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1.
Circulation ; 149(20): e1176-e1188, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38602110

RESUMO

Patient-centered care is gaining widespread acceptance by the medical and lay communities and is increasingly recognized as a goal of high-quality health care delivery. Patient-centered care is based on ethical principles and aims at establishing a partnership between the health care team and patient, family member, or both in the care planning and decision-making process. Patient-centered care involves providing respectful care by tailoring management decisions to patients' beliefs, preferences, and values. A collaborative care approach can enhance patient engagement, foster shared decision-making that aligns with patient values and goals, promote more personalized and effective cardiovascular care, and potentially improve patient outcomes. The objective of this scientific statement is to inform health care professionals and stakeholders about the role and impact of patient-centered care in adult cardiovascular medicine. This scientific statement describes the background and rationale for patient-centered care in cardiovascular medicine, provides insight into patient-oriented medication management and patient-reported outcome measures, highlights opportunities and strategies to overcome challenges in patient-centered care, and outlines knowledge gaps and future directions.


Assuntos
American Heart Association , Doenças Cardiovasculares , Assistência Centrada no Paciente , Humanos , Assistência Centrada no Paciente/normas , Estados Unidos , Doenças Cardiovasculares/terapia , Adulto , Participação do Paciente , Cardiologia/normas
2.
Proc Natl Acad Sci U S A ; 119(13): e2114737119, 2022 03 29.
Artigo em Inglês | MEDLINE | ID: mdl-35316132

RESUMO

SignificanceUsing language to "distance" ourselves from distressing situations (i.e., by talking less about ourselves and the present moment) can help us manage emotions. Here, we translate this basic research to discover that such "linguistic distancing" is a replicable measure of mental health in a large set of therapy transcripts (N = 6,229). Additionally, clustering techniques showed that language alone could identify participants who differed on both symptom severity and treatment outcomes. These findings lay the foundation for 1) tools that can rapidly identify people in need of psychological services based on language alone and 2) linguistic interventions that can improve mental health.


Assuntos
Distância Psicológica , Psicoterapia , Emoções , Humanos , Linguística/métodos , Psicoterapia/métodos , Resultado do Tratamento
3.
Eur Heart J ; 45(17): 1505-1511, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38551446

RESUMO

The sex disparity in outcomes of patients with cardiovascular disease is well-described and has persisted across recent decades. While there have been several proposed mechanisms to explain this disparity, there are limited data on female patient-physician sex concordance and its association with outcomes. The authors review the existing literature on the relationship between patient-physician sex concordance and clinical outcomes in patients with cardiovascular disease, the evidence of a benefit in clinical outcomes with female patient-physician sex concordance, and the possible drivers of such a benefit and highlight directions for future study.


Assuntos
Doenças Cardiovasculares , Relações Médico-Paciente , Humanos , Feminino , Masculino , Fatores Sexuais , Resultado do Tratamento
4.
Am J Transplant ; 24(2S1): S394-S456, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38431363

RESUMO

For the first time since the COVID-19 pandemic, the annual number of lung transplants performed in the United States increased. The year 2022, encompassed in this report, marks the last full calendar year where the Lung Allocation Score was used for ranking transplant candidates based on their estimated transplant benefit and donor lung allocation in the United States. In March 2023, a major change in transplant allocation policy occurred with the implementation of the Composite Allocation Score. Transplant rates have increased over the past decade, although there is variability among age, diagnosis, racial and ethnic, and blood groups. Over half of candidates received a lung transplant within 3 months of placement on the waiting list, with nearly 75% of candidates accessing transplant by 1 year. Pretransplant mortality rates remained stable, with approximately 13% of lung transplant candidates dying or being removed from the waiting list within a year of listing. Posttransplant survival remained stable; however, variability exists by age, diagnosis, and racial and ethnic groups.


Assuntos
Transplante de Pulmão , Obtenção de Tecidos e Órgãos , Humanos , Estados Unidos/epidemiologia , Pandemias , Resultado do Tratamento , Doadores de Tecidos , Listas de Espera , Pulmão , Sobrevivência de Enxerto
5.
Artigo em Inglês | MEDLINE | ID: mdl-38615728

RESUMO

BACKGROUND & AIMS: Celiac disease (CD) mass screening remains controversial in part because of a paucity of data to support its benefit. The Autoimmunity Screening for Kids study is a mass screening study for pediatric CD and type 1 diabetes in Colorado. METHODS: This study prospectively follows up children ages 1 to 17 years who screened positive for tissue transglutaminase IgA autoantibodies in the Autoimmunity Screening for Kids study subsequently referred for diagnostic evaluation. Children diagnosed with CD by biopsy or serologic criteria were included in this study. Evaluation at baseline and 12 month follow-up evaluation included demographics, laboratory studies, symptoms, health-related quality of life, anxiety/depression, and gluten-free diet adherence. Paired Student t test, chi-square, and Wilcoxon sign rank tests compared baseline and follow-up data. For symptom scores, odds of improvement were assessed. RESULTS: Of the 52 children with CD enrolled, 42 children completed 12-month follow-up evaluation. On the symptom questionnaire completed at diagnostic evaluation, 38 of 42 children reported 1 or more symptoms. CD mean symptom severity and frequency scores improved from baseline to follow-up evaluation (P < .001). Reported health-related quality of life scores improved among caregivers (P = .002). There was no significant change in reported anxiety or depression. Iron deficiency without anemia was common at baseline (21 of 24 children; 87.5%) and normalized at follow-up evaluation (11 of 21 children; 52.3%). Twenty-six of 28 families reported good or excellent gluten-free diet adherence. CONCLUSIONS: This novel study of children with CD identified through a mass screening program demonstrated improvement in symptoms, quality of life, and iron deficiency after 1 year follow-up evaluation. This demonstrates that there may be benefit to CD mass screening.

6.
Clin Gastroenterol Hepatol ; 22(3): 621-629.e2, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37689253

RESUMO

BACKGROUND & AIMS: Current approaches to managing digestive disease in older adults fail to consider the psychosocial factors contributing to a person's health. We aimed to compare the frequency of loneliness, depression, and social isolation in older adults with and without a digestive disease and to quantify their association with poor health. METHODS: We conducted an analysis of Health and Retirement Study data from 2008 to 2016, a nationally representative panel study of participants 50 years and older and their spouses. Bivariate analyses examined differences in loneliness, depression, and social isolation among patients with and without a digestive disease. We also examined the relationship between these factors and health. RESULTS: We identified 3979 (56.0%) respondents with and 3131 (44.0%) without a digestive disease. Overall, 60.4% and 55.6% of respondents with and without a digestive disease reported loneliness (P < .001), 12.7% and 7.5% reported severe depression (P < .001), and 8.9% and 8.7% reported social isolation (P = NS), respectively. After adjusting for covariates, those with a digestive disease were more likely to report poor or fair health than those without a digestive disease (odds ratio [OR], 1.25; 95% CI, 1.11-1.41). Among patients with a digestive disease, loneliness (OR, 1.43; 95% CI, 1.22-1.69) and moderate and severe depression (OR, 2.93; 95% CI, 2.48-3.47; and OR, 8.96; 95% CI, 6.91-11.63, respectively) were associated with greater odds of poor or fair health. CONCLUSIONS: Older adults with a digestive disease were more likely than those without a digestive disease to endorse loneliness and moderate to severe depression and these conditions are associated with poor or fair health. Gastroenterologists should feel empowered to screen patients for depression and loneliness symptoms and establish care pathways for mental health treatment.


Assuntos
Transtorno Depressivo , Solidão , Humanos , Idoso , Solidão/psicologia , Depressão/epidemiologia , Isolamento Social/psicologia , Nível de Saúde
7.
Mol Genet Metab ; 141(2): 108121, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38184428

RESUMO

BACKGROUND: The Phase 3 COMET trial (NCT02782741) comparing avalglucosidase alfa and alglucosidase alfa included health-related quality of life (HRQoL) assessments in treatment-naïve patients with late-onset Pompe disease (LOPD). Here, we further characterize results from disease-specific and general patient-reported outcome (PRO) measures. METHODS: Adults who participated in the COMET trial receiving avalglucosidase alfa or alglucosidase alfa (both 20 mg/kg biweekly) during the 49-week double-blind treatment period were included in the analysis. Proportions of patients exceeding meaningful change thresholds at Week 49 were compared post hoc between treatment groups. PROs and their meaningful change thresholds included: Pompe Disease Severity Scale (PDSS; decrease 1.0-1.5 points), Pompe Disease Impact Scale (PDIS; decrease 1.0-1.5 points), Rasch-built Pompe-specific Activity Scale (R-PAct; change from unable to able to complete activity), 12-item Short Form Health Survey (SF-12; physical component summary [PCS] score: increase ≥6 points, mental component summary [MCS] score: increase ≥7 points), EuroQol 5 Dimension 5 Level (EQ-5D-5L; improvement of ≥1 category), and Patient Global Impression of Change (PGIC; any improvement). RESULTS: The analysis included 99 adult patients (avalglucosidase alfa n = 50; alglucosidase alfa n = 49). Patients who received avalglucosidase alfa had significantly greater odds of achieving a meaningful change versus alglucosidase alfa for the PDSS Shortness of Breath (OR [95% CI] 11.79 [2.24; 62.18]), Fatigue/Pain (6.24 [1.20; 32.54]), Morning Headache (13.98 [1.71; 114.18]), and Overall Fatigue (5.88 [1.37; 25.11]) domains, and were significantly more likely to meet meaningful change thresholds across multiple PDSS domains (all nominal p < 0.05). A numerically greater proportion of patients in the avalglucosidase alfa group were able to complete selected activities of the R-PAct compared with the alglucosidase alfa group. Significantly greater proportions of patients who received avalglucosidase alfa achieved meaningful improvements for EQ-5D-5L usual activities dimension, EQ visual analog scale, and all four PGIC domains. The proportion of patients with improvements in SF-12 PCS and MCS was greater in the avalglucosidase alfa group versus alglucosidase alfa group, but was not significant (p > 0.05). CONCLUSIONS: These analyses show that avalglucosidase alfa improves multiple symptoms and aspects of daily functioning, including breathing and mobility. This supports the clinical relevance of the effects of avalglucosidase alfa on HRQoL for patients with LOPD.


Assuntos
Doença de Depósito de Glicogênio Tipo II , Adulto , Humanos , alfa-Glucosidases/uso terapêutico , Doença de Depósito de Glicogênio Tipo II/tratamento farmacológico , Qualidade de Vida , Resultado do Tratamento
8.
J Pediatr ; 264: 113740, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37717908

RESUMO

OBJECTIVE: To test whether a neonatal intensive care unit-based language curriculum for families with preterm infants enhances the language environment and postdischarge Bayley Scales of Infant and Toddler Development (BSID)-III language and cognitive scores. METHODS: A randomized controlled trial was conducted with infants born at ≤32 weeks assigned to a parent-driven language intervention or health-safety lessons (controls). Recordings of adult word counts (AWC), conversational turns, and child vocalizations were captured at 32, 34, and 36 weeks. Primary outcomes included 2-year BSID-III language and cognitive scores. RESULTS: We randomized 95 infants; 45 of the 48 intervention patients (94%) and 43 of the 47 controls (91%) with ≥2 recordings were analyzed. The intervention group had higher AWCs (rate ratio, 1.52; 95% CI, 1.05-2.19; P = .03) at 36 weeks, increased their AWCs between all recordings, and had lower rates of 2-year receptive language scores <7 (10% vs 38%; P < .02). The intervention was associated with 80% decreased odds of a language composite score of <85 (aOR, 0.20; 95% CI, 0.05-0.78; P = .02), and 90% decreased odds of a receptive score of <7 (0.10; 95% CI, 0.02-0.46; P = .003); there was no association found with cognitive scores. Increases in AWC and conversational turns between 32 and 36 weeks were independently associated with improved 2-year BSID-III language scores for both study groups. CONCLUSIONS: Short-term parent-driven language enrichment in the neonatal intensive care unit contributes to increased AWCs at 36 weeks and improved 2-year language scores. In adjusted analyses, increases in conversational turns and AWCs at 36 weeks were independently associated with improved language scores. This low-cost, easily implemented intervention can potentially help to mitigate speech delays among preterm infants. TRIAL REGISTRATION: Registered with www. CLINICALTRIALS: gov, NCT02528227.


Assuntos
Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Lactente , Adulto , Recém-Nascido , Humanos , Assistência ao Convalescente , Alta do Paciente , Pais , Desenvolvimento Infantil
9.
Rheumatology (Oxford) ; 63(2): 338-348, 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-37228028

RESUMO

OBJECTIVES: To determine the effect of antimalarial agents (AMA) and different doses and pharmaceutical forms of belimumab on preventing renal flares in patients with SLE treated for extra-renal disease. METHODS: We pooled data from the BLISS-52, BLISS-76, BLISS-SC and BLISS-Northeast Asia trials of belimumab (n = 3225), that included patients with active SLE yet no severe ongoing nephritis. Participants were allocated to receive intravenous belimumab 1 mg/kg, intravenous belimumab 10 mg/kg, subcutaneous belimumab 200 mg, or placebo in addition to standard therapy. We estimated hazards of renal flare development throughout the study follow-up (52-76 weeks) using Cox regression analysis. RESULTS: In total, 192 patients developed a renal flare after a median of 197 days. Compared with placebo, the risk of renal flares was lower among patients receiving intravenous belimumab 10 mg/kg (HR: 0.62; 95% CI: 0.41, 0.92; P = 0.018) and intravenous belimumab 1 mg/kg (HR: 0.42; 95% CI: 0.22, 0.79; P = 0.007), while no significant association was found for subcutaneous belimumab 200 mg. AMA use yielded a lower hazard of renal flares (HR: 0.66; 95% CI: 0.55, 0.78; P < 0.001). The protection conferred was enhanced when belimumab and AMA were co-administered; the lowest flare rate was observed for the combination intravenous belimumab 1 mg/kg and AMA (18.5 cases per 1000 person-years). CONCLUSIONS: The protection conferred from belimumab against renal flare development in patients treated for extra-renal SLE appears enhanced when belimumab was administered along with AMA. The prominent effect of low-dose belimumab warrants investigation of the efficacy of intermediate belimumab doses. CLINICAL TRIAL IDENTIFICATION: BLISS-52: NCT00424476; BLISS-76: NCT00410384; BLISS-SC: NCT01484496; BLISS-NEA: NCT01345253.


Assuntos
Anticorpos Monoclonais Humanizados , Antimaláricos , Lúpus Eritematoso Sistêmico , Humanos , Antimaláricos/uso terapêutico , Imunossupressores/efeitos adversos , Resultado do Tratamento , Lúpus Eritematoso Sistêmico/tratamento farmacológico , Lúpus Eritematoso Sistêmico/induzido quimicamente
10.
Ann Surg Oncol ; 31(2): 1373-1383, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37880515

RESUMO

BACKGROUND: We sought to determine whether the differences in short-term outcomes between patients undergoing robot-assisted radical prostatectomy (RARP) and those treated with open radical prostatectomy (ORP) differ by race and ethnicity. METHODS: This observational study used New York State Cancer Registry data linked to discharge records and included patients undergoing radical prostatectomy for localized prostate cancer during 2008-2018. We used logistic regression to examine the association between race and ethnicity (non-Hispanic White [NHW], non-Hispanic Black [NHB], Hispanic), surgical approach (RARP, ORP), and postoperative outcomes (major events, prolonged length of stay [pLOS], 30-day re-admission). We tested interaction between race and ethnicity and surgical approach on multiplicative and additive scales. RESULTS: The analytical cohort included 18,926 patients (NHW 14,215 [75.1%], NHB 3195 [16.9%], Hispanic 1516 [8.0%]). The average age was 60.4 years (standard deviation 7.1). NHB and Hispanic patients had lower utilization of RARP and higher risks of postoperative adverse events than NHW patients. NHW, NHB, and Hispanic patients all had reduced risks of adverse events when undergoing RARP versus ORP. The absolute reductions in the risks of major events and pLOS following RARP versus ORP were larger among NHB {relative excess risk due to interaction (RERI): major events -0.32 [95% confidence interval (CI) -0.71 to -0.03]; pLOS -0.63 [95% CI -0.98 to -0.35]) and Hispanic (RERI major events -0.27 [95% CI -0.77 to 0.09]; pLOS -0.93 [95% CI -1.46 to -0.51]) patients than among NHW patients. The interaction was absent on the multiplicative scale. CONCLUSIONS: RARP use has not penetrated and benefited all racial and ethnic groups equally. Increasing utilization of RARP among NHB and Hispanic patients may help reduce disparities in patient outcomes after radical prostatectomy.


Assuntos
Disparidades nos Níveis de Saúde , Neoplasias da Próstata , Procedimentos Cirúrgicos Robóticos , Humanos , Masculino , Pessoa de Meia-Idade , Etnicidade , Prostatectomia/efeitos adversos , Neoplasias da Próstata/etnologia , Neoplasias da Próstata/cirurgia , Procedimentos Cirúrgicos Robóticos/efeitos adversos , Idoso , Resultado do Tratamento
11.
Cardiovasc Diabetol ; 23(1): 72, 2024 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-38360604

RESUMO

BACKGROUND: The 2022 Canadian Cardiovascular Society (CCS) cardiorenal guideline provided clinical recommendations on sodium-glucose co-transport 2 inhibitors (SGLT2i) and glucagon-like peptide-1 receptor agonists (GLP-1RA) use. Since then, additional trials of relevance for SGLT2i have been published. This update re-evaluates the clinical recommendations for using SGLTi and their indirect comparison with existing evidence on GLP-1RA as compared to the standard of care to reduce cardiorenal morbidity and mortality. METHODS: We updated our existing search and screening of the literature from September 2021 to April 2023 for randomized controlled trials of SGLT2i and GLP-1RA with placebo control. We conducted risk of bias assessment, data extraction and updated our meta-analysis of studies with similar interventions and components. The certainty of the evidence was determined using GRADE. RESULTS: Evidence from three new trials and additional results from an updated existing trial on SGLT2i met our inclusion criteria after an updated search. Across all the included studies, the total sample size was 151,023 adults, with 90,943 in SGLT2i trials and 60,080 in GLP-1 RA trials. The mean age ranged from 59.9 to 68.4 years. Compared with standard care, the use of SGLT2i and GLP-1 RA showed significant reductions in the outcomes of cardiovascular (CV) mortality (14% & 13%), any-cause mortality (12% & 12%), major adverse CV events (MACE) (11% & 14%), heart failure (HF) hospitalization (30% & 9%), CV death or HF hospitalization (23% & 11%), and kidney composite outcome (32% & 22%). In participants with T2D, both classes demonstrated significant cardiorenal protection. But, only GLP-1RA showed a reduction in non-fatal stroke (16%) and only SGLT2i showed a reduction in HF hospitalization (30%) in this population of people living with T2D. CONCLUSIONS: This updated and comprehensive meta-analysis substantiates and strengthens the clinical recommendations of the CCS cardiorenal guidelines.


Assuntos
Doenças Cardiovasculares , Diabetes Mellitus Tipo 2 , Hipoglicemiantes , Inibidores do Transportador 2 de Sódio-Glicose , Adulto , Idoso , Humanos , Pessoa de Meia-Idade , Canadá , Doenças Cardiovasculares/tratamento farmacológico , Doenças Cardiovasculares/prevenção & controle , Diabetes Mellitus Tipo 2/tratamento farmacológico , Receptor do Peptídeo Semelhante ao Glucagon 1/agonistas , Insuficiência Cardíaca/prevenção & controle , Hipoglicemiantes/uso terapêutico , Inibidores do Transportador 2 de Sódio-Glicose/uso terapêutico
12.
Eur J Clin Invest ; 54(8): e14197, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38519859

RESUMO

BACKGROUND: The prevalence of cancer patients with concomitant cardiovascular (CV) disease is on the rise due to improved cancer prognoses. The aim of this study is to evaluate the long-term outcomes of cancer patients referred to a cardiology department (CD) via primary care using e-consultation. METHODS: We analysed data from cancer patients with prior referrals to a CD between 2010 and 2021 (n = 6889) and compared two care models: traditional in-person consultations and e-consultations. In e-consultation model, cardiologists reviewed electronic health records (e-consultation) to determine whether the demand could be addressed remotely or necessitated an in-person consultation. We used an interrupted time series regression model to assess outcomes during the two periods: (1) time to cardiology consultation, (2) rates of all-cause and CV related hospital admissions and (3) rates of all-cause and CV-related mortality within the first year after the initial consultation or e-consultation at the CD. RESULTS: Introduction of e-consultation for cancer patients referred to cardiology care led to a 51.8% reduction (95%CI: 51.7%-51.9%) in waiting times. Furthermore, we observed decreased 1-year incidence rates, with incidence rate ratios (iRRs) [IC95%] of .75 [.73-.77] for CV-related hospitalizations, .43 [.42-.44] for all-cause hospitalizations, and .87 [.86-.88] for all-cause mortality. CONCLUSIONS: Compared to traditional in-person consultations, an outpatient care program incorporating e-consultation for cancer patients significantly reduced waiting times for cardiology care and demonstrated safety, associated with lower rates of hospital admissions.


Assuntos
Doenças Cardiovasculares , Neoplasias , Atenção Primária à Saúde , Encaminhamento e Consulta , Humanos , Neoplasias/terapia , Neoplasias/epidemiologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Doenças Cardiovasculares/epidemiologia , Registros Eletrônicos de Saúde , Cardiologia , Análise de Séries Temporais Interrompida , Consulta Remota , Hospitalização/estatística & dados numéricos , Listas de Espera , Telemedicina , Serviço Hospitalar de Cardiologia/organização & administração
13.
Br J Psychiatry ; 224(4): 122-126, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38311574

RESUMO

BACKGROUND: Despite its significance, ensuring continuity of care demands substantial resources, which might not be readily accessible in many public healthcare systems. Studies indicate that continuity of care remains uncertain in numerous healthcare systems. AIMS: This study aimed to assess the effectiveness of a continuity-of-care model for patients with severe mental illness (SMI), providing seamless treatment from discharge from a closed ward to subsequent psychiatric, psychological and rehabilitation services. METHOD: Data from patients discharged before (1 January to 31 December 2018) and after (1 June 2021 to 31 May 2022) full implementation of the model were analysed and compared in terms of average duration of hospital stay, emergency department visits within 90 days of discharge, readmission rate within a year post-discharge and initiation of rehabilitation process. RESULTS: In the post-implementation period (n = 482), the average admission time significantly decreased from 30.51 ± 29.72 to 26.77 ± 27.89 days, compared with the pre-implementation period (n = 403) (P = 0.029). Emergency department visits within 90 days following discharge decreased from 38.70 to 26.35% of discharged patients (P < 0.001). The rate of readmission decreased from 50.9 to 44.0% (P = 0.041) for one readmission and from 28.3 to 22.0% (P = 0.032) for two readmissions in the year following discharge. Additionally, the proportion of patients entering formal rehabilitation increased from 7.94 to 12.03% (P = 0.044). CONCLUSIONS: This study highlights the effectiveness of a continuity-of-care model spearheaded by senior psychiatrists and involving paramedical personnel. These findings underscore the significant potential of the model to substantially enhance mental health services and outcomes. Moreover, they emphasise its relevance for patients, clinicians and policy makers.


Assuntos
Transtornos Mentais , Alta do Paciente , Humanos , Pacientes Ambulatoriais , Assistência ao Convalescente , Readmissão do Paciente , Transtornos Mentais/terapia
14.
Diabet Med ; 41(2): e15223, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37683837

RESUMO

AIMS: Describe the outcomes reported in research on health systems interventions for type 1 diabetes management in comparison to the outcomes proposed by a core outcome set (COS) for this condition, an essential list of outcomes that studies should measure. METHODS: Systematic search of studies published between 2010 and 2021 reporting health systems interventions directed to improve the management of type 1 diabetes using PubMed, EMBASE and CENTRAL. Information on the outcomes was extracted and classified according to a COS: self-management, level of clinical engagement, perceived control over diabetes, diabetes-related quality of life, diabetes burden, diabetes ketoacidosis, severe hypoglycemia, and glycated hemoglobin (HbA1C). RESULTS: 187 studies were included. Most of the studies included either children (n = 82/187) or adults (n = 82/187) living with type 1 diabetes. The most common outcome measured was HbA1C (n = 149/187), followed by self-management (n = 105/187). While the least measured ones were diabetes ketoacidosis (n = 15/187), and clinical engagement (n = 0/187). None of the studies measured all the outcomes recommended in the COS. Additionally, different tools were found to be used in measuring the same outcome. CONCLUSIONS: This study provides a description of what researchers are measuring when assessing health systems interventions to improve type 1 diabetes management. In contrast to a COS, it was found that there is a predominance of clinical-based outcomes over patient-reported outcome measures.


Assuntos
Diabetes Mellitus Tipo 1 , Cetoacidose Diabética , Hipoglicemia , Adulto , Criança , Humanos , Diabetes Mellitus Tipo 1/terapia , Qualidade de Vida , Hemoglobinas Glicadas , Cetoacidose Diabética/prevenção & controle
15.
Haemophilia ; 30 Suppl 3: 112-119, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38504408

RESUMO

INTRODUCTION: Advances in haemophilia treatment have resulted in a near-normal life expectancy, lower burden of bleeding and treatment, and improved quality of life in high-income countries. Bleeding rate is approaching zero and novel parameters should be evaluated to assess the efficacy of treatment not only from the clinical point of view by using new methodologies (e.g. joint health assessment), but also from the patient's perspective (e.g. pain, quality of life, treatment satisfaction). METHODS AND RESULTS: This approach should be aimed at combining objective clinical methodologies and patient-reported outcomes (PROs). However, some instruments used for assessing PROs are still suboptimal and not properly validated. Recent evidence suggests that these tools can take advantage from a more personalized designed approach and could be effectively improved and serve to facilitate the patient's self-evaluation. For other congenital bleeding disorders (BDs), a set of patient-relevant outcomes has been also defined that overlap substantially those of haemophilia, including bleeding, side effects and complications, and PROs, such as pain, physical functioning, impact on daily life including school and work and mental health. There is a growing focus on addressing women-specific outcomes in BDs, reflecting an increased awareness of the unique challenges faced by women in this context. However, the development of tailored tools is imperative to further advance the progress in managing women with BDs, ensuring more accurate monitoring and personalized care. CONCLUSIONS: How incorporating these outcome measures in the process of approval of novel treatments for these disorders by regulatory authorities remains to be established.


Assuntos
Hemofilia A , Qualidade de Vida , Humanos , Feminino , Hemofilia A/terapia , Avaliação de Resultados em Cuidados de Saúde , Resultado do Tratamento , Dor
16.
Haemophilia ; 30 Suppl 3: 86-94, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38523288

RESUMO

INTRODUCTION: Prophylaxis has become standard of care for all persons with haemophilia (PWH) with a severe phenotype. However, 'standard prophylaxis' with either factor or non-factor therapies (currently only emicizumab available) is prohibitively expensive for much of the world. We sought to address the question of 'How much prophylaxis is enough?' and 'Can it be individualized?' and specifically 'Can emicizumab be individualized?'. METHODS: We reviewed the literature on prophylaxis in haemophilia since its inception in the 1950s to the present, the development of more and less intense factor prophylaxis regimens and their outcomes and additionally the published outcomes of prophylaxis with low dose emicizumab. RESULTS: What these experiences collectively show is that low dose emicizumab does result in significant benefits to patients whilst being much less expensive than a "one size fits all" emicizumab prophylaxis approach. We also took note that some non-factor therapies still in development are individualized given that high doses of these can potentially put patients at risk. CONCLUSIONS: Prophylaxis is now clearly accepted as standard of care for PWH with a severe phenotype but now in a very short time a large assortment of different treatment options for prophylaxis have become/are becoming available and the haemophilia community will need to determine how to best use these recognizing that no 'one treatment fits all'.


Assuntos
Anticorpos Biespecíficos , Hemofilia A , Humanos , Hemofilia A/tratamento farmacológico , Hemofilia A/prevenção & controle , Anticorpos Biespecíficos/efeitos adversos , Fator VIII/uso terapêutico
17.
Epilepsia ; 65(6): 1548-1559, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38581402

RESUMO

OBJECTIVE: Despite the general safety and efficacy of epilepsy surgery, there is evidence that epilepsy surgery remains underutilized. Although there are an increasing number of studies reporting epilepsy surgery in older adults, there is no consensus on whether epilepsy surgery is efficacious or safe for this population. Our objective was to systematically assess the efficacy as well as safety of resective surgery in people aged 50 years or older with drug-resistant epilepsy. METHODS: We considered studies that examine the efficacy and safety of epilepsy surgery in adults aged 50 years and older. Study eligibility was limited to studies carried out after 1990, with a minimum of 10 participants and 6 months of follow-up. We searched the following databases for published studies: Ovid MEDLINE, Ovid Embase, Cumulative Index to Nursing and Allied Health Literature, PsychInfo, and Web of Science Conference Proceedings Citation Index - Science. The risk of bias of each included study was independently assessed by two reviewers using the MINORS (Methodological Index for Non-Randomized Studies) instrument. RESULTS: Eleven case series and 14 cohort studies met the criteria for inclusion, for a total of 1111 older adults who underwent epilepsy surgery along with 4111 adults younger than 50 years as control groups. The pooled cumulative incidence of older adults achieving seizure freedom after resective surgery was 70.1% (95% confidence interval [CI] = 65.3-74.7). There was no evident difference in the incidence of seizure freedom among older adults as compared to younger adults (risk ratio [RR] = 1.05, 95% CI = .97-1.14) in cohort studies. The pooled cumulative incidence of perioperative complications in older adults was 26.2% (95% CI = 21.3-31.7). Among them, 7.5% (95% CI = 5.8-9.5) experienced major complications. Older adults were significantly more at risk of experiencing any complication than younger adults (RR = 2.8, 95% CI = 1.5-5.4). SIGNIFICANCE: Despite important considerations, epilepsy surgery may be considered appropriate among carefully selected individuals older than 50 years.


Assuntos
Epilepsia , Humanos , Pessoa de Meia-Idade , Fatores Etários , Epilepsia Resistente a Medicamentos/cirurgia , Epilepsia/cirurgia , Procedimentos Neurocirúrgicos/métodos , Resultado do Tratamento
18.
Epilepsia ; 65(6): 1581-1588, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38498313

RESUMO

OBJECTIVE: New-onset refractory status epilepticus (NORSE) is a rare but severe clinical syndrome. Despite rigorous evaluation, the underlying cause is unknown in 30%-50% of patients and treatment strategies are largely empirical. The aim of this study was to describe clinical outcomes in a cohort of well-phenotyped, thoroughly investigated patients who survived the initial phase of cryptogenic NORSE managed in specialist centers. METHODS: Well-characterized cases of cryptogenic NORSE were identified through the EPIGEN and Critical Care EEG Monitoring Research Consortia (CCEMRC) during the period 2005-2019. Treating epileptologists reported on post-NORSE survival rates and sequelae in patients after discharge from hospital. Among survivors >6 months post-discharge, we report the rates and severity of active epilepsy, global disability, vocational, and global cognitive and mental health outcomes. We attempt to identify determinants of outcome. RESULTS: Among 48 patients who survived the acute phase of NORSE to the point of discharge from hospital, 9 had died at last follow-up, of whom 7 died within 6 months of discharge from the tertiary care center. The remaining 39 patients had high rates of active epilepsy as well as vocational, cognitive, and psychiatric comorbidities. The epilepsy was usually multifocal and typically drug resistant. Only a minority of patients had a good functional outcome. Therapeutic interventions were heterogenous during the acute phase of the illness. There was no clear relationship between the nature of treatment and clinical outcomes. SIGNIFICANCE: Among survivors of cryptogenic NORSE, longer-term outcomes in most patients were life altering and often catastrophic. Treatment remains empirical and variable. There is a pressing need to understand the etiology of cryptogenic NORSE and to develop tailored treatment strategies.


Assuntos
Epilepsia Resistente a Medicamentos , Estado Epiléptico , Sobreviventes , Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Adulto Jovem , Adolescente , Resultado do Tratamento , Eletroencefalografia , Criança
19.
Catheter Cardiovasc Interv ; 103(4): 523-531, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-38440914

RESUMO

BACKGROUND: Percutaneous coronary intervention (PCI) is considered less safe in patients with reduced ejection fraction (EF), an impression based on older data. Whether the safety and durability of contemporary PCI are different in patients with reduced EF compared with normal EF patients is unknown. METHODS: Patients from the BIOFLOW II, IV and V clinical trials were grouped as normal EF (≥50%) and reduced EF (30%-50%). Using multivariable logistic regression and cox proportional hazards regression, we determined relations of EF category with procedural safety (a composite of cardiac death, myocardial infarction, stroke and urgent coronary artery bypass grafting within 30 days of PCI) and target lesion failure (TLF; comprising cardiac death, target vessel myocardial infarction, target vessel revascularization within 1 year of PCI) respectively. In sensitivity analyses, we regrouped patients into EF < 45% and ≥55% and repeated the aforementioned analyses. RESULTS: In 1685 patients with normal EF (mean age 65 years; 27% women; mean EF 61%) and 259 with low EF (mean age 64 years; 17% women; mean EF 41%), 101 safety and 148 TLF events occurred. Compared with patients in the normal EF group, those with reduced EF had neither a statistically significant higher proportion of safety events, nor a higher multivariable-adjusted risk for such events. Similarly, patients with reduced EF and normal EF did not differ in terms of TLF event proportions or multivariable-adjusted risk for TLF. The results were similar in sensitivity analyses with EF groups redefined to create a 10% between-group EF separation. CONCLUSION: PCI safety and durability outcomes are similar in patients with mild-moderately reduced EF and normal EF.


Assuntos
Infarto do Miocárdio , Intervenção Coronária Percutânea , Disfunção Ventricular Esquerda , Humanos , Feminino , Idoso , Pessoa de Meia-Idade , Masculino , Intervenção Coronária Percutânea/efeitos adversos , Resultado do Tratamento , Infarto do Miocárdio/etiologia , Ponte de Artéria Coronária/efeitos adversos , Disfunção Ventricular Esquerda/etiologia , Morte
20.
Gynecol Oncol ; 180: 160-167, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38091776

RESUMO

OBJECTIVES: To identify endometrial cancer survivors' (ECS) barriers and facilitators for participation in lifestyle interventions to improve their dietary and exercise behaviors. Our secondary objective is to determine baseline information: physical activity level, quality of life (QoL), and impact of COVID-19 on exercise, diet, and mental health. METHODS: Obese, early-stage ECS participated in 2-part mixed-methods data collection; Part 1: survey gathering sample characteristics, QoL, exercise, and basic endometrial cancer- related knowledge. Part 2: virtual focus group or individual interviews using a brainwriting premortem protocol. Statistical analysis was performed using SAS (version 8.3). Qualitative data were analyzed using deductive thematic coding guided by the RE-AIM framework. RESULTS: Twenty percent (70/358) of ECS from a survivorship database and clinic recruitment completed the survey; 16 ECS provided qualitative feedback. Common barriers to intervention participation included time and resource costs, meeting frequency, and pessimism about weight loss maintenance. Facilitators included an opportunity to connect with other survivors and a focus on health rather than weight loss. Most ECS could not identify exercise guidelines (60%) and 83% were not meeting these guidelines. Higher BMI was correlated with a lower confidence in completing in moderate physical activity (p-value = 0.0206). Post-COVID-19 pandemic, physical activity, nutritional decisions, and/or mental health worsened for 67% of ECS. CONCLUSION: ECS are a disparate population, with worsening behaviors and mental health following the pandemic. The identified ECS-specific barriers and facilitators to behavioral intervention participation are being used to simultaneously improve the reach of and adherence to a lifestyle intervention aimed at improving their health and QoL.


Assuntos
COVID-19 , Neoplasias do Endométrio , Feminino , Humanos , Qualidade de Vida , Sobrevivência , Pandemias , Estilo de Vida , Neoplasias do Endométrio/terapia , Neoplasias do Endométrio/psicologia , Redução de Peso , COVID-19/epidemiologia , COVID-19/prevenção & controle
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