Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 5.970
Filtrar
Mais filtros

Intervalo de ano de publicação
1.
Proc Natl Acad Sci U S A ; 120(35): e2303370120, 2023 08 29.
Artigo em Inglês | MEDLINE | ID: mdl-37607231

RESUMO

The use of race measures in clinical prediction models is contentious. We seek to inform the discourse by evaluating the inclusion of race in probabilistic predictions of illness that support clinical decision making. Adopting a static utilitarian framework to formalize social welfare, we show that patients of all races benefit when clinical decisions are jointly guided by patient race and other observable covariates. Similar conclusions emerge when the model is extended to a two-period setting where prevention activities target systemic drivers of disease. We also discuss non-utilitarian concepts that have been proposed to guide allocation of health care resources.


Assuntos
Tomada de Decisão Clínica , Pacientes , Humanos , Tomada de Decisões
2.
Circulation ; 150(3): 230-242, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39008556

RESUMO

BACKGROUND: Disparities in hypertension control are well documented but underaddressed. METHODS: RICH LIFE (Reducing Inequities in Care of Hypertension: Lifestyle Improvement for Everyone) was a 2-arm, cluster randomized trial comparing the effect on blood pressure (BP) control (systolic BP ≤140 mm Hg, diastolic BP ≤90 mm Hg), patient activation, and disparities in BP control of 2 multilevel interventions, standard of care plus (SCP) and collaborative care/stepped care (CC/SC). SCP included BP measurement standardization, audit and feedback, and equity-leadership training. CC/SC added roles to address social or medical needs. Primary outcomes were BP control and patient activation at 12 months. Generalized estimating equations and mixed-effects regression models with fixed effects of time, intervention, and their interaction compared change in outcomes at 12 months from baseline. RESULTS: A total of 1820 adults with uncontrolled BP and ≥1 other risk factors enrolled in the study. Their mean age was 60.3 years, and baseline BP was 152.3/85.5 mm Hg; 59.4% were women; 57.4% were Black, 33.2% were White, and 9.4% were Hispanic; 74% had hyperlipidemia; and 45.1% had type 2 diabetes. CC/SC did not improve BP control rates more than SCP. Both groups achieved statistically and clinically significant BP control rates at 12 months (CC/SC: 57.3% [95% CI, 52.7%-62.0%]; SCP: 56.7% [95% CI, 51.9%-61.5%]). Pairwise comparisons between racial and ethnic groups showed overall no significant differences in BP control at 12 months. Patients with coronary heart disease showed greater achievement of BP control in CC/SC than in SCP (64.0% [95% CI, 54.1%-73.9%] versus 50.8% [95% CI, 42.6%-59.0%]; P=0.04), as did patients in rural areas (67.3% [95% CI, 49.8%-84.8%] versus 47.8% [95% CI, 32.4%-63.2%]; P=0.01). Individuals in both arms experienced statistically and clinically significant reductions in mean systolic BP (CC/SC: -13.8 mm Hg [95% CI, -15.2 to -12.5]; SCP: -14.6 mm Hg [95% CI, -15.9 to -13.2]) and diastolic BP (CC/SC: -6.9 mm Hg [95% CI, -7.8 to -6.1]; SCP: -5.5 mm Hg [95% CI, -6.4 to -4.6]) over time. The difference in diastolic BP reduction between CC/SC and SCP over time was statistically significant (-1.4 mm Hg [95% CI, -2.6 to -0.2). Patient activation did not differ between arms. CC/SC showed greater improvements in patient ratings of chronic illness care (Patient Assessment of Chronic Illness Care score) over 12 months (0.12 [95% CI, 0.02-0.22]). CONCLUSIONS: Adding a collaborative care team to enhanced standard of care did not improve BP control but did improve patient ratings of chronic illness care.


Assuntos
Pressão Sanguínea , Hipertensão , Medidas de Resultados Relatados pelo Paciente , Humanos , Hipertensão/terapia , Hipertensão/fisiopatologia , Hipertensão/diagnóstico , Feminino , Masculino , Pessoa de Meia-Idade , Idoso , Disparidades em Assistência à Saúde , Resultado do Tratamento , Anti-Hipertensivos/uso terapêutico
3.
J Med Genet ; 61(8): 734-740, 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-38575304

RESUMO

BACKGROUND: Both hereditary haemorrhagic telangiectasia (HHT) and juvenile polyposis syndrome (JPS) are known to be caused by SMAD4 pathogenic variants, with overlapping symptoms for both disorders in some patients. Additional connective tissue disorders have also been reported. Here, we describe carriers of SMAD4 variants followed in an HHT reference centre to further delineate the phenotype. METHODS: Observational study based on data collected from the Clinical Investigation for the Rendu-Osler Cohort database. RESULTS: Thirty-three participants from 15 families, out of 1114 patients with HHT, had an SMAD4 variant (3%).Regarding HHT, 26 out of 33 participants (88%) had a definite clinical diagnosis based on Curaçao criteria. Complication frequencies were as follows: epistaxis (n=27/33, 82%), cutaneous telangiectases (n=19/33, 58%), pulmonary arteriovenous malformations (n=17/32, 53%), hepatic arteriovenous malformations (AVMs) (n=7/18, 39%), digestive angiodysplasia (n=13/22, 59%). No cerebral AVMs were diagnosed.Regarding juvenile polyposis, 25 out of 31 participants (81%) met the criteria defined by Jass et al for juvenile polyposis syndrome. Seven patients (21%) had a prophylactic gastrectomy due to an extensive gastric polyposis incompatible with endoscopic follow-up, and four patients (13%) developed a digestive cancer.Regarding connective tissue disorders, 20 (61%) had at least one symptom, and 4 (15%) participants who underwent echocardiography had an aortic dilation. CONCLUSION: We describe a large cohort of SMAD4 variant carriers in the context of HHT. Digestive complications are frequent, early and diffuse, justifying endoscopy every 2 years. The HHT phenotype, associating pulmonary and hepatic AVMs, warrants systematic screening. Connective tissue disorders broaden the phenotype associated with SMAD4 gene variants and justify systematic cardiac ultrasound and skeletal complications screening.


Assuntos
Fenótipo , Proteína Smad4 , Telangiectasia Hemorrágica Hereditária , Humanos , Proteína Smad4/genética , Telangiectasia Hemorrágica Hereditária/genética , Telangiectasia Hemorrágica Hereditária/patologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Polipose Intestinal/genética , Polipose Intestinal/congênito , Polipose Intestinal/patologia , Heterozigoto , Idoso , Síndromes Neoplásicas Hereditárias/genética , Síndromes Neoplásicas Hereditárias/patologia , Síndromes Neoplásicas Hereditárias/diagnóstico , Adolescente , Predisposição Genética para Doença , Mutação/genética , Adulto Jovem
4.
J Med Genet ; 61(2): 142-149, 2024 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-38050080

RESUMO

BACKGROUND: Testing for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation. METHODS: Representatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions. RESULTS: Meeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts from across the UK. High-level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients. CONCLUSIONS: Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.


Assuntos
Conselheiros , Neoplasias , Humanos , Testes Genéticos , Neoplasias/genética , Predisposição Genética para Doença , Reino Unido , Células Germinativas
5.
J Med Genet ; 61(4): 399-404, 2024 Mar 21.
Artigo em Inglês | MEDLINE | ID: mdl-38123995

RESUMO

BACKGROUND: The first studies on patients with forkhead-box protein P1 (FOXP1) syndrome reported associated global neurodevelopmental delay, autism symptomatology, dysmorphic features and cardiac and urogenital malformations. The aim of this study was to assess the prevalence of congenital abnormalities in an unbiased cohort of patients with FOXP1 syndrome and to document rare complications. METHODS: Patients with FOXP1 syndrome were included, mostly diagnosed via whole-exome sequencing for neurodevelopmental delay. A parent-report questionnaire was used to assess medical signs and symptoms, including questions about features rated as most burdensome by patients and their family. RESULTS: Forty individuals were included, 20 females and 20 males. The mean age at assessment was 13.2 years (median 8.5 years; range 2-54 years; ≥18 years n = 7). Seven adults were included. All patients had developmental problems, including cognitive, communication, social-emotional and motor delays. The most prevalent medical signs and symptoms include delayed bladder control, sleeping problems, hypermetropia, strabismus, sacral dimple, undescended testes, abnormal muscle tone and airway infections. The most burdensome complaints for patients with FOXP1 syndrome, as perceived by parents, include intellectual disability, impaired communication, behaviour problems, lack of age-appropriate self-reliance, attention problems and anxiety. According to parents, patients have quite similar reported symptoms, although incontinence, obsessions and a complex sensory profile have a higher ranking. CONCLUSION: The results of this study may be used to further guide medical management and identify patient priorities for future research targeted on those features of FOXP1 syndrome that most impair quality of life of patients and their families.


Assuntos
Transtorno Autístico , Deficiência Intelectual , Masculino , Adulto , Feminino , Humanos , Adolescente , Qualidade de Vida , Proteínas Repressoras/genética , Fenótipo , Transtorno Autístico/genética , Fatores de Transcrição/genética , Deficiência Intelectual/diagnóstico , Deficiência Intelectual/epidemiologia , Deficiência Intelectual/genética , Fatores de Transcrição Forkhead/genética , Fatores de Transcrição Forkhead/metabolismo
6.
Circulation ; 148(13): 1039-1052, 2023 09 26.
Artigo em Inglês | MEDLINE | ID: mdl-37747951

RESUMO

Cardiovascular disease (CVD) is the leading cause of death worldwide. Despite medical advances, patients with CVD experience high morbidity and mortality rates, affecting their quality of life and death. Among CVD conditions, palliative care has been studied mostly in patients with heart failure, where palliative care interventions have been associated with improvements in patient-centered outcomes, including quality of life, end-of-life care, and health care use. Although palliative care is now incorporated into the American Heart Association/American College of Cardiology/Heart Failure Society of America guidelines for heart failure, the role of palliative care for non-heart failure CVD remains uncertain. Across all causes of CVD, palliative care can play an important role in all domains of CVD care from initial diagnosis to terminal care. In addition to general cardiovascular palliative care practices applicable to all areas, disease-specific palliative care needs may warrant individualized palliative care models. In this review, we discuss the role of cardiovascular palliative care for ischemic heart disease, valvular disease, arrhythmias, peripheral artery disease, and adult congenital heart disease. Although there are multiple barriers to cardiovascular palliative care, we recommend a framework for studying and developing cardiovascular palliative care models to improve patient-centered goal-concordant care for this underserved patient population.


Assuntos
Cardiopatias Congênitas , Insuficiência Cardíaca , Doença Arterial Periférica , Humanos , Adulto , Cuidados Paliativos , Qualidade de Vida
7.
Circulation ; 147(11): e657-e673, 2023 03 14.
Artigo em Inglês | MEDLINE | ID: mdl-36780370

RESUMO

The pregnancy-related mortality rate in the United States is excessively high. The American Heart Association is dedicated to fighting heart disease and recognizes that cardiovascular disease, preexisting or acquired during pregnancy, is the leading cause of maternal mortality in the United States. Comprehensive scientific statements from cardiology and obstetrics experts guide the treatment of cardio-obstetric patients before, during, and after pregnancy. This scientific statement aims to highlight the role of specialized cardio-obstetric anesthesiology care, presenting a systematic approach to the care of these patients from the anesthesiology perspective. The anesthesiologist is a critical part of the pregnancy heart team as the perioperative physician who is trained to prevent or promptly recognize and treat patients with peripartum cardiovascular decompensation. Maternal morbidity is attenuated with expert anesthesiology peripartum care, which includes the management of neuraxial anesthesia, inotrope and vasopressor support, transthoracic echocardiography, optimization of delivery location, and consideration of advanced critical care and mechanical support when needed. Standardizing the anesthesiology approach to patients with high peripartum cardiovascular risk and ensuring that cardio-obstetrics patients have access to the appropriate care team, facilities, and advanced cardiovascular therapies will contribute to improving peripartum morbidity and mortality.


Assuntos
Anestésicos , Cardiologia , Doenças Cardiovasculares , Cardiopatias , Gravidez , Feminino , Humanos , Estados Unidos , Doenças Cardiovasculares/diagnóstico , Doenças Cardiovasculares/terapia , American Heart Association , Cardiopatias/terapia
8.
Circulation ; 148(9): e9-e119, 2023 08 29.
Artigo em Inglês | MEDLINE | ID: mdl-37471501

RESUMO

AIM: The "2023 AHA/ACC/ACCP/ASPC/NLA/PCNA Guideline for the Management of Patients With Chronic Coronary Disease" provides an update to and consolidates new evidence since the "2012 ACCF/AHA/ACP/AATS/PCNA/SCAI/STS Guideline for the Diagnosis and Management of Patients With Stable Ischemic Heart Disease" and the corresponding "2014 ACC/AHA/AATS/PCNA/SCAI/STS Focused Update of the Guideline for the Diagnosis and Management of Patients With Stable Ischemic Heart Disease." METHODS: A comprehensive literature search was conducted from September 2021 to May 2022. Clinical studies, systematic reviews and meta-analyses, and other evidence conducted on human participants were identified that were published in English from MEDLINE (through PubMed), EMBASE, the Cochrane Library, Agency for Healthcare Research and Quality, and other selected databases relevant to this guideline. STRUCTURE: This guideline provides an evidenced-based and patient-centered approach to management of patients with chronic coronary disease, considering social determinants of health and incorporating the principles of shared decision-making and team-based care. Relevant topics include general approaches to treatment decisions, guideline-directed management and therapy to reduce symptoms and future cardiovascular events, decision-making pertaining to revascularization in patients with chronic coronary disease, recommendations for management in special populations, patient follow-up and monitoring, evidence gaps, and areas in need of future research. Where applicable, and based on availability of cost-effectiveness data, cost-value recommendations are also provided for clinicians. Many recommendations from previously published guidelines have been updated with new evidence, and new recommendations have been created when supported by published data.


Assuntos
Cardiologia , Doença das Coronárias , Isquemia Miocárdica , Humanos , American Heart Association , Isquemia Miocárdica/diagnóstico , Antígeno Nuclear de Célula em Proliferação , Estados Unidos
9.
Stroke ; 55(2): 494-505, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-38099439

RESUMO

Intracerebral hemorrhage is the most serious type of stroke, leading to high rates of severe disability and mortality. Hematoma expansion is an independent predictor of poor functional outcome and is a compelling target for intervention. For decades, randomized trials aimed at decreasing hematoma expansion through single interventions have failed to meet their primary outcomes of statistically significant improvement in neurological outcomes. A wide range of evidence suggests that ultra-early bundled care, with multiple simultaneous interventions in the acute phase, offers the best hope of limiting hematoma expansion and improving functional recovery. Patients with intracerebral hemorrhage who fail to receive early aggressive care have worse outcomes, suggesting that an important treatment opportunity exists. This consensus statement puts forth a call to action to establish a protocol for Code ICH, similar to current strategies used for the management of acute ischemic stroke, through which early intervention, bundled care, and time-based metrics have substantially improved neurological outcomes. Based on current evidence, we advocate for the widespread adoption of an early bundle of care for patients with intracerebral hemorrhage focused on time-based metrics for blood pressure control and emergency reversal of anticoagulation, with the goal of optimizing the benefit of these already widely used interventions. We hope Code ICH will endure as a structural platform for continued innovation, standardization of best practices, and ongoing quality improvement for years to come.


Assuntos
AVC Isquêmico , Acidente Vascular Cerebral , Humanos , Acidente Vascular Cerebral/terapia , Hemorragia Cerebral , Pressão Sanguínea/fisiologia , Hematoma
10.
Am J Med Genet C Semin Med Genet ; 196(1): e32067, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37906086

RESUMO

The Pediatric Integrated Care Survey (PICS) is validated for use to measure the caregiver reported experience of integration and efficiency of all the aspects of their child. We began using the PICS survey to track changes in the patient experience, including throughout changing models of care during the COVID-19 pandemic. From February 2019 to June 2023, 62 responses from caregivers of individuals seen in the Massachusetts General Hospital Down Syndrome Program completed the PICS. Responses were scored using the standardized PICS user manual, and descriptive statistics were completed. The raw scores and composite monthly scores of the PICs were graphed in statistical process control charts. The average PICS score was 12.0 (range 2-19) out of a maximum score of 19; no shifts or trends were seen. Items with lowest scores indicated greatest opportunities for improvement related to: advice from other care team members, impact of decisions on the whole family, things causing stress or making it hard because of child's health, and offering opportunities to connect with other families. Studying the PICS in a specialty clinic for Down syndrome for the first time has established a baseline for future quality improvement work and interventions to increase care integration.


Assuntos
Prestação Integrada de Cuidados de Saúde , Síndrome de Down , Criança , Humanos , Síndrome de Down/epidemiologia , Síndrome de Down/terapia , Pandemias , Inquéritos e Questionários , Cuidadores
11.
Oncologist ; 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39045648

RESUMO

Clinical ethics consultation services (CECS) can be particularly complex in oncology, and widespread misconceptions exist about their nature. As a result, visibility and accessibility of information regarding CECS is critical. We investigated the availability and content of information regarding CECS on websites of NCI-designated comprehensive cancer centers and cancer centers (CCs). Each website was reviewed for information on CECS and reviewed for benchmarks partially derived from the American Society of Bioethics and Humanities recommendations for CECS. Our analysis revealed that of 70 NCI-designated center websites, 38 had information on CECS, and 17 were found directly on these sites. When CECS information was available, most websites provided a mission statement (71%) and an explanation of what constitutes an ethics consult (74%). Few provided a description of the consult process (45%) or service membership (39%). Our findings reveal a significant gap in CECS visibility on the websites of NCI-designated CCs.

12.
J Viral Hepat ; 31(8): 490-499, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38798022

RESUMO

Chronic hepatitis B infection (CHB) affects 300 million people worldwide and is being targeted by the United Nations 2030 Sustainable Development Goals (SDGs) and the World Health Organisation (WHO), working towards elimination of hepatitis B virus (HBV) as a public health threat. In this piece, we explore the evidence and potential impact of peer support to enhance and promote interventions for people living with CHB. Peer support workers (PSWs) are those with lived experience of an infection, condition or situation who work to provide support for others, aiming to improve education, prevention, treatment and other clinical interventions and to reduce the physical, psychological and social impacts of disease. Peer support has been shown to be a valuable tool for improving health outcomes for people living with human immunodeficiency virus (HIV) and hepatitis C virus (HCV), but to date has not been widely available for communities affected by HBV. HBV disproportionately affects vulnerable and marginalised populations, who could benefit from PSWs to help them navigate complicated systems and provide advocacy, tackle stigma, improve education and representation, and optimise access to treatment and continuity of care. The scale up of peer support must provide structured and supportive career pathways for PSWs, account for social and cultural needs of different communities, adapt to differing healthcare systems and provide flexibility in approaches to care. Investment in peer support for people living with CHB could increase diagnosis, improve retention in care, and support design and roll out of interventions that can contribute to global elimination goals.


Assuntos
Hepatite B Crônica , Grupo Associado , Apoio Social , Humanos , Hepatite B Crônica/terapia , Hepatite B Crônica/psicologia
13.
Artigo em Inglês | MEDLINE | ID: mdl-38894503

RESUMO

INTRODUCTION: We aimed to study whether KardiaMobile 6L 30-second capture technology could shorten ECG collection time compared to standard 12L ECG without compromising data usability. METHODS: A single-center, non-randomized trial was performed on patients presenting for follow-up visits to the electrophysiology (EP) clinic. Providers in the KardiaMobile 6L group were allowed to request a standard 12L if the 6L was deemed insufficient for clinical care. Room utilization times, defined as the time from medical assistant room entry to exit, were compared for each group. RESULTS: There were 100 patients in the study, with 50 in each arm. Average room utilization time for the 12L group and 6L groups were 10.33 ± 2.2 and 7.27 ± 1.93 min, respectively (p < .001). In 8 (16%) visits for the 6L group, an additional 12L was requested. CONCLUSION: For EP follow-up visits, clinic utilization time was significantly reduced with the KardiaMobile 6L compared to the 12L ECG with infrequent need for an additional 12L.

14.
Sex Transm Infect ; 2024 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-38871452

RESUMO

OBJECTIVES: To quantify the amount of unnecessary antibiotics, in particular ceftriaxone, given to men who have sex with men (MSM) with anogenital symptoms as part of presumptive management in an urban sexual health clinic and examine factors associated with unnecessary ceftriaxone. METHODS: This is a retrospective cross-sectional analysis of electronic records from all visits involving MSM reporting symptoms of bacterial sexually transmitted infection (STI) and who received presumptive antibiotics at Sydney Sexual Health Centre. The following variables were extracted: demographic and sexual behaviour data, presenting symptoms, prior STI diagnoses, use of anoscopy, use of point-of-care microscopy, prescriptions of antibiotics and subsequent nucleic acid amplification testing (NAAT) results for chlamydia and gonorrhoea in all anatomical sites (urethra, pharynx and rectum). We defined unnecessary antibiotic as an agent prescribed to treat an STI organism that was subsequently not detected. RESULTS: Among 1061 visits in this analysis, 41.8% yielded negative NAAT results for both chlamydia and gonorrhoea in all anatomical sites. There were 44.3% of visits which had positive gonorrhoea NAAT result in at least one anatomical site. There were 187 courses of ceftriaxone prescribed in patients who tested negative for gonorrhoea in all anatomical sites and therefore were unnecessary. Unnecessary ceftriaxone prescribing occurred in 50.2% of visits with anorectal symptoms, 19.6% of scrotal symptoms and 7.3% of urethral symptoms. Microscopy was associated with significantly less unnecessary ceftriaxone in urethral but not anorectal or scrotal presentations. In multivariable analysis, the following factors were associated with a higher likelihood of unnecessary ceftriaxone use: anorectal symptoms, scrotal symptoms, gonorrhoea in the preceding year, contact of a bacterial STI and living with HIV. CONCLUSIONS: This study highlights the significant amount of unnecessary ceftriaxone used for STI symptoms in MSM. A new pathway incorporating rapid point-of-care molecular testing in symptomatic patients may improve the precision of antibiotic prescribing and reduce unnecessary use.

15.
BMC Cancer ; 24(1): 822, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38987731

RESUMO

BACKGROUND: The PAROLE-Onco program was introduced in the province of Quebec, Canada in 2019. It integrates accompanying patients (APs), i.e., people who have been affected by cancer, into the clinical team as full members. These APs use their experiential knowledge with people undergoing treatment and with clinical teams. The aim of this paper is to evaluate, within the framework of two university medical centers, the perceptions of breast cancer patients who receive support from APs, particularly in terms of their active involvement in their care trajectory. METHODS: A qualitative study based on semi-structured interviews with accompanied patients was performed. Fourteen individual interviews were conducted between July and September 2021 with women presenting different profiles in terms of age, education, professional status, type of treatment, family situation, and clinical background. The data were analyzed using thematic analysis, focusing on patients' perceptions of APs' contributions and suggested improvements for accessing AP support. RESULTS: Three themes emerged from the semi-structured interviews: communication modalities used to connect patients with their APs, the characteristics of the support provided by APs, and the perceived effects of this support on the patients. Patients expressed a preference for telephone communication, highlighting its convenience and accessibility. The support provided by APs included emotional and informational support, neutrality, and adaptability. This relationship improved patient communication, reduced anxiety, helped regain control, and enhanced overall quality of life. The results emphasized the added value of APs in complementing the support offered by healthcare professionals. Patients noted the critical role of APs in helping them navigate the healthcare system, better understand their treatment processes, and manage their emotions. The ability of APs to provide practical advice and emotional reassurance was particularly valued. Overall, the findings underscored the significant impact of AP support on patients' experiences and highlighted areas for enhancing this service. CONCLUSION: This study highlights, during the care trajectory of people affected by breast cancer, APs' contribution to patients' emotional well-being because they improve, in particular, the management of emotions and communication with health professionals.


In 2019, we initiated the PAROLE-Onco program in Quebec, Canada, to support cancer patients by integrating Accompanying Patients (APs) into the medical team. These individuals, who have personally experienced cancer, join as full team members, sharing their insights with both patients and medical staff. Our study delved into the perceptions of breast cancer patients at two university hospitals regarding APs' involvement in their care trajectory. Through interviews with 14 women of diverse backgrounds and cancer experiences, we found that APs were instrumental in enhancing communication with doctors, facilitating the expression of challenging emotions, and aiding in treatment decisions. Patients valued the inclusion of APs in their care team and expressed gratitude for their support. Nonetheless, some encountered difficulties in reaching out to APs due to a lack of awareness or challenges involved in connecting. Overall, our research underscores the positive impact of involving APs in the care of breast cancer patients, and of enhancing emotional well-being and communication throughout the treatment journey.


Assuntos
Neoplasias da Mama , Pesquisa Qualitativa , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Pessoa de Meia-Idade , Adulto , Idoso , Comunicação , Quebeque , Qualidade de Vida
16.
Am J Obstet Gynecol ; 230(6): 657.e1-657.e17, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38365096

RESUMO

BACKGROUND: In July 2023, the US Food and Drug Administration approved the first nonprescription oral contraceptive, a progestin-only pill, in the United States. Transgender, nonbinary, and gender-expansive people assigned female or intersex at birth face substantial contraceptive access barriers and may benefit from over-the-counter oral contraceptive access. However, no previous research has explored their perspectives on this topic. OBJECTIVE: This study aimed to measure interest in over-the-counter progestin-only pill use among transgender, nonbinary, and gender-expansive individuals assigned female or intersex at birth. STUDY DESIGN: We conducted an online, cross-sectional survey from May to September 2019 (before the US Food and Drug Administration approval of a progestin-only pill) among a convenience sample of transgender, nonbinary, and gender-expansive people assigned female or intersex at birth who were aged 18 to 49 years from across the United States. Using descriptive statistics and logistic regression analyses, we estimated interest in over-the-counter progestin-only pill use (our outcome) overall and by sociodemographic and reproductive health characteristics (our exposures). We evaluated separate logistic regression models for each exposure. In each model, we included the minimally sufficient adjustment set to control for confounding pathways between the exposure and outcome. For the model for age, we ran a univariable logistic regression model; for all other exposures, we ran multivariable logistic regression models. RESULTS: Among 1415 participants in our sample (median age, 26 years), 45.0% (636/1415; 95% confidence interval, 42.3-47.6) were interested in over-the-counter progestin-only pill use. In separate logistic regression models for each exposure, there were higher odds of interest among participants who were aged 18 to 24 years (odds ratio, 1.67; 95% confidence interval, 1.33-2.10; vs those aged 25-34 years), those who were uninsured (adjusted odds ratio, 1.91; 95% confidence interval, 1.24-2.93; vs insured), those who currently used oral contraceptives (adjusted odds ratio, 1.69; 95% confidence interval, 1.17-2.44; vs non-users), had ≤high school degree (adjusted odds ratio, 3.02; 95% confidence interval, 1.94-4.71; vs college degree), had ever used progestin-only pills (adjusted odds ratio, 2.32; 95% confidence interval, 1.70-3.17; vs never users), and who wanted to avoid estrogen generally (adjusted odds ratio, 1.32; 95% confidence interval, 1.04-1.67; vs those who did not want to avoid estrogen generally) or specifically because they viewed it as a feminizing hormone (adjusted odds ratio, 1.72; 95% confidence interval, 1.36-2.19; vs those who did not want to avoid estrogen because they viewed it as a feminizing hormone). There were lower odds of interest among participants with a graduate or professional degree (adjusted odds ratio, 0.70; 95% confidence interval, 0.51-0.96; vs college degree), those who were sterilized (adjusted odds ratio, 0.31; 95% confidence interval, 0.12-0.79; vs not sterilized), and those who had ever used testosterone for gender affirmation (adjusted odds ratio, 0.72; 95% confidence interval, 0.57-0.90; vs never users). CONCLUSION: Transgender, nonbinary, and gender-expansive individuals were interested in over-the-counter progestin-only pill use, and its availability has the potential to improve contraceptive access for this population.


Assuntos
Medicamentos sem Prescrição , Progestinas , Pessoas Transgênero , Humanos , Feminino , Adulto , Estados Unidos , Masculino , Pessoas Transgênero/estatística & dados numéricos , Estudos Transversais , Adulto Jovem , Adolescente , Pessoa de Meia-Idade , Progestinas/administração & dosagem , Modelos Logísticos
17.
Eur Radiol ; 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38849662

RESUMO

Ovarian masses encompass various conditions, from benign to highly malignant, and imaging plays a vital role in their diagnosis and management. Ultrasound, particularly transvaginal ultrasound, is the foremost diagnostic method for adnexal masses. Magnetic Resonance Imaging (MRI) is advised for more precise characterisation if ultrasound results are inconclusive. The ovarian-adnexal reporting and data system (O-RADS) MRI lexicon and scoring system provides a standardised method for describing, assessing, and categorising the risk of each ovarian mass. Determining a histological differential diagnosis of the mass may influence treatment decision-making and treatment planning. When ultrasound or MRI suggests the possibility of cancer, computed tomography (CT) is the preferred imaging technique for staging. It is essential to outline the extent of the malignancy, guide treatment decisions, and evaluate the feasibility of cytoreductive surgery. This article provides a comprehensive overview of the key imaging processes in evaluating and managing ovarian masses, from initial diagnosis to initial treatment. It also includes pertinent recommendations for properly performing and interpreting various imaging modalities. KEY POINTS: MRI is the modality of choice for indeterminate ovarian masses at ultrasound, and the O-RADS MRI lexicon and score enable unequivocal communication with clinicians. CT is the recommended modality for suspected ovarian masses to tailor treatment and surgery. Multidisciplinary meetings integrate information and help decide the most appropriate treatment for each patient.

18.
Eur J Neurol ; 31(6): e16257, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38491735

RESUMO

Angiographically negative subarachnoid hemorrhage (anSAH) has traditionally been considered a benign condition, mainly because of favorable outcomes in the acute stage in comparison to the often negative acute outcomes of aneurysmal subarachnoid hemorrhage. However, a growing body of research in recent years shows that anSAH often leads to cognitive impairments, emotional distress, and difficulties in resuming work or other daily life activities. Therefore, in this position paper, we call for a change in neurological care and a shift in patient communication, emphasizing the importance of addressing patient needs and fostering realistic expectations rather than solely focusing on the benign nature of the condition.


Assuntos
Hemorragia Subaracnóidea , Humanos , Hemorragia Subaracnóidea/terapia , Hemorragia Subaracnóidea/psicologia , Hemorragia Subaracnóidea/complicações , Hemorragia Subaracnóidea/diagnóstico por imagem , Comunicação , Angiografia Cerebral , Otimismo , Relações Médico-Paciente
19.
Eur J Neurol ; 31(7): e16280, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38523419

RESUMO

BACKGROUND: Regular and consistent disease assessment could provide a clearer picture of burden in generalised myasthenia gravis (gMG) and improve patient care; however, the use of assessment tools in practice lacks standardisation. This modified Delphi approach was taken to review current evidence on assessment tool use in gMG and develop expert-derived consensus recommendations for good practice. METHODS: A European expert panel of 15 experienced gMG neurologists contributed to development of this consensus, four of whom formed a lead Sub-committee. The PICO (Population, Intervention, Control, Outcomes) framework was used to define six clinical questions on gMG assessment tools, a systematic literature review was conducted, and evidence-based statements were developed. According to a modified Delphi voting process, consensus was reached when ≥70% of the experts rated agreement with a statement as ≥8 on a scale of 1-10. RESULTS: Eighteen expert- and evidence-based consensus statements based on six themes were developed. Key recommendations include: consistent use of the Myasthenia Gravis Activities of Daily Living score (MG-ADL) across clinical settings, followed by a simple question (e.g., Patient Acceptable Symptom State [PASS]) or scale to determine patient satisfaction in clinical practice; use of a Quantitative Myasthenia Gravis [QMG] or quality of life [QoL] assessment when the MG-ADL indicates disease worsening; and consideration of symptom state to determine the timing and frequency of recommended assessments. Expert panel consensus was reached on all 18 statements after two voting rounds. CONCLUSIONS: This process provided evidence- and expert consensus-based recommendations for the use of objective and subjective assessment tools across gMG research and care to improve management and outcomes for patients.


Assuntos
Consenso , Técnica Delphi , Miastenia Gravis , Miastenia Gravis/diagnóstico , Miastenia Gravis/terapia , Humanos , Atividades Cotidianas , Qualidade de Vida
20.
Ann Fam Med ; 22(1): 5-11, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38253492

RESUMO

PURPOSE: We conducted a study to understand primary care physician (PCP) and urologist perspectives on determinants of active surveillance care delivery for men with low-risk prostate cancer. METHODS: We conducted in-depth, semistructured, virtual interviews with a purposive sample of 19 PCPs and 15 urologists between June 2020 and March 2021. We used the behavioral theory-informed Theoretical Domains Framework to understand barriers to and facilitators of active surveillance care delivery. Interviews were recorded, transcribed, and deductively coded into framework domains and constructs by 3 independent coders. Participant recruitment continued until data saturation by group. RESULTS: Our study included 19 PCPs (9 female; 4 in community practices, 15 in academic medical centers) and 15 urologists (3 female; 5 in private practice, 3 in academic medical centers). The most commonly reported Theoretical Domains Framework domains affecting active surveillance care were (1) knowledge and (2) environmental context and resources. Although urologists were knowledgeable about active surveillance, PCPs mentioned limitations in their understanding of active surveillance (eg, what follow-up entails). Both groups noted the importance of an informed patient, especially how a patient's understanding of active surveillance facilitates their receipt of recommended follow-up. Physicians viewed patient loss to follow-up as a barrier, but identified a favorable organizational culture/climate (eg, good communication between physicians) as a facilitator. CONCLUSIONS: With patients increasingly involving their PCPs in their cancer care, our study presents factors both PCPs and urologists perceive (or identify) as affecting optimal active surveillance care delivery. We provide insights that can help inform multilevel supportive interventions for patients, physicians, and organizations to ensure the success of active surveillance as a management strategy for low-risk prostate cancer.


Assuntos
Médicos de Atenção Primária , Neoplasias da Próstata , Masculino , Humanos , Urologistas , Conduta Expectante , Neoplasias da Próstata/diagnóstico , Neoplasias da Próstata/terapia , Centros Médicos Acadêmicos
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA