Summary
To develop consensus on improving the management of patients, we convened an international workshop involving patients, clinicians, and researchers. Key findings included the diagnostic delay ...and variability in subsequent management with agreement to develop an international natural history study. We now invite other stakeholders to join the partnership.
Purpose
The aim of this study was develop a consensus on how to improve the management of patients with fibrous dysplasia and prioritize areas for research
Methods
An international workshop was held over 3 days involving patients, clinicians, and researchers. Each day had a combination of formal presentations and facilitated discussions that focused on clinical pathways and research.
Results
The patient workshop day highlighted the variability of patients’ experience in getting a diagnosis, the knowledge of general clinical staff, and understanding long-term outcomes. The research workshop prioritized collaborations that improved understanding of the contemporary natural history of fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The clinical workshop outlined the key issues around diagnostics, assessment of severity, treatment and monitoring of patients.
Conclusions
In spite of advances in understanding the genetic and molecular underpinnings of fibrous dysplasia/McCune-Albright syndrome, clinical management remains a challenge. From the workshop, a consensus was reached to create an international, multi-stakeholder partnership to advance research and clinical care in FD/MAS. We invite other stakeholders to join the partnership.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
BACKGROUND:Declining platelet counts may reveal platelet activation and aggregation in a postoperative prothrombotic state. Therefore, we hypothesized that nadir platelet counts after on-pump ...coronary artery bypass grafting (CABG) surgery are associated with stroke.
METHODS:We evaluated 6130 adult CABG surgery patients. Postoperative platelet counts were evaluated as continuous and categorical (mild versus moderate to severe) predictors of stroke. Extended Cox proportional hazard regression analysis with a time-varying covariate for daily minimum postoperative platelet count assessed the association of day-to-day variations in postoperative platelet count with time to stroke. Competing risks proportional hazard regression models examined associations between day-to-day variations in postoperative platelet counts with timing of stroke (early0–1 days; delayed≥2 days).
RESULTS:Median (interquartile range) postoperative nadir platelet counts were 123.0 (98.0–155.0) × 10/L. The incidences of postoperative stroke were 1.09%, 1.50%, and 3.02% for platelet counts >150 × 10/L, 100 to 150 × 10/L, and <100 × 10/L, respectively. The risk for stroke increased by 12% on a given postoperative day for every 30 × 10/L decrease in platelet counts (adjusted hazard ratio HR, 1.12; 95% confidence interval CI, 1.01–1.24; P= .0255). On a given day, patients with moderate to severe thrombocytopenia were almost twice as likely to develop stroke (adjusted HR, 1.89; 95% CI, 1.13–3.16; P= .0155) as patients with nadir platelet counts >150 × 10/L. Importantly, such thrombocytopenia, defined as a time-varying covariate, was significantly associated with delayed (≥2 days after surgery; adjusted HR, 2.83; 95% CI, 1.48–5.41; P= .0017) but not early postoperative stroke.
CONCLUSIONS:Our findings suggest an independent association between moderate to severe postoperative thrombocytopenia and postoperative stroke, and timing of stroke after CABG surgery.
Listeriosis is a foodborne disease caused by Listeria monocytogenes species and is known to cause severe complications, particularly in pregnant women, young children, the elderly, and ...immunocompromised individuals. The aim of this study was to investigate the presence of Listeria species in food and water using both biochemical and species-specific PCR analysis. L. monocytogenes isolates were further screened for the presence of various antibiotic resistance, virulence, and biofilm-forming determinants profiles using phenotypic and genotypic assays. A total of 207 samples (composed of meat, milk, vegetables, and water) were collected and analyzed for presence of L. monocytogenes using species specific PCR analysis. Out of 267 presumptive isolates, 53 (19.85%) were confirmed as the Listeria species, and these comprised 26 L. monocytogenes, 3 L. innocua, 2 L. welshimeri, and 1 L. thailandensis. The remaining 21 Listeria species were classified as uncultured Listeria, based on 16SrRNA sequence analysis results. A large proportion (76% to 100%) of the L. monocytogenes were resistant to erythromycin (76%), clindamycin (100%), gentamicin (100%), tetracycline (100%), novobiocin (100%), oxacillin (100%), nalidixic acid (100%), and kanamycin (100%). The isolates revealed various multi-drug resistant (MDR) phenotypes, with E-DA-GM-T-NO-OX-NA-K being the most predominant MDR phenotypes observed in the L. monocytogenes isolates. The virulence genes prfA, hlyA, actA, and plcB were detected in 100%, 68%, 56%, and 20% of the isolates, respectively. In addition, L. monocytogenes isolates were capable of forming strong biofilm at 4 °C (%) after 24 to 72 h incubation periods, moderate for 8% isolates at 48 h and 20% at 72 h (p < 0.05). Moreover, at 25 °C and 37 °C, small proportions of the isolates displayed moderate (8–20%) biofilm formation after 48 and 72 h incubation periods. Biofilm formation genes flaA and luxS were detected in 72% and 56% of the isolates, respectively. These findings suggest that proper hygiene measures must be enforced along the food chain to ensure food safety.
The purpose of this descriptive survey was to explore how, and for what purpose, health care practitioners use yoga in clinical practice. A survey was administered to professionals who identified as ...healthcare practitioners who used yoga in their practice. There were 205 completed responses from a combination of healthcare practitioners including occupational therapists, physical therapists, yoga therapists, recreational therapists, speech-language pathologists, and mental health counselors. Practitioners worked in outpatient, community, and acute rehab settings. Open-ended survey questions were analyzed using directed content analysis. Themes included how to discuss and document yoga, selecting yoga based on patient preference and clinical judgment, and finally, practitioners’ recommendations for implementing yoga into practice. Implications of the study are further discussed.
Chronic kidney disease (CKD) can progress rapidly, and patients are often unprepared to make kidney failure treatment decisions. We aimed to better understand patients’ preferences for and ...experiences of shared and informed decision making (SDM) regarding kidney replacement therapy before kidney failure.
Cross-sectional study.
Adults receiving nephrology care at CKD clinics in rural Pennsylvania.
Estimated glomerular filtration rate, 2-year risk for kidney failure, duration and frequency of nephrology care, and preference for SDM.
Occurrence and extent of kidney replacement therapy discussions and participants’ satisfaction with those discussions.
Multivariable logistic regression to quantify associations between participants’ characteristics and whether they had discussions.
The 447 study participants had a median age of 72 (IQR, 64-80) years and mean estimated glomerular filtration rate of 33 (SD, 12) mL/min/1.73 m2. Most (96%) were White, high school educated (67%), and retired (65%). Most (72%) participants preferred a shared approach to kidney treatment decision making, and only 35% discussed dialysis or transplantation with their kidney teams. Participants who had discussions (n = 158) were often completely satisfied (63%) but infrequently discussed potential treatment-related impacts on their lives. In multivariable analyses, those with a high risk for kidney failure within 2 years (OR, 3.24 95% CI, 1.72-6.11; P < 0.01), longer-term nephrology care (OR, 1.12 95% CI, 1.05-1.20 per 1 additional year; P < 0.01), and more nephrology visits in the prior 2 years (OR, 1.34 95% CI, 1.20-1.51 per 1 additional visit; P < 0.01) had higher odds of having discussed dialysis or transplantation.
Single health system study.
Most patients preferred sharing CKD treatment decisions with their providers, but treatment discussions were infrequent and often did not address key treatment impacts. Longitudinal nephrology care and frequent visits may help ensure that patients have optimal SDM experiences.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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Chronic kidney disease (CKD) care is often fragmented across multiple health care providers. It is unclear whether patients rely mostly on their nephrologists or non-nephrologist ...providers for medical care, including CKD treatment and advice.
Cross-sectional study.
Adults receiving nephrology care at CKD clinics in Pennsylvania.
Frequency, duration, and patient-centeredness (range, 1 least to 4 most) of participants’ nephrology care.
Participants’ reliance on nephrologists, primary care providers, or other specialists for medical care, including CKD treatment and advice.
Multivariable logistic regression to quantify associations between participants’ reliance on their nephrologists (vs other providers) and their demographics, comorbid conditions, kidney function, and nephrology care.
Among 1,412 patients in clinics targeted for the study, 676 (48%) participated. Among these, 453 (67%) were eligible for this analysis. Mean age was 71 (SD, 12) years, 59% were women, 97% were white, and 65% were retired. Participants were in nephrology care for a median of 3.8 (IQR, 2.0-6.6) years and completed a median of 4 (IQR, 3-5) nephrology appointments in the past 2 years. Half (56%) the participants relied primarily on their nephrologists, while 23% relied on primary care providers, 18% relied on all providers equally, and 3% relied on other specialists. Participants’ adjusted odds of relying on their nephrologists were higher for those in nephrology care for longer (OR, 1.08 95% CI, 1.02-1.15; P=0.02), those who completed more nephrology visits in the previous 2 years (OR, 1.16 95% CI, 1.05-1.29; P=0.005), and those who perceived their last interaction with their nephrologists as more patient-centered (OR, 2.63 95% CI, 1.70-4.09; P<0.001).
Single health system study.
Many nephrology patients relied on non-nephrologist providers for medical care. Longitudinal patient-centered nephrology care may encourage more patients to follow nephrologists’ recommendations.
Full text
Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Rationale & Objective: Chronic kidney disease (CKD) can progress rapidly, and patients are often unprepared to make kidney failure treatment decisions. We aimed to better understand patients’ ...preferences for and experiences of shared and informed decision making (SDM) regarding kidney replacement therapy before kidney failure. Study Design: Cross-sectional study. Setting & Participants: Adults receiving nephrology care at CKD clinics in rural Pennsylvania. Predictors: Estimated glomerular filtration rate, 2-year risk for kidney failure, duration and frequency of nephrology care, and preference for SDM. Outcomes: Occurrence and extent of kidney replacement therapy discussions and participants’ satisfaction with those discussions. Analytic Approach: Multivariable logistic regression to quantify associations between participants’ characteristics and whether they had discussions. Results: The 447 study participants had a median age of 72 (IQR, 64-80) years and mean estimated glomerular filtration rate of 33 (SD, 12) mL/min/1.73 m2. Most (96%) were White, high school educated (67%), and retired (65%). Most (72%) participants preferred a shared approach to kidney treatment decision making, and only 35% discussed dialysis or transplantation with their kidney teams. Participants who had discussions (n = 158) were often completely satisfied (63%) but infrequently discussed potential treatment-related impacts on their lives. In multivariable analyses, those with a high risk for kidney failure within 2 years (OR, 3.24 95% CI, 1.72-6.11; P < 0.01), longer-term nephrology care (OR, 1.12 95% CI, 1.05-1.20 per 1 additional year; P < 0.01), and more nephrology visits in the prior 2 years (OR, 1.34 95% CI, 1.20-1.51 per 1 additional visit; P < 0.01) had higher odds of having discussed dialysis or transplantation. Limitations: Single health system study. Conclusions: Most patients preferred sharing CKD treatment decisions with their providers, but treatment discussions were infrequent and often did not address key treatment impacts. Longitudinal nephrology care and frequent visits may help ensure that patients have optimal SDM experiences.
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Available for:
GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
BACKGROUND Every year 30% of individuals above age 65 fall, and falls are the principal cause of bone fractures. To reduce fracture incidence requires both prevention of falls and maintenance of bone ...strength. METHODS PubMed searches were performed, for studies of the epidemiology of fractures, bone physiology, endocrine effects, osteoporosis measurement, genetics, prevention and effectiveness. Topic summaries were presented to the Workshop Group and omissions or disagreements were resolved by discussion. RESULTS Ageing reduces bone strength in post-menopausal women because estrogen deficiency causes accelerated bone resorption. Bone mineral density (BMD) decreased more than 2.5 standard deviation below the mean of healthy young adults defines osteoporosis, a condition associated with an increased risk of fractures. Risk factors such as age and previous fracture are combined with BMD for a more accurate prediction of fracture risk. The most widely used assessment tool is FRAX™ which combines clinical risk factors and femoral neck BMD. General preventive measures include physical exercise to reduce the risk of falling and vitamin D to facilitate calcium absorption. Pharmacological interventions consist mainly in the administration of inhibitors of bone resorption. Randomized controlled trials show treatment improves BMD, and may reduce the relative fracture risk by about 50% for vertebral, 20–25% for non-vertebral and up to 40% for hip fractures although the absolute risk reductions are much lower. CONCLUSIONS Although diagnosis of osteoporosis is an important step, the threshold for treatment to prevent fractures depends on additional clinical risk factors. None of the presently available treatment options provide complete fracture prevention.
Rationale & Objective: Chronic kidney disease (CKD) care is often fragmented across multiple health care providers. It is unclear whether patients rely mostly on their nephrologists or ...non-nephrologist providers for medical care, including CKD treatment and advice. Study Design: Cross-sectional study. Setting & Participants: Adults receiving nephrology care at CKD clinics in Pennsylvania. Predictors: Frequency, duration, and patient-centeredness (range, 1 least to 4 most) of participants’ nephrology care. Outcome: Participants’ reliance on nephrologists, primary care providers, or other specialists for medical care, including CKD treatment and advice. Analytical Approach: Multivariable logistic regression to quantify associations between participants’ reliance on their nephrologists (vs other providers) and their demographics, comorbid conditions, kidney function, and nephrology care. Results: Among 1,412 patients in clinics targeted for the study, 676 (48%) participated. Among these, 453 (67%) were eligible for this analysis. Mean age was 71 (SD, 12) years, 59% were women, 97% were white, and 65% were retired. Participants were in nephrology care for a median of 3.8 (IQR, 2.0-6.6) years and completed a median of 4 (IQR, 3-5) nephrology appointments in the past 2 years. Half (56%) the participants relied primarily on their nephrologists, while 23% relied on primary care providers, 18% relied on all providers equally, and 3% relied on other specialists. Participants’ adjusted odds of relying on their nephrologists were higher for those in nephrology care for longer (OR, 1.08 95% CI, 1.02-1.15; P = 0.02), those who completed more nephrology visits in the previous 2 years (OR, 1.16 95% CI, 1.05-1.29; P = 0.005), and those who perceived their last interaction with their nephrologists as more patient-centered (OR, 2.63 95% CI, 1.70-4.09; P < 0.001). Limitations: Single health system study. Conclusions: Many nephrology patients relied on non-nephrologist providers for medical care. Longitudinal patient-centered nephrology care may encourage more patients to follow nephrologists’ recommendations.
Full text
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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