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BACKGROUND: Hidradenitis suppurativa (HS) is associated with lower socioeconomic status (SES). The adverse influence of HS on education and employment may explain this. It remains unknown whether HS causes downward social trajectories, i.e., social drift, or whether those affected are born into a lower SES. We aimed to assess the influence of HS on education and employment and compare the highest educational attainment of participants with their parents. METHODS: An anonymous online survey was distributed by patient-led organisations. Frequencies were compared with χ2 and disease interactions with one-way ANOVA. RESULTS: Among 335 respondents from 10 countries, 94.9% completed secondary/high school, 71.3% completed further education, 41.8% completed an undergraduate degree, 20% completed postgraduate education, 10.7% completed a masters, and 2.1% completed a doctorate. Participant education was greater than parental education (p < 0.001). Despite this, 24.2% were unemployed and 15.2% were receiving illness benefit. Compared to national statistics, HS participants from Ireland (p = 0.003), the USA (p < 0.001), and the UK (p < 0.001) were more likely to be unemployed/receiving illness benefit despite higher educational attainment in Ireland (p = 0.006) and the USA (p = 0.003) with similar education in the UK (p = 0.153). CONCLUSIONS: Social drift describes downward social trajectories due to the development of a disease. Participants in this study report greater education than their parents and the background population, but despite this, they are experiencing downward social trajectories with higher unemployment and receipt of illness benefit. Disease onset in HS tends to be at peak educational age. Education does not appear to be impaired by early disease with disease accumulation during employment years limiting opportunities.
Assuntos
Hidradenite Supurativa , Desemprego , Humanos , Hidradenite Supurativa/epidemiologia , Escolaridade , Classe Social , EmpregoRESUMO
BACKGROUND: Several registries for hidradenitis suppurativa (HS) already exist in Europe and the USA. There is currently no global consensus on a core dataset (CDS) for these registries. Creating a global HS registry is challenging, owing to logistical and regulatory constraints, which could limit opportunities for global collaboration as a result of differences in the dataset collected. The solution is to encourage all HS registries to collect the same CDS of information, allowing registries to collaborate. OBJECTIVES: To establish a core set of items to be collected by all HS registries globally. The core set will cover demographic details, comorbidities, clinical examination findings, patient-reported outcome measures and treatments. METHODS: Beginning in September 2022, 20 participants - including both clinicians with expertise in HS and patient advocates - from eight countries across three continents participated in a Delphi process consisting of four rounds of voting, with all participants completing each round. A list of potential items for inclusion in the core set was generated from the relevant published literature, including systematic reviews of comorbidities in HS, clinical and examination findings, and epidemiology. For disease severity and progression items, the Hidradenitis SuppuraTiva Core outcome set International Collaboration (HiSTORIC) core set and other relevant instruments were considered for inclusion. This resulted in 47 initial items. Participants were invited to suggest additional items to include during the first round. Anonymous feedback was provided to inform each subsequent round of voting to encourage consensus. RESULTS: The eDelphi process established a CDS of 48 items recommended for inclusion in all HS registries globally. CONCLUSIONS: The routine adoption of this CDS in current and future HS registries should allow registries in different parts of the world to collaborate, enabling research requiring large numbers of participants.
Assuntos
Hidradenite Supurativa , Humanos , Consenso , Hidradenite Supurativa/diagnóstico , Hidradenite Supurativa/epidemiologia , Hidradenite Supurativa/terapia , Resultado do Tratamento , Técnica Delphi , Sistema de RegistrosRESUMO
Drainage from chronic wounds can significantly negatively impact a patient's quality of life. Change in severity of wound drainage is an important measure of treatment efficacy for wounds. This study reviews existing tools used to assess wound drainage. Qualitative drainage tools are overall less burdensome, and however, differences in user interpretation may reduce inter-rater reliability. Quantitative drainage tools enable more reliable comparisons of drainage severity and treatment response between patients but sometimes require equipment to administer, increasing responder burden. Gaps in the current wound drainage measurement landscape are highlighted. Many of the existing scales have not been validated in robust studies. There is also a lack of validated global drainage measurement tools for patients with chronic inflammatory skin disorders with drainage, such as hidradenitis suppurativa or pyoderma gangrenosum. Development of a succinct drainage measurement tool for inflammatory skin diseases where drainage is a prominent symptom will improve monitoring of meaningful treatment response.
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Hidradenite Supurativa , Qualidade de Vida , Humanos , Reprodutibilidade dos Testes , Hidradenite Supurativa/diagnóstico , Hidradenite Supurativa/terapia , Drenagem , Resultado do TratamentoRESUMO
BACKGROUND: Recurring nodules, abscesses, and lesions characterise hidradenitis suppurativa (HS): a chronic, inflammatory skin disorder. Globally the prevalence of HS is estimated to be around 1% of the population. Leakage, pain, and odour from HS wounds require substantial management. Little is known of the personal burdens that routine wound management imposes on the patient. OBJECTIVES: To evaluate how routine HS wound management impacts patients in terms of the time spent changing dressings, the number of dressings required per day, pain experienced during dressing changes, and negative impact on various domains of their personal lives. METHODS: An anonymous online questionnaire was posted on closed social media patient support groups between April and May 2019. Pearson χ2 test was used to evaluate if Hurley stages influenced the personal impact of wound care routines on patients. Statistical significance was determined as p value <0.05. RESULTS: In total, 908 people from 28 countries responded. Of these, 81% (n = 734) reported that regular dressing changes negatively impacted on their quality of life. Most patients, 82% (n = 744), experience pain during dressing changes. 16% (n = 142) of patients required five or more dressings daily, and 12% (n = 108) spend over 30 min daily tending to wounds. Patients indicated high levels of dissatisfaction with currently available wound dressings. CONCLUSION: HS wound management imposes a substantial personal burden on patients. There is a clear unmet need for HS-specific wound dressings and wound care provisions, and a greater awareness of the condition and its impact is needed among clinicians.
Assuntos
Efeitos Psicossociais da Doença , Hidradenite Supurativa , Bandagens , Hidradenite Supurativa/terapia , Humanos , Dor , Satisfação do Paciente , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The morning period which is recognized as the highest risk for cardiovascular events is associated with a surge in blood pressure (BP). However, it is unclear what aspect of this rise is important. AIM: To determine whether the rate of rise (RoR), the magnitude (day night difference) or the product [BP power (BPPower)] is associated with increased cardiovascular risk. METHODS: We developed a logistic equation method to fit individual 24-h patterns of BP to determine RoR, amplitude and BPPower using the ambulatory recordings from the Ohasama study including 564 men and 971 women (16.6 years follow-up). RESULTS: Men had a higher risk of cardiovascular events than women (24, 16%, Pâ<â0.001). Age and night BP were strong linear risk predictors. In men sorting risk by quintiles of BPPower (adjusted for age, night BP, smoking status) revealed no clear linear or nonlinear pattern. However, in women BPPower had a U-shaped relationship with the lowest risk being the 2-3rd quintile for all cardiovascular events (Pquadraticâ=â0.01) including cardiovascular death (Pquadraticâ=â0.03) and nonfatal stroke (Pquadraticâ=â0.02). A similar but less clear trend was observed with the RoR but only stroke (infarct) reached significance (Pquadraticâ=â0.03) while sorting by range showed a U shaped pattern for combined cardiovascular events (Pquadraticâ=â0.04). CONCLUSION: These findings suggest that the morning BPPower is an important independent risk factor for predicting cardiovascular events and stroke but only in women with median levels having the lowest risk.
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Pressão Sanguínea , Hipertensão/fisiopatologia , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/fisiopatologia , Adulto , Fatores Etários , Idoso , Monitorização Ambulatorial da Pressão Arterial , Ritmo Circadiano , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Fatores SexuaisRESUMO
BACKGROUND: Home blood pressure (BP) monitoring is the self-measurement of BP in the home environment. It is complementary to 24-hour ambulatory BP, for better diagnosis and management of patients with high BP. Home BP monitoring is in widespread use, but variation in monitoring protocols could lead to inaccurate assessment of BP. OBJECTIVE: The aim of this article is to provide a practical guide (with resources) for patients and doctors on how to measure home BP according to a standardised, evidence-based protocol. DISCUSSION: Home BP should be measured using a validated, automatic BP device (preferably with memory storage), using an appropriately sized upper arm cuff. Measurements should be taken after five minutes of seated rest and before medication, food or vigorous exercise. BP should be recorded for seven days (five days minimum) in the morning and evening (two readings each). Overall, home BP is the average systolic and diastolic BP over seven days (excluding the first day); an average of ≥135/85 mmHg is indicative of hypertension.
Assuntos
Determinação da Pressão Arterial/normas , Monitorização Ambulatorial da Pressão Arterial/normas , Guias de Prática Clínica como Assunto , Algoritmos , Austrália , Pressão Sanguínea , Determinação da Pressão Arterial/métodos , Monitorização Ambulatorial da Pressão Arterial/métodos , Humanos , Hipertensão/diagnóstico , Hipertensão/fisiopatologia , Cooperação do PacienteRESUMO
BACKGROUND: Health professions education is characterised by work-based learning and relies on effective verbal feedback. However the literature reports problems in feedback practice, including lack of both learner engagement and explicit strategies for improving performance. It is not clear what constitutes high quality, learner-centred feedback or how educators can promote it. We hoped to enhance feedback in clinical practice by distinguishing the elements of an educator's role in feedback considered to influence learner outcomes, then develop descriptions of observable educator behaviours that exemplify them. METHODS: An extensive literature review was conducted to identify i) information substantiating specific components of an educator's role in feedback asserted to have an important influence on learner outcomes and ii) verbal feedback instruments in health professions education, that may describe important educator activities in effective feedback. This information was used to construct a list of elements thought to be important in effective feedback. Based on these elements, descriptions of observable educator behaviours that represent effective feedback were developed and refined during three rounds of a Delphi process and a face-to-face meeting with experts across the health professions and education. RESULTS: The review identified more than 170 relevant articles (involving health professions, education, psychology and business literature) and ten verbal feedback instruments in health professions education (plus modified versions). Eighteen distinct elements of an educator's role in effective feedback were delineated. Twenty five descriptions of educator behaviours that align with the elements were ratified by the expert panel. CONCLUSIONS: This research clarifies the distinct elements of an educator's role in feedback considered to enhance learner outcomes. The corresponding set of observable educator behaviours aim to describe how an educator could engage, motivate and enable a learner to improve. This creates the foundation for developing a method to systematically evaluate the impact of verbal feedback on learner performance.
Assuntos
Docentes de Medicina/psicologia , Feedback Formativo , Comportamento Verbal , Técnica Delphi , Educação Médica/métodos , Educação Médica/normas , HumanosRESUMO
Home blood pressure monitoring is the self-measurement of blood pressure by patients. In the diagnosis and management of high blood pressure it is complementary to 24-hour ambulatory blood pressure monitoring and clinic blood pressure measurements. Home monitoring can also help to identify white-coat and masked hypertension. Home monitoring has good reproducibility, is well tolerated and relatively inexpensive. It is superior to blood pressure taken in the clinic in predicting cardiovascular events and mortality. Twice-daily measurements are recommended, usually in the morning and evening for a minimum of five days. The threshold for defining hypertension is an average home blood pressure of 135/85 mmHg or above. Patients are engaged with their management when they monitor their own blood pressure. This results in increased adherence to therapy and lower blood pressure.
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Measurement of blood pressure (BP) by a doctor in the clinic has limitations that may result in an unrepresentative measure of underlying BP which can impact on the appropriate assessment and management of high BP. Home BP monitoring is the self-measurement of BP in the home setting (usually in the morning and evening) over a defined period (e.g. 7 days) under the direction of a healthcare provider. When it may not be feasible to measure 24-h ambulatory BP, home BP may be offered as a method to diagnose and manage patients with high BP. Home BP has good reproducibility, is well tolerated, is relatively inexpensive and is superior to clinic BP for prognosis of cardiovascular morbidity and mortality. Home BP can be used in combination with clinic BP to identify 'white coat' and 'masked' hypertension. An average home BP of at least 135/85âmmHg is an appropriate threshold for the diagnosis of hypertension. Home BP may also offer the advantage of empowering patients with their BP management, with benefits including increased adherence to therapy and lower achieved BP levels. It is recommended that, when feasible, home BP should be considered for routine use in the clinical management of hypertension.
Assuntos
Determinação da Pressão Arterial/métodos , Hipertensão/diagnóstico , Autocuidado , Austrália , Pressão Sanguínea , Monitorização Ambulatorial da Pressão Arterial , Consenso , Humanos , Hipertensão/fisiopatologia , Hipertensão Mascarada/diagnóstico , Reprodutibilidade dos Testes , Hipertensão do Jaleco Branco/diagnósticoRESUMO
OBJECTIVES: The purpose of this study was to determine the changes (if any) in the diameter and valve closure time of the lower limb veins in healthy young nulliparous women at different phases of the menstrual cycle. METHODS: Fifty-three young nulliparous women were asked to undergo clinical evaluations and duplex ultrasound examinations of both lower limb veins to monitor changes in the vein diameter and valve closure time at different phases of their menstrual cycles. The vein diameter on B-mode imaging and valve closure time on pulsed Doppler tracing were calculated at days 1 to 4, 14 to 16, and 25 to 28 of the menstrual cycle. Freidman and related samples Wilcoxon signed rank tests were used to determine time-related changes in venous function. RESULTS: The volunteers' mean age ± SD was 20.60 ± 1.90 years, and their mean body mass index was 23.90 ± 4.90 kg/m(2). There was a gradual increase in the vein diameter and valve closure time at the specified phases of the menstrual cycle. Friedman and related samples Wilcoxon signed rank tests for venous segment diameter and valve closure time changes between the different phases of the menstrual cycle were performed and showed statistical significance for each venous segment within each limb (P = .003-.025). Also, when adjusted for body mass index, statistical significance existed for the same venous segments in the same limbs (P =.001-.049). There was no statistical significance for the same venous segments at the same phase of the menstrual cycle between limbs (related samples Wilcoxon signed rank test: P =.079-.97). CONCLUSIONS: During the menstrual cycle, the lower limb veins show an increase in their diameter and valve closure time. These changes are probably mediated by the female sex hormones.
Assuntos
Perna (Membro)/irrigação sanguínea , Perna (Membro)/fisiologia , Ciclo Menstrual/fisiologia , Ultrassonografia Doppler Dupla/métodos , Resistência Vascular/fisiologia , Válvulas Venosas/diagnóstico por imagem , Válvulas Venosas/fisiologia , Feminino , Humanos , Perna (Membro)/diagnóstico por imagem , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Adulto JovemRESUMO
BACKGROUND: We determined clinical predictors of the rate of rise (RoR) in blood pressure in the morning as well as a novel measure of the power of the BP surge (BP(power)) derived from ambulatory blood pressure recordings. METHODS: BP(power) and RoR were calculated from 409 ambulatory blood pressure (ABP) recordings from subjects attending a cardiovascular risk clinic. Anthropometric data, blood biochemistry, and history were recorded. The 409 subjects were 20-82 years old (average 57, SD = 13), 46% male, 9% with hypertension but not on medication and 34% on antihypertensive medication. RESULTS: Average RoR was 11.1 mmHg/hour (SD = 8) and BP(power) was 273 mmHg(2)/hour (SD = 235). Only cholesterol, low density lipoprotein and body mass index (BMI) were associated with higher BP(power) and RoR (P<0.05) from 25 variables assessed. BP(power) was lower in those taking beta-blockers or diuretics. Multivariate analysis identified that only BMI was associated with RoR (4.2% increase/unit BMI, P = 0.020) while cholesterol was the only remaining associated variable with BP(power) (17.5% increase/mmol/L cholesterol, P = 0.047). A follow up of 213 subjects with repeated ABP after an average 1.8 years identified that baseline cholesterol was the only predictor for an increasing RoR and BP(power) (P<0.05). 37 patients who commenced statin subsequently had lower BP(power) whereas 90 age and weight matched controls had similar BP(power) on follow-up. CONCLUSIONS: Cholesterol is an independent predictor of a greater and more rapid rise in morning BP as well as of further increases over several years. Reduction of cholesterol with statin therapy is very effective in reducing the morning blood pressure surge.
Assuntos
Monitorização Ambulatorial da Pressão Arterial/estatística & dados numéricos , Pressão Sanguínea , Adulto , Idoso , Idoso de 80 Anos ou mais , Pressão Sanguínea/efeitos dos fármacos , Colesterol/sangue , Feminino , Humanos , Inibidores de Hidroximetilglutaril-CoA Redutases/farmacologia , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Fatores de Tempo , Adulto JovemRESUMO
1. Numerous studies have examined whether white-coat hypertension (WCHT) is associated with increased cardiovascular risk, but with definitions of WCHT that were not sufficiently robust, results have been inconsistent. The aim of the present review was to standardize the evidence by only including studies that used a definition of WCHT consistent with international guidelines. 2. Published studies were reviewed for data on vascular dysfunction, target organ damage, risk of future sustained hypertension and cardiovascular events. 3. White-coat hypertension has a population prevalence of approximately 15% and is associated with non-smoking and slightly elevated clinic blood pressure. Compared with normotensives, subjects with WCHT are at increased cardiovascular risk due to a higher prevalence of glucose dysregulation, increased left ventricular mass index and increased risk of future diabetes and hypertension. 4. In conclusion, management of a patient with WCHT should focus on cardiovascular risk factors, particularly glucose intolerance, not blood pressure alone.
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Monitorização Ambulatorial da Pressão Arterial/métodos , Hipertensão/diagnóstico , Hipertensão/terapia , Hipertensão do Jaleco Branco/diagnóstico , Hipertensão do Jaleco Branco/terapia , Biomarcadores , Pressão Sanguínea/fisiologia , Doenças Cardiovasculares/etiologia , Doenças Cardiovasculares/fisiopatologia , Humanos , Hipertensão/patologia , Síndrome Metabólica/complicações , Prevalência , Risco , Sistema Nervoso Simpático/fisiopatologia , Hipertensão do Jaleco Branco/epidemiologia , Hipertensão do Jaleco Branco/fisiopatologiaRESUMO
OBJECTIVE: Although most national guidelines for the diagnosis and management of hypertension emphasize that the initiation and modification of blood pressure (BP)-lowering treatment should be related to absolute cardiovascular disease (CVD) risk, there is only limited information on how to incorporate ambulatory BP (ABP) monitoring into this framework. The objective of this initiative is to provide ABP equivalents for BP cut-points for treatment initiation and targets to be included into guidelines. METHODS: A critical analysis of the best available evidence from clinical trials and observational studies was undertaken to develop a new consensus statement for ABP monitoring. RESULTS: ABP monitoring has an important place in defining abnormal patterns of BP, particularly white-coat hypertension (including in pregnancy), episodic hypertension, masked hypertension, labile BP and nocturnal or morning hypertension. This consensus statement provides a framework for appropriate inclusion of ABP equivalents for low, moderate and high CVD risk patients. The wider use of ABP monitoring, although justified, is limited by its availability and cost due to the lack of medical subsidy in Australia. However, cost-benefit analysis does suggest a cost-saving in reduced numbers of inappropriate antihypertensive treatments. CONCLUSION: Although clinic measurement of BP will continue to be useful for screening and management of suspected and true hypertension, ABP monitoring provides considerable added value toward accurate diagnosis and the provision of optimal care in uncomplicated hypertension, as well as for patients with moderate or severe CVD risk.
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Monitorização Ambulatorial da Pressão Arterial , Guias de Prática Clínica como Assunto , Austrália , Medicina Baseada em Evidências , HumanosRESUMO
BACKGROUND: Isolated clinic hypertension (ICHT) may be an indicator of both future hypertension and diabetes. This study examines the 2-h plasma glucose level post load (2hPG), and measures of arterial stiffness, autonomic function and circulating biomarkers in ICHT, normotension and hypertension. METHODS: Participants aged 39-75 years, who were untreated for hypertension, nonsmokers and not known diabetic (n=105) were categorized as normotension, ICHT and hypertension, based on clinic and mean daytime ambulatory blood pressures. Participants had measurements of autonomic function, aorto-femoral pulse wave velocity (PWVc), as well as blood sampling for lipids and potential circulating biomarkers [high sensitivity C-reactive protein (hsCRP), plasminogen activator inhibitor 1 (PAI-1), asymmetric dimethylarginine (ADMA), and von Willebrand factor (vWF)], followed by a glucose tolerance test. RESULTS: A total of 8.3% normotension, 37.9% ICHT and 15% hypertension patients had impaired glucose tolerance. Mean 2hPG adjusted for age and waist circumference was 5.7 mmol/l [interquartile range (IQR) 5.2-6.4] for normotension, 7.4 mmol/l (IQR 6.5-8.3) for ICHT (P=0.002 vs. normotension) and 6.2 mmol/l (IQR 5.6-6.9) for hypertension group. Other measures of insulin resistance were similar in the three groups. Mental stress testing induced a greater blood pressure response in the ICHT group (P=0.01 vs. normotension); other autonomic function measures were similar in the three groups. Mean PWVc, adjusted for age and blood pressure, was similar in ICHT and normotension but increased in the hypertension group. Circulating biomarker levels were not different in the three groups. CONCLUSION: Assessment of total cardiovascular risk in patients with ICHT should include measurement of postprandial glucose.