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BACKGROUND: The cancer experienced in adolescent and young adult (AYA) could disturb developmental changes and long-term life. The current AYA guidelines and research for survivorship were developed and reported according to the general age range of 15-39 years; however, expected life events vary by diagnosed age. We aimed to examine the social, psychological, and physical well-being of AYA cancer survivors by age at diagnosis using a multinational representative dataset focusing on age at diagnosis. METHODS: We conducted a cross-sectional study using the US and Korean National Health and Nutrition Examination Surveys from 2007 to 2018. Participants diagnosed with any cancer aged 15-39 years and were aged > 18 years at the survey year were defined as AYA cancer survivors. AYA were classified into three groups based on their diagnosed age: adolescent survivors (diagnosed between the ages of 15 and 19, n = 45), young adult survivors (diagnosed between the ages of 20 and 29, n = 238), and late young adult survivors (diagnosed between the ages of 30 and 39, n = 539). We also selected an age-, sex-, race-, and survey year-matched general population with 1:5 ratio among participants without cancer (N = 4110). RESULTS: The average age of the survey was 29.1, 43.7, and 48.7 years for AYA survivors diagnosed during adolescence, young adulthood, and late young adulthood, respectively. Adolescent survivors had more non-couple marital status (adjusted odds ratio (aOR), 1.34; 95% CI, 1.10-1.64) and unemployed (aOR, 1.30; 95% CI, 1.05-1.61) compared to late young adult survivors. Comparing with the matched general, adolescent survivors were more in poor general health (aOR, 4.65; 95% CI, 2.09-10.38) and unemployed (aOR, 2.17; 95% CI, 1.12-4.24) and late young adult survivors were more non-couple (aOR, 1.40; 95% CI, 1.05-1.86). CONCLUSION: This study provides evidence for future studies on long-term health, which may vary according to age at the time of diagnosis among AYA with cancer.
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Supervivientes de Cáncer , Neoplasias , Humanos , Adolescente , Adulto Joven , Masculino , Femenino , Estudios Transversales , Neoplasias/epidemiología , Neoplasias/diagnóstico , Adulto , Supervivientes de Cáncer/estadística & datos numéricos , Factores de Edad , Estados Unidos/epidemiología , Bases de Datos Factuales , República de Corea/epidemiología , Encuestas NutricionalesRESUMEN
BACKGROUND: Knowledge regarding the health impacts of daily eating frequency (DEF) and nighttime fasting duration (NFD) on mortality is very limited. OBJECTIVE: This study aimed to examine whether DEF and NFD are associated with CVD and all-cause mortality. METHODS: This was a prospective cohort study of a nationally representative sample from the United States, including 30,464 adults who participated in the National Health and Nutrition Examination Survey 2003-2014. Using 24-h dietary recall, DEF was assessed by the number of eating episodes, and NFD was calculated by the first and last eating time across a day. Death information was obtained from the National Death Index up to 2019. Weighted Cox proportional hazards regression models were used to assess survival relationships of DEF and NFD with mortality. RESULTS: During 307,686 person-years of follow-up, 4560 deaths occurred, including 1824 CVD cases. After adjustment for confounders, compared to DEF at 4-6 times, participants whose DEF was less than 3 times had greater CVD [hazard-ratio (HR) = 1.33, 95% confidence-interval (CI): 1.06-1.67] and all-cause (HR = 1.16, 95% CI: 1.01-1.33) mortality risks. Furthermore, compared to NFD of 10 to 11 h, participants whose NFD was shorter than 10 h had HRs of 1.30 (95% CI: 1.08-1.55) for CVD mortality and 1.23 (95% CI: 1.08-1.39) for all-cause mortality. NFD longer than 14 h was also related to CVD mortality (HR = 1.37, 95% CI: 1.12-1.67) and all-cause mortality (HR = 1.36, 95% CI: 1.19-1.54). Similar results for the association of NFD and DEF with heart-specific and stroke-specific mortality were observed. CONCLUSION: This study found that DEF less than 3 times and NFD shorter than 10 h or longer than 14 h were independently associated with greater cardiovascular and all-cause mortality.
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Enfermedades Cardiovasculares , Carubicina/análogos & derivados , Adulto , Humanos , Estados Unidos/epidemiología , Encuestas Nutricionales , Estudios Prospectivos , Conducta Alimentaria , AyunoRESUMEN
AIMS: This protocol describes a forthcoming systematic review of the question: 'What are the long-term effects of historical influenza pandemics on mental health, resulting either from illness itself or the social or economic effects of pandemics and public health responses?' METHODS: We will review studies that investigate associations between influenza pandemics and long-term mental-health impacts. Following the PICO framework, populations (P) may include those with and without pre-existing mental-health symptoms or conditions. Intervention (I) is exposure to an influenza pandemic during the study period encompassing five pandemics (1889-2009). Comparators or controls (C) are not applicable. The review will address outcomes (O) of mental-health morbidity from direct infection and/or related circumstances, including, for example, receiving a disability pension, institutionalisation and/or death. RESULTS: Due to societal disruptions, illness and bereavement during pandemics, many people are likely to be affected in myriad ways. Therefore, investigation into mental-health consequences should not be restricted by risk group or diagnosis. To our knowledge, this protocol and forthcoming systematic review are the first to include studies for broad populations and multiple measures of mental-health morbidity. The historical perspective and comparison of pandemics with varying severity but assumed similar causative pathogens also enable insights into the consistency of long-term consequences across pandemics. CONCLUSIONS: Pandemics likely produce long-term mental-health impacts with relevance for social, health and economic planning. The systematic review based on this protocol will complement other evidence on pandemic impacts and help policymakers incorporate relevant interventions.
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Gripe Humana , Pandemias , Revisiones Sistemáticas como Asunto , Humanos , Gripe Humana/epidemiología , COVID-19/epidemiología , Salud Mental , Trastornos Mentales/epidemiología , Proyectos de InvestigaciónRESUMEN
Robust polymeric nanofilms can be used to construct gas-permeable soft electronics that can directly adhere to soft biological tissue for continuous, long-term biosignal monitoring. However, it is challenging to fabricate gas-permeable dry electrodes that can self-adhere to the human skin and retain their functionality for long-term (>1 d) health monitoring. We have succeeded in developing an extraordinarily robust, self-adhesive, gas-permeable nanofilm with a thickness of only 95 nm. It exhibits an extremely high skin adhesion energy per unit area of 159 µJ/cm2 The nanofilm can self-adhere to the human skin by van der Waals forces alone, for 1 wk, without any adhesive materials or tapes. The nanofilm is ultradurable, and it can support liquids that are 79,000 times heavier than its own weight with a tensile stress of 7.82 MPa. The advantageous features of its thinness, self-adhesiveness, and robustness enable a gas-permeable dry electrode comprising of a nanofilm and an Au layer, resulting in a continuous monitoring of electrocardiogram signals with a high signal-to-noise ratio (34 dB) for 1 wk.
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Since the world's first in vitro fertilization baby was born in 1978, there have been more than 8 million children conceived through assisted reproductive technologies (ART) worldwide, and a significant proportion of them have reached puberty or young adulthood. Many studies have found that ART increases the risk of adverse perinatal outcomes, including preterm birth, low birth weight, small size for gestational age, perinatal mortality, and congenital anomalies. However, data regarding the long-term outcomes of ART offspring are limited. According to the developmental origins of health and disease theory, adverse environments during early life stages may induce adaptive changes and subsequently result in an increased risk of diseases in later life. Increasing evidence also suggests that ART offspring are predisposed to an increased risk of non-communicable diseases, such as malignancies, asthma, obesity, metabolic syndrome, diabetes, cardiovascular diseases, and neurodevelopmental and psychiatric disorders. In this review, we summarize the risks for long-term health in ART offspring, discuss the underlying mechanisms, including underlying parental infertility, epigenetic alterations, non-physiological hormone levels, and placental dysfunction, and propose potential strategies to optimize the management of ART and health care of parents and children to eliminate the associated risks. Further ongoing follow-up and research are warranted to determine the effects of ART on the long-term health of ART offspring in later life.
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Resultado del Embarazo , Nacimiento Prematuro , Niño , Embarazo , Recién Nacido , Femenino , Humanos , Persona de Mediana Edad , Adulto Joven , Adulto , Nacimiento Prematuro/epidemiología , Nacimiento Prematuro/etiología , Embarazo Múltiple , Placenta , Técnicas Reproductivas Asistidas/efectos adversosRESUMEN
OBJECTIVES: We propose a general framework for estimating long-term health and economic effects that takes into account four time-related aspects. We apply it to a reduction in exposure to air pollution in the Canton of Geneva. STUDY DESIGN: Methodological developments on the evaluation of long-term economic and health benefits, with an empirical illustration. METHODS: We propose a unified framework-the comprehensive impact assessment (CIA)-to assess the long-term effects of morbidity and mortality in health and economic terms. This framework takes full account of four time-related issues: cessation lag, policy/technical implementation timeframe, discounting and time horizon. We compare its results with those obtained from standard quantitative health impact assessment (QHIA) in an empirical illustration involving air pollution reduction in the canton of Geneva. RESULTS: We find that by neglecting time issues, the QHIA estimates greater health and economic benefits than the CIA. The overestimation is about 50% under reasonable assumptions and increases ceteris paribus with the magnitude of the cessation lag and the discount factor. It decreases both with the time horizon and with the implementation timeframe. CONCLUSION: A proper evaluation of long-term health and economic effects is an important issue when they are to be used in cost-benefit analyses, particularly for mortality, which often represents the largest fraction. We recommend using the CIA to calculate more accurate values.
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Contaminación del Aire , Análisis Costo-Beneficio , Evaluación del Impacto en la Salud , Humanos , Contaminación del Aire/efectos adversos , Evaluación del Impacto en la Salud/métodos , Suiza , Factores de Tiempo , Exposición a Riesgos Ambientales/efectos adversos , Mortalidad/tendenciasRESUMEN
Strain sensors have been attracting tremendous attention for the promising application of wearable devices in recent years. However, the trade-off between high resolution, high sensitivity, and broad detection range is a great challenge for the application of strain sensors. Herein, a novel design of hierarchical synergistic structure (HSS) of Au micro cracks and carbon black (CB) nanoparticles is reported to overcome this challenge. The strain sensor based on the designed HSS exhibit high sensitivity (GF > 2400), high strain resolution (0.2%) even under large loading strain, broad detection range (>40%), outstanding stability (>12000 cycles), and fast response speed simultaneously. Further, the experiments and simulation results demonstrate that the carbon black layer greatly changed the morphology of Au micro-cracks, forming a hierarchical structure of micro-scale Au cracks and nano-scale carbon black particles, thus enabling synergistic effect and the double conductive network of Au micro-cracks and CB nanoparticles. Based on the excellent performance, the sensor is successfully applied to monitoring tiny signals of the carotid pulse during body movement, which illustrates the great potential in the application of health monitoring, human-machine interface, human motion detection, and electronic skin.
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This study determined long-term health outcomes (≥10 years) of Q-fever fatigue syndrome (QFS). Long-term complaints, health-related quality of life (HRQL), health status, energy level, fatigue, post-exertional malaise, anxiety, and depression were assessed. Outcomes and determinants were studied for the total sample and compared among age subgroups: young (<40years), middle-aged (≥40-<65years), and older (≥65years) patients. 368 QFS patients were included. Participants reported a median number of 12.0 long-term complaints. Their HRQL (median EQ-5D-5L index: 0.63) and health status (median EQ-VAS: 50.0) were low, their level of fatigue was high, and many experienced post-exertional malaise complaints (98.9%). Young and middle-aged patients reported worse health outcomes compared with older patients, with both groups reporting a significantly worse health status, higher fatigue levels and anxiety, and more post-exertional malaise complaints and middle-aged patients having a lower HRQL and a higher depression risk. Multivariate regression analyses confirmed that older age is associated with better outcomes, except for the number of health complaints. QFS has thus a considerable impact on patients' health more than 10 years after infection. Young and middle-aged patients experience more long-term health consequences compared with older patients. Tailored health care is recommended to provide optimalcare for each QFS patient.
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Síndrome de Fatiga Crónica , Fiebre Q , Adulto , Humanos , Persona de Mediana Edad , Fatiga/etiología , Fatiga/complicaciones , Síndrome de Fatiga Crónica/epidemiología , Evaluación de Resultado en la Atención de Salud , Fiebre Q/complicaciones , Fiebre Q/epidemiología , Calidad de Vida , AncianoRESUMEN
AIMS: This study aimed to present the Johns Hopkins Adjusted Clinical Groups (ACG) System risk stratification profile of a total adult population of somatic health-care users when using data from either general practitioners (GPs) or hospital services and to compare the number and characteristics of individuals identified as having complex and long-term health-care needs in each data source. METHODS: This was a registry-based study that included all adult residents (N=168,285) in four municipalities in Central Norway who received somatic health care during 2013. Risk profiles were generated using the ACG System based on age, sex and diagnoses registered by GPs or the local hospital. ACG output variables on number of chronic conditions, frailty and concurrent resource utilisation were chosen as indicators of complexity. RESULTS: Nearly nine out of 10 (83.9%) of the population had been in contact with a GP, and 35.4% with the hospital. The mean number of diagnoses (3.0) was equal in both sources. A larger proportion of the population had higher risk scores in all variables except frailty when comparing hospital data to GP data. This was also found when comparing individuals identified as having complex and long-term health-care needs. A similar proportion of the population was found to have complex and long-term health-care needs (hospital 6.7%, GP 6.3%), but only one in five (21.5%) were identified in both data sets. CONCLUSIONS: As data from GPs and hospitals identified mostly different individuals with complex and long-term health-care needs, combining data sources is likely to be the best option for identifying those most in need of special attention.
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AIM: To gain a deeper understanding of the experiences of participation in the everyday life of emerging adults living with long-term health challenges and how this influences their own quality of life. METHODS: Using an explorative study design, data were collected through in-depth interviews with a sample of 12 young people aged 18-29 years living with long-term health challenges in Norway. FINDINGS: The analysis identified one overarching theme of struggling to participate in everyday life, and four subthemes: the notion of being independent but also dependent, experiencing mismatch between needs and support, experiencing deprivation of spontaneity and feeling uncertain about the future. The emerging adults experienced difficulties with participation in key areas of life such as education, employment and leisure activities. Associated symptoms of their diagnosis, limited physical abilities and lack of sufficient support made it hard to participate in everyday life the way they aspired to. CONCLUSION: The challenges of living with a long-term health challenge as an emerging adult contributed to limitations in participation in different areas of life that was perceived as important for their quality of life.
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Emociones , Calidad de Vida , Adulto , Humanos , Adolescente , Actividades Recreativas , Empleo , NoruegaRESUMEN
Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended.
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Personal de Salud , Autonomía Personal , Humanos , Teoría FundamentadaRESUMEN
STUDY QUESTION: Is the health of singletons born after frozen embryo transfer (FET) comparable to that of singletons born after fresh embryo transfer (ET) until early adulthood? SUMMARY ANSWER: The health of singletons born after FET does not differ from that of singletons born after fresh ET. WHAT IS KNOWN ALREADY: The differences in perinatal outcomes of children born after FET and fresh ET are well known. FET is associated with an increased risk of large-for-gestational-age but diminished risks of preterm birth (PTB), small-for-gestational-age and decreased perinatal mortality compared to fresh ET. However, knowledge on the long-term health after FET is scarce. STUDY DESIGN, SIZE, DURATION: This retrospective register-based cohort study compares singletons born after FET (n = 1825) between the years 1995 and 2006 to those born after fresh ET (n = 2933) and natural conception (NC, n = 31â136) with a mean follow-up time of 18-20 years. PARTICIPANTS/MATERIALS, SETTING, METHODS: Singletons born after FET were compared to those born after fresh ET and NC regarding the frequencies of diagnoses in the main ICD-10 chapters (International Statistical Classification of Diseases and Related Health Problems, 10th revision), the number of outpatient visits and hospital admissions, and mortality. Adjustments were made for PTB, maternal age, parity, socioeconomic status based on mother's occupation and offspring sex. The study combines data from the Finnish Medical Birth Register, the Finnish Care Register for Health Care (CRHC) and the Cause-of-Death Register at Statistics Finland. The Student's T-test was used for continuous variables, and the Chi-square test was used for categorical variables. Cox regression was used to estimate crude and adjusted hazard ratios (HRs and aHRs, respectively). A general linear model was used to compare the means of outpatient visits, hospital admissions and lengths of hospital stays per person. MAIN RESULTS AND THE ROLE OF CHANCE: No significant differences between the FET and fresh ET groups were found in the frequency of diagnoses in any of the ICD-10 chapters or in the parameters describing the need for hospital care. However, compared to the NC group, higher proportions in the FET group had outpatient visits in the hospital (93.5% vs 92.2%, aHR 1.23, 95% CI 1.17, 1.30) or hospital admissions (48% vs 46.5%, aHR 1.28, 95% CI 1.19, 1.37). Compared to the NC group, the FET group had elevated adjusted risks of diagnoses of infectious and parasitic diseases (aHR 1.24; 95% CI 1.11, 1.38), neoplasms (aHR 1.68; 95% CI 1.48, 1.91), diseases of the eye and adnexa, the ear or mastoid process (aHR 1.11; 95% CI 1.01, 1.21), the respiratory system (aHR 1.15; 95% CI 1.06, 1.23), the digestive system (aHR 1.17; 95% CI 1.05, 1.32), the skin or subcutaneous tissue (aHR 1.28; 95% CI 1.14, 1.43) and the genitourinary system (aHR 1.27; 95% CI 1.11, 1.45), as well as congenital malformations or chromosomal abnormalities (aHR 1.31; 95% CI 1.14, 1.50) and symptoms, signs or abnormal clinical or laboratory findings (aHR 1.25, 95% CI 1.16, 1.34). LIMITATIONS, REASONS FOR CAUTION: Only hospital-based inpatient and outpatient care is covered by the CRHC register, excluding milder cases diagnosed elsewhere. We were not able to study the effect of ART treatments and subfertility separately in our setting. In addition, although our cohort is reasonably sized, even larger cohorts would be needed to reliably study rare outcomes, such as cancer. WIDER IMPLICATIONS OF THE FINDINGS: For many ICD-10 chapters, we present the first published data on the long-term outcome of singletons born after FET. The results on FET versus fresh ET are reassuring, whereas the results on FET versus NC warrant further investigation. STUDY FUNDING/COMPETING INTEREST(S): Finnish government research funding was obtained for this study. Funding was also obtained from the Finnish Medical Society Duodecim, the Päivikki and Sakari Sohlberg Foundation, Orion Research Foundation, Finnish Society of Obstetrics and Gynaecology (research grants to A.M.T.) and Finnish government research funding. The funding sources were not involved in the planning or execution of the study. The authors have no competing interests to declare. TRIAL REGISTRATION NUMBER: N/A.
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Criopreservación , Nacimiento Prematuro , Embarazo , Femenino , Niño , Recién Nacido , Humanos , Adulto , Finlandia/epidemiología , Estudios de Cohortes , Estudios Retrospectivos , Criopreservación/métodos , Nacimiento Prematuro/epidemiología , Nacimiento Prematuro/etiología , Transferencia de Embrión/efectos adversos , Transferencia de Embrión/métodosRESUMEN
Although in vitro fertilization (IVF) is associated with adverse perinatal outcomes, there is increasing concern about the long-term and sex-specific health implications. Augmenting our IVF mouse model to longitudinally investigate metabolic outcomes in offspring from optimal neonatal litter sizes, we found sex-specific metabolic outcomes in IVF offspring. IVF-conceived females had higher body weight and cholesterol levels compared to naturally conceived females, whereas IVF-conceived males had higher levels of triglycerides and insulin, and increased body fat composition. Through adult liver transcriptomics and proteomics, we identified sexually dimorphic dysregulation of the sterol regulatory element-binding protein (SREBP) pathways that are associated with the sex-specific phenotypes. We also found that global loss of DNA methylation in placenta was linked to higher cholesterol levels in IVF-conceived females. Our findings indicate that IVF procedures have long-lasting sex-specific effects on metabolic health of offspring and lay the foundation to utilize the placenta as a predictor of long-term outcomes.
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Fertilización/fisiología , Proteoma/metabolismo , Factores Sexuales , Transcriptoma/fisiología , Animales , Composición Corporal/fisiología , Metilación de ADN/fisiología , Femenino , Hígado/metabolismo , Ratones , Placenta/metabolismo , EmbarazoRESUMEN
BACKGROUND: Although previous reviews demonstrated effectiveness related to medication adherence interventions, they incorporated various digital platforms and other multiple delivery modes, which makes difficult to distinguish what aspects of the interventions led to effectiveness. PURPOSE: This review aimed to (i) estimate the efficacy of face-to-face medication adherence interventions on adherence outcomes, in adults with Long Term Health Conditions (LTHCs) and (ii) identify the Behaviour Change Techniques (BCTs) used in the interventions and examine their potential impact on efficacy. METHODS: Cochrane Controlled Register of Trials, Embase, MEDLINE (Ovid), PsycINFO, Web of Science, PubMed, and Scopus databases were searched. Randomized controlled trials were included if they described an intervention to improve medication adherence, delivered via face-to-face only, and included patients with LTHCs. Studies were excluded if they used additional delivery modes, involved family members or used a group format. In addition, use of BCTs was coded. RESULTS: 20 studies were included (n = 3667). Statistically significant pooled effects were found favoring the intervention than control, for the following MEMS (electronic monitoring) measures: percentage of prescribed doses taken on time over a period of 3 weeks to 2 months (MD 9.34, 95% CI 4.36-14.33, pâ =â .0002; I2 =0%); percentage of prescribed doses taken for a period of 1 week to 2 months (MD 5.63, 95% CI 1.62-9.64, pâ =â .006; I2 = 51%) and for 1 month (OR = 2.51, 95% CI 1.37-4.57, pâ =â .003; I2 = 0%); percentage of days correct doses taken for 1 month to 14 weeks (MD 6.59, 95% CI 0.74-13.15, pâ =â .03; I2 = 68%). Studies using the Morisky scale showed a significant between group difference for 1-3 months (MD 0.86, 95% CI 0.59-1.13, pâ <â .00001; I2 = 0%). Overall, more BCTs were identified in intervention conditions than in comparison conditions (22 vs. 10). The impact of BCTs on intervention effectiveness could not be established as the analyses were underpowered. CONCLUSIONS: Face-to-face interventions increased adherence to medication among adult patients with LTHCs. Although we were able to identify BCTs among interventions, data were insufficient to determine the impact of particular BCTs on intervention effectiveness.
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Terapia Conductista , Cumplimiento de la Medicación , Adulto , Humanos , Terapia Conductista/métodosRESUMEN
BACKGROUND: Parkinson's disease is a complex neurodegenerative condition with significant impact on quality of life (QoL), wellbeing and function. The objective of this review is to evaluate the clinical effectiveness of self-management interventions for people with Parkinson's disease, taking a broad view of self-management and considering effects on QoL, wellbeing and function. METHODS: Systematic searches of four databases (MEDLINE, Embase, PsycINFO, Web of Science) were conducted for studies evaluating self-management interventions for people with Parkinson's disease published up to 16th November 2020. Original quantitative studies of adults with idiopathic Parkinson's disease were included, whilst studies of atypical Parkinsonism were excluded. Full-text articles were independently assessed by two reviewers, with data extracted by one reviewer and reliability checked by a second reviewer, then synthesised through a narrative approach and, for sufficiently similar studies, a meta-analysis of effect size was conducted (using a random-effects meta-analysis with restricted maximum likelihood method pooled estimate). Interventions were subdivided into self-management components according to PRISMS Taxonomy. Risk of bias was examined with the Cochrane Risk of Bias 2 (RoB2) tool or ROBIN-I tool as appropriate. RESULTS: Thirty-six studies were included, evaluating a diverse array of interventions and encompassing a range of study designs (RCT n = 19; non-randomised CT n = five; within subject pre- and post-intervention comparisons n = 12). A total of 2884 participants were assessed in studies across ten countries, with greatest output from North America (14 studies) and UK (six studies). Risk of bias was moderate to high for the majority of studies, mostly due to lack of participant blinding, which is not often practical for interventions of this nature. Only four studies reported statistically significant improvements in QoL, wellbeing or functional outcomes for the intervention compared to controls. These interventions were group-based self-management education and training programmes, either alone, combined with multi-disciplinary rehabilitation, or combined with Cognitive Behaviour Therapy; and a self-guided community-based exercise programme. Four of the RCTs evaluated sufficiently similar interventions and outcomes for meta-analysis: these were studies of self-management education and training programmes evaluating QoL (n = 478). Meta-analysis demonstrated no significant difference between the self-management and the control groups with a standardised mean difference (Hedges g) of - 0.17 (- 0.56, 0.21) p = 0.38. By the GRADE approach, the quality of this evidence was deemed "very low" and the effect of the intervention is therefore uncertain. Components more frequently observed in effective interventions, as per PRISMS taxonomy analysis, were: information about resources; training or rehearsing psychological strategies; social support; and lifestyle advice and support. The applicability of these findings is weakened by the ambiguous and at times overlapping nature of self-management components. CONCLUSION: Approaches and outcomes to self-management interventions in Parkinson's disease are heterogenous. There are insufficient high quality RCTs in this field to show effectiveness of self-management interventions in Parkinson's disease. Whilst it is not possible to draw conclusions on specific intervention components that convey effectiveness, there are promising findings from some studies, which could be targeted in future evaluations.
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Enfermedad de Parkinson , Automanejo , Humanos , Enfermedad de Parkinson/terapia , Calidad de Vida , Reproducibilidad de los Resultados , Resultado del TratamientoRESUMEN
Exposure to nutritional imbalance during early life can influence disease risk lifelong and across generations. In this long-term conditioning, epigenetics constitutes a key mechanism. They bridge environmental cues and the expression of genes involved in the setting of long-standing biological regulations in numerous organs and species. Epigenetic marks are proposed as innovative diagnostic biomarkers and potential targets in the prevention of diseases. However, a number of uncertainties make them difficult to use in clinical approaches in the context of early exposure to nutritional challenge. In conclusion, active investigations in this field are still needed before clinical applications are considered.
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Epigénesis Genética , Estado Nutricional , HumanosRESUMEN
The role and potential of bioethics input when a child requires the initiation of technology dependence to sustain life is relatively unknown. In particular, little is understood about the meaning physicians give to bioethics as a source of support during the care of children in pediatric intensive care who require long-term ventilation (LTV). We used a hermeneutic phenomenological approach to underpin the collection and analysis of data. Unstructured interviews of 40 physicians in four countries took place during 2020. We found that elements of trust, communication and acceptance informed the physicians' perceptions of the relationship with bioethics. These ranged from satisfaction to disappointment with their input into critical decisions. Bioethics services have potential to help physicians gain clarity over distressing and complex care decisions, yet physicians perceive the service inconsistently as a means of support. This research provides a sound basis to guide more beneficial interactions between clinicians and bioethics services.
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Bioética , Médicos , Niño , Comunicación , Familia , HumanosRESUMEN
Sickle cell disease and thalassaemia are life-long haematological diseases that can impact the quality of life of patients. This impact on quality of life can require intermittent psychological input throughout the lifespan for management. Managing everyday life during the COVID-19 pandemic could be challenging for people with these health conditions, which could impact their health, their mood and anxiety, their perception of control, and their engagement with their regular healthcare services. This report describes the characteristics of these health conditions and discusses reflections, from a specialist psychology service working with this clinical population, about the impact of COVID-19 on patient engagement with the service. The main aim of this report is to highlight the relevance and usefulness of videoconferencing as a therapy format, suggest implications for further service development and suggest alternate ways of working therapeutically with clients.
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Anemia de Células Falciformes , COVID-19 , Talasemia , Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/terapia , Humanos , Pandemias , Calidad de Vida , Talasemia/complicaciones , Talasemia/terapiaRESUMEN
Older adults living in long-term care facilities (LTCF) are particularly vulnerable to COVID-19. We describe the clinical characteristics, the course of disease, and the care needs of 38 non-self-sufficient adults with COVID-19 in an LTCF specially set up for those who could not be discharged home or to a standard LTCF. Residents spent an average of 30.5 days in the facility (range 4-77 days). Most of them recovered and were discharged home or to their LTCF of origin. It seems feasible to set up dedicated facilities to treat and provide assistance in the activities of daily living to older adults with COVID-19.
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The pandemic of coronavirus disease 2019 (COVID-19), caused by severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2), was primarily focused on the involvement of the respiratory system, as the most common clinical manifestation of the disease. Currently, also long COVID poses a significant problem for medicine and public health worldwide. It is characterized by persistent symptoms from various organs or systems, often present for several weeks and months after acute phase of SARS-CoV-2 infection. Currently, the most frequently used description for long COVID referred to symptoms that last more than three months after the onset. Numerous data confirm long-term effects of COVID-19, including pulmonary, cardiovascular, neurological, renal, hematologic, gastrointestinal, endocrine and psychosocial manifestations. It is necessary to monitor patients after acute phase of COVID-19 to detect and treat possible multi-organ long-term consequences of SARS-CoV-2 infection.