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BACKGROUND: Expert consultation supports general practitioners (GPs) in delivering adequate palliative homecare. Insight into consultation practices from a GP's perspective is needed in order to shape consultation services to their wishes and needs. AIM: To explore palliative care consultation practices from a GP's perspective. DESIGN AND SETTING: Cross-sectional web-based survey among all GPs (n=235) in the region of Nijmegen, the Netherlands. METHODS: Our questionnaire contained questions about the delivery of palliative care by GPs, their consultation practices and satisfaction with current services. Questions consisted mainly of 5-point Likert scales. We transformed these scales into numerical values to calculate mean scores. Linear mixed models for repeated measurements were used to study differences in scores. RESULTS: GPs most often consulted informal caregivers (mean score 3.6) or fellow GPs (mean score 3.3). Physical problems were discussed the most (mean score 3.5), while social and existential issues were discussed least (mean score 1.9 for both). In their choice of a particular consultation service, GPs considered the quality of the provided advice to be the most important factor. GPs were satisfied with current consultation services, with fellow GPs receiving the highest satisfaction scores (mean score 4.6). Finally, when recalling their last palliative patient, most GPs started requesting consultation during this patient's last month of life. CONCLUSIONS: Next to informal caregivers, GPs preferably seek advice from fellow GPs. Physical issues receive much attention during consultations; however, other vital aspects of palliative care seem to remain relatively neglected, such as social and existential issues and a proactive care approach.
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Atitude do Pessoal de Saúde , Clínicos Gerais/psicologia , Cuidados Paliativos/psicologia , Padrões de Prática Médica/estatística & dados numéricos , Atenção Primária à Saúde/métodos , Adulto , Cuidadores , Estudos Transversais , Feminino , Clínicos Gerais/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Encaminhamento e Consulta , Inquéritos e QuestionáriosRESUMO
PURPOSE: Different protocols are being used worldwide for the cryopreservation of human ovarian tissue for fertility preservation purposes. The efficiency and efficacy of the majority of these protocols has not been extensively evaluated, possibly resulting in sub-optimally cryopreserved ovarian tissue. To address the impact of this issue, we assessed the effects of two clinically successful human ovarian tissue slow-freezing cryopreservation procedures on the quality of the cryopreserved tissue. METHODS: To differentiate between cryopreservation (C) versus thawing (T) related effects, four combinations of these two (A and B) very different cryopreservation/thawing protocols (ACAT, ACBT, BCAT, BCBT) were studied. Before and after cryopreservation and thawing, the percentage of living and morphologically normal follicles, as well as the overall tissue viability, was assessed. RESULTS: Our experiments revealed that the choice of the cryopreservation protocol noticeably affected the overall tissue viability and percentage of living follicles, with a higher viability after protocol BC when compared to AC. No statistically significant differences in tissue viability were observed between the two thawing protocols, but thawing protocol BT required considerably more human effort and materials than thawing protocol AT. Tissue morphology was best retained using the BCAT combination. CONCLUSION: Our results indicate that extensive and systematical evaluation of clinically used protocols is warranted.
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Preservação da Fertilidade , Oócitos/crescimento & desenvolvimento , Folículo Ovariano/crescimento & desenvolvimento , Ovário/crescimento & desenvolvimento , Criopreservação/métodos , Feminino , Congelamento , Humanos , Sobrevivência de Tecidos , VitrificaçãoRESUMO
BACKGROUND: Working in anaesthesia is stressful, but also satisfying. Work-related stress can have a negative impact on mental health, whereas work-related satisfaction protects against these harmful effects. OBJECTIVE(S): How work stress and satisfaction are experienced may be related to personality. Our aim was to study the relationship between personality and perception of work in a sample of Dutch anaesthesiologists. DESIGN: Questionnaire survey. SETTING: Data were collected in the Netherlands from July 2012 until December 2012. PARTICIPANTS: We sent electronic questionnaires to all 1955 practising resident and consultant members of the Dutch Anaesthesia Society. Of those, 655 (33.5%) were returned and could be used for analysis. MAIN OUTCOME MEASURES: The questionnaires assessed general work-related stress and satisfaction and anaesthesia-specific stress. A factor analysis was performed on the stress and satisfaction questionnaires. Personality traits were assessed using the Big Five Inventory. To identify personality profiles, a cluster analysis was performed on the Big Five Inventory. Scores of the extracted factors contributing to job stress and satisfaction were compared between the profiles we identified. RESULTS: Our analysis extracted six factors concerning general job stress. Of those, the emotionally difficult caseload contributed the most to job stress. The analysis also extracted four factors concerning general job satisfaction. Good relationships with patients and their families and being appreciated by colleagues contributed the most to satisfaction. The cluster analysis resulted in two distinct personality profiles: a distressed profile (nâ=â215) and a resilient profile (nâ=â440). General and anaesthesia-specific job stress was significantly higher and job satisfaction was significantly lower in the distressed profile, compared with the resilient profile. Experience of the emotionally difficult caseload did not differ between the two profiles CONCLUSION: Personality profiles were found to be related to anaesthesiologists' experience of work-related stress and satisfaction. One-third of the anaesthesiologists in our sample were categorised as distressed and are at risk of developing work-related mental health problems.
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Anestesiologistas/psicologia , Satisfação no Emprego , Estresse Ocupacional/psicologia , Testes de Personalidade , Personalidade , Inquéritos e Questionários , Adulto , Anestesiologistas/estatística & dados numéricos , Esgotamento Profissional/epidemiologia , Esgotamento Profissional/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Estresse Ocupacional/epidemiologia , Testes de Personalidade/estatística & dados numéricosRESUMO
BACKGROUND: Skin cancer, including basal cell carcinoma (BCC), has become a major health care problem. The limitations of a punch biopsy (at present the gold standard) as diagnostic method together with the increasing incidence of skin cancer point out the need for more accurate, cost-effective, and patient friendly diagnostic tools. In vivo reflectance confocal microscopy (RCM) is a noninvasive imaging technique that has great potential for skin cancer diagnosis. OBJECTIVE: To investigate whether in vivo RCM can correctly identify the subtype of BCC and to determine the cost-effectiveness of RCM compared with punch biopsy (usual care). STUDY DESIGN: Randomized controlled multicenter trial. METHODS: On the basis of 80% power and an alpha of 0.05, 329 patients with lesions clinically suspicious for BCC will be included in this study. Patients will be randomized for RCM or for a punch biopsy (usual care). When a BCC is diagnosed, surgical excision will follow and a follow-up visit will be planned 3 months later. Several questionnaires will be filled in (EQ-5D, EQ-5D VAS, iMTA PCQ, and TSQM-9). We will perform statistical analysis, cost-effectiveness, and patient outcome analysis after data collection. RESULTS: This research started in January 2016 and is ethically approved. We expect to finish this study at the end of 2018. CONCLUSIONS: In this study, we will investigate whether RCM is at least as good in identifying BCC subtypes as conventional pathological investigation of skin biopsies. Anticipating that RCM is found to be a cost-effective alternative, it saves on direct medical consumption like labor of the pathologist and other medical personnel as well as materials related to treatment failure with at least equal effectiveness. TRIAL REGISTRATION: Clinicaltrials.gov NCT02623101; https://clinicaltrials.gov/ct2/show/NCT02623101 (Archived by WebCite at http://www.webcitation.org/6id54WQa2).
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Preserving upper extremity (UE) function in patients with Duchenne muscular dystrophy (DMD) is extremely important as it is related to independence and quality of life. For clinical decision making, knowledge of variables associated with UE function is necessary. This knowledge is, however, limited. Therefore, this study aims to gain more insight into the variables associated with UE function in DMD. Data from an international web-based questionnaire on UE function, obtained from 213 DMD patients, were used. Six dependent variables regarding UE function were used in multivariable linear regression analyses. In addition, 26 independent variables regarding patient characteristics, medication, therapy, supportive aids, pain, stiffness and participation were used. Twelve independent variables showed a significant relation to UE function. Variables with a negative relation to UE function were: later disease stage, occurrence of scoliosis, higher age, use of UE splints, more frequent stiffness complaints, more limitations due to stiffness, more frequent elbow pain, and having physical therapy. A positive relation with UE function was seen for going to school or work, use of corticosteroids, higher BMI, and higher age at diagnosis. These variables explained 56-81 % of the variation of the different measures of UE function. Knowledge of variables associated with UE function is very important in the clinical management of DMD patients. The results of this study suggest that corticosteroid use and participation in school and work related activities are positively related to UE function in DMD patients, as well as reducing pain and stiffness and preventing scoliosis.
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Distrofia Muscular de Duchenne/epidemiologia , Distrofia Muscular de Duchenne/fisiopatologia , Extremidade Superior/fisiopatologia , Adolescente , Corticosteroides/uso terapêutico , Adulto , Fatores Etários , Índice de Massa Corporal , Criança , Pré-Escolar , Progressão da Doença , Humanos , Lactente , Internacionalidade , Internet , Modelos Lineares , Masculino , Análise Multivariada , Distrofia Muscular de Duchenne/terapia , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: There is an urgent need for reliable and universally applicable outcome measures for children with mitochondrial diseases. In this study, we aimed to adapt the currently available Newcastle Paediatric Mitochondrial Disease Scale (NPMDS) to the International Paediatric Mitochondrial Disease Scale (IPMDS) during a Delphi-based process with input from international collaborators, patients and caretakers, as well as a pilot reliability study in eight patients. Subsequently, we aimed to test the feasibility, construct validity and reliability of the IPMDS in a multicentre study. METHODS: A clinically, biochemically and genetically heterogeneous group of 17 patients (age 1.6-16 years) from five different expert centres from four different continents were evaluated in this study. RESULTS: The feasibility of the IPMDS was good, as indicated by a low number of missing items (4 %) and the positive evaluation of patients, parents and users. Principal component analysis of our small sample identified three factors, which explained 57.9 % of the variance. Good construct validity was found using hypothesis testing. The overall interrater reliability was good [median intraclass correlation coefficient for agreement between raters (ICCagreement) 0.85; range 0.23-0.99). CONCLUSION: In conclusion, we suggest using the IPMDS for assessing natural history in children with mitochondrial diseases. These data should be used to further explore construct validity of the IPMDS and to set age limits. In parallel, responsiveness and the minimal clinically important difference should be studied to facilitate sample size calculations in future clinical trials.
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Doenças Mitocondriais/diagnóstico , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Lactente , Masculino , Mitocôndrias/patologia , Doenças Mitocondriais/patologia , Análise de Componente Principal/métodos , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Absolute plasma hepcidin concentrations measured by various procedures differ substantially, complicating interpretation of results and rendering reference intervals method dependent. We investigated the degree of equivalence achievable by harmonization and the identification of a commutable secondary reference material to accomplish this goal. METHODS: We applied technical procedures to achieve harmonization developed by the Consortium for Harmonization of Clinical Laboratory Results. Eleven plasma hepcidin measurement procedures (5 mass spectrometry based and 6 immunochemical based) quantified native individual plasma samples (n = 32) and native plasma pools (n = 8) to assess analytical performance and current and achievable equivalence. In addition, 8 types of candidate reference materials (3 concentrations each, n = 24) were assessed for their suitability, most notably in terms of commutability, to serve as secondary reference material. RESULTS: Absolute hepcidin values and reproducibility (intrameasurement procedure CVs 2.9%-8.7%) differed substantially between measurement procedures, but all were linear and correlated well. The current equivalence (intermeasurement procedure CV 28.6%) between the methods was mainly attributable to differences in calibration and could thus be improved by harmonization with a common calibrator. Linear regression analysis and standardized residuals showed that a candidate reference material consisting of native lyophilized plasma with cryolyoprotectant was commutable for all measurement procedures. Mathematically simulated harmonization with this calibrator resulted in a maximum achievable equivalence of 7.7%. CONCLUSIONS: The secondary reference material identified in this study has the potential to substantially improve equivalence between hepcidin measurement procedures and contributes to the establishment of a traceability chain that will ultimately allow standardization of hepcidin measurement results.
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Serviços de Laboratório Clínico/normas , Hepcidinas/sangue , Cooperação Internacional , Humanos , Imunoquímica , Modelos Lineares , Padrões de ReferênciaRESUMO
OBJECTIVE: To investigate the value of sperm parameters to predict an ongoing pregnancy outcome in couples treated with intrauterine insemination (IUI), during a methodologically stable period of time. DESIGN: Retrospective, observational study with logistic regression analyses. SETTING: University hospital. PATIENT(S): A total of 1,166 couples visiting the fertility laboratory for their first IUI episode, including 4,251 IUI cycles. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): Sperm morphology, total progressively motile sperm count (TPMSC), and number of inseminated progressively motile spermatozoa (NIPMS); odds ratios (ORs) of the sperm parameters after the first IUI cycle and the first finished IUI episode; discriminatory accuracy of the multivariable model. RESULT(S): None of the sperm parameters was of predictive value for pregnancy after the first IUI cycle. In the first finished IUI episode, a positive relationship was found for ≤4% of morphologically normal spermatozoa (OR 1.39) and a moderate NIPMS (5-10 million; OR 1.73). Low NIPMS showed a negative relation (≤1 million; OR 0.42). The TPMSC had no predictive value. The multivariable model (i.e., sperm morphology, NIPMS, female age, male age, and the number of cycles in the episode) had a moderate discriminatory accuracy (area under the curve 0.73). CONCLUSION(S): Intrauterine insemination is especially relevant for couples with moderate male factor infertility (sperm morphology ≤4%, NIPMS 5-10 million). In the multivariable model, however, the predictive power of these sperm parameters is rather low.
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Infertilidade Masculina/terapia , Inseminação Artificial/métodos , Resultado da Gravidez , Contagem de Espermatozoides/métodos , Motilidade dos Espermatozoides/fisiologia , Espermatozoides/fisiologia , Adulto , Idoso , Feminino , Humanos , Infertilidade Masculina/diagnóstico , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Gravidez , Resultado da Gravidez/epidemiologia , Estudos Retrospectivos , Espermatozoides/patologia , Adulto JovemRESUMO
OBJECTIVE: Suppression of back pain with traditional spinal cord stimulation (SCS) in failed back surgery syndrome patients is often insufficient. The objective of this study was to investigate the efficacy of subcutaneous stimulation (SubQ) as ADD-ON therapy to SCS in treating back pain in failed back surgery syndrome patients. MATERIALS AND METHODS: Patients with a minimal pain score of 50 on a 100 mm visual analog scale for both leg and back pain were eligible. If pain reduction after trial SCS was ≥50% for the leg but <50% for the back, patients received additional SubQ leads and were randomized in a 1:1 ratio in a study arm with subcutaneous leads switched on (SubQ ADD-ON) and an arm with subcutaneous leads switched off (Control). The primary outcome was the percentage of the patients, at three months since implantation, with ≥50% reduction of back pain. RESULTS: A total of 97 patients were treated with SCS for leg and back pain. Of these, 52 patients were randomized and allocated to the Control group (n = 24) or to the SubQ ADD-ON group (n = 28). The percentage of patients with ≥50% reduction of back pain was significantly higher in the SubQ ADD-ON group (42.9%) compared to the Control group (4.2%). Mean visual analog scale for back pain, at three months, was a statistically significant 28.1 mm lower in the SubQ ADD-ON group compared to the Control group. CONCLUSION: Subcutaneous stimulation as an ADD-ON therapy to SCS is effective in treating back pain in failed back surgery syndrome patients where SCS is only effective for pain in the leg.
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Terapia por Estimulação Elétrica/métodos , Síndrome Pós-Laminectomia/terapia , Dor Lombar/terapia , Estimulação da Medula Espinal/métodos , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medição da Dor , Tela SubcutâneaRESUMO
PURPOSE: To develop a model to predict recurrence for patients with intermediate-risk (IR) non-muscle-invasive bladder cancer (NMIBC) treated with intravesical chemotherapy which can be challenging because of the heterogeneous characteristics of these patients. METHODS: Data from three Dutch trials were combined. Patients treated with intravesical chemotherapy with characteristics according to the IR definition of the EAU guideline 2013 were included. Uni- and multivariable Cox regression with selection methods were used to identify predictors of recurrence at 1, 2, and 5 years. An easy-readable table for recurrence probabilities was developed. An external validation was done using data from Spanish patients. RESULTS: A total of 724 patients were available for analyses, of which 305 were primary patients. Recurrences occurred in 413 patients (57%). History of recurrences, history of intravesical treatment, grade 2, multiple tumors, and adjuvant treatment with epirubicin were relevant predictors for recurrence-free survival with hazard ratios of 1.48, 1.38, 1.22, 1.56, and 1.27, respectively. A table for recurrence probabilities was developed using these five predictors. Based on the probability of recurrence, three risk groups were identified. Patients in each of the separate risk groups should be scheduled for less or more aggressive treatment. The model showed sufficient discrimination and good predictive accuracy. External validation showed good validity. CONCLUSION: In our model, we identified five relevant predictors for recurrence-free survival in IR-NMIBC patients treated with intravesical chemotherapy. These recurrence predictors allow the urologists to stratify patients in risk groups for recurrence that could help in deciding for an individualized treatment approach.
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Adjuvantes Imunológicos/administração & dosagem , Recidiva Local de Neoplasia/epidemiologia , Neoplasias da Bexiga Urinária/tratamento farmacológico , Administração Intravesical , Adulto , Idoso , Idoso de 80 Anos ou mais , Dinamarca/epidemiologia , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , Prognóstico , Neoplasias da Bexiga Urinária/diagnósticoRESUMO
Non-transferrin-bound iron and its labile (redox active) plasma iron component are thought to be potentially toxic forms of iron originally identified in the serum of patients with iron overload. We compared ten worldwide leading assays (6 for non-transferrin-bound iron and 4 for labile plasma iron) as part of an international inter-laboratory study. Serum samples from 60 patients with four different iron-overload disorders in various treatment phases were coded and sent in duplicate for analysis to five different laboratories worldwide. Some laboratories provided multiple assays. Overall, highest assay levels were observed for patients with untreated hereditary hemochromatosis and ß-thalassemia intermedia, patients with transfusion-dependent myelodysplastic syndromes and patients with transfusion-dependent and chelated ß-thalassemia major. Absolute levels differed considerably between assays and were lower for labile plasma iron than for non-transferrin-bound iron. Four assays also reported negative values. Assays were reproducible with high between-sample and low within-sample variation. Assays correlated and correlations were highest within the group of non-transferrin-bound iron assays and within that of labile plasma iron assays. Increased transferrin saturation, but not ferritin, was a good indicator of the presence of forms of circulating non-transferrin-bound iron. The possibility of using non-transferrin-bound iron and labile plasma iron measures as clinical indicators of overt iron overload and/or of treatment efficacy would largely depend on the rigorous validation and standardization of assays.
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Transfusão de Sangue , Hemocromatose/sangue , Ferro/sangue , Síndromes Mielodisplásicas/sangue , Transferrina/metabolismo , Talassemia beta/sangue , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Síndromes Mielodisplásicas/terapia , Talassemia beta/terapiaRESUMO
BACKGROUND: Dysphagia resulting in altered food intake is common among patients with head and neck cancer. This randomized trial investigated the effect of combined individual dietary counseling with individualized swallowing therapy (intervention) compared to individual dietary counseling (control) on normalcy of food intake (NFI). METHODS: Patients with stage II to IV head and neck cancer treated with postoperative (chemo)radiation were randomly assigned to this study. NFI, dysphagia severity, social eating, and nutritional status were measured at the start of treatment and in weeks 6, 10, 18, and 30. RESULTS: One hundred twenty patients, 60 in each group, were recruited. No overall estimated difference was detected for NFI, dysphagia severity, social eating, or nutritional status. At week 10, the intervention group slightly improved dysphagia recovery 0.6 (95% confidence interval [CI] = 0.1-1.1). This difference diminished by week 30. CONCLUSION: Adding individualized swallowing therapy to individual dietary counseling did not improve NFI but slightly accelerate swallowing recovery. © 2015 Wiley Periodicals, Inc. Head Neck 38: E198-E206, 2016.
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Transtornos de Deglutição/reabilitação , Deglutição , Ingestão de Alimentos , Neoplasias de Cabeça e Pescoço/reabilitação , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
BACKGROUND: The practice of anaesthesia comes with stress. If the demands of a stressful job exceed the resources of an individual, that person may develop burnout. Burnout poses a threat to the mental and physical health of the anaesthesiologist and therefore also to patient safety. OBJECTIVES: Individual differences in stress appraisal (perceived demands) are an important factor in the risk of developing burnout. To explore this possible relationship, we assessed the prevalence of psychological distress and burnout in the Dutch anaesthesiologist population and investigated the influence of personality traits. DESIGN: Survey study. SETTING: Data were collected in the Netherlands from July 2012 until December 2012. PARTICIPANTS: We sent electronic surveys to all 1955 practising resident and consultant members of the Dutch Anaesthesia Society. Of these, 655 (33.5%) were returned and could be used for analysis. MAIN OUTCOME MEASURES: Psychological distress, burnout and general personality traits were assessed using validated Dutch versions of the General Health Questionnaire (cut-off point ≥2), the Maslach Burnout Inventory and the Big Five Inventory. Sociodemographic variables and personality traits were entered into regression models as predictors for burnout and psychological distress. RESULTS: Respectively, psychological distress and burnout were prevalent in 39.4 and 18% of all respondents. The prevalence of burnout was significantly different in resident and consultant anaesthesiologists: 11.3% vs. 19.8% (χ 5.4; Pâ<â0.02). The most important personality trait influencing psychological distress and burnout was neuroticism: adjusted odds ratio 6.22 (95% confidence interval 4.35 to 8.90) and 6.40 (95% confidence interval 3.98 to 10.3), respectively. CONCLUSION: The results of this study show that psychological distress and burnout have a high prevalence in residents and consultant anaesthesiologists and that both are strongly related to personality traits, especially the trait of neuroticism. This suggests that strategies to address the problem of burnout would do well to focus on competence in coping skills and staying resilient. Personality traits could be taken into consideration during the selection of residents. In future longitudinal studies the question of how personal and situational factors interact in the development of burnout should be addressed.
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Anestesiologia , Esgotamento Profissional/psicologia , Personalidade , Médicos/psicologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Adaptação Psicológica , Adulto , Idoso , Atitude do Pessoal de Saúde , Esgotamento Profissional/diagnóstico , Esgotamento Profissional/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologiaRESUMO
BACKGROUND: Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can be their most disabling symptom. In combination with other impairments, fatigue often results in low levels of physical activity and decreased social participation, leading to high societal costs. 'Energetic' is a self-management group program aimed at improving social participation, physical endurance and alleviating fatigue in these patients. The primary aim of this study is to evaluate the effectiveness and cost-effectiveness of the Energetic program. METHODS/DESIGN: A multicentered, assessor-blinded, two-armed randomized controlled trial is conducted with evaluations at inclusion and four, seven and fifteen months later. The study includes patients with a neuromuscular disease and chronic fatigue and, when present, their caregivers. The participants are randomized (ratio 1:1) to either an intervention group, receiving the Energetic program, or a control group, receiving usual care (i.e., no specific intervention). The Energetic program covers four months and includes four modules: 1) individually tailored aerobic exercise training; 2) education about aerobic exercise; 3) self-management training in applying energy conservation strategies; and 4) implementation and relapse prevention in daily life. Two months after cessation of the program a booster session is provided. The primary outcome is the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes include the COPM-satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, and self-efficacy. Caregiver burden is also evaluated as a secondary outcome. Health-related quality of life and medical and societal costs are assessed to estimate cost-effectiveness of the program. DISCUSSION: The Energetic study is the first randomized controlled trial to evaluate the effectiveness and cost-effectiveness of a combined physical and self-management group training program for improving social participation, physical endurance and alleviating fatigue in patients with neuromuscular diseases. It will generate new insights in (cost-)effective rehabilitation strategies for these incurable conditions. TRIAL REGISTRATION: Clinicaltrials.gov NCT02208687 .
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Análise Custo-Benefício , Síndrome de Fadiga Crônica/reabilitação , Doenças Neuromusculares/reabilitação , Psicoterapia de Grupo/economia , Psicoterapia de Grupo/métodos , Autocuidado , Participação Social , Adaptação Psicológica , Adolescente , Adulto , Idoso , Cuidadores , Exercício Físico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Desenvolvimento de Programas , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Projetos de Pesquisa , Autoeficácia , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: A large randomized clinical trial (the Occupational Therapy in Parkinson's Disease [OTiP] study) recently demonstrated that home-based occupational therapy improves perceived performance in daily activities of people with Parkinson's disease (PD). The aim of the current study was to evaluate the cost-effectiveness of this intervention. METHODS: We performed an economic evaluation over a 6-month period for both arms of the OTiP study. Participants were 191 community-dwelling PD patients and 180 primary caregivers. The intervention group (n = 124 patients) received 10 weeks of home-based occupational therapy; the control group (n = 67 patients) received usual care (no occupational therapy). Costs were assessed from a societal perspective including healthcare use, absence from work, informal care, and intervention costs. Health utilities were evaluated using EuroQol-5d. We estimated cost differences and cost utility using linear mixed models and presented the net monetary benefit at different values for willingness to pay per quality-adjusted life-year gained. RESULTS: In our primary analysis, we excluded informal care hours because of substantial missing data for this item. The estimated mean total costs for the intervention group compared with controls were 125 lower for patients, 29 lower for caregivers, and 122 higher for patient-caregiver pairs (differences not significant). At a value of 40,000 per quality-adjusted life-year gained (reported threshold for PD), the net monetary benefit of the intervention per patient was 305 (P = 0.74), per caregiver 866 (P = 0.01) and per patient-caregiver pair 845 (P = 0.24). CONCLUSION: In conclusion, occupational therapy did not significantly impact on total costs compared with usual care. Positive cost-effectiveness of the intervention was only significant for caregivers.
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Análise Custo-Benefício , Terapia Ocupacional/economia , Doença de Parkinson/economia , Doença de Parkinson/reabilitação , Idoso , Feminino , Serviços de Assistência Domiciliar/economia , Humanos , Masculino , Pessoa de Meia-Idade , Terapia Ocupacional/métodosRESUMO
BACKGROUND: A well-organized palliative care service is a prerequisite for offering good palliative care. Reliable and feasible quality indicators are needed to monitor the quality of their organization. AIM: To test feasibility and reliability of a previously developed set of quality indicators in settings and services that provide palliative care across Europe. METHODS: A total of 38 quality indicators, applicable in all types of settings, rated in a RAND Delphi process, and operationalized into 38 yes/no questions, were used. Descriptives statistics, factor and reliability analyses, analysis of variance, and chi-square analyses were used. DESIGN: Cross-sectional online survey. SETTING/PARTICIPANTS: Questionnaires were sent to representatives of 217 palliative care settings in 25 countries. Included settings were hospices, inpatient dedicated palliative care beds, palliative care outpatient clinics, palliative care units, day care centers for palliative care, palliative care home support teams, inpatient palliative care support teams, care homes, and nursing homes. RESULTS: All invited 25 European Association of Palliative Care countries took part. In total, 107 out of 217 participants responded (57%). The quality indicators were reduced to four coherent sub-scales, being "equipment and continuity of care," "structured documentation of essential palliative care elements in the medical record," "training and appraisal of personnel," and "availability of controlled drugs." No significant differences in quality criteria between the different types of settings and services were identified. CONCLUSION: The set of quality indicators appeared to measure four reliable domains that assess the organization of different palliative care settings. It can be used as a starting point for quality improvement activities.
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Cuidados Paliativos/organização & administração , Cuidados Paliativos/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Continuidade da Assistência ao Paciente , Estudos Transversais , Técnica Delphi , Educação Médica Continuada , Europa (Continente)/epidemiologia , Estudos de Viabilidade , Humanos , Prontuários Médicos/normas , Preparações Farmacêuticas/provisão & distribuição , Projetos Piloto , Garantia da Qualidade dos Cuidados de Saúde , Qualidade da Assistência à Saúde/normas , Reprodutibilidade dos TestesRESUMO
We investigated the predictive value of a new kindergarten assessment of handwriting readiness on handwriting performance in first grade as evaluated by the Systematic Screening for Handwriting Difficulties (Dutch abbreviation: SOS). The kindergarten assessment consisted of the Writing Readiness Inventory Tool In Context (WRITIC), the Beery-Buktenica Developmental Test of Visual-Motor Integration (Beery™VMI) and the Nine-Hole Peg Test (9-HPT). The WRITIC evaluates in kindergarten children (aged 5-6 years) prewriting skills, the Beery™VMI and 9-HPT evaluate visual motor integration and fine-motor coordination, all elements important for handwriting readiness. In kindergarten, 109 children (55 boys; mean age 70 months, SD 4.8 months) were tested with the WRITIC, Beery™VMI and 9-HPT and one year later in first grade (mean age 85 months, SD 4.5 months) with the SOS. A multivariable linear mixed model was used to identify variables that independently predict outcomes in first grade (SOS): baseline scores on WRITIC-TP, Beery™VMI, 9-HPT, 'sustained attention,' 'gender,' 'age' and 'intervention' in the intermediate period. The results showed that WRITIC-TP, Beery™VMI, and 9-HPT, 'sustained attention,' 'gender' and 'intervention' had all predictive value on the handwriting outcome. Thereby WRITIC-TP was the main predictor for outcome of SOS-Quality, and Beery™VMI and 9-HPT were the main predictors of SOS-Speed. This kindergarten assessment of WRITIC-TP, Beery™VMI, and 9-HPT contributes to the detection of children at risk for developing handwriting problems.
RESUMO
OBJECTIVE: To characterize methodological changes in sperm morphology assessment and to correlate sperm morphology with clinical outcome. DESIGN: In this observational study, sperm morphology profiles of patients were analyzed. The percentages of morphologically normal spermatozoa were evaluated with respect to changes in morphology assessment criteria; male aging; and prognostic value for outcomes after in vitro fertilization (IVF)/intracytoplasmic sperm injection (ICSI). SETTING: Diagnostic and clinical laboratories. PATIENT(S): A total of 8,846 men who visited the diagnostic laboratory; 133 samples from a sperm bank; and 3,676 IVF/ICSI couples. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): The percentage of morphologically normal spermatozoa in semen samples. The regression of the individual morphologically normal cell profiles. The relation between the percentage of normal forms with pregnancy outcome after IVF/ICSI. RESULT(S): The percentage of morphologically normal spermatozoa showed a decrease from roughly 30%-80% in 1984 to 0%-10% since 2004. With added evidence from sperm bank samples, this decrease was found to be attributable mainly to changes in morphology assessment criteria. Furthermore, an intraindividual aging effect of 0.51% per year was observed. A statistically significant relationship was found between decreases in percentage of normal forms and a lower probability of ongoing pregnancies after IVF, although the area under the curve was only 54%. CONCLUSION(S): Methodological changes had a strong effect on the percentage of morphologically normal spermatozoa over the past few decades. In addition, male aging results in decreasing sperm morphology. The percentage of morphologically normal spermatozoa has no prognostic value for individual IVF/ICSI patients.