scholarly journals Accountable and Thus Legitimate? A Comparative Study of Philanthropists

2020 ◽  
Vol 49 (6) ◽  
pp. 1210-1232
Author(s):  
Noomi Weinryb
Keyword(s):  
Human Embryonic Stem Cell ◽  
Embryonic Stem ◽  
Institutional Logics ◽  
Cross Sectional Study ◽  
Public Agencies ◽  
Private Funding ◽  
Cross Sectional ◽  
Specific Patient ◽  
Local Isomorphism ◽  
External Accountability

This article takes a comparative qualitative approach to explore the intertwined external accountability and legitimacy attempts of independently wealthy philanthropists. By comparing accountability forums and institutional logics stated by philanthropists, it is investigated to whom they are externally accountable and how they legitimate their controversial funding of public goods. The study compares the external accountability and legitimacy attempts of philanthropists with that of public agencies, corporations, and fundraising-dependent nonprofits. Empirically, this is a cross-sectional study of funders supporting human embryonic stem cell research in either California or Sweden. The study shows that it is through local isomorphism, rather than any specific accountability forum or institutional logic, that philanthropists are accountable and thus legitimate their giving. This is in contrast to other types of funders, which are more similar within each form when comparing accountability forums across societies, and more similar within societies in their usage of institutional logics, with certain patterned statements. In addition, philanthropists in both societies are more detached than any other type of funder as regards both specific patient populations and the general electorate. This finding raises questions on what philanthropists’ private funding for public purposes actually entails.

Effect of training on the self-efficacy of informal caregivers of colorectal cancer patients.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 226-226
Author(s):  
Rachel D. Havyer ◽  
Michelle van Ryn ◽  
Patrick Wilson ◽  
Joan M. Griffin
Keyword(s):  
Colorectal Cancer ◽  
Self Efficacy ◽  
Cross Sectional Study ◽  
Caregiver Training ◽  
Longitudinal Impact ◽  
Care Providers ◽  
Cross Sectional ◽  
Specific Patient ◽  
Stage Of Disease ◽  
Cancer Registry Data

226 Background: Patients undergoing cancer treatment often need support from an informal caregiver to help manage symptoms. Self-efficacy (SE) in caregiving refers to confidence in being able to care for the patient’s needs. Low SE has been associated with increased caregiver burden and mental health symptoms, which in turn, can affect the quality of informal care provided. The objective of this study was to examine the relationship between caregiver training received from cancer care providers and SE in caregivers of patients with colorectal cancer (CRC). Methods: Caregivers of CRC patients diagnosed in 2009 were invited to complete a self-administered questionnaire. Caregivers were asked about specific patient problems (pain, bowel, fatigue, medications, and other). Caregiver perceptions of training adequacy and SE were assessed on a problem specific basis. The patient’s stage of disease was obtained from cancer registry data. Associations between training and SE were examined for each problem using multivariate logistic regression and adjusted for age, relationship to patient, race, care burden, level of education, stage of disease, perception of patient’s health, and general confidence as a caregiver. Results: 417 caregivers completed the survey (70% response rate), of whom 374 (90%) were female and 284 (68%) were the patient’s spouse/partner. The number of caregivers reporting inadequate training for CRC-related problems were pain 77 (38%), bowel 80 (38%), fatigue 121 (48%), medication 65 (26%), and other 101 (40%). The odds of having low SE were significantly higher among those with perceptions of inadequate training across the following CRC-related problems: pain, 10.10 (3.36, 30.39); bowel, 5.04 (1.98, 12.82); fatigue, 8.45 (3.22, 22.15); managing medications, 9.00 (3.30, 24.51); and other, 3.87 (1.68, 8.93). Conclusions: This study showed a significant association between caregiver training and SE in a cross-sectional study. Given that the perception of inadequate training among caregivers was common, further exploration of the longitudinal impact of training on caregiver SE should be done to identify interventions to help improve the experience of cancer caregivers.

Extemporaneous Compounding: A Possible Trigger Tool to Detect potentially health incidents

2021 ◽  
Vol 16 ◽  
Author(s):  
Marina Massae Toma ◽  
Gabriel de Freitas Santana ◽  
Tales Rubens de Nadai ◽  
Fabiana Rossi Varallo ◽  
Jhohann Richard de Lima Benzi ◽  
...  
Keyword(s):  
Enteral Feeding ◽  
Scientific Literature ◽  
Feeding Tube ◽  
Cross Sectional Study ◽  
Inclusion Criteria ◽  
Hospital Data ◽  
Cross Sectional ◽  
Specific Patient ◽  
Trigger Tool ◽  
Enteral Feeding Tube

Background: Extemporaneous compounding (EC) involves preparation of a therapeutic product to a specific-patient need. However, there is a potential relation between this procedure and the occurrence of health incidents (HI). The use of triggers tool increases HI identification. Objective: This study assessed the performance of EC as trigger to detect potentially health incidents arising from this procedure. Method: A one-month observational and cross-sectional study was performed in internal medicine ward and intensive care unit of medium-sized hospital. Data collection was carried out in 5 stages: all triggered patients with dysphagia or enteral feeding tube with prescription of EC were included; it was observed all EC executed in standardized drugs prescribed; the procedure was compared with the hospital guide and scientific literature; HI monitoring and their evaluation using WHO and NCC MERP algorithms; a search for pharmaceutical alternatives (PA) that would avoid the observed EC. Results: 197 patients were recruited. Almost half of them were triggered by EC from 84 standardized drugs. 48 patients met inclusion criteria. It was identified 28 adverse drug reactions, 01 therapeutic ineffectiveness and 29 medication errors. EC as trigger tool showed a PPV value of 0.38. Finally, only 24 drugs have PA available in the market, that could avoid one third of all observed EC. Conclusion: It was possible to detect potentially HI in one of two patients with enteral feeding tube using EC as trigger tool. The use of EC as a trigger tool contributes to identify potentially HI arising from drugs, which have not gotten pharmaceutical alternatives to be administered via enteral feeding tube.

RESULTS FROM A NATIONAL CROSS-SECTIONAL STUDY OF DISEASE BURDEN IN CROHN’S DISEASE

2021 ◽  
Vol 27 (Supplement_1) ◽  
pp. S13-S13
Author(s):  
Jamison Seabury ◽  
Christine Zizzi ◽  
Jennifer Weinstein ◽  
Ellen Wagner ◽  
Spencer Rosero ◽  
...  
Keyword(s):  
Crohn’S Disease ◽  
Crohn's Disease ◽  
Large Population ◽  
Median Number ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Specific Patient ◽  
Research Activities ◽  
Patient Reported

Abstract Background Patients with Crohn’s disease experience a wide variety of clinical symptoms that affect how they feel and function. As therapeutic trials are planned for patients with Crohn’s disease, it is important to better understand the symptoms that have the greatest impact on Crohn’s disease patient’s lives. Objective To identify the most common and important disease manifestations in Crohn’s disease in a large population of patients. To determine the modifying factors that are associated with these symptoms. Methods We conducted a national cross-sectional study of 415 patients from the IBD Partners patient registry sponsored by the Crohn’s & Colitis Foundation to identify the prevalence and relative importance of 148 individual symptoms across 17 unique symptomatic themes. These themes were previously identified through 16 semi-structured qualitative interviews with Crohn’s patients. Results Crohn’s disease participants provided over 55,000 symptom rating responses. The symptomatic themes with the highest prevalence in Crohn’s disease were gastrointestinal issues (93.0%), fatigue (86.4%), dietary restrictions (77.9%), impaired sleep or daytime sleepiness (75.6%), and inability to do activities (72.3%). Symptomatic theme prevalence was widely associated with having above the median number of stools per day, having above the median number of bowel movements per day, having perianal disease, having to miss work, and unemployment. Discussion/Conclusion: Crohn’s disease symptoms, some under-recognized, vary based on disease characteristics and demographic features. These symptoms represent targets for future therapeutic interventions and are potential areas of interest for an upcoming disease-specific patient-reported outcome measure for this population. Acknowledgements Funding for this project was provided by UR Ventures. Research activities were conducted in collaboration with the Crohn’s & Colitis Foundation.

Common seasonal respiratory viral infections in children before and during the coronavirus disease 2019 (COVID-19) pandemic

2021 ◽  
pp. 1-5
Author(s):  
Xiaoyan Song ◽  
Meghan Delaney ◽  
Rahul K. Shah ◽  
Joseph M. Campos ◽  
David L. Wessel ◽  
...  
Keyword(s):  
Patient Outcomes ◽  
Pediatric Patients ◽  
Viral Infections ◽  
Cross Sectional Study ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Admissions ◽  
Significant Difference ◽  
Respiratory Viral Infections ◽  
Respiratory Coronavirus

Abstract Objectives: To describe the incidence of seasonal respiratory viral infections (s-RVIs) before and during the coronavirus disease 2019 (COVID-19) pandemic and to compare virus-specific patient outcomes in pediatric patients. Design: A retrospective cross-sectional study including patient admissions to the Children’s National Hospital between October 1, 2015, and December 31, 2020. Results: Among 12,451 patient admissions between March 15 and December 31, 2020 (cohort 1), 8,162 (66%) were tested for severe acute respiratory coronavirus virus 2 (SARS-CoV-2), and 249 (2.0%) were positive. Among 10,986 patient admissions between April 1 and December 31, 2020 (cohort 2), 844 (8%) were tested for s-RV upon admission and 160 were positive. Thus, 1.5% of patient admissions were associated with laboratory-confirmed s-RVIs. Among the 49,901 patient admissions during a viral season between October 1, 2015, and March 31, 2020 (cohort 3), 7,539 (15%) were tested for s-RV upon admission and 4,531 were positive; thus, 9.0% of patient admissions were associated with laboratory-confirmed s-RVIs. hHRV/rENT was the most detected virus, but the detection rate decreased substantially (31% vs 18%; P < .001) during the COVID-19 pandemic. No patients had RSV, influenza, hMPV, hPIV, or hCoV detected upon admission after April 21, 2020. The 3 patient cohorts had no statistically significant difference in the percentage of ICU admissions (10.8% vs 15.0% vs 14.2%; P > .05) or death at discharge (0.8% vs 0.6% vs 0.5%; P > .05). Conclusions: Compared to COVID-19, s-RVI cases were associated with a higher proportion of inpatient admissions but were similar in ICU admission and death rates in hospitalized pediatric patients. Public health interventions for preventing COVID-19 were highly effective in preventing pediatrics s-RVIs.

scholarly journals Treatment Motivations and Expectations in Patients with Actinic Keratosis: A German-Wide Multicenter, Cross-Sectional Trial

2020 ◽  
Vol 9 (5) ◽  
pp. 1438
Author(s):  
Theresa Steeb ◽  
Anja Wessely ◽  
Dagmar von Bubnoff ◽  
Thomas Dirschka ◽  
Konstantin Drexler ◽  
...  
Keyword(s):  
Correlation Analysis ◽  
Extrinsic Motivation ◽  
Precancerous Lesions ◽  
Treatment Decision ◽  
Cross Sectional Study ◽  
Invasive Squamous Cell Carcinoma ◽  
Patient Centered ◽  
Cross Sectional ◽  
Specific Patient ◽  
Self Administered Questionnaire

Patient-centered motives and expectations of the treatment of actinic keratoses (AK) have received little attention until now. Hence, we aimed to profile and cluster treatment motivations and expectations among patients with AK in a nationwide multicenter, cross-sectional study including patients from 14 German skin cancer centers. Patients were asked to complete a self-administered questionnaire. Treatment motives and expectations towards AK management were measured on a visual analogue scale from 1–10. Specific patient profiles were investigated with subgroup and correlation analysis. Overall, 403 patients were included. The highest motivation values were obtained for the items “avoid transition to invasive squamous cell carcinoma” (mean ± standard deviation; 8.98 ± 1.46), “AK are considered precancerous lesions” (8.72 ± 1.34) and “treating physician recommends treatment” (8.10 ± 2.37; p < 0.0001). The highest expectation values were observed for the items “effective lesion clearance” (8.36 ± 1.99), “safety” (8.20 ± 2.03) and “treatment-related costs are covered by health insurance” (8.00 ± 2.41; p < 0.0001). Patients aged ≥77 years and those with ≥7 lesions were identified at high risk of not undergoing any treatment due to intrinsic and extrinsic motivation deficits. Heat mapping of correlation analysis revealed four clusters with distinct motivation and expectation profiles. This study provides a patient-based heuristic tool for a personalized treatment decision in patients with AK.

Values of Retinoblastoma Survivors and Parents Regarding Treatment Outcomes: A Qualitative Study

2022 ◽  
Author(s):  
Ana Janic ◽  
Ajoy Vincent ◽  
Jennifer Stinson ◽  
Helen Dimaras
Keyword(s):  
Focus Groups ◽  
Treatment Outcomes ◽  
Treatment Success ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Reported ◽  
Sick Children

PURPOSE: Retinoblastoma is an aggressive pediatric eye cancer. Patient-reported outcome measures reveal important insights into how patients perceive their own health. Currently, there is no widely used or validated measure for assessment of retinoblastoma outcomes. The purpose of this research was to uncover which treatment outcomes that retinoblastoma survivors and their parents value, to inform the development of a future measure. METHODS: This qualitative, cross-sectional study included retinoblastoma survivors age 6 years and older and parents of retinoblastoma survivors. Participants who did not demonstrate fluency in English were excluded. Study participants participated in semistructured interviews or focus groups, either in person at The Hospital for Sick Children, Toronto, Canada, or through secure videoconference, between March 3, 2019, and January 25, 2020. Iterative rounds of opening coding, codebook development, and coresearcher analysis were used to identify key emergent themes and subthemes. RESULTS: Seventeen adults participated in six focus groups. Nine pediatric survivors participated in individual interviews. Four common themes emerged from all participant groups: (1) definition of treatment success, (2) enucleation—acceptance and challenges, (3) treatment outcomes to measure, and (4) need for outcome reporting. An additional, unique theme was identified in all pediatric discussions: worries and coping mechanisms. Treatment outcomes deemed valuable were related to the following domains: psychosocial outcomes, daily functioning, functional vision, retinoblastoma education, cosmetic outcomes, and secondary eye conditions. CONCLUSION: This study represents the first stage in the development of a retinoblastoma-specific patient-reported outcome measure. The findings reveal insight into what outcomes are valued by survivors after treatment and offer promise to improve outcomes assessment for retinoblastoma.

scholarly journals Practices and obstetric interventions in women from a state in the Northeast of Brazil

2017 ◽  
Vol 63 (12) ◽  
pp. 1039-1048 ◽  
Author(s):  
Daniela Siqueira Prado ◽  
Rosemar Barbosa Mendes ◽  
Rosana Queiroz Gurgel ◽  
Ikaro Daniel de Carvalho Barreto ◽  
Felipa Daiana Bezerra ◽  
...  
Keyword(s):  
Best Practices ◽  
Cross Sectional Study ◽  
Labor Analgesia ◽  
Lithotomy Position ◽  
Postpartum Women ◽  
Private Funding ◽  
Cross Sectional ◽  
Factors Associated ◽  
Maternity Hospitals ◽  
Private Financing

Summary Objective: To describe practices and interventions used during labor and childbirth and factors associated with such practices in puerperae in the state of Sergipe. Method: A cross-sectional study with 768 postpartum women from 11 maternity hospitals interviewed 6 hours after delivery, and hospital records review. The associations between best practices and interventions used during labor and delivery with exposure variables were described using simple frequencies, percentages, crude and adjusted odds ratio (ORa) with the confidence interval. Results: Of the women in the study, 10.6% received food and 27.8% moved during labor; non-pharmacological methods for pain relief were performed in 26.1%; a partogram was filled in 39.4% of the charts; and an accompanying person was present in 40.6% of deliveries. Oxytocin, amniotomy and labor analgesia were used in 59.1%, 49.3% and 4.2% of women, respectively. Lithotomy position during childbirth was used in 95.2% of the cases, episiotomy in 43.9% and Kristeller maneuver in 31.7%. The variables most associated with cesarean section were private financing (ORa=4.27, 95CI 2.44-7.47), higher levels of education (ORa=4.54, 95CI 2.56-8.3) and high obstetric risk (ORa=1.9, 95CI 1.31-2.74). Women whose delivery was funded privately were more likely to have an accompanying person present (ORa=2.12, 95CI 1.18-3.79) and to undergo labor analgesia (ORa=4.96, 95CI 1.7-14.5). Conclusion: Best practices are poorly performed and unnecessary interventions are frequent. The factors most associated with c-section were private funding, greater length of education and high obstetric risk.

scholarly journals Frequency of Congenital Anomalies in Newborns and Its Relation to Maternal Health in a Tertiary Care Hospital in Peshawar, Pakistan

2015 ◽  
Vol 3 (1) ◽  
pp. 19-23 ◽  
Author(s):  
Adnan Khan ◽  
Muhammad Zuhaid ◽  
Maria Fayaz ◽  
Faryal Ali ◽  
Arsalan Khan ◽  
...  
Keyword(s):  
Risk Factors ◽  
Folic Acid ◽  
Congenital Anomalies ◽  
Tertiary Care ◽  
Cross Sectional Study ◽  
Care Hospital ◽  
Cross Sectional ◽  
Specific Patient ◽  
Neonatal Deaths ◽  
Associated Risk Factors

Background: Congenital anomalies are a major cause of perinatal and neonatal deaths, both in low- and high-income countries. They are relatively common worldwide, affecting 3% to 5% of live births. Methods: A cross-sectional study was conducted from January 2014 to June 2014 at the Khyber teaching hospital in Peshawar. Specific patient information was obtained from patient records at the beginning of the study. Those individuals found to have at least one birth defect were approached and their attendants (mothers) were interviewed. Information regarding various risk factors was collected. Descriptive analyses were carried out. Results: Out of 1062 deliveries, 2.9% (31) of newborns had various congenital anomalies.b Hydrocephalus (22.6%), anencephaly (12.9%), and spina bifida (9.7%) were major anomalies. The maternal age ranged from 18 years to 46 years (mean: 30 ± 8). Most of the anomalies (35.5%) were present in the 26-30 years age group. Out of 31 babies, 6.4% had multiple anomalies. The preponderance of various congenital anomalies was seen in parity 1 (35.4%); parities 2 to 4 had lower incidences (35.4%). The consanguinity rate was 67.7%; only 32.3% of patients were using folic acid. History of passive smoking was positive in 16.1% of cases. Conclusion: Anencephaly and hydrocephalus were the most prominent anomaly detected; early prenatal diagnosis may be helpful in decreasing mortality by offering early termination. Low intake of folic acid and a high consanguinity rate were the most common associated risk factors for congenital anomalies. These risk factors may be reduced by creating awareness regarding the avoidance of consanguineous marriage and promoting the use of folic acid during pregnancy.

scholarly journals Clinical Presentations of Adolescents Aged 16–18 Years in the Adult Emergency Department

2021 ◽  
Vol 18 (18) ◽  
pp. 9578
Author(s):  
Lara Aurora Brockhus ◽  
Martina Bärtsch ◽  
Aristomenis K. Exadaktylos ◽  
Kristina Keitel ◽  
Jolanta Klukowska-Rötzler ◽  
...  
Keyword(s):  
Diagnostic Testing ◽  
Age Groups ◽  
Cross Sectional Study ◽  
Vulnerable Population ◽  
Adult Patients ◽  
University Hospital ◽  
Cross Sectional ◽  
Specific Patient ◽  
Time Period ◽  
The University

Background: In many large hospitals in Switzerland, adolescents 16 years and older are treated in adult emergency departments (ED). There have been few publications about this specific patient population, especially in Switzerland. This study aims to provide an overview of emergency presentations of adolescents between 16–18 years of age when compared to adults and focuses on their principle complaints. Methods: We conducted a single-centre, retrospective, cross-sectional study of all patients aged 16 years and older presenting to the adult ED at the University Hospital (Inselspital) in Bern, Switzerland, from 2013 to 2017. This analysis gives an overview of emergency presentations of adolescents between 16–18 years of age in this time period and compares their consultation characteristics to those of adult patients. Results: Data of a total of 203,817 patients who presented to our adult ED between 2013 and 2017 were analysed. Adolescents account for 2.5% of all emergency presentations. The number of ED presentations in the reviewed time period rose for adults (+2368, 95% CI: 1695, 3041, p = 0.002 consultations more per year; +25% comparing 2013 with 2017), while adolescent presentations did not significantly increase (p = 0.420). In comparison to adult patients, adolescents presented significantly more often during the night (39.1% vs. 31.5%, p < 0.001), as walk-ins (54.2% vs. 44.9%, p < 0.001), or with less highly acute complaints at triage (21% vs. 31%, p < 0.001). They were more likely to be discharged (70.8% vs. 52.2%, p < 0.001). We found a significant association between the two age groups and principle complaints. In comparison to adults, trauma and psychiatric problems were significantly more common among adolescents. Conclusions: Our data showed that complaints in adolescent patients under 18 years of age significantly differ from those in older patients. The artificial age cut-off therefore puts this vulnerable population at risk of receiving inadequate diagnostic testing and treatment adapted only for adults. Additional studies are needed on the reasons adolescents and young adults seek ED care, as this could lead to improvements in the care processes for this vulnerable population.

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