bluuebunny/crossref_metadata_2025_split huggingface dataset:
The experiences of parents raising children with developmental disabilities in Ethiopia
Authors: Tekola Bethlehem , Kinfe Mersha , Girma Bayouh Fikirte , Hanlon Charlotte , Hoekstra Rosa A 
Published: June 2022

The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. Parents’ lived experiences can provide insights into local conceptualizations of developmental disabilities, challenges children and their families face and their needs. This study explores the experiences of parents (14 mothers and 4 fathers) raising children with developmental disabilities in urban and rural Ethiopia using in-depth interviews. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple and intersecting struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed. Lay abstract The experiences of parents raising children with developmental disabilities have been widely researched, although most of this research comes from Western, high-income countries. In comparison, little is known about the lived experiences of parents of children with developmental disabilities in low- and middle-income countries and in Africa in particular. We interviewed 14 mothers and 4 fathers in Addis Ababa and the rural town of Butajira to explore what life is like for parents caring for children with developmental disabilities in Ethiopia. Cultural and religious beliefs played a role in the types of delays or differences in their child’s development that parents noticed early and the kinds of support they sought. Parents experienced stigma and lack of understanding from others. Their experiences regarding some of the challenges they faced such as lack of appropriate services varied based on where they lived (urban or rural). Single mothers especially were faced with multiple struggles including poverty, stigma, and lack of social support. Implications for future research and interventions that aim to increase knowledge about developmental disabilities, tackle stigma and improve the lives of children and their families are discussed.
The autistic experience of homelessness: Implications from a narrative enquiry
Authors: Stone Beth , Cameron Ailsa , Dowling Sandra 
Published: June 2022

Emerging research suggests autistic people are disproportionately represented in homeless populations. Less is known about how autistic people experience homelessness and what prevents them from exiting homelessness. This article presents findings from a narrative enquiry investigating the link between autism and homelessness. Ten autistic adults consented to participate in narrative interviews which explored their life histories and pathways through homelessness. This article considers how participants experienced rough sleeping and sofa surfing before attempting to access hostels. It then examines how participants navigated support systems, arguing that barriers to accessing services perpetuated homelessness. Because of these barriers, some participants disengaged with services, preferring to sleep rough. The extent to which participants could be said to have ‘chosen’ homelessness is balanced with consideration of the lack of autonomy autistic adults are able to exercise over their lives. This article concludes with discussion of practical implications for services and policy in England. Lay Abstract Recent research suggests many autistic people experience homelessness. However, little is known about the types of homelessness autistic people experience and what barriers autistic people face when trying to exit homelessness. This study involved gathering life stories of autistic people who had experienced homelessness. Ten autistic participants talked about their pathways through homelessness and the difficulties they had in accessing support. After first becoming homeless, participants tended to experience rough sleeping and sofa surfing. When participants approached housing and homelessness services, they were often told they were not eligible for support. This could happen when support workers were not aware of autism, or when autism was not considered ‘severe’ enough. Overcrowding, confrontation and lack of control over routine and environment were particular issues for participants when they entered homelessness hostels. Some participants chose to sleep on the streets rather than stay in environments which increased social anxiety and sensory difficulties. This study discusses ways in which homelessness and housing services can increase accessibility and improve engagement for autistic people. It is important to increase awareness of autism while understanding that autistic people who experience homelessness may have complex needs. In addition, services need to listen to autistic people with lived experience of homelessness to decide what changes will have the most impact.
Impact of the abandonment of assistive technologies for mobility on the incidence of serious falls in older adults living at home: Results of the ECOCAT study
Authors: Sawadogo Abdoul Razak , Nys Jean-François , Tran Estelle , Gayot Caroline , Boyer Sophie , Cardinaud Noëlle , Thebaut Clémence , Tchalla Achille 
Published: June 2022

Purpose To examine the impact of discontinuing the use of assistive technology for mobility (ATM) devices on the 6-months incidence of falls in older adults (OA) living at home. Materials and methods A medico-socioeconomic survey was performed to collect information on the quality of life and well-being of older adults, before and 6 months after being loaned an ATM device. Personal data (medical, social, and economic) were collected via a geriatric survey. Results In all, 102 OA participated in the study. Over the 6-months observation period, 17 ( n = 81) serious falls were recorded among participants who were using their ATM device optimally; in those who discontinued device use, 12 falls ( n = 21) were recorded (57.1%; p = 0.001). Factors significantly associated with falls at home were living in an urban area (odds ratio [OR]: 11.46; 95% confidence interval [CI]: 1.48; 88.98; p = 0.020), an Instrumental Activities of Daily Living Scale score > 4 (OR: 34.04; 95% CI: 1.59; 727.86; p = 0.024), and discontinuation of ATM device use (OR: 17.41; 95% CI: 2.59; 117.02; p = 0.003). Conclusion Discontinuation of ATM device use was associated with an increased risk for serious falls.
Systemic air embolism following computed-tomography-guided transthoracic needle biopsy of lung lesion – a systematic search of case reports and case series
Authors: Pietersen Pia I , Kristjansdottir Björg , Laursen Christian , M Jørgensen Gitte , Graumann Ole 
Published: June 2022

Background Systemic air embolism is a rare, however potentially fatal, low incidence, complication to CT-guided transthoracic needle biopsy of lung lesions. Purpose The purpose of this review of case reports and series was to pool data about this rare complication and glance for a pattern or similarities in the patients’ initial symptoms and course, as well as the management of the patients in relation to current guidelines. Material and methods PubMed was searched for case reports and case series about systemic air embolisms following CT-guided transthoracic needle biopsy of lung lesions from inception to November 2021. A reviewer screened the results for eligibility and included studies which reported at least two outcomes of interest. Data was extracted by one author and a descriptive analysis was conducted. Results Of 1,136 studies screened, 83 were eligible for inclusion involving 97 patients. The mean age was 64.8±11.7 years and ≈60% of the patients were men. In 15 cases the outcome was fatal, and most of the fatal cases ( n = 12) had cardiac arrest as the primary initial symptom. In addition to conventional oxygen therapy, 34 patients received hyperbaric oxygen therapy, and in 30 cases the physician in charge chose to change the patient from standard supine position to – most often – Trendelenburg position. Conclusion No similarities were found that could lead to more rapid diagnosis or more correct management. The staff should keep systemic air embolisms in mind, when more common complications are ruled out, and consider hyperbaric oxygen therapy in case of suspicion.
Pediatric Surgical Pulmonary Valve Replacement Outcomes After Implementation of a Clinical Pathway
Authors: Katz Alex J , Lion Richard P , Martens Timothy , Newcombe Jennifer , Razzouk Anees , Shih Wendy , Amirnovin Rambod , Gordon Brent M 
Published: June 2022

Background Standardization of perioperative care can reduce resource utilization while improving patient outcomes. We sought to describe our outcomes after the implementation of a perioperative clinical pathway for pediatric patients undergoing elective surgical pulmonary valve replacement and compare these results to previously published national benchmarks. Methods A retrospective single-center descriptive study was conducted of all pediatric patients who underwent surgical pulmonary valve replacement from 2017 through 2020, after the implementation of a clinical pathway. Outcomes included hospital length of stay and 30-day reintervention, readmission, and mortality. Results Thirty-three patients (55% female, median age 11 [7, 13] years, 32 [23, 44] kg) were included in the study. Most common diagnosis and indication for surgery was Tetralogy of Fallot (61%) with pulmonary valve insufficiency (88%). All patients had prior cardiac surgery. Median hospital length of stay was 2 [2, 2] days, and longest length of stay was three days. There were no 30-day readmissions, reinterventions, or mortalities. Median follow-up time was 19 [9, 31] months. Conclusions Formalization of a perioperative surgical pulmonary valve replacement clinical pathway can safely promote short hospital length of stay without any short-term readmissions or reinterventions, especially when compared with previously published benchmarks. Such formalization enables the dissemination of best practices to other institutions to reduce hospital length of stay and limit costs.
Surgical Treatment Following Stent Angioplasty for High-Risk Neonates With Critical Coarctation of the Aorta
Authors: Grieshaber Philippe , Merbecks Moritz , Jaschinski Christoph , Fonseca Elizabeth , Arnold Raoul , Karck Matthias , Gorenflo Matthias , Loukanov Tsvetomir 
Published: June 2022

Background Neonatal coarctation of the aorta (CoA) is primarily treated by surgical repair. However, under certain high-risk constellations, initial stent angioplasty may be considered followed by surgical repair. We report our experience with this staged approach. Methods: All patients undergoing surgical CoA repair following prior stenting at our institution between January 2011 and December 2019 were included in this retrospective analysis. The patients were classified to be at high risk because of cardiogenic shock, associated complex cardiac malformations, neonatal infection, necrotizing enterocolitis, and extracardiac conditions, respectively. Outcomes were analyzed and compared with neonates who underwent surgical CoA repair without prior stenting in the same observation period. Results Twenty-six neonates received stent implantation at a median age of 20 days (IQR 9-33 days). Subsequent surgical repair was conducted at an age of 4.2 months (IQR 3.2-6.1 months) with a median body weight of 5.6 kg (IQR 4.5-6.5 kg). Cardiopulmonary bypass was applied in 96% of cases. Extended end-to-end anastomosis was possible in 11 patients. Extended reconstruction with patch material was necessary in the remaining patients. One fatality (3.8%) occurred 33 days postoperatively. At a median follow-up of 5.2 years after initial stenting, all remaining patients were alive; 15/25 patients (60%) were free from re-intervention. Of note, re-intervention rates were comparable in neonates (n = 76) who were operated on with native CoA (28/74 patients; 38%; P = .67). Conclusions Neonatal stent angioplasty for CoA results in increased complexity of the subsequent surgical repair. Nevertheless, this staged approach allows to bridge high-risk neonates to later surgical repair with reduced perioperative risk and acceptable midterm outcomes.
Fontan Palliation in Patients with Heterotaxy Syndrome: A Five Decade Experience
Authors: Stephens Elizabeth H. , Graham Gabriel , Dearani Joseph A. , Niaz Talha , Cetta Frank 
Published: June 2022

Background Patients with heterotaxy syndromes (right and left atrial isomerism) are at high risk of poor outcomes after single-ventricle palliation. However, the long-term outcomes and specific parameters associated with poor outcomes are incompletely understood. Methods A retrospective review was performed of all patients with atrial isomerism who had a Fontan at our institution from 1973 to 2020. Standard demographic, as well as pre-, peri-, and postoperative parameters were collected. Features and outcomes of patients with polysplenia were compared to asplenia. Outcomes were analyzed for effect during 4 eras: (1: 1973-1984; n = 27), (2: 1985-1994; n = 93), (3: 1995-2004; n = 28), and (4: 2005-2020; n = 10). Results Of the 1176 patients who had a Fontan operation, 158 (14%) had a heterotaxy syndrome. The median age at the time of Fontan was 8 (9) years. Early mortality was 20% and was greater in patients with asplenia compared to polysplenia (27% vs. 12%, p = .019). But it substantially improved over time (61% in era 1 vs. 7%-10% in the more recent eras ( p < .001)), as did transplant-free survival (22% at 10 years in era 1 vs. 88% in era 4, p < .001). Transplant-free survival was significantly lower in patients with asplenia versus those with polysplenia ( p = .014), and patients with heterotaxy had lower survival than nonheterotaxy ( p = .01). This was largely due to the asplenia group ( p < .001) (hazard ratio = 3.05, p = .007). Conclusions After Fontan operation, patients with heterotaxy, particularly asplenia, continue to demonstrate worse transplant-free survival than nonheterotaxy patients. Early mortality and long-term transplant-free survival have improved in more recent eras.
Surgical Outcomes in Children With Partial and Transitional Atrioventricular Septal Defect
Authors: Nakayama Yuki , Shinkawa Takeshi , Hoki Ryogo , Kobayashi Kei , Yoshida Hisashi , Sato Yasuto , Niinami Hiroshi 
Published: June 2022

Background This study aimed to evaluate the long-term outcomes of partial and transitional atrioventricular septal defect repair, focusing on left atrioventricular valve reoperation. Methods We conducted a retrospective review of 104 children who underwent partial or transitional atrioventricular septal defect repair between August 1983 and January 2021. The major outcomes included patient survival and left atrioventricular valve reoperation. Results Median age at repair was 4.0 (0.1-17.0) years, with 17 patients being infants (age ≤ 1 year; 16.3%). All but eight patients (92.3%) underwent left atrioventricular valve cleft closure. After initial repair, there were 18 cases of moderate-to-severe left atrioventricular valve regurgitation (17.3%). Three in-hospital deaths (2.9%) and four late deaths (3.8%) occurred. At follow-up (median 14.3 years), actuarial survival was 95.1% and 93.0% at 1 and 20 years, respectively, and 16 patients (15.4%) had undergone a total of 19 left atrioventricular valve reoperations. Initial repair performed during infancy was associated with significantly higher mortality than a repair performed after infancy (35.3% vs 1.5%, P < .01, hazard ratio = 26.4). On multivariable analysis, repair during infancy was associated with mortality ( P < .01, hazard ratio = 27.4, 95% confidence interval = 2.7-283). Partial or no cleft closure of left atrioventricular valve ( P = .03, hazard ratio = 4.7, 95% confidence interval = 1.2-18.8) and moderate-to-severe left atrioventricular valve regurgitation after repair ( P < .01, hazard ratio = 9.9, 95% confidence interval = 3.0-32.2) were associated with left atrioventricular valve reoperation. Conclusions Partial and transitional atrioventricular septal defect repair outcomes were generally satisfactory. However, repair during infancy had worse survival outcomes, and moderate-to-severe left atrioventricular valve regurgitation after a repair was associated with future left atrioventricular valve reoperation.
Total Anomalous Pulmonary Venous Connection Repair: Single-Center Outcomes in a Lower-Middle Income Region
Authors: Bayya Praveen Reddy , Varghese Shruti , Jayashankar Jessin Puliparambil , Sudhakar Abish , Balachandran Rakhi , Kottayil Brijesh Parayaru , Srimurugan Balaji , Varma Praveen Kerala , Neema Praveen Kumar , Krishna Kumar R. 
Published: June 2022

Background The management of total anomalous pulmonary venous connection (TAPVC) in neonates and infants is resource-intensive. We describe early and follow-up outcomes after surgical repair of isolated TAPVC at a single institution in a resource-limited setting. Methods The data of 316 consecutive patients with isolated TAPVC undergoing repair (January 2010-September 2020) were reviewed. The study setting was a tertiary hospital in southern India that provides subsidized or charitable care. Standard surgical technique was used for repair, circulatory arrest was avoided, and suture-less anastomosis was reserved for small or stenotic pulmonary veins. Surgical and postoperative strategies were directed toward minimizing intensive care unit (ICU) stay. Results 302 (95.6%) patients were infants and 128 patients (40.5%) were neonates; median weight was 3.3 kg (IQR 2.8-4.0 kg). Obstruction of the TAPVC was seen in 176 patients (56%) and pulmonary hypertension in 278 patients (88%). Seventeen (5.4%) underwent delayed sternal closure. The median postoperative ICU stay was 120 h (IQR 96-192 h), mechanical ventilation was 45 h (IQR 24-82 h), and hospital stay was 13 days (IQR 9-17 days). There were three in-hospital deaths (0.9%). Over a median follow-up period of 53.3 months (IQR 22.9-90.4), pulmonary vein restenosis was seen in 32 patients (10.1%) after a mean of 2.2 months (1-6 months). No perioperative risk factors for restenosis were identified. Conclusions Using specific perioperative strategies, it is possible to correct TAPVC with excellent surgical outcomes in low-resource environments. Late pulmonary vein restenosis remains an important complication.
Ten Years of Data Verification: The European Congenital Heart Surgeons Association Congenital Database Audits
Authors: Herbst Claudia , Tobota Zdzislaw , Urganci Erhan , Sarris George , Jacobs Jeffrey P. , Kansy Andrzej , Maruszewski Bohdan 
Published: June 2022

Background Congenital heart surgery databases are tools for internal programmatic evaluation, benchmarking institutional results to multi-institutional aggregate data, and research. Therefore, it is essential to ensure the completeness and accuracy of data. This study analyzes the results of ten years of on-site source data verification of the European Congenital Heart Surgeons Association Congenital Heart Surgery Database (ECHSA CHSD). Methods All data forms verified between 2009 and 2018 were analyzed. The data form consists of 12 data elements: dates of birth, admission, surgery, discharge, and death; weight; case category; cardiopulmonary bypass time; aortic cross-clamp time; validation rules; diagnoses; and procedures. Descriptive data calculation and rates of completeness and accuracy were determined. The trend of error rate of seven centers with ≥5 visits was analyzed. Results Sixty-nine on-site verification visits took place at 17 centers. A total of 26,245 cases were verified; 2,841 of these 26,245 cases (10.8%) showed an error. The total mean error rate of centers for all years was 12.3 ± 2.1%. Rates of completeness and accuracy were 99% and 89.2%, respectively. Coded diagnoses and procedure analysis revealed that 716 (2.7%) and 456 (1.7%) datasets were incorrect, respectively. Rates of completeness and accuracy of dates were 100%, and 97.1%, respectively. Validation fields showed no errors. Conclusion Source data verification is an appropriate tool to determine completeness and accuracy of data. The ECHSA CHSD verification analysis of a ten-year period showed a high level of completeness and accuracy. The verified data of the ECHSA CHSD are well-suited for benchmarking and research.
Temporal profiles of systolic blood pressure variability and neurologic outcomes after endovascular thrombectomy
Authors: Prasad Ayush , Kobsa Jessica , Kodali Sreeja , Bartolome David , Begunova Liza , Quispe-Orozco Darko , Farooqui Mudassir , Zevallos Cynthia , Ortega-Gutiérrez Santiago , Anadani Mohammad , Almallouhi Eyad , Spiotta Alejandro M , Giles James A , Keyrouz Salah G , Kim Joon-Tae , Maier Ilko L , Liman Jan , Psychogios Marios-Nikos , Riou-Comte Nolwenn , Richard Sébastien , Gory Benjamin , Quintero Wolfe Stacey , Brown Patrick A , Fargen Kyle M , Mistry Eva A , Fakhri Hiba , Mistry Akshitkumar , Wong Ka-Ho , Nascimento Fábio A , Kan Peter , de Havenon Adam , Sheth Kevin N , Petersen Nils H 
Published: June 2022

Introduction: Observational studies have found an increased risk of hemorrhagic transformation and worse functional outcomes in patients with higher systolic blood pressure variability (BPV). However, the time-varying behavior of BPV after endovascular thrombectomy (EVT) and its effects on functional outcome have not been well characterized. Patients and methods: We analyzed data from an international cohort of patients with large-vessel occlusion stroke who underwent EVT at 11 centers across North America, Europe, and Asia. Repeated time-stamped blood pressure data were recorded for the first 72 h after thrombectomy. Parameters of BPV were calculated in 12-h epochs using five established methodologies. Systolic BPV trajectories were generated using group-based trajectory modeling, which separates heterogeneous longitudinal data into groups with similar patterns. Results: Of the 2041 patients (age 69 ± 14, 51.4% male, NIHSS 15 ± 7, mean number of BP measurements 50 ± 28) included in our analysis, 1293 (63.4%) had a poor 90-day outcome (mRS ⩾ 3) or a poor discharge outcome (mRS ⩾ 3). We identified three distinct SBP trajectories: low (25%), moderate (64%), and high (11%). Compared to patients with low BPV, those in the highest trajectory group had a significantly greater risk of a poor functional outcome after adjusting for relevant confounders (OR 2.2; 95% CI 1.2–3.9; p = 0.008). In addition, patients with poor outcomes had significantly higher systolic BPV during the epochs that define the first 24 h after EVT ( p < 0.001). Discussion and conclusions: Acute ischemic stroke patients demonstrate three unique systolic BPV trajectories that differ in their association with functional outcome. Further research is needed to rapidly identify individuals with high-risk BPV trajectories and to develop treatment strategies for targeting high BPV.