Public Interest in Medical Research Participation: Does It Matter if Patients or Community Members Have Helped Design the Study?

PurposeWe determined national levels of public participation in medical research study design. We compared public interest in medical research participation (MRP) in studies overall, versus studies explicitly designed with public involvement.MethodCross‐sectional household survey of US population in June 2013. Descriptive statistics estimated participation in medical research study design. Chi‐square test compared levels of interest in MRP if respondent knew patients or community members helped design the study.ResultsOf 2,048 respondents (participation rate 60%), 5% knew someone who had helped design a medical research study. There was no association between having known someone or personal participation in study design and willingness to engage in MRP. Although the overall proportion of respondents who would consider MRP initially (51%) was similar to the proportion who would consider MRP with community member involvement in study design (49%), the changes in respondents' views across the different scenarios were significantly greater than what would have been expected by chance.ConclusionsWe found similar levels of interest in MRP whether or not the public is involved in medical research study design. This finding may indicate that public involvement in study design, like community‐based participatory research, may not affect overall rates of MRP.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/115983/1/cts12278.pd

Knowledge of hepatitis C screening and management by internal medicine residents: trends over 2 years

Over 2 million people in the United States are infected with hepatitis C, and there has been an explosion in knowledge regarding this disease in the last decade. Internal medicine residents must be able to identify patients at risk for hepatitis C and institute appropriate diagnostic testing and referral of these patients. Methods : A survey regarding hepatitis C risk factors and the management of hepatitis C patients was administered on three occasions over 15 months (time 0, 1 month, and 15 months) to members of a large university-based internal medicine residency. Results : During the study period 59 residents completed all three surveys. Less than half of the residents (39%) ask patients about hepatitis C risk factors. Only 58% reported that they would refer a hepatitis C antibody positive patient with elevated liver enzymes to a subspecialist on the initial survey. The residents who did not refer patients cited low response rates, high side-effect profiles, and the high cost of therapy as reasons for not referring the patient. There was significant improvement (58% vs 78%, p < 0.01 ) in the rate of patient referral during the 15-month study period but no substantial improvement in the other knowledge deficits. Conclusions : The knowledge base of the internal medicine residents about hepatitis C screening and management is suboptimal. New, more effective hepatitis C education programs for internal medicine residents should be initiated.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/75407/1/j.1572-0241.2002.05708.x.pd

Incremental Hospital Charges Associated With Obesity as a Secondary Diagnosis in Children

Objective: The objective was to evaluate the association of obesity as a comorbidity with hospital charges, by comparing charges for pediatric hospitalizations with vs. without obesity as a secondary diagnosis. Methods: Using the 2000 Healthcare Cost and Utilization Project (HCUP) Kids’ Inpatient Database (KID), a nationally representative sample of pediatric hospital discharges, we identified the most common non‐pregnancy‐related principal diagnoses for children 2 to 18 years of age: asthma, pneumonia, affective disorders, and appendicitis. For each we compared mean charges and mean length of stay for hospitalizations with vs. without obesity as a secondary diagnosis, adjusting for relevant socio‐demographics and hospital type. Results: Among children's discharges in 2000, 1.1% listed obesity as a secondary diagnosis. These had a disproportionate likelihood of being older, black, Medicaid beneficiaries, and hospitalized at a general hospital. Adjusted mean hospital charges were significantly higher for discharges with obesity as a secondary diagnosis vs. those without: appendicitis ($14,134 vs.$11,049; p < 0.01), asthma ($7766 vs.$6043; p < 0.05), pneumonia ($12,228 vs.$9688; p < 0.05), and affective disorders ($8292 vs.$7769; p < 0.01). Whereas obesity as a secondary diagnosis was associated with a pattern of increased adjusted mean length of stay, only asthma and affective disorders had statistically significant differences (0.6 days) ( p < 0.01). Conclusion: This national analysis suggests obesity as a secondary diagnosis is associated with significantly higher charges for the most common reasons for pediatric hospitalizations. This presents a financial imperative for further research to evaluate factors that contribute to higher inpatient charges related to obesity as a comorbidity and underscores the need for obesity prevention initiatives.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/93704/1/oby.2007.224.pd

Hospital discharges for fever and neutropenia in pediatric cancer patients: United States, 2009

Background Fever and neutropenia (FN) is a common complication of pediatric cancer treatment, but hospital utilization patterns for this condition are not well described. Methods Data were analyzed from the Kids’ Inpatient Database (KID), an all-payer US hospital database, for 2009. Pediatric FN patients were identified using: age ≤19 years, urgent or emergent admit type, non-transferred, and a combination of ICD-9-CM codes for fever and neutropenia. Sampling weights were used to permit national inferences. Results Pediatric cancer patients accounted for 1.5 % of pediatric hospital discharges in 2009 (n = 110,967), with 10.1 % of cancer-related discharges meeting FN criteria (n = 11,261). Two-fifths of FN discharges had a “short length of stay” (SLOS) of ≤3 days, which accounted for approximately $65.5 million in hospital charges. Upper respiratory infection (6.0 %) and acute otitis media (AOM) (3.7 %) were the most common infections associated with SLOS. Factors significantly associated with SLOS included living in the Midwest region (OR = 1.65, 1.22–2.24) or West region (OR 1.54, 1.11–2.14) versus Northeast, having a diagnosis of AOM (OR = 1.39, 1.03–1.87) or viral infection (OR = 1.63, 1.18–2.25) versus those without those comorbidities, and having a soft tissue sarcoma (OR = 1.47, 1.05–2.04), Hodgkin lymphoma (OR = 2.33, 1.62–3.35), or an ovarian/testicular tumor (OR = 1.76, 1.05–2.95) compared with patients without these diagnoses. Conclusion FN represents a common precipitant for hospitalizations among pediatric cancer patients. SLOS admissions are rarely associated with serious infections, but contribute substantially to the burden of hospitalization for pediatric FN

Can longitudinal generalized estimating equation models distinguish network influence and homophily? An agent-based modeling approach to measurement characteristics

Abstract Background Connected individuals (or nodes) in a network are more likely to be similar than two randomly selected nodes due to homophily and/or network influence. Distinguishing between these two influences is an important goal in network analysis, and generalized estimating equation (GEE) analyses of longitudinal dyadic network data are an attractive approach. It is not known to what extent such regressions can accurately extract underlying data generating processes. Therefore our primary objective is to determine to what extent, and under what conditions, does the GEE-approach recreate the actual dynamics in an agent-based model. Methods We generated simulated cohorts with pre-specified network characteristics and attachments in both static and dynamic networks, and we varied the presence of homophily and network influence. We then used statistical regression and examined the GEE model performance in each cohort to determine whether the model was able to detect the presence of homophily and network influence. Results In cohorts with both static and dynamic networks, we find that the GEE models have excellent sensitivity and reasonable specificity for determining the presence or absence of network influence, but little ability to distinguish whether or not homophily is present. Conclusions The GEE models are a valuable tool to examine for the presence of network influence in longitudinal data, but are quite limited with respect to homophily.http://deepblue.lib.umich.edu/bitstream/2027.42/134740/1/12874_2016_Article_274.pd

Community-Based Values for 2009 Pandemic Influenza A H1N1 Illnesses and Vaccination-Related Adverse Events

OBJECTIVE: To evaluate community-based values for avoiding pandemic influenza (A) H1N1 (pH1N1) illness and vaccination-related adverse events in adults and children. METHODS: Adult community members were randomly selected from a nationally representative research panel to complete an internet survey (response rate = 65%; n = 718). Respondents answered a series of time trade-off questions to value four hypothetical health state scenarios for varying ages (1, 8, 35, or 70 years): uncomplicated pH1N1 illness, pH1N1 illness-related hospitalization, severe allergic reaction to the pH1N1 vaccine, and Guillain-Barré syndrome. We calculated descriptive statistics for time trade-off amounts and derived quality adjusted life year losses for these events. Multivariate regression analyses evaluated the effect of scenario age, as well as respondent socio-demographic and health characteristics on time trade-off amounts. RESULTS: Respondents were willing to trade more time to avoid the more severe outcomes, hospitalization and Guillain-Barré syndrome. In our adjusted and unadjusted analyses, age of the patient in the scenario was significantly associated with time trade-off amounts (p-value<0.05), with respondents willing to trade more time to prevent outcomes in children versus adults. Persons who had received the pH1N1 vaccination were willing to trade significantly more time to avoid hospitalization, severe allergic reaction, and Guillain-Barré syndrome, controlling for other variables in adjusted analyses.(p-value<0.05) CONCLUSIONS: Community members placed the highest value on preventing outcomes in children, compared with adults, and the time trade-off values reported were consistent with the severity of the outcomes presented. Considering these public values along with other decision-making factors may help policy makers improve the allocation of pandemic vaccine resources

Research priorities of people living with Turner syndrome

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/148393/1/ajmgc31676.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/148393/2/ajmgc31676_am.pd

Use of a choice survey to identify adult, adolescent and parent preferences for vaccination in the United States

Abstract Background Adult and adolescent vaccination rates are far below coverage targets in the United States. Our objective was to identify the most influential factors related to vaccine uptake among adults, adolescents, and parents of adolescents (parents) in the United States. Methods We used a fractional factorial design to create a binary choice survey to evaluate preferences for vaccination. The national survey was fielded to a sample of adults, adolescents ages 13–17 years, and parents, using a national probability-based online research panel in November 2015. Respondents were presented with 5 profiles of a hypothetical vaccine and asked in a series of questions whether they would accept each vaccine. We analyzed the binary choice data using logistic regression in STATA v13 (College Station, TX) to calculate the odds that a participant would choose to accept the vaccine. Results We received completed responses from 334 (51%) of 652 adults, 316 (21%) of 1516 adolescents, and 339 (33%) of 1030 parents. Respondents were generally representative of the U.S. population. Vaccine effectiveness was the most influential factor in the choice to vaccinate for all groups. Other most influential factors were primary care provider (PCP) recommendation and the out-of-pocket cost of the vaccine. Other factors such as risk of illness, risk of vaccine side effects, vaccination location, and time for vaccination were not important in the decision to get vaccinated. Conclusions Adults, adolescents, and parents are most sensitive to vaccine effectiveness, PCP recommendation, and out-of-pocket cost for vaccination in their decision to get vaccinated. Strong PCP recommendations that focus on vaccine effectiveness and health care policies that minimize out-of-pocket costs for vaccinations may increase vaccine uptake by adults and adolescents.https://deepblue.lib.umich.edu/bitstream/2027.42/152264/1/41687_2019_Article_135.pd