Achieving life milestones in Duchenne/Becker muscular dystrophy: A retrospective analysis

2020 ◽  
pp. 10.1212/CPJ.0000000000000970
Author(s):  
Andrew Donaldson ◽  
Debra Guntrum ◽  
Emma Ciafaloni ◽  
Jeffrey Statland

AbstractObjective:To understand the milestones achieved in the transition from childhood to adulthood for patients with Duchenne and Becker Muscular Dystrophies (DMD/BMD).Methods:We performed a retrospective chart review on patients ≥ 15 years of age with a clinical diagnosis of DMD/BMD who received care from January 1, 2008 to 2018 at the University of Kansas Medical Center and the University of Rochester Medical Centers. Participants were identified using local MDA-funded clinic lists, neuromuscular research databases, and electronic medical record review. Data was abstracted using a uniform template on education, employment, community resources, relationships, and end of life discussions, and is presented as mean, median or frequency with associated 95% confidence interval (CI).Results:109 patients were identified: patients ranged in age from 15 to 56 years with a median of 24, and covered a 5-state region and Ontario, Canada. Seventy-eight percent of patients had DMD, and were, on average, 8.5 years younger than BMD patients. Over half (56.9%, 95% CI 47.6, 66.2) were high school graduates or beyond. Sixteen percent did not have their highest level of education documented. Only 20.0% had an occupation (95% CI 12.7, 27.7), most frequently in education and administrative support (34%). The majority were still living with parents (80.7%, 95% CI, 73.3, 88.1). A minority reported having end of life discussions (17.4%, 95% CI 10.3, 24.6).Conclusion:Psychosocial elements reflecting the transition to adulthood are inconsistently reported in clinical documentation. A prospective study will further elucidate this transition.

2017 ◽  
Vol 44 (1) ◽  
pp. 33-36 ◽  
Author(s):  
Abigail Bernard ◽  
Catherine L Satterwhite ◽  
Madhuri Reddy

IntroductionLong-acting reversible contraception (LARC) is widely recommended to reduce unintended pregnancy in the USA. As intrauterine device (IUD) use increases, evaluating the role of post-insertion follow-up is important.MethodsA retrospective patient record review was conducted to assess the follow-up experience of women who had an IUD placed at the University of Kansas Medical Center from 1 January to 30 June 2015. Data were collected on patient demographics, IUD placement, follow-up visit attendance, and outcomes in the 12 months following placement. The primary outcome of interest was the proportion of patients who attended a 6-week follow-up visit. Secondary outcomes included adverse events detected at the 6-week visit and IUD removal within a year of placement.ResultsAmong 380 women who had an IUD inserted, physician documentation of a recommended 6-week follow-up visit was present in 91.3% of patient medical records. Two-thirds (66.6%) of patients receiving a recommendation returned for a follow-up visit. Of the 380 women who had an IUD placed, 66 (17.4%) had their IUD removed within 1 year of placement. Of those, 50 women attended the 6-week follow-up visit and 16 did not (19.8% vs 12.6%, p=0.08). Of the IUD removals, 14 occurred at the 6-week visit. After excluding IUD removals which occurred at the 6-week visit, attending a 6-week follow-up visit was not associated with IUD removal or retention (p=0.52).ConclusionDespite recommendations to forgo the 6-week follow-up visit, visits were still common, with no demonstrated value added.


2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6143-6143
Author(s):  
G. C. Doolittle ◽  
A. O. Spaulding ◽  
A. R. Williams

6143 Background: The University of Kansas Medical Center (KUMC) has offered oncology services via interactive tele-video (ITV) to patients in rural Kansas for over a decade. A KUMC oncologist utilizes ITV technology to connect with patients at Hays Medical Center (HMC), which is approximately 265 west of KUMC. The technology enables the oncologist to conduct a complete patient visit without being in physical proximity to the patient. To date, two cost-tracking studies have been conducted to determine expenses associated with the tele-oncology practice. A third study recently analyzed costs incurred during fiscal year 2005 (FY05). Methods: In order to determine the costs of the practice during FY05, HMC and KUMC expenses were monitored for oncology services rendered via telemedicine. An analysis revealed expenses common to a traditional oncology practice and additional expenses unique to a telemedicine practice. Administrative support staff salaries, the oncologist’s contract fees, and nursing staff salaries made up the majority of the traditional practice-related expenses. Costs unique to a tele-oncology practice were those associated with technology including expenses for telemedicine equipment, telecommunication charges, and technician time. Results: Expenses for the tele-oncology practice on the KUMC side totaled $22,848, with $7,331 attributed to technology-related costs and $15,517 attributed to practice-related costs. For HMC, $5,803 in technology-related costs and $30,430 in practice-related costs totaled $36,233. At 235 tele-oncology consults and a combined total expense of $59,081 between KUMC and HMC, the FY05 analysis resulted in an average cost of $251 per consult. When compared to prior studies, this shows a substantial reduction in costs related to the practice of telemedicine. Conclusions: The average cost of a tele-oncology visit in Kansas has consistently decreased significantly since the practice’s 1995 inception. Analyses have revealed that the costs of providing oncology services via telemedicine are closely tied to utilization, as the majority of the expenses are related to personnel rather than technology. Telemedicine has proven itself to be a cost-efficient alternative to offering regular outreach clinics. No significant financial relationships to disclose.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 12-12
Author(s):  
Titas Banerjee ◽  
Jason Harold Mendler ◽  
Nabeel Badri ◽  
Dwight Hettler ◽  
Julie Ann Berkhof ◽  
...  

12 Background: Inpatient mortality, defined as death within 30 days of an acute hospital admission, is often used as a quality benchmark for healthcare institutions and is an important metric for evaluating quality of care of patients with advanced malignancies. In this study we aimed to utilize QOPI performance data to identify areas of weakness in our practice that may contribute to inpatient mortality. Methods: We analyzed 11 EOL measures within the QOPI database which we collected between 2015 and 2018. These included all EOL measures related to hospice enrollment (measure IDs 42-47), chemotherapy administered within the last 2 weeks of life (ID 48), percentage of patients who died from cancer with at least one emergency department (ED) visit in the last 30 days of life (ID 49ed), and the percentage of patients who died from cancer admitted to the Intensive Care Unit (ICU) in the last 30 days of life (ID 49icu). Our rate was calculated for each measure and compared against QOPI aggregate data. We used a fisher’s exact test to determine statistical significance for each metric. Results: The number of patients from our institution included in each analysis ranged from 27 to 46. Compared to our peers, patients treated at our institution were more likely to visit an ED in the last 30 days of life (68% vs. 32%; P < 0.0001), more likely to be admitted to the ICU in the last 30 days of life (29% vs. 9%; P = 0.0003), and more likely to be enrolled on hospice within the last 7 days of death (63% vs. 32%; P = 0.001). Conclusions: Analysis of QOPI EOL performance scores identified several metrics that may contribute to inpatient mortality at URMC. Ongoing participation in QOPI with a focus on EOL metrics will strengthen this analysis. We plan to use this data to guide quality improvement initiatives aimed at reducing impatient mortality and improving end of life care at our institution.


2014 ◽  
Vol 2014 ◽  
pp. 1-7 ◽  
Author(s):  
Dafna Koldobskiy ◽  
Soleyah Groves ◽  
Steven M. Scharf ◽  
Mark J. Cowan

Background. Recent studies of risks in cardiopulmonary arrest (CPA) have been performed using large databases from a broad mix of hospital settings. However, these risks might be different in a large, urban, academic medical center. We attempted to validate factors influencing outcomes from CPA at the University of Maryland Medical Center (UMMC). Methods. Retrospective chart review of all adult patients who underwent CPA between 2000 and 2005 at UMMC. Risk factors and outcomes were analyzed with appropriate statistical analysis and compared with published results. Results. 729 episodes of CPA were examined during the study period. Surgical patients had better survival than medical or cardiac patients. Intensive care unit' (ICU) patients had poor survival, but there was no difference on monitored or unmonitored floors. Respiratory etiologies survived better than cardiac etiologies. CPR duration and obesity were negatively correlated with outcome, while neurologic disease, trauma, and electrolyte imbalances improved survival. Age, gender, race, presence of a witness, presence of a monitor, comorbidities, or time of day of CPA did not influence survival, although age was associated with differences in comorbidities. Conclusions. UMMC risk factors for CPA survival differed from those in more broad-based studies. Care should be used when applying the results of database studies to specific medical institutions.


2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 168-168
Author(s):  
Jessica Ann Reifer Hildebrand ◽  
Renuka Bhan

168 Background: Recent studies have observed that starting Palliative Care (PC) soon after diagnosis for patients with advanced cancer improves quality of life, end of life (EOL) care, and possibly survival. Consequently, it has been recommended that combined standard oncology care and PC should be considered early in the course of illness for patients with advanced cancer. It has been posited that patients enrolled in early PC receive less aggressive care at the EOL and consequently spend fewer healthcare dollars. We sought to compare the aggressiveness of care received by those enrolled in early PC to those enrolled in late PC. Methods: A retrospective chart review of patients diagnosed with stage III or IIII colorectal cancer (CRC) at New Hanover Regional Medical Center between 2009 through 2011 was performed. Patients who were enrolled in PC within 30 days of diagnosis were compared to those enrolled later. Aggressiveness of care given during the last 30 days of life was assessed by: hospitalizations, ED visits, days spent in the ICU, chemotherapy received in the last 14 days of life, and death in the hospital. Results: 186 patients were identified for the study, and 89 met inclusion criteria. We found no significant difference in the aggressiveness of care received by those enrolled in early PC (46.7%) versus later PC (47.8%) (p = 1.00). In fact, almost half of all patients with advanced cancer received some form of aggressive care within the last 30 days of life. While those enrolled in late PC more frequently received chemotherapy, were admitted to the ICU, and died in the hospital, the differences were not statistically significant. Whether or not these differences account for cost savings in the early PC group has yet to be determined. Conclusions: Our study found that patients were just as likely to receive aggressive care at the EOL regardless of whether or not they were enrolled in early PC. This finding was unexpected given the goals and philosophy of PC groups. While early PC has been recommended as a quality care measure, patient and physician factors may limit its effectiveness. For example, patients, while receptive to certain aspects of PC, still desire a cure. Similarly, physicians feel compelled to treat patients aggressively.


2013 ◽  
Vol 4 (3) ◽  
Author(s):  
Katie Felhofer

Pulse oximetry is the most common way to measure a patient's respiratory status in the hospital setting; however, capnography monitoring is a more accurate and sensitive technique which can more comprehensively measure respiratory function. Due to the limited number of capnography monitoring equipment at the University of Minnesota Medical Center-Fairview (UMMC-Fairview), we analyzed which patients should preferentially be chosen for capnography monitoring over pulse oximetry based on risk of respiratory depression. We conducted a retrospective chart review of all serious opioid-induced over-sedation events that occurred at UMMCFairview between January 1, 2008 and June 30, 2012. Thirteen risk factors were identified which predispose patients to respiratory depression. The average patient demonstrated 3.75 risk factors. The most commonly occurring risk factor was the concomitant use of multiple opioids or an opioid and a CNS-active sedative, followed by an ASA score 䊫 3. Based on this data, we developed a scorecard for choosing patients at the most risk of developing respiratory depression; these patients are the best candidates for capnography. Although further studies are necessary to corroborate this research, at this time giving extra consideration to patients demonstrating the previously stated risk factors is prudent when assessing those patients most in need of capnography.   Type: Student Project


1995 ◽  
Vol 74 (6) ◽  
pp. 422-425 ◽  
Author(s):  
Joseph Haddad ◽  
Thomas V. Inglesby ◽  
Linda Addonizio

A retrospective chart review was undertaken at Columbia Presbyterian Medical Center to assess the incidence, etiology and management of head and neck infections in pediatric cardiac transplant patients on immunosuppression. From June 1984 to February 1992, 59 cardiac-transplants were performed on 57 pediatric patients. Standard immunosuppressive therapy was used. Thirteen of these patients died within three months of transplant and were not included. Of the 44 patient charts reviewed, 82 head and neck infections were documented in 27 patients (61%). There were 26 episodes of sinusitis, 27 episodes of otitis media and 20 episodes of tonsillitis/pharyngitis. Unusual middle-ear pathogens seen included Morganella morgagni and Pseudomonas aeruginosa. These preliminary data suggest that children on immunosuppression for cardiac transplant may be at risk for head and neck infections from unusual or unsuspected organisms, and tympanocentesis plays an important role in diagnosis and treatment. A prospective study is planned to gain further data.


2020 ◽  
Vol 29 (Sup9a) ◽  
pp. S48-S56
Author(s):  
K. A. Kenneweg ◽  
M. C. Welch ◽  
P. J. Welch

• Objective: Several pressure ulcer (PU) risk factors including paralysis and age greater than 70 have been identified, while others such as nutrition are debated. The object of this study is to identify perioperative risk factors that may predict improved outcomes and reduced complications in primary and recurrent PU reconstructions. • Method: A retrospective chart review of patients treated surgically for PUs from 2004 to 2013 at the University of Toledo Medical Center, Toledo, Ohio, US, was completed. Data collected included ulcer and medical history, as well as risk factors, complications and postoperative outcome. Data were statistically analysed for perioperative variances between primary and recurrent ulcers and closure status. • Results: A total of 49 patients with 102 reconstructions were reviewed. Spinal cord injured patients accounted for 90% receiving flap coverage of ulcers. Numerous differences between primary and recurrent ulcers were identified, including ulcer location, patient nutritional status, wound infection, postoperative course and recurrence. Multivariate analysis revealed a flap reconstruction prediction model using creatinine, haematocrit, haemoglobin, and prealbumin that is able to successfully predict closure outcome in 83.6% of cases. • Conclusion: Many factors play a role in the development, course and treatment of PUs. It is vital to understand the role of patient risk factors in the development of PUs, to direct subsequent management and reconstruction, and to prevent future recurrences.


2021 ◽  
Author(s):  
Justin Riffel ◽  
Anjulie Quick

Abstract Purpose To report the recent rate of acute postoperative endophthalmitis following cataract surgery at the University of Kansas Medical Center (KUMC) where postoperative topical antibiotics were excluded. Methods This was a retrospective chart review of patients who underwent phacoemulsification with or without intraocular lens insertion as standalone surgery from February 2018 through August 2020. Those undergoing combination surgeries were excluded. All patients received intracameral moxifloxacin at the conclusion of cataract surgery but were not prescribed postoperative topical antibiotics. Acute postoperative endophthalmitis was defined as occurring within six weeks after surgery. Results There were 2,218 standalone cataract surgeries performed on 1,418 patients. Zero cases of acute postoperative endophthalmitis were identified (0%). There were no systemic adverse reactions to intracameral moxifloxacin administration in the 41 patients with a preexisting fluoroquinolone allergy. Conclusion The recent rate of acute postoperative endophthalmitis following cataract surgery at KUMC using intracameral moxifloxacin without postoperative topical antibiotics is 0%.


2019 ◽  
Vol 184 (11-12) ◽  
pp. 820-825
Author(s):  
Abhimanyu Chandel ◽  
Kara Brusher ◽  
Victoria Hall ◽  
Robin S Howard ◽  
Paul A Clark

Abstract Introduction Rhabdomyolysis is often encountered in austere environments where the diagnosis can be challenging due to the expense or unavailability of creatine phosphokinase (CPK) testing. CPK concentration ≥5,000 U/L has previously been found to be a sensitive marker for progression to renal failure. This study sought to propose a model utilizing an alternate biomarker to allow for the diagnosis and monitoring of clinically significant rhabdomyolysis in the absence of CPK. Materials and Methods We performed a retrospective chart review of 77 patients admitted to a tertiary medical center with a primary diagnosis of rhabdomyolysis. A linear regression model with aspartate aminotransferase (AST) as the independent variable was developed and used to predict CPK ≥5,000 U/L on admission and CPK values on subsequent hospital days. The study was approved and monitored by the Institutional Review Board at Walter Reed National Military Medical Center. Results Ln(AST) explained over 80% of the variance in ln(CPK) (adjusted R2 = 0.802). The diagnostic accuracy to predict CPK ≥5,000 U/L was high (AUC 0.959; 95% CI: 0.921–0.997, P &lt; 0.001). A cut point of AST ≥110 U/L in our study population had a 97.1% sensitivity and an 85.7% specificity for the detection of a CPK value ≥5,000 U/L. The agreement between actual CPK and predicted CPK for subsequent days of hospitalization was fair with an intraclass correlation coefficient of 0.52 (95% CI: 0.38–0.63). The developed model based on day 1 data tended to overpredict CPK values on subsequent hospital days. Conclusions We propose a threshold concentration of AST that has an excellent sensitivity for detecting CPK concentration ≥5,000 U/L on day of admission in a patient population with a diagnosis of rhabdomyolysis. A formula with a fair ability to predict CPK levels based on AST concentrations on subsequent hospital days was also developed.


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