The association between black race and worse outcomes in operable breast cancer reported in previous studies has been attributed to a higher incidence of more aggressive triple-negative disease, ...disparities in care, and comorbidities. We evaluated associations between black race and outcomes, by tumor hormone receptor and HER2 expression, in patients who were treated with contemporary adjuvant therapy.
The effect of black race on disease-free and overall survival was evaluated using Cox proportional hazards models adjusted for multiple covariates in a clinical trial population that was treated with anthracycline- and taxane-containing chemotherapy. Categorical variables were compared using the Fisher exact test. All P values are two-sided.
Of 4817 eligible patients, 405 (8.4%) were black. Compared with nonblack patients, black patients had a higher rate of triple-negative disease (31.9% vs 17.2%; P < .001) and a higher body mass index (median: 31.7 vs 27.4 kg/m(2); P < .001). Black race was statistically significantly associated with worse disease-free survival (5-year disease-free survival, black vs nonblack: 76.7% vs 84.5%; hazard ratio of recurrence or death = 1.58, 95% confidence interval = 1.19 to 2.10, P = .0015) and overall survival (5-year overall survival, black vs nonblack: 87.6% vs 91.9%; hazard ratio of death = 1.49, 95% confidence interval = 1.05 to 2.12, P = .025) in patients with hormone receptor-positive HER2-negative disease but not in patients with triple-negative or HER2-positive disease. In a model that included black race, hormone receptor-positive HER2-negative disease vs other subtypes, and their interaction, the interaction term was statistically significant for disease-free survival (P = .027) but not for overall survival (P = .086).
Factors other than disparities in care or aggressive disease contribute to increased recurrence in black women with hormone receptor-positive breast cancer.
TANGO2 deficiency disorder (TDD), an autosomal recessive disease first reported in 2016, is characterized by neurodevelopmental delay, seizures, intermittent ataxia, hypothyroidism, and ...life-threatening metabolic and cardiac crises. The purpose of this study was to define the natural history of TDD.
Data were collected from an ongoing natural history study of patients with TDD enrolled between February 2019 and May 2022. Data were obtained through phone or video based parent interviews and medical record review.
Data were collected from 73 patients (59% male) from 57 unrelated families living in 16 different countries. The median age of participants at the time of data collection was 9.0 years (interquartile range = 5.3-15.9 years, range = fetal to 31.8 years). A total of 24 different TANGO2 alleles were observed. Patients showed normal development in early infancy, with progressive delay in developmental milestones thereafter. Symptoms included ataxia, dystonia, and speech difficulties, typically starting between the ages of 1 to 3 years. A total of 46/71 (65%) patients suffered metabolic crises, and of those, 30 (65%) developed cardiac crises. Metabolic crises were significantly decreased after the initiation of B-complex or multivitamin supplementation.
We provide the most comprehensive review of natural history of TDD and important observational data suggesting that B-complex or multivitamins may prevent metabolic crises.
Physical activity is an important health behaviour in reducing morbidity and mortality in individuals with chronic obstructive pulmonary disease (COPD). Accurate measurement of the characteristics of ...physical activity is essential to understanding the impact of COPD on physical activity. In a previous article, we reported on the cross-cultural adaptation of the Community Healthy Activities Model Program for Seniors (CHAMPS) questionnaire to produce a Canadian French version. The CHAMPS yields four summary scores: two caloric expenditure scores (moderate-intensity activities and all activities) and two frequency scores (moderate-intensity activities and all activities). The objective of this study was to evaluate test-retest reliability and convergent construct validity, in both English and French versions of the CHAMPS, in individuals with COPD. Test-retest reliability was assessed by administering the CHAMPS at two visits (2-3 weeks apart), to 19 English-speaking and 18 French-speaking participants. Validity was assessed in 56 English-speaking and 74 French-speaking participants, who completed the CHAMPS, Short Form- (SF-) 36, and St. George’s Respiratory Questionnaire (SGRQ) at a single visit. Results from reliability testing indicated that intraclass correlation coefficients (ICCs) generally met the threshold for good reliability (ICC > 0.6), with frequency scores showing greater stability than caloric expenditure scores. Validity testing yielded moderate correlations (r = 0.4-0.5) of the CHAMPS with the SF-36 domains and summary score capturing constructs of physical function, and with the SGRQ activity domain and total score. CHAMPS frequency scores for moderate-intensity activities correlated more strongly than other scores, with physical aspects of the SF-36 and SGRQ. The English and French versions of the CHAMPS did not show any substantial differences in reliability (frequency scores) or validity (frequency and caloric expenditure scores). Findings from this study support the reliability and validity of the CHAMPS. In particular, frequency scores for moderate-intensity activities can provide useful information on physical activity levels in individuals with COPD. This trial is registered with NCT00169897. ISRCTN registration number: IRSCTN32824512.
Scalp and neck (SN) melanoma confers a worse prognosis than melanoma of other sites but little is known about its determinants. We aimed to identify associations between SN melanoma and known risk ...genes, phenotypic traits, and sun exposure patterns.
Participants were cases from the Western Australian Melanoma Health Study (
= 1,200) and the Genes, Environment, and Melanoma Study (
= 3,280). Associations between risk factors and SN melanoma, compared with truncal and arm/leg melanoma, were investigated using binomial logistic regression. Facial melanoma was also compared with the trunk and extremities, to evaluate whether associations were subregion specific, or reflective of the whole head/neck region.
Compared with other sites, increased odds of SN and facial melanoma were observed in older individuals SN: OR = 1.28, 95% confidence interval (CI) = 0.92-1.80,
= 0.016; Face: OR = 4.57, 95% CI = 3.34-6.35,
< 0.001 and those carrying
-rs12203592*T (SN: OR = 1.35, 95% CI = 1.12-1.63,
= 0.002; Face: OR = 1.29, 95% CI = 1.10-1.50,
= 0.001). Decreased odds were observed for females (SN: OR = 0.49, 95% CI = 0.37-0.64,
< 0.001; Face: OR = 0.66, 95% CI = 0.53-0.82,
< 0.001) and the presence of nevi (SN: OR = 0.66, 95% CI = 0.49-0.89,
= 0.006; Face: OR = 0.65, 95% CI = 0.52-0.83,
< 0.001).
Differences observed between SN melanoma and other sites were also observed for facial melanoma. Factors previously associated with the broader head and neck region, notably older age, may be driven by the facial subregion. A novel finding was the association of
-rs12203592 with both SN and facial melanoma.
Understanding the epidemiology of site-specific melanoma will enable tailored strategies for risk factor reduction and site-specific screening campaigns.
To estimate the level of balance self-efficacy among community-dwelling subjects with stroke and to determine the relative importance of balance self-efficacy compared with functional walking ...capacity in predicting physical function and perceived health status.
Secondary analysis of baseline, postintervention, and 6-month follow-up data from a randomized trial.
General community.
Ninety-one subjects with a first or recurrent stroke, discharged from rehabilitation therapy with a residual walking deficit.
Not applicable.
The Activities-Specific Balance Confidence (ABC) Scale, Medical Outcomes Study 36-Item Short-Form Health Survey physical function scale, and the EQ-5D visual analog scale of perceived health status.
Average balance self-efficacy was 59 out of 100 points on the ABC scale (95% confidence interval, 55-64; n=89). After adjusting for age and sex, functional walking capacity explained 32% and 0% of the respective variability in physical function and perceived health status scores obtained 6 months later. After adjustment for age, sex, and functional walking capacity, balance self-efficacy explained 3% and 19% of variation in 6-month physical function and perceived health status scores, respectively.
Subjects living in the community after stroke experience impaired balance self-efficacy. Enhancing balance self-efficacy in addition to functional walking capacity may lead to greater improvement, primarily in perceived health status, but also in physical function, than the enhancement of functional walking capacity alone.
Emergency department (ED) visits for ambulatory care sensitive conditions (ACSCs) are common among older adults. The high-intensity telemedicine model of care has been proposed as an innovative ...approach to expand access to acute illness care, thereby preventing ED visits. The aim of this study was to assess the effect of a high-intensity telemedicine program for senior living community (SLC) residents on the rate of ED use for ACSCs.
We performed a prospective cohort study at a primary care geriatrics practice that provides care to 22 SLCs. Six SLCs selected as intervention facilities, with the remaining SLCs serving as controls. Consenting practice patients at intervention facilities could have patient-to-provider, real-time, or store-and-forward high-intensity telemedicine services to diagnose and treat illnesses. The primary outcome was the rate of ED visits for which the primary diagnosis was an "ambulatory-care-sensitive" condition by the Institute of Medicine, which we compared between control and intervention participants.
During the study period, control participants had 310 ED visits for ACSCs, for a rate of 0.195 visits/person-year. Intervention participants visited the ED for ACSCs 85 times, for a rate of 0.138 visits/person-year unadjusted rate ratio (RR): 0.71, 95% confidence interval (CI): 0.53-0.94. Among intervention participants, ED use for ACSCs decreased at an annual rate of 34% (RR: 0.661, 95% CI: 0.444-0.982), whereas, in the control group there was no statistically significant change in ED use over time (RR: 1.01, 95% CI: 0.90-1.14).
Providing acute illness care by high-intensity telemedicine to older adults residing in SLCs significantly decreases the rate of ED use for ACSCs over 1 year, compared with no change in the rate of ED use for ACSCs among the control group.
Prevailing regulatory and financing issues constrain dissemination of connected care despite evidence supporting acceptability, effectiveness, and efficiency. In this analysis we describe care ...provided over a 12-year period by Health-e-Access, an evidence-based, information-rich, connected care model designed to serve children with acute illness. We demonstrate the broad clinical capacity of this care model and key components imparting this capacity.
Since 2001, Health-e-Access has been used in childcare, elementary schools, neighborhood after-hours sites, and a school for children with severe disabilities in Rochester, NY. With Health-e-Access, videoconference (preferably) or telephone enables parent, patient, and provider engagement. Technology includes the capacity for acquisition and exchange of a broad range of clinical observations, qualifying Health-e-Access as an information-rich model and differentiating it from multiple other connected care models commonly labeled telemedicine. Primary diagnoses recorded for completed visits were classified according to resources (technology, personnel, examination type) required to complete encounters appropriately.
Among 13,812 Health-e-Access visits initiated through June 2013, 98.2% were completed. Capacity for ear-nose-throat examination and close inspection of eye and skin were sufficient to identify positive findings supporting 95.2% of primary diagnoses. Videoconference and stethoscope were considered essential for observations required to rule out serious conditions often presenting in similar fashion to these 95%.
Health-e-Access included technology essential for establishing diagnoses, ruling out more serious conditions, and identifying problems beyond its scope. Regulations enabling and financing incentivizing replication of similar connected care models would benefit families and communities substantially. Observations challenge regulatory bodies and payers to support connected health services of comparable value.
Health-e-Access, a telemedicine service providing care for acute illnesses in children, has delivered >6500 telemedicine visits from 10 primary care practices in Rochester, New York, by using ...telemedicine access at 22 child care and school sites. The goal was to assess the hypotheses that children served by Health-e-Access received health care more often for acute illnesses but had fewer emergency department (ED) visits and lower health care expenditures than did children without access through this service.
By using insurance claims, this case study compared utilization (starting in May 2001) of telemedicine, office, or ED care for children with versus without telemedicine access. Children included in analyses had > or =6 consecutive insurance-covered months through July 2007. Claims data captured all utilization. A total of 19 652 child-months from 1216 children with telemedicine access were matched with respect to age, gender, socioeconomic status, and season with child-months for children without telemedicine availability.
The mean age at utilization was 6.71 years, with 79% of all child-months being covered by Medicaid managed care. The overall utilization rate was 305.1 visits per 100 child-years. In multivariate analyses with adjustment for potential confounders, overall illness-related utilization rates (in-person or telemedicine visits per 100 child-years) for all sites were 23.5% greater for children with telemedicine access than for control children, but ED utilization was 22.2% less.
The Health-e-Access telemedicine model holds potential to reduce health care costs, mostly through replacement of ED visits for nonemergency problems.
To assess the hypothesis that effectiveness and safety of the Health-e-Access telemedicine model for care of children with special healthcare needs (CSHCN) with acute illness equaled those for care ...of children in regular childcare and schools (CRS).
We examined healthcare use through insurance claims and telemedicine records spanning 5.7 and 7.3 years for CSHCN and CRS, respectively. Effectiveness was measured as telemedicine visit completion, duplication, and adverse events. Completed visits had diagnosis and management decisions made, and treatment implemented, based solely on telemedicine. Duplicating visits addressed related problems in-person following telemedicine visits within 1 or 3 days. An adverse event was defined as an emergency department visit following a telemedicine visit within 3 days for a problem probably related.
Comparisons addressing these measures included 483 and 10,008 telemedicine visits by CSHCN and CRS, respectively. Claims files captured health services use for varying periods of time among 300 different CSHCN and among 1,950 different CRS. Among the 483 telemedicine visits initiated for CSHCN over their telemedicine observation period, 9 were not completed. The CSHCN completion rate of 98.1% equaled the 97.6% completion observed among CRS. Within 3 days, in-person visits duplicated 16.1% of telemedicine visits for both CSHCN and CRS. Within 1 day, in-person visits duplicated 5.3% and 8.9% of telemedicine visits for CSHCN and CRS, respectively. Adverse events following telemedicine visits included 0.3% of telemedicine visits for CSHCN and 0.5% for CRS.
Observations support safety and effectiveness of Health-e-Access telemedicine for both CSHCN and CRS.
Background The Wilson-Cleary (W—C) model of health-related quality of life (HRQL) has not been tested in stroke, and a better understanding of the components of HRQL during recovery would lead to a ...more integrated and person-centered approach to health management and outcome optimization for this vulnerable population. Objective To enhance our understanding for how QOL emerges from the sequelae of stroke during the recovery period, the aim was to empirically test a biopsychosocial conceptual model of HRQL for people recovering from stroke. Methods We present a multi-site longitudinal study of an inception cohort of 678 persons recruited at stroke onset and studied at key intervals over the first post-stroke year. As the most pronounced recovery after stroke occurs in the first 3 months, this time frame was chosen as the focus of this analysis. The measures for this study were chosen for their relevance to key constructs of stroke impact and for their optimal psychometric properties. Multiple measures for each of the W—C rubrics were available from instruments such as the Stroke Impact Scale, RAND-36, HUI, and EQ-5D, among others. A structural equation model (SEM) was fit using MPlus. To minimize potential bias arising from the missing data, multiple imputation was performed on the longitudinal data using SAS proc MI. Results Of the 678 subjects who entered the cohort, 618 were interviewed at 1 month post-stroke and 533 at 3 months (486 and 454 had data at 6 and 12 months, respectively). A 3-month model with paths from biological factors to symptoms and symptoms to function fits well (CFI:0.966, RMSEA:0.044), though one model with paths from function to health perception did not (CFI:0.934, RMSEA:0.058). Allowing additional paths across non-adjacent rubrics improved fit considerably (CFl:0.962, RMSEA:0.044). A final model included emotional well-being under the symptom rubric (CH:0.955, RMSEA:0.047). Including social support as an environmental factor had little impact on the model. Total variance in health perception explained was 76.3 %. Conclusion These results emphasize that to optimize overall HRQL during the crucial first 3 months of recovery, interventions need to continue to focus on comorbid health conditions and on reducing stroke impairments. A function-only focus too soon in the recovery process may not produce the desired impact to optimize HRQL.