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1.
Clin Infect Dis ; 73(5): e1089-e1098, 2021 09 07.
Artigo em Inglês | MEDLINE | ID: mdl-33220049

RESUMO

BACKGROUND: Long-term health sequelae of coronavirus disease 2019 (COVID-19) may be multiple but have thus far not been systematically studied. METHODS: All patients discharged after COVID-19 from the Radboud University Medical Center, Nijmegen, the Netherlands, were consecutively invited to a multidisciplinary outpatient facility. Also, nonadmitted patients with mild disease but with symptoms persisting >6 weeks could be referred by general practitioners. Patients underwent a standardized assessment including measurements of lung function, chest computed tomography (CT)/X-ray, 6-minute walking test, body composition, and questionnaires on mental, cognitive, health status, and quality of life (QoL). RESULTS: 124 patients (59 ±â€…14 years, 60% male) were included: 27 with mild, 51 with moderate, 26 with severe, and 20 with critical disease. Lung diffusion capacity was below the lower limit of normal in 42% of discharged patients. 99% of discharged patients had reduced ground-glass opacification on repeat CT imaging, and normal chest X-rays were found in 93% of patients with mild disease. Residual pulmonary parenchymal abnormalities were present in 91% of discharged patients and correlated with reduced lung diffusion capacity. Twenty-two percent had low exercise capacity, 19% low fat-free mass index, and problems in mental and/or cognitive function were found in 36% of patients. Health status was generally poor, particularly in the domains functional impairment (64%), fatigue (69%), and QoL (72%). CONCLUSIONS: This comprehensive health assessment revealed severe problems in several health domains in a substantial number of ex-COVID-19 patients. Longer follow-up studies are warranted to elucidate natural trajectories and to find predictors of complicated long-term trajectories of recovery.


Assuntos
COVID-19 , Pneumopatias , Idoso , Feminino , Humanos , Pulmão , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , SARS-CoV-2
2.
J Genet Couns ; 29(6): 1259-1269, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32519797

RESUMO

Hereditary thoracic aortic diseases (HTAD) such as Marfan syndrome (MFS) affect multiple organ systems and provide a risk of acute aortic dissection, which causes lifelong uncertainties. Although health-related quality of life (HRQOL) was found to be reduced in HTAD patients, no studies have evaluated male-female-specific aspects of HRQOL and coping in this population. This study aims to evaluate HRQOL in HTAD patients compared to the general population; assess male-female differences in HRQOL and factors associated with HRQOL; evaluate coping styles in male and female HTAD patients and identify factors associated with acceptance. All consecutive adult patients who visited the specialized HTAD outpatient clinic between 2013 and 2018 were asked to complete three HRQOL questionnaires: the Short Form 36 (SF-36), the Hospital Anxiety and Depression Scale (HADS), and the Nijmegen Clinical Screening Instrument (NCSI). In total, 142 patients were included (mean age 42.1 years, 65 females, 123 MFS). Compared to the general population, HTAD patients scored significantly lower on multiple SF-36 sub-domains (males: General Health 54.5 ± 18.8 vs. 71.6 ± 20.6, p < .001; Vitality 58.3 ± 20.4 vs. 71.9 ± 18.3, p < .001; females: Physical Functioning 67.5 ± 23.8 vs. 80.4 ± 24.2, p = .003; Role Physical 58.3 ± 45.1 vs. 73.8 ± 38.5, p = .047; General Health 49.4 ± 24.3 vs. 69.9 ± 20.6, p < .001; Social Functioning 73.5 ± 22.0 vs. 82.0 ± 23.5, p = .027). Females scored significantly lower than males on the SF-36 physical component score (41.6 [IQR 35.5-53.1] vs. 49.3 [IQR 42.3-54.6], p = .035). Males scored significantly higher on the coping style denial than females (2.75 [IQR 2.00-3.25] vs. 2.25 [IQR 1.75-3.25], p = .018). High scores on acceptance were found in 38 (26.8%) of HTAD patients, and these patients showed significantly better scores on the NCSI, SF-36, and HADS, except on NCSI Satisfaction Relationships and SF-36 Physical Functioning and Mental Health. Acceptance was associated with more medication use (beta blocker use, p = .008; angiotensin receptor blocker use, p = .003) and less hypertension (p = .001). In patients with MFS, employment was strongly associated with better scores on the NCSI. In conclusion, HTAD patients showed subnormal HRQOL, especially females. Interestingly, in both males and females factors such as employment, coping style, and disease acceptance seem more important for HRQOL than disease-related factors. This highlights the importance of genetic counseling and guidance for HTAD patients, and offers valuable leads for HRQOL improvement.


Assuntos
Adaptação Psicológica , Doenças da Aorta/psicologia , Síndrome de Marfan/psicologia , Qualidade de Vida/psicologia , Fatores Sexuais , Adulto , Doenças da Aorta/genética , Feminino , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Inquéritos e Questionários
3.
Int J Behav Med ; 24(4): 571-583, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-27995441

RESUMO

PURPOSE: The purposes of the study are to identify clinical phenotypes that reflect the level of adaptation to the disease and to examine whether these clinical phenotypes respond differently to treatment as usual (TAU) and pulmonary rehabilitation (PR), the latter with its strong emphasis on improving adaptation. METHODS: Clusters were identified by a cluster analysis using data on many subdomains of the four domains of health status (HS) (physiological functioning, functional impairment, symptoms and quality of life) in 160 outpatients with chronic obstructive pulmonary disease (COPD) receiving TAU. By discriminant analysis in the TAU sample, all 459 PR patients could be assigned to one of the identified clusters. The effect of TAU and PR on HS was examined with paired t tests. RESULTS: Three distinct phenotypes were identified in the TAU sample. Two types were labelled adapted: phenotype 1 (moderate COPD-low impact on HS, n = 53) and phenotype 3 (severe COPD-moderate impact on HS, n = 73). One type was labelled non-adapted: phenotype 2 (moderate COPD-high impact on HS, n = 34). After 1-year TAU, the integral health status of all patients did not improve in any subdomain. In contrast, at the end of PR, significant improvements in HS were found in all three phenotypes especially the non-adapted. CONCLUSIONS: Different phenotypes exist in COPD that are based on behavioural aspects (i.e. the level of adaptation to the disease). Non-adapted patient responds better to treatments with a strong emphasis on improving adaptation by learning the patient better self-management skills. Knowing to which clinical phenotype a patient belongs helps to optimize patient-tailored treatment.


Assuntos
Nível de Saúde , Pacientes Ambulatoriais , Doença Pulmonar Obstrutiva Crônica/terapia , Qualidade de Vida , Idoso , Análise por Conglomerados , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Fenótipo , Doença Pulmonar Obstrutiva Crônica/diagnóstico
5.
Int J Behav Med ; 21(3): 561-70, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23645551

RESUMO

BACKGROUND: Patients with chronic obstructive pulmonary disease (COPD) encounter many (gradual) losses due to their disease, which trigger a grieving process. This process is characterized by stages of denial, resistance, sorrow, and acceptance. PURPOSE: This study examined whether these stages are conceptually distinct and whether the Acceptance of Disease and Impairments Questionnaire (ADIQ) can validly and reliably measure these stages in three samples of patients with COPD in the Netherlands. METHODS: Exploratory factor analysis (EFA) was performed on 145 outpatients with moderate to severe COPD. Confirmatory factor analyses were performed on 303 outpatients with mild to very severe COPD and 127 patients entering an inpatient pulmonary rehabilitation program. Furthermore, internal reliability, construct validity, sensitivity to change, and floor and ceiling effects were examined. RESULTS: EFA yielded a four-factor solution that explained 73.2 % of variance. Confirmatory factor analyses showed a good fit of the four-factor structure in all study samples. Cronbach's alpha reliability coefficients were .79 or higher. Subscales showed to be sensitive to change. CONCLUSIONS: Four distinct stages of grief are recognized in COPD. The ADIQ is a valid and reliable instrument to measure these stages: denial, resistance, sorrow, and acceptance. Measuring the stages of grieving is important for disease management: addressing patients with a specific therapeutic approach for the stage they are in could help to motivate patients to engage in self-management and change their lifestyle.


Assuntos
Adaptação Psicológica , Pesar , Doença Pulmonar Obstrutiva Crônica/psicologia , Inquéritos e Questionários/normas , Idoso , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Doença Pulmonar Obstrutiva Crônica/reabilitação , Reprodutibilidade dos Testes , Índice de Gravidade de Doença
6.
ERJ Open Res ; 10(2)2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38529350

RESUMO

This article summarises some of the outstanding sessions that were (co)organised by the Allied Respiratory Professionals Assembly during the 2023 European Respiratory Society International Congress. Two sessions from each Assembly group are outlined, covering the following topics: Group 9.01 focuses on respiratory physiology techniques, specifically on predicted values and reference equations, device development and novel applications of cardiopulmonary exercise tests; Group 9.02 presents an overview of the talks given at the mini-symposium on exercise training, physical activity and self-management at home and outlines some of the best abstracts in respiratory physiotherapy; Group 9.03 highlights the nursing role in global respiratory health and presents nursing interventions and outcomes; and Group 9.04 provides an overview of the best abstracts and recent advances in behavioural science and health psychology. This Highlights article provides valuable insight into the latest scientific data and emerging areas affecting the clinical practice of Allied Respiratory Professionals.

7.
J Clin Epidemiol ; 168: 111270, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38311188

RESUMO

OBJECTIVES: To systematically evaluate the performance of COVID-19 prognostic models and scores for mortality risk in older populations across three health-care settings: hospitals, primary care, and nursing homes. STUDY DESIGN AND SETTING: This retrospective external validation study included 14,092 older individuals of ≥70 years of age with a clinical or polymerase chain reaction-confirmed COVID-19 diagnosis from March 2020 to December 2020. The six validation cohorts include three hospital-based (CliniCo, COVID-OLD, COVID-PREDICT), two primary care-based (Julius General Practitioners Network/Academisch network huisartsgeneeskunde/Network of Academic general Practitioners, PHARMO), and one nursing home cohort (YSIS) in the Netherlands. Based on a living systematic review of COVID-19 prediction models using Prediction model Risk Of Bias ASsessment Tool for quality and risk of bias assessment and considering predictor availability in validation cohorts, we selected six prognostic models predicting mortality risk in adults with COVID-19 infection (GAL-COVID-19 mortality, 4C Mortality Score, National Early Warning Score 2-extended model, Xie model, Wang clinical model, and CURB65 score). All six prognostic models were validated in the hospital cohorts and the GAL-COVID-19 mortality model was validated in all three healthcare settings. The primary outcome was in-hospital mortality for hospitals and 28-day mortality for primary care and nursing home settings. Model performance was evaluated in each validation cohort separately in terms of discrimination, calibration, and decision curves. An intercept update was performed in models indicating miscalibration followed by predictive performance re-evaluation. MAIN OUTCOME MEASURE: In-hospital mortality for hospitals and 28-day mortality for primary care and nursing home setting. RESULTS: All six prognostic models performed poorly and showed miscalibration in the older population cohorts. In the hospital settings, model performance ranged from calibration-in-the-large -1.45 to 7.46, calibration slopes 0.24-0.81, and C-statistic 0.55-0.71 with 4C Mortality Score performing as the most discriminative and well-calibrated model. Performance across health-care settings was similar for the GAL-COVID-19 model, with a calibration-in-the-large in the range of -2.35 to -0.15 indicating overestimation, calibration slopes of 0.24-0.81 indicating signs of overfitting, and C-statistic of 0.55-0.71. CONCLUSION: Our results show that most prognostic models for predicting mortality risk performed poorly in the older population with COVID-19, in each health-care setting: hospital, primary care, and nursing home settings. Insights into factors influencing predictive model performance in the older population are needed for pandemic preparedness and reliable prognostication of health-related outcomes in this demographic.


Assuntos
COVID-19 , Adulto , Humanos , Idoso , Prognóstico , COVID-19/diagnóstico , Estudos Retrospectivos , Teste para COVID-19 , Casas de Saúde , Hospitais , Mortalidade Hospitalar , Atenção Primária à Saúde
8.
Eur Respir Rev ; 32(167)2023 Mar 31.
Artigo em Inglês | MEDLINE | ID: mdl-36948501

RESUMO

Psychological distress is prevalent in people with COPD and relates to a worse course of disease. It often remains unrecognised and untreated, intensifying the burden on patients, carers and healthcare systems. Nonpharmacological management strategies have been suggested as important elements to manage psychological distress in COPD. Therefore, this review presents instruments for detecting psychological distress in COPD and provides an overview of available nonpharmacological management strategies together with available scientific evidence for their presumed benefits in COPD. Several instruments are available for detecting psychological distress in COPD, including simple questions, questionnaires and clinical diagnostic interviews, but their implementation in clinical practice is limited and heterogeneous. Moreover, various nonpharmacological management options are available for COPD, ranging from specific cognitive behavioural therapy (CBT) to multi-component pulmonary rehabilitation (PR) programmes. These interventions vary substantially in their specific content, intensity and duration across studies. Similarly, available evidence regarding their efficacy varies significantly, with the strongest evidence currently for CBT or PR. Further randomised controlled trials are needed with larger, culturally diverse samples and long-term follow-ups. Moreover, effective nonpharmacological interventions should be implemented more in the clinical routine. Respective barriers for patients, caregivers, clinicians, healthcare systems and research need to be overcome.


Assuntos
Terapia Cognitivo-Comportamental , Doença Pulmonar Obstrutiva Crônica , Humanos , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Pulmonar Obstrutiva Crônica/psicologia , Qualidade de Vida
9.
Diagn Progn Res ; 7(1): 8, 2023 Apr 04.
Artigo em Inglês | MEDLINE | ID: mdl-37013651

RESUMO

BACKGROUND: The COVID-19 pandemic has a large impact worldwide and is known to particularly affect the older population. This paper outlines the protocol for external validation of prognostic models predicting mortality risk after presentation with COVID-19 in the older population. These prognostic models were originally developed in an adult population and will be validated in an older population (≥ 70 years of age) in three healthcare settings: the hospital setting, the primary care setting, and the nursing home setting. METHODS: Based on a living systematic review of COVID-19 prediction models, we identified eight prognostic models predicting the risk of mortality in adults with a COVID-19 infection (five COVID-19 specific models: GAL-COVID-19 mortality, 4C Mortality Score, NEWS2 + model, Xie model, and Wang clinical model and three pre-existing prognostic scores: APACHE-II, CURB65, SOFA). These eight models will be validated in six different cohorts of the Dutch older population (three hospital cohorts, two primary care cohorts, and a nursing home cohort). All prognostic models will be validated in a hospital setting while the GAL-COVID-19 mortality model will be validated in hospital, primary care, and nursing home settings. The study will include individuals ≥ 70 years of age with a highly suspected or PCR-confirmed COVID-19 infection from March 2020 to December 2020 (and up to December 2021 in a sensitivity analysis). The predictive performance will be evaluated in terms of discrimination, calibration, and decision curves for each of the prognostic models in each cohort individually. For prognostic models with indications of miscalibration, an intercept update will be performed after which predictive performance will be re-evaluated. DISCUSSION: Insight into the performance of existing prognostic models in one of the most vulnerable populations clarifies the extent to which tailoring of COVID-19 prognostic models is needed when models are applied to the older population. Such insight will be important for possible future waves of the COVID-19 pandemic or future pandemics.

10.
COPD ; 9(3): 281-8, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22360382

RESUMO

INTRODUCTION: The cardiopulmonary exercise test (CPET) and the 6-minute walk test (6MWT) are used to prescribe the appropriate training load for cycling and walking exercise in patients with chronic obstructive pulmonary disease (COPD). The primary aims were: (i) to compare estimated peak work rate (Wpeak(estimated)) derived from six existing Wpeak regression equations with actual peak work rate (Wpeak(actual)); and (ii) to derive a new Wpeak regression equation using six-minute walk distance (6MWD) and conventional outcome measures in COPD patients. METHODS: In 2906 patients with COPD, existing Wpeak regression equations were used to estimate Wpeak using 6MWD and a new equation was derived after a stepwise multiple regression analysis. RESULTS: The 6 existing Wpeak regression equations were inaccurate to predict Wpeak(actual) in 82% of the COPD patients. The new Wpeak regression equation differed less between Wpeak(estimated) and Wpeak(actual) compared to existing models. Still, in 74% of COPD patients Wpeak(estimated) and Wpeak(actual) differed more than (±) 5 watts. CONCLUSION: In conclusion, estimating peak work load from 6MWD in COPD is inaccurate. We recommend assessment of Wpeak using CPET during pre-rehabilitation assessment in addition to 6MWT.


Assuntos
Teste de Esforço/métodos , Teste de Esforço/estatística & dados numéricos , Tolerância ao Exercício , Esforço Físico , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Caminhada , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/reabilitação , Reprodutibilidade dos Testes
11.
Front Psychol ; 13: 947402, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36275228

RESUMO

Background: Self-management is key for reducing the burden of disease in chronical illness. However, applying self-management presupposes behavioral change. Sufficient knowledge, skills, confidence and motivation to make the needed behavior changes are important prerequisites. During the past years the Integral Diagnostic Trajectory was developed for patients with asthma or COPD which aims to identify treatable traits and activating patients for self-management. Objective: In the present study the effects of the Integral Diagnostic Trajectory on the Patient Activation Measure (PAM®) were examined. In addition, predictive variables for PAM baseline scores and change scores were sought. Materials and methods: A total of 241 patients with asthma or COPD referred to the pulmonologist at the Radboud university medical center, location Dekkerswald, Nijmegen were included. Patient activation was measured before the first visit and after the intervention with the 13-item PAM®. Additional, patient characteristics and health status were measured with the Nijmegen Clinical Screening Instrument (NCSI), modified Medical Research Council (mMRC), Asthma Control Questionnaire (ACQ), and COPD Clinical Questionnaire (CCQ). Results: Fifty percent of the patients with asthma and seventy percent of the patients with COPD had low levels of activation at baseline (PAM level 1-2). Baseline PAM scores could be explained in patients with asthma for 7% by number of severe problems in health status. And for 18% in patients with COPD by number of severe problems, age and employment status. After the intervention both groups significantly improved on the PAM (T0: 56.0 ± 13.1 vs. T1:63.3 ± 14.0 in asthma, and T0: 50.0 ± 8.8 vs. 58.4 ± 11.1 in COPD). Multivariate stepwise regression analysis showed that only 24% of the change in score could be explained by baseline PAM score and being employed in patients with asthma, and 18% of the variance in change score could be predicted by baseline PAM score in COPD. Conclusion: The present study showed that low level of activation is a common feature in patients with asthma and COPD. With a relatively short and seemingly simple intervention patients can reach higher levels of patient activation, which is a prerequisite for adopting self-management techniques in daily life.

12.
Nutrients ; 14(20)2022 Oct 15.
Artigo em Inglês | MEDLINE | ID: mdl-36297002

RESUMO

Muscle weakness is a prominent symptom in post-acute sequelae of COVID-19 (PASC). However, few studies have objectively and longitudinally assessed muscle strength after varying COVID-19 severity grades. This observational study aimed to explore the prevalence, determinants, and 1.5 years change of quadriceps muscle weakness in 98 patients discharged from COVID-19 hospitalization and in 50 patients with PASC following mild COVID-19. Isometric quadriceps maximal voluntary contraction (MVC) was assessed on a computerized dynamometer at three visits. Also, in a subgroup of 14 post-COVID-19 patients with quadriceps muscle weakness, muscle thickness and echo intensity were determined by muscle ultrasound of nine upper and lower extremity muscles. Muscle weakness was found in 59% of post-hospitalized patients and in 65% of those with PASC following mild COVID-19 at ~14 weeks after acute COVID-19. Whereas during ~1.5 years follow-up MVC modestly improved, muscle weakness prevalence remained unchanged. Hospital length of stay and diabetes mellitus were identified as possible predictors of muscle weakness following COVID-19 hospitalization. No predictors could be identified in those with PASC following mild COVID-19. Ultrasound outcomes revealed no large structural abnormalities. In conclusion, clinically relevant muscle weakness is common after COVID-19 and its long-term improvement is poor. Future studies with relevant control groups are warranted to confirm our data.


Assuntos
COVID-19 , Músculo Quadríceps , Humanos , Músculo Quadríceps/diagnóstico por imagem , Músculo Quadríceps/fisiologia , Debilidade Muscular/diagnóstico , COVID-19/complicações , Força Muscular/fisiologia , Progressão da Doença , Hospitalização
13.
BMC Infect Dis ; 11: 97, 2011 Apr 18.
Artigo em Inglês | MEDLINE | ID: mdl-21501483

RESUMO

BACKGROUND: In the Netherlands, from 2007 to 2009, 3,522 Q-fever cases were notified from three outbreaks. These are the largest documented outbreaks in the world. Previous studies suggest that symptoms can persist for a long period of time, resulting in a reduced quality of life (QoL). The aim of this study was to qualify and quantify the health status of Q-fever patients after long-term follow-up. METHODS: 870 Q-fever patients of the 2007 and 2008 outbreaks were mailed a questionnaire 12 to 26 months after the onset of illness. We assessed demographic data and measured health status with the Nijmegen Clinical Screening Instrument (NCSI). The NCSI consists of three main domains of functional impairment, symptoms and QoL that are divided into eight sub-domains. The NCSI scores of Q-fever patients older than 50 years (N=277) were compared with patients younger than 50 years (N=238) and with norm data from healthy individuals (N=65) and patients with chronic obstructive pulmonary disease (N=128). RESULTS: The response rate was 65.7%. After applying exclusion criteria 515 Q-fever patients were included in this study. The long-term health status of two thirds of Q-fever patients (both younger and older than 50 years) was severely affected for at least one sub-domain. Patients scores were most severely affected on the sub-domains general QoL (44.9%) and fatigue (43.5%). Hospitalisation in the acute phase was significantly related to long-term behavioural impairment (OR 2.8, CI 1.5-5.1), poor health related QoL (OR 2.3,CI 1.5-4.0) and subjective symptoms (OR 1.9, CI 1.1-3.6). Lung or heart disease, depression and arthritis significantly affected the long-term health status of Q-fever patients. CONCLUSIONS: Q-fever patients presented 12 to 26 months after the onset of illness severe -clinically relevant- subjective symptoms, functional impairment and impaired QoL. All measured sub-domains of the health status were impaired. Hospitalisation and co-morbidity were predictors for worse scores. Our data emphasise that more attention is needed not only to prevent exposure to Q-fever but also for the prevention and treatment of the long-term consequences of this zoönosis.


Assuntos
Febre Q/epidemiologia , Adulto , Idoso , Estudos de Coortes , Feminino , Seguimentos , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Tempo
14.
BMC Pediatr ; 11: 86, 2011 Oct 11.
Artigo em Inglês | MEDLINE | ID: mdl-21989260

RESUMO

BACKGROUND: The Cystic Fibrosis Questionnaire (CFQ) is widely used in research as an instrument to measure quality of life in patients with cystic fibrosis (CF). In routine patient care however, measuring quality of life is still not implemented in guidelines. One of the reasons might be the lack of consensus on how to interpret CFQ scores of an individual patient, because appropriate reference data are lacking. The question which scores reflect normal functioning and which scores reflect clinically relevant problems is still unanswered. Moreover, there is no knowledge about how healthy children and adolescents report on their quality of life (on the CFQ). With regard to quality of life the effect of normal development should be taken into account, especially in childhood and adolescence. Therefore, it is important to gain more knowledge about how healthy children and adolescents report on their quality of life and if there are any difference in a healthy populations based on age or gender. Without these data we cannot adequately interpret the CFQ as a tool in clinical care to provide patient-tailored care. Therefore this study collected data of the CFQ in healthy children and adolescents with the aim to refer health status of CF youngsters to that of healthy peers. METHODS: The CFQ was completed by 478 healthy Dutch children and adolescents (aged 6-20) in a cross-sectional study. RESULTS: The majority of healthy children (over 65%) did not reach maximum scores on most domains of the CFQ. Median CFQ-scores of healthy children and adolescents ranged from 67 to 100 (on a scale of 0-100) on the different CFQ-domains. Significant differences in quality of life exist among healthy children and adolescents, and these depend on age and gender. CONCLUSIONS: Reference data of quality of life scores from a healthy population are essential for adequate interpretation of quality of life in young patients with CF. Clinicians should be aware that the perception of health-related quality of life is not as disease-specific as one might think and also relies on factors such as age, normal maturation and gender.


Assuntos
Qualidade de Vida , Inquéritos e Questionários , Adolescente , Fatores Etários , Criança , Estudos Transversais , Fibrose Cística , Feminino , Humanos , Masculino , Países Baixos , Fatores Sexuais , Adulto Jovem
15.
J Thorac Dis ; 13(8): 4872-4884, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-34527326

RESUMO

BACKGROUND: Fatigue is highly prevalent in patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis. However, the difference in fatigue perceptions for these patients is unknown and this may be important to better understand what fatigue means to the individual patient. METHODS: This cross-sectional quantitative study aims to determine the different perceptions of fatigue as 'frustrating', 'exhausting', 'pleasant', 'frightening' using the Fatigue Quality List and to assess determinants related to these perceptions of fatigue. Beside the fatigue quality connotations, demographics, lung function, fatigue severity (Checklist Individual Strength subscale Fatigue), dyspnea (modified-Medical Research Council), fatigue catastrophizing (Fatigue Catastrophizing Scale), anxiety/depression (Hospital Anxiety and Depression Scale) and general health status (EuroQoL 5-dimension 5-level) were assessed. RESULTS: Mean frequency score of fatigue-related perceptions in patients with IPF was 3.4 points and in patients with sarcoidosis 4.0 points. Severely fatigued patients with IPF reported their fatigue less 'pleasant' significantly more often than patients without severe fatigue. Fatigue severity, dyspnea, catastrophizing and general health were significantly correlated with the negative connotation categories of the Fatigue Quality List in patients with IPF. Severely fatigued sarcoidosis patients reported their fatigue perceptions significantly more often as 'frustrating', 'exhausting', 'frightening' and less 'pleasant' than patients without severe fatigue. Moreover, in patients with sarcoidosis fatigue severity, dyspnea, catastrophizing and depression were significantly associated with all four categories of the Fatigue Quality List that describe the experienced fatigue (P<0.05). CONCLUSIONS: The current findings of experiences of fatigue in patients with IPF or pulmonary sarcoidosis provide insights for professionals treating these patients. Although similarities were found in the several experiences of fatigue across non-severely and severely fatigued patients, differences were also evident and could be mapped for IPF and sarcoidosis.

16.
Eur Respir Rev ; 30(160)2021 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-33853886

RESUMO

BACKGROUND: Fatigue is a distressing symptom in patients with COPD. Little is known about the factors that contribute to fatigue in COPD. This review summarises existing knowledge on the prevalence of fatigue, factors related to fatigue and the instruments most commonly used to assess fatigue in COPD. METHODS: Pubmed, PsycINFO, EMBASE, Cochrane and CINAHL databases were searched for studies from inception up to 7 January 2020 using the medical subject headings "COPD" and "Fatigue". Studies were reviewed in accordance with PRISMA guidelines. RESULTS: 196 studies were evaluated. The prevalence of fatigue ranged from 17-95%. Age (r=-0.23 to r=0.27), sex (r=0.11), marital status (r=-0.096), dyspnoea (r=0.13 to r=0.78), forced expiatory volume in 1 s % predicted (r=-0.55 to r=-0.076), number of exacerbations (r=0.27 to r=0.38), number of comorbidities (r=0.10), number of medications (r=0.35), anxiety (r=0.36 to r=0.61), depression (r=0.41 to r=0.66), muscle strength (r=-0.78 to r=-0.45), functional capacity (r=-0.77 to r=-0.14) and quality of life (r=0.48 to r=0.77) showed significant associations with fatigue. CONCLUSIONS: Fatigue is a prevalent symptom in patients with COPD. Multiple physical and psychological factors seem to be associated with fatigue. Future studies are needed to evaluate these underlying factors in integral analyses in samples of patients with COPD.


Assuntos
Doença Pulmonar Obstrutiva Crônica , Qualidade de Vida , Dispneia , Fadiga/diagnóstico , Fadiga/epidemiologia , Humanos , Prevalência , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/epidemiologia
17.
PLoS One ; 16(4): e0249786, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33882094

RESUMO

BACKGROUND: The endurance shuttle walk test (ESWT) is used to evaluate exercise tolerance in patients with chronic obstructive pulmonary disease (COPD). The recommended pre-intervention tolerated duration (Tlim) is between 3-8 minutes for optimal interpretation of treatment effects. However, this window may be exceeded and factors determining ESWT Tlim are not completely understood. Therefore, we aimed to determine whether pulmonary function, physical and incremental shuttle walk test (ISWT) performance measures are associated with ESWT Tlim in COPD patients. METHODS: Assessment data from patients eligible for pulmonary rehabilitation was retrospectively analyzed. Inclusion criteria were: diagnosis of COPD and complete data availability regarding ESWT and ISWT. Patients performed an ESWT at 85% of ISWT speed and were divided into three groups (ESWT Tlim: <3 minutes, 3-8 minutes, >8 minutes). Subject characteristics, severity of complaints, pulmonary function, physical capacity and activity, exercise tolerance and quadriceps muscle strength were evaluated. RESULTS: 245 COPD patients (FEV1 38 (29-52)% predicted) were included. Median ESWT Tlim was 6.0 (3.7-10.3) minutes, 41 (17%) patients walked <3 minutes and 80 (33%) patients walked >8 minutes. Body mass index, maximal oxygen consumption, Tlim on constant work rate cycle test, physical activity level, maximal ISWT speed, dyspnoea Borg score at rest and increase of leg fatigue Borg score during ISWT independently predicted Tlim in multivariate regression analysis (R2 = 0.297, p<0.001). CONCLUSION: This study reported a large variability in ESWT Tlim in COPD patients. Secondly, these results demonstrated that next to maximal ISWT speed, other ISWT performance measures as well as clinical measures of pulmonary function, physical capacity and physical activity were independent determinants of ESWT Tlim. Nevertheless, as these determinants only explained ~30% of the variability, future studies are needed to establish whether additional factors can be used to better adjust individual ESWT pace in order to reduce ESWT Tlim variability.


Assuntos
Tolerância ao Exercício , Consumo de Oxigênio , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Testes de Função Respiratória/métodos , Teste de Caminhada/métodos , Feminino , Volume Expiratório Forçado/fisiologia , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/metabolismo , Músculo Quadríceps/metabolismo , Músculo Quadríceps/fisiopatologia , Estudos Retrospectivos
18.
Sci Rep ; 11(1): 20977, 2021 10 25.
Artigo em Inglês | MEDLINE | ID: mdl-34697347

RESUMO

(1) To evaluate the prevalence of severe and chronic fatigue in subjects with and without chronic disease; (2) to assess to which extent multi-morbidity contributes to severe and chronic fatigue; and (3) to identify predisposing and associated factors for severe and chronic fatigue and whether these are disease-specific, trans-diagnostic, or generic. The Dutch Lifelines cohort was used, including 78,363 subjects with (n = 31,039, 53 ± 12 years, 33% male) and without (n = 47,324, 48 ± 12 years, 46% male) ≥ 1 of 23 chronic diseases. Fatigue was assessed with the Checklist Individual Strength-Fatigue. Compared to participants without a chronic disease, a higher proportion of participants with ≥ 1 chronic disease were severely (23% versus 15%, p < 0.001) and chronically (17% versus 10%, p < 0.001) fatigued. The odds of having severe fatigue (OR [95% CI]) increased from 1.6 [1.5-1.7] with one chronic disease to 5.5 [4.5-6.7] with four chronic diseases; for chronic fatigue from 1.5 [1.5-1.6] to 4.9 [3.9-6.1]. Multiple trans-diagnostic predisposing and associated factors of fatigue were found, explaining 26% of variance in fatigue in chronic disease. Severe and chronic fatigue are highly prevalent in chronic diseases. Multi-morbidity increases the odds of having severe and chronic fatigue. Several trans-diagnostic factors were associated with fatigue, providing a rationale for a trans-diagnostic approach.


Assuntos
Doença Crônica/epidemiologia , Fadiga/epidemiologia , Adulto , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Autorrelato
19.
Respir Res ; 11: 98, 2010 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-20649991

RESUMO

BACKGROUND: Improving patients' health status is one of the major goals in COPD treatment. Questionnaires could facilitate the guidance of patient-tailored disease management by exploring which aspects of health status are problematic, and which aspects are not. Health status consists of four main domains (physiological functioning, symptoms, functional impairment, and quality of life), and at least sixteen sub-domains. A prerequisite for patient-tailored treatment is a detailed assessment of all these sub-domains. Most questionnaires developed to measure health status consist of one or a few subscales and measure merely some aspects of health status. The question then rises which aspects of health status are measured by these instruments, and which aspects are not covered. As it is one of the most frequently used questionnaires in COPD, we evaluated which aspects of health status are measured and which aspects are not measured by the St George's Respiratory Questionnaire (SGRQ). METHODS: One hundred and forty-six outpatients with COPD participated. Correlations were calculated between the three sections of the SGRQ and ten sub-domains of the Nijmegen Integral Assessment Framework, covering Symptoms, Functional Impairment, and Quality of Life. As the SGRQ was not expected to measure physiological functioning, we did not include this main domain in the statistical analyses. Pearson's r > or = 0.70 was used as criterion for conceptual similarity. RESULTS: The SGRQ sections Symptoms and Total showed conceptual similarity with the sub-domain Subjective Symptoms (main domain Symptoms). The sections Activity, Impacts and Total were conceptual similar to Subjective Impairment (main domain Functional Impairment). The SGRQ sections were not conceptual similar to other sub-domains of Symptoms, Functional Impairment, nor to any sub-domain of Quality of Life. CONCLUSIONS: The SGRQ could facilitate the guidance of disease management in COPD only partially. The SGRQ is appropriately only for measuring problems in the sub-domains Subjective Symptoms and Subjective Impairment, and not for measuring problems in other sub-domains of health status, such as Quality of Life.


Assuntos
Avaliação da Deficiência , Indicadores Básicos de Saúde , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Inquéritos e Questionários , Atividades Cotidianas , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Países Baixos , Pacientes Ambulatoriais , Medicina de Precisão , Valor Preditivo dos Testes , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/terapia , Qualidade de Vida , Reprodutibilidade dos Testes , Índice de Gravidade de Doença
20.
NPJ Prim Care Respir Med ; 30(1): 39, 2020 09 08.
Artigo em Inglês | MEDLINE | ID: mdl-32901030

RESUMO

In this study, we compare health status between COPD patients treated in three different care levels in the Netherlands and assess determinants that influence their health status. We applied the Nijmegen Clinical Screening Instrument to measure eight health status subdomains in primary (n = 289), secondary (n = 184) and tertiary care (n = 433) COPD patient cohorts. Proportions of patients with severe problems in ≥3 subdomains are 47% in primary, 71% in secondary and 94% in tertiary care. Corrected for patient characteristics, differences between the care levels are statistically significant for nearly all health status subdomains. The pooled cohort data show female sex, age, FEV1 % predicted and BMI to be determinants of one or more subdomains. We conclude that the proportion of COPD patients with severe health status problems is substantial, not just in tertiary care but also in primary and secondary care. Use of detailed health status information may support patient-tailored COPD care.


Assuntos
Atenção Primária à Saúde/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/terapia , Atenção Secundária à Saúde/estatística & dados numéricos , Atenção Terciária à Saúde/estatística & dados numéricos , Feminino , Volume Expiratório Forçado , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Qualidade de Vida , Índice de Gravidade de Doença
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