality along with a history of cerebrovascular accident, congestive cardiac failure, dementia, renal disease and cancer. After adjustment for CURB-65 score, age, co-morbidities and pre-treatment with antibiotics remained as independent risk factors for in-hospital mortality (OR 1.43, 95% CI 1.19-1.71). CONCLUSION: CAP patients admitted to hospital were more likely to die during admission if they had received antibiotics for the same illness pre-admission. Future studies should endeavor to determine the mechanisms underlying this association, such as microbiological factors and the role of comorbidities. Patients hospitalized with CAP despite prior antibiotic treatment in the community require close monitoring.

9.
Respir Med ; 122: 18-22, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27993286

RESUMO

INTRODUCTION: Pulse Transit Time (PTT) represents a non-invasive marker of sleep fragmentation in OSAS. Little is known regarding PTT in sleepy subjects exhibiting nocturnal Inspiratory Flow Limitation (IFL) in the absence of apneas or desaturation. MATERIALS AND METHODS: The IFL cohort was gender and age matched to subjects with OSAS and a cohort where Sleep Disordered Breathing (SBD)/IFL was absent ("Non Flow Limited" or NFL cohort); PTT Arousal index (PTT Ar) defined by number of PTT arousals per hour. RESULTS: 20 subjects meeting criteria for the IFL cohort were aged and gender matched with OSAS and "NFL" subjects. Females comprised 65% of the IFL cohort; the mean BMI of the IFL cohort was significantly higher than the NFL cohort (34.25 v 28.90; p = 0.016) but not when compared to the OSAS cohort (34.25 v 36.31; p = 0.30). The PTT Ar in the IFL cohort (33.67 h) was significantly higher than the NFL cohort (23.89 h) but significantly lower than the OSAS cohort (55.21 h; F = 8.76; p < 0.001). PTT Ar was found to positively correlate with AHI (CC = 0.46; p < 0.001), ODI (CC = 0.47; p < 0.001) and RDI (CC = 0.49; p < 0.001). Within the IFL cohort, PTT Ar positively correlated with age (CC = 0.501; p = 0.024) but not gender and BMI. CONCLUSION: The PTT Arousal Index increased proportionately with severity of SDB with significantly higher markers of arousal in sleepy subjects exhibiting nocturnal IFL when compared to controls. Subjects exhibiting IFL were predominantly female with an elevated BMI. IFL may thus represent a significant pathogenic entity in the development of daytime sleepiness.


Assuntos
Análise de Onda de Pulso/métodos , Síndromes da Apneia do Sono/diagnóstico , Síndromes da Apneia do Sono/fisiopatologia , Apneia Obstrutiva do Sono/diagnóstico , Apneia Obstrutiva do Sono/fisiopatologia , Adulto , Nível de Alerta/classificação , Nível de Alerta/fisiologia , Índice de Massa Corporal , Feminino , Humanos , Inalação/fisiologia , Masculino , Pessoa de Meia-Idade , Polissonografia/métodos , Análise de Onda de Pulso/tendências , Fases do Sono/fisiologia
10.
J Bras Pneumol ; 42(2): 121-9, 2016 Apr.
Artigo em Inglês, Português | MEDLINE | ID: mdl-27167433

RESUMO

OBJECTIVE: Pulmonary rehabilitation (PR) improves exercise capacity in most but not all COPD patients. The factors associated with treatment success and the role of chest wall mechanics remain unclear. We investigated the impact of PR on exercise performance in COPD with severe hyperinflation. METHODS: We evaluated 22 COPD patients (age, 66 ± 7 years; FEV1 = 37.1 ± 11.8% of predicted) who underwent eight weeks of aerobic exercise and strength training. Before and after PR, each patient also performed a six-minute walk test and an incremental cycle ergometer test. During the latter, we measured chest wall volumes (total and compartmental, by optoelectronic plethysmography) and determined maximal workloads. RESULTS: We observed significant differences between the pre- and post-PR means for six-minute walk distance (305 ± 78 vs. 330 ± 96 m, p < 0.001) and maximal workload (33 ± 21 vs. 39 ± 20 W; p = 0.02). At equivalent workload settings, PR led to lower oxygen consumption, carbon dioxide production (VCO2), and minute ventilation. The inspiratory (operating) rib cage volume decreased significantly after PR. There were 6 patients in whom PR did not increase the maximal workload. After PR, those patients showed no significant decrease in VCO2 during exercise, had higher end-expiratory chest wall volumes with a more rapid shallow breathing pattern, and continued to experience symptomatic leg fatigue. CONCLUSIONS: In severe COPD, PR appears to improve oxygen consumption and reduce VCO2, with a commensurate decrease in respiratory drive, changes reflected in the operating chest wall volumes. Patients with severe post-exercise hyperinflation and leg fatigue might be unable to improve their maximal performance despite completing a PR program.


Assuntos
Terapia por Exercício/métodos , Exercício Físico/fisiologia , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/reabilitação , Idoso , Dióxido de Carbono/metabolismo , Teste de Esforço , Feminino , Humanos , Pulmão/fisiopatologia , Masculino , Pessoa de Meia-Idade , Consumo de Oxigênio , Valores de Referência , Testes de Função Respiratória , Índice de Gravidade de Doença , Estatísticas não Paramétricas , Análise e Desempenho de Tarefas , Parede Torácica/fisiopatologia , Fatores de Tempo , Resultado do Tratamento , Caminhada/fisiologia
11.
J. bras. pneumol ; 42(2): 121-129, Mar.-Apr. 2016. tab, graf
Artigo em Inglês | LILACS | ID: lil-780892

RESUMO

Objective: Pulmonary rehabilitation (PR) improves exercise capacity in most but not all COPD patients. The factors associated with treatment success and the role of chest wall mechanics remain unclear. We investigated the impact of PR on exercise performance in COPD with severe hyperinflation. Methods: We evaluated 22 COPD patients (age, 66 ± 7 years; FEV1 = 37.1 ± 11.8% of predicted) who underwent eight weeks of aerobic exercise and strength training. Before and after PR, each patient also performed a six-minute walk test and an incremental cycle ergometer test. During the latter, we measured chest wall volumes (total and compartmental, by optoelectronic plethysmography) and determined maximal workloads. Results: We observed significant differences between the pre- and post-PR means for six-minute walk distance (305 ± 78 vs. 330 ± 96 m, p < 0.001) and maximal workload (33 ± 21 vs. 39 ± 20 W; p = 0.02). At equivalent workload settings, PR led to lower oxygen consumption, carbon dioxide production (VCO2), and minute ventilation. The inspiratory (operating) rib cage volume decreased significantly after PR. There were 6 patients in whom PR did not increase the maximal workload. After PR, those patients showed no significant decrease in VCO2 during exercise, had higher end-expiratory chest wall volumes with a more rapid shallow breathing pattern, and continued to experience symptomatic leg fatigue. Conclusions: In severe COPD, PR appears to improve oxygen consumption and reduce VCO2, with a commensurate decrease in respiratory drive, changes reflected in the operating chest wall volumes. Patients with severe post-exercise hyperinflation and leg fatigue might be unable to improve their maximal performance despite completing a PR program.


Objetivo: A reabilitação pulmonar (RP) melhora a capacidade de exercício na maioria (mas não todos) dos pacientes com DPOC. Os fatores associados ao sucesso do tratamento e o papel da mecânica da parede torácica na determinação desse sucesso ainda não é claro. Investigamos o impacto da RP no desempenho ao exercício em pacientes com DPOC e hiperinsuflação grave. Métodos: Foram avaliados 22 pacientes com DPOC (idade, 66 ± 7 anos; VEF1 = 37,1 ± 11,8% do previsto) submetidos a oito semanas de exercícios aeróbicos e treino de força. Antes e depois da RP, cada paciente também realizou um teste de caminhada de seis minutos e um teste de exercício incremental em uma bicicleta ergométrica. Durante esse último, os volumes da parede torácica (total e compartimental por pletismografia optoeletrônica) e a carga de trabalho máxima foram determinados. Resultados: Diferenças significativas foram observadas entre as médias pré e pós-RP da distância percorrida no teste de caminhada de seis minutos (305 ± 78 vs. 330 ± 96 m; p < 0,001) e da carga máxima (33 ± 21 vs. 39 ± 20 W; p = 0,02). Sob parâmetros de carga de trabalho equivalente, a RP levou a valores menores de consumo de oxigênio, produção de dióxido de carbono (VCO2) e ventilação minuto. O volume inspiratório (operacional) da caixa torácica diminuiu significativamente após a RP. Em 6 pacientes, a RP não aumentou a carga máxima. Após a RP, esses pacientes não apresentaram uma diminuição significativa na VCO2 durante o exercício, tiveram maiores volumes expiratórios finais da parede torácica com padrão respiratório mais rápido e superficial e continuaram a apresentar fadiga sintomática nas pernas. Conclusões: Na DPOC grave, a RP parece melhorar o consumo de oxigênio e reduzir VCO2, com uma diminuição proporcional no drive respiratório, mudanças essas que são refletidas nos volumes operacionais da parede torácica. Pacientes com hiperinsuflação grave pós-exercício e fadiga nas pernas podem ser incapazes de melhorar seu desempenho máximo apesar de completarem um programa de RP.


Assuntos
Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Terapia por Exercício/métodos , Exercício Físico/fisiologia , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/reabilitação , Dióxido de Carbono/metabolismo , Teste de Esforço , Pulmão/fisiopatologia , Consumo de Oxigênio , Valores de Referência , Testes de Função Respiratória , Índice de Gravidade de Doença , Estatísticas não Paramétricas , Análise e Desempenho de Tarefas , Parede Torácica/fisiopatologia , Fatores de Tempo , Resultado do Tratamento , Caminhada/fisiologia
12.
Br J Health Psychol ; 20(2): 341-59, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-24796270

RESUMO

OBJECTIVES: Although non-invasive ventilation (NIV) can benefit survival and quality of life, it is rejected by a substantial proportion of people with motor neurone disease (MND). The aim of this study was to understand why some MND patients decline or withdraw from NIV. METHOD: Nine patients with MND (male = 7, mean age = 67 years) participated in this study. These patients, from a cohort of 35 patients who were offered NIV treatment to support respiratory muscle weakness, did not participate in NIV treatment when it was clinically appropriate. Semi-structured interviews and interpretative phenomenological analysis (IPA) were employed to explore these patient's experience of MND and their thoughts and understanding of NIV treatment. RESULTS: Using IPA, four themes were identified: preservation of the self, negative perceptions of NIV, negative experience with health care services, and not needing NIV. Further analysis identified the fundamental issue to be the maintenance of perceived self, which was interpreted to consist of the sense of autonomy, dignity, and quality of life. CONCLUSIONS: The findings indicate psychological reasons for disengagement with NIV. The threat to the self, the sense of loss of control, and negative views of NIV resulting from anxiety were more important to these patients than prolonging life in its current form. These findings suggest the importance of understanding the psychological dimension involved in decision-making regarding uptake of NIV and a need for sensitive holistic evaluation if NIV is declined. Statement of contribution What is already known on this subject? Non-invasive ventilation is widely used as an effective symptomatic therapy in MND, yet about a third of patients decline the treatment. Psychological disturbance generated by NIV use leads to negative experiences of the treatment. Decision-making about treatment potentials is complex and unique to each individual affected by perceived impact of disease. What does this study add? A decision concerning NIV uptake was influenced by perceived impact on individuals' sense of self. Sense of self was influenced by the maintenance of autonomy, dignity, and quality of life. Individuals' sense of self was identified to have been challenged by the disease, NIV, and their experience of health care service.


Assuntos
Atitude Frente a Saúde , Doença dos Neurônios Motores/terapia , Ventilação não Invasiva/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Adulto , Idoso , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Ventilação não Invasiva/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Participação do Paciente/psicologia , Participação do Paciente/estatística & dados numéricos , Qualidade de Vida/psicologia , Inquéritos e Questionários
13.
Neuromuscul Disord ; 24(6): 533-6, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24792523

RESUMO

The m.8344A>G mutation in the mt-tRNA(Lys) gene, first described in myoclonic epilepsy and ragged red fibers (MERRF), accounts for approximately 80% of mutations in individuals with MERRF syndrome. Although originally described in families with a classical syndrome of myoclonus, ataxia, epilepsy and ragged red fibers in muscle biopsy, the m.8344A>G mutation is increasingly recognised to exhibit marked phenotypic heterogeneity. This paper describes the clinical, morphological and laboratory features of an unusual phenotype in a patient harboring the m.8344A>G 'MERRF' mutation. We present the case of a middle-aged woman with distal weakness since childhood who also had ptosis and facial weakness and who developed mid-life respiratory insufficiency necessitating non-invasive nocturnal ventilator support. Neurophysiological and acetylcholine receptor antibody analyses excluded myasthenia gravis whilst molecular genetic testing excluded myotonic dystrophy, prompting a diagnostic needle muscle biopsy. Mitochondrial histochemical abnormalities including subsarcolemmal mitochondrial accumulation (ragged-red fibers) and in excess of 90% COX-deficient fibers, was seen leading to sequencing of the mitochondrial genome in muscle. This identified the m.8344A>G mutation commonly associated with the MERRF phenotype. This case extends the evolving phenotypic spectrum of the m.8344A>G mutation and emphasizes that it may cause indolent distal weakness with respiratory insufficiency, with marked histochemical defects in muscle. Our findings support consideration of screening of this gene in cases of indolent myopathy resembling distal limb-girdle muscular dystrophy in which screening of the common genes prove negative.


Assuntos
DNA Mitocondrial/genética , Miopatias Distais/genética , Síndrome MERRF/diagnóstico , Síndrome MERRF/genética , Insuficiência Respiratória/genética , Adulto , Miopatias Distais/etiologia , Feminino , Humanos , Mutação , Insuficiência Respiratória/etiologia
14.
BMJ Support Palliat Care ; 4(1): 50-6, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24644771

RESUMO

OBJECTIVE: Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients' perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV. METHODS: Five patients with MND (male=4, mean age=59 years), from a bigger cohort who were prospectively followed, had multiple post-NIV semistructured interviews, covering more than 12 months, along with ventilator interaction data. The transcribed phenomenological data were analysed using qualitative methodology. RESULTS: Three themes emerged: experience of NIV, influence on attitudes and perceived impact of NIV on prognosis. The ventilator interaction data identified regular use of NIV by four participants who each gave positive account of their experience of NIV treatment, and irregular use by one participant who at interview revealed a negative attitude to NIV treatment and in whom MND induced feelings of hopelessness. CONCLUSIONS: This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.


Assuntos
Doença dos Neurônios Motores/complicações , Ventilação não Invasiva/métodos , Cuidados Paliativos/métodos , Insuficiência Respiratória/etiologia , Insuficiência Respiratória/terapia , Adaptação Psicológica , Idoso , Animais , Atitude Frente a Saúde , Progressão da Doença , Feminino , Humanos , Entrevistas como Assunto/métodos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/psicologia , Ventilação não Invasiva/psicologia , Ventilação não Invasiva/estatística & dados numéricos , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Cooperação do Paciente/psicologia , Cooperação do Paciente/estatística & dados numéricos , Estudos Prospectivos , Qualidade de Vida , Ratos Long-Evans , Insuficiência Respiratória/psicologia
15.
Health Psychol Behav Med ; 1(1): 47-58, 2013 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-25264500

RESUMO

Objectives: Motor neurone disease (MND) progressively damages the nervous system causing wasting to muscles, including those used for breathing. There is robust evidence that non-invasive ventilation (NIV) relieves respiratory symptoms and improves quality of life in MND. Nevertheless, about a third of those who would benefit from NIV decline the treatment. The purpose of the study was to understand this phenomenon. Design: A cross-sectional quantitative analysis. Methods: Data including age, sex, MND symptomatology, general physical and mental health and psychological measures were collected from 27 patients and their family caregivers at the point of being offered ventilatory support based on physiological markers. Results: Quantitative analyses indicated no difference in patient characteristics or symptomatology between those who tolerated (n = 17) and those who declined (n = 10) NIV treatment. A comparison of family caregivers found no differences in physical or mental health or in caregiving distress, emphasising that this was high in both groups; however, family caregivers supporting NIV treatment were significantly more resilient, less neurotic and less anxious than family caregivers who did not. Regression analyses, forcing MND symptoms to enter the equation first, found caregiver resilience:commitment the strongest predictor of uptake of NIV treatment adding 22% to the 56% explained variance. Conclusion: Patients who tolerated NIV treatment had family caregivers who cope through finding meaning and purpose in their situation. Psychological support and proactive involvement for family caregivers in the management of the illness situation is indicated if acceptance of NIV treatment is to be maximised in MND.

16.
Artigo em Inglês | MEDLINE | ID: mdl-22069366

RESUMO

PURPOSE: Respiratory conditions remain a source of morbidity globally. As such, this study aimed to explore factors associated with the development of airflow obstruction (AFO) in a rural Indian setting and, using spirometry, study whether underweight is linked to AFO. METHODS: Patients > 35 years old attending a rural clinic in West Bengal, India, took a structured questionnaire, had their body mass index (BMI) measured, and had spirometry performed by an ancillary health care worker. RESULTS: In total, 416 patients completed the study; spirometry was acceptable for analysis of forced expiratory volume in 1 second in 286 cases (69%); 16% were noted to exhibit AFO. Factors associated with AFO were: increasing age (95% confidence interval (CI) 0.004-0.011; P = 0.005), smoking history (95% CI 0.07-0.174; P = 0.006), male gender (95% CI 0.19-0.47; P = 0.012), reduced BMI (95% CI 0.19-0.65; P = 0.02), and occupation (95% CI 0.12-0.84; P = 0.08). The mean BMI in males who currently smoked (n = 60; 19.29 kg/m(2); standard deviation [SD] 3.46) was significantly lower than in male never smokers (n = 33; 21.15 kg/m(2) SD 3.38; P < 0.001). AFO was observed in 27% of subjects with a BMI <18.5 kg/m(2), falling to 13% with a BMI ≥18.5 kg/m(2) (P = 0.013). AFO was observed in 11% of housewives, 22% of farm laborers, and 31% of cotton/jute workers (P = 0.035). CONCLUSION: In a rural Indian setting, AFO was related to advancing age, current or previous smoking, male gender, reduced BMI, and occupation. The data also suggest that being under-weight is linked with AFO and that a mechanistic relationship exists between low body weight, smoking tobacco, and development of AFO.


Assuntos
Índice de Massa Corporal , Pulmão/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/etiologia , Saúde da População Rural , Adulto , Fatores Etários , Distribuição de Qui-Quadrado , Feminino , Volume Expiratório Forçado , Humanos , Índia/epidemiologia , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Ocupações , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Medição de Risco , Fatores de Risco , Índice de Gravidade de Doença , Fatores Sexuais , Fumar/efeitos adversos , Espirometria , Inquéritos e Questionários , Capacidade Vital
17.
Curr Opin Pulm Med ; 17(2): 98-102, 2011 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-21169839

RESUMO

PURPOSE OF REVIEW: A large proportion of chronic obstructive pulmonary disease (COPD) patients do not actually discuss ventilation and other end-of-life issues in the stable state. Such discussions often occur during the exacerbation itself. There is a paucity of data regarding attitudes of COPD patients toward end-of-life attitudes in general and specifically concerning the area of ventilatory support. RECENT FINDINGS: The majority of COPD patients feel end-of-life discussions are warranted in the stable state. Some studies have shown that increasing age and the presence of depression preclude patients from choosing life-sustaining treatment, whereas physicians were often inaccurate in judging patient preference for cardiopulmonary resuscitation and ventilation as they frequently underestimated patient quality of life. Patient information sheets and other tools may have a role as decision aids in end-of-life discussions. SUMMARY: Physicians should consider the discussion of end-of-life issues preferably when patients are stable. Decision aids may prove to be a valuable adjunct in framing treatments such as mechanical ventilation.


Assuntos
Planejamento Antecipado de Cuidados , Preferência do Paciente , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/terapia , Respiração Artificial/psicologia , Reanimação Cardiopulmonar/psicologia , Tomada de Decisões , Humanos , Relações Médico-Paciente , Padrões de Prática Médica , Assistência Terminal/psicologia
18.
J Palliat Med ; 12(11): 1029-35, 2009 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-19663712

RESUMO

INTRODUCTION: Informed patient choice is central to modern clinical care but there is a paucity of data about how patients respond to information regarding complex therapies. This qualitative study aimed to understand the attitudes of patients with chronic obstructive pulmonary disease (COPD) toward acute ventilatory support and assess how aids to decision making regarding ventilation affect patients' views of therapy. METHODS: A standardized five-stage interview process was used to explore attitudes toward noninvasive ventilation (NIV) and invasive mechanical ventilation (IMV) in 50 stable COPD patients. RESULTS: Eighty-six percent found demonstration of NIV helpful in decision making compared to 24% with the photographic aid (p < 00.001). Although 96% were willing to receive NIV after a verbal description of the technique, only 76% consented when a photographic aid was shown. When NIV was demonstrated, willingness rose to 84%. While 60% were willing to receive IMV following a verbal description, this decreased to 58% following explanation of alternative treatments to IMV. Patients willing to receive IMV were younger (67 versus 76 years p = 0.016) and had a better functional status (NEADL index 20 versus 15 units p = 0.03). Only 34% had heard of advanced directives of care (ADCs), none had ever issued one but 48% expressed an interest in doing so following explanation of this process. CONCLUSION: COPD patients would find both explanation and demonstration of NIV useful in an outpatient setting. Worsening functional status along with advanced age was associated with reduced willingness to receive invasive ventilatory support. Awareness of ADCs was found to be low although almost half of the patients expressed interest in the uptake of ADCs following explanation of the process.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Pacientes/psicologia , Respiração com Pressão Positiva , Doença Pulmonar Obstrutiva Crônica/terapia , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Reino Unido
19.
Respir Med ; 103(3): 449-55, 2009 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-18977128

RESUMO

INTRODUCTION: The primary aim of this study was to evaluate the ability of radiologists to accurately estimate pneumothorax and pulmonary haemorrhage during percutaneous co-axial cutting needle CT-guided lung biopsy. METHODOLOGY: Patients undergoing cutting needle lung biopsy during the study period were identified; the path taken by the cutting needle marked on each pre-biopsy staging CT scan. Each scan was then reviewed independently by two thoracic radiologists blinded to clinical details and complications; pneumothorax and pulmonary haemorrhage risk estimated with a percentage Visual Analogue Scale. RESULTS: In 134 patients, pneumothorax occurred in 24%. The radiologists differed in the estimation of pneumothorax risk in 55% (74 episodes). When pneumothorax risk was estimated <20% by radiologists 1 and 2, 16% and 14% of biopsies resulted in pneumothorax; where risk was estimated at 20-49%, pneumothorax incidence rose to 33% and 31%; where risk was deemed > or =50%, pneumothorax rate was 87% and 100%. Pulmonary haemorrhage occurred in 4%; estimated haemorrhage risk for biopsies complicated by haemorrhage did not differ significantly from where haemorrhage did not occur. CONCLUSION: Radiologists differ markedly in the estimation of pneumothorax risk for a patient undergoing co-axial lung biopsy. Identifying individual patients developing pneumothorax was only possible when risk was estimated at > or =50%. Pulmonary haemorrhage was uncommon and difficult to predict accurately.


Assuntos
Biópsia por Agulha/efeitos adversos , Hemoptise/etiologia , Pulmão/patologia , Pneumotórax/etiologia , Idoso , Biópsia por Agulha/métodos , Feminino , Hemoptise/diagnóstico por imagem , Humanos , Pulmão/diagnóstico por imagem , Neoplasias Pulmonares/diagnóstico por imagem , Neoplasias Pulmonares/patologia , Masculino , Pessoa de Meia-Idade , Pneumotórax/diagnóstico por imagem , Radiografia Intervencionista/métodos , Medição de Risco/métodos , Tomografia Computadorizada por Raios X/métodos
20.
Future Microbiol ; 2(1): 51-61, 2007 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-17661675

RESUMO

Tuberculosis is responsible for 2 million deaths worldwide and 8 million new cases are reported globally every year. Multidrug-resistant tuberculosis (MDR-TB) is an emerging and difficult public health problem worldwide. In the presence of resistance to key first-line antituberculous agents, treatment with less effective and more toxic second-line agents must be instituted. Consequently, patients remain infectious for a longer period and require prolonged courses of treatment. There may be a role for surgery in selected cases. Care must be taken in terms of isolation procedure and infection control in MDR-TB. Although the diagnosis is made microbiologically, there are certain factors that predispose to the emergence of MDR-TB, notably a history of previous treatment for TB, particularly if that treatment was inadequate or incomplete. Prescription errors made by physicians also contribute, such as adding a single drug to a failing anti-TB regimen. The use of DNA amplification techniques, for example polymerase chain reaction has resulted in the rapid diagnosis of MDR-TB compared with traditional solid culture media. Treatment of MDR-TB usually involves five drugs to which microbiologically, the organism has been shown to demonstrate susceptibility, and one of these drugs should be an injectable agent. There is a need for greater research into developing more effective antituberculous medications and immunotherapy may play an adjunctive role in future management.


Assuntos
Técnicas de Amplificação de Ácido Nucleico/métodos , Tuberculose Resistente a Múltiplos Medicamentos/diagnóstico , Antituberculosos/farmacologia , Antituberculosos/uso terapêutico , Farmacorresistência Bacteriana/genética , Humanos , Mycobacterium/genética , Mycobacterium/isolamento & purificação , Sensibilidade e Especificidade , Tuberculose Resistente a Múltiplos Medicamentos/tratamento farmacológico
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