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Patient reported outcomes congenital heart

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https://www.readbyqxmd.com/read/28420661/person-centred-transition-programme-to-empower-adolescents-with-congenital-heart-disease-in-the-transition-to-adulthood-a-study-protocol-for-a-hybrid-randomised-controlled-trial-stepstones-project
#1
Mariela Acuña Mora, Carina Sparud-Lundin, Ewa-Lena Bratt, Philip Moons
INTRODUCTION: When a young person grows up, they evolve from an independent child to an empowered adult. If an individual has a chronic condition, this additional burden may hamper adequate development and independence. Transition programmes for young persons with chronic disorders aim to provide the necessary skills for self-management and participation in care. However, strong evidence on the effects of these interventions is lacking. Therefore, as part of the STEPSTONES project (Swedish Transition Effects Project Supporting Teenagers with chrONic mEdical conditionS), we propose a trial to assess the effectiveness of a structured, person-centred transition programme to empower adolescents with congenital heart disease in the transition to adulthood...
April 17, 2017: BMJ Open
https://www.readbyqxmd.com/read/28402072/congenital-lung-agenesis-incidence-and-outcome-in-the-north-of-england
#2
Matthew Thomas, Nic Robertson, Nicola Miller, Judith Rankin, Michael McKean, Malcom Brodlie
BACKGROUND: Unilateral lung agenesis is an uncommon congenital abnormality, with a lack of reported accurate incidence estimates. Prognosis is also uncertain, with older literature reporting poor outcomes. METHODS: The North of England register of congenital anomalies (Northern Congenital Abnormality Survey) records cases of congenital anomalies to mothers' resident in the region. We used the register to identify all patients with congenital lung agenesis born between 2004 and 2013 to calculate an accurate incidence estimate and report clinical outcomes with contemporary management...
April 12, 2017: Birth Defects Res
https://www.readbyqxmd.com/read/28376417/successful-endovascular-coil-embolization-in-an-elder-and-asymptomatic-case-of-anomalous-systemic-arterial-supply-to-the-normal-basal-segment
#3
Yuichiro Machida, Nozomu Motono, Takuma Matsui, Katsuo Usuda, Hidetaka Uramoto
INTRODUCTION: An anomalous systemic arterial supply to the normal basal segment without sequestration is a rare congenital vascular malformation. The discovery age is relatively young, and the most common clinical symptom is hemoptysis due to pulmonary hypertension or heart failure. We herein describe a case of endovascular embolization of in an elderly and asymptomatic patient with an anomalous systemic arterial supply to the normal basal segment. PRESENTAITION OF CASE: An 80-year-old male was referred to our hospital due to an abnormal chest shadow...
March 22, 2017: International Journal of Surgery Case Reports
https://www.readbyqxmd.com/read/28373976/treatment-and-patient-reported-outcome-in-children-with-hirschsprung-disease-and-concomitant-congenital-heart-disease
#4
Johan Hasserius, Josefine Hedbys, Christina Graneli, Kristine Hagelsteen, Pernilla Stenström
Purpose. Congenital heart disease (CHD) is reported to be associated with Hirschsprung disease (HD). The aim was to evaluate any differences between children with HD with and without CHD, respectively, with regard to patient characteristics, medical care, and patient reported bowel function. Method. This is a retrospective chart study and a cross-sectional long-term follow-up of patients older than 4 years old, including all children with HD operated on with transanal endorectal pull-through (TERPT) at a tertiary center of pediatric surgery...
2017: BioMed Research International
https://www.readbyqxmd.com/read/28341902/red-flags-for-maltese-adults-with-congenital-heart-disease-poorer-dental-care-and-less-sports-participation-compared-to-other-european-patients-an-approach-is-substudy
#5
Maryanne Caruana, Silke Apers, Adrienne H Kovacs, Koen Luyckx, Corina Thomet, Werner Budts, Maayke Sluman, Katrine Eriksen, Mikael Dellborg, Malin Berghammer, Bengt Johansson, Alexandra Soufi, Edward Callus, Philip Moons, Victor Grech
Studies in recent years have explored lifestyle habits and health-risk behaviours in adult congenital heart disease (ACHD) patients when compared to controls. The aim of this study was to investigate differences in lifestyle habits between Maltese and other European ACHD patients. Data on alcohol consumption, cigarette smoking, substance misuse, dental care and physical activity collected in 2013-2015 during "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study" (APPROACH-IS) were analysed...
March 24, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28280627/minimally-invasive-ivor-lewis-esophagectomy-for-esophageal-cancer-with-right-aortic-arch
#6
Jeremy Linson, Michael Latzko, Bestoun Ahmed, Ziad Awad
Right aortic arch (RAA) is a rare congenital vascular abnormality in which the aorta descends in the right thorax and encircles the esophagus. Historically, esophagectomy for patients for RAA is done through a left thoracotomy as exposure and mobilization of the esophagus is difficult through a right thoracotomy. A 73-year-old male was found to have an esophageal adenocarcinoma. Endoscopic ultrasound showed a T3N0 lesion in the lower third of the esophagus. PET CT demonstrated a circumferential lesion without evidence of distant disease or involved lymph nodes and a RAA which was not associated with congenital heart disease or symptoms...
February 2017: Journal of Gastrointestinal Oncology
https://www.readbyqxmd.com/read/28274955/physical-activity-in-adults-with-congenital-heart-disease-and-associations-with-functional-outcomes
#7
Jan Müller, Tamara Amberger, Anika Berg, Daniel Goeder, Julia Remmele, Renate Oberhoffer, Peter Ewert, Alfred Hager
OBJECTIVE: Improved survival has yielded to growing importance of functional outcome measures in patients with congenital heart disease (CHD). This study applied the International Physical Activity Questionnaire (IPAQ) to assess self-reported physical activity (PA) in patients with CHD and their association with exercise capacity and health-related quality of life (HrQoL). PATIENTS AND METHODS: Prior to cardiopulmonary exercise testing (CPET), 786 consecutive patients (335 female, 31...
March 8, 2017: Heart: Official Journal of the British Cardiac Society
https://www.readbyqxmd.com/read/28244293/epidemiology-of-biliary-atresia-in-korea
#8
Kyung Jae Lee, Ju Whi Kim, Jin Soo Moon, Jae Sung Ko
Biliary atresia (BA) is the major cause of cholestasis and the leading indication for liver transplantation (LT). However, the incidence of BA in Korea has not been reported. The aim of this study was to investigate the incidence and clinical outcomes of BA in Korea. We used the Korean universal health insurance database and extracted data regarding BA patients younger than 18 years of age admitted between 2011 and 2015. The incidence of BA was calculated by dividing the number of BA patients by the number of live births...
April 2017: Journal of Korean Medical Science
https://www.readbyqxmd.com/read/28218213/surgical-treatment-of-double-outlet-right-ventricle-complicated-by-pulmonary-hypertension
#9
Qing-Yu Wu, Dong-Hai Li, Hong-Yin Li, Ming-Kui Zhang, Zhong-Hua Xu, Hui Xue
BACKGROUND: Double outlet right ventricle (DORV) is a group of complex congenital heart abnormalities. Preoperative pulmonary hypertension (PH) is considered an important risk factor for early death during the surgical treatment of DORV. The aim of this study was to report our experience on surgical treatment of DORV complicated by PH. METHODS: From June 2004 to November 2016, 61 patients (36 males and 25 females) aged 2 weeks to 26 years (median: 0.67 years and interquartile range: 0...
February 20, 2017: Chinese Medical Journal
https://www.readbyqxmd.com/read/28215417/prenatal-diagnosis-of-the-criss-cross-heart
#10
Prasad Ravi, Deborah Fruitman, Lindsay Mills, Timothy Colen, Lisa K Hornberger
We sought to describe the prenatal features and postnatal outcomes of the "criss-cross heart" (CCH) with crossing atrioventricular connections as encountered in 5 cases and to review the literature regarding fetal diagnoses of this lesion. We reviewed the clinical history and fetal echocardiograms of 5 patients with a diagnosis of CCH encountered in our institution from 2010 to 2015. Affected pregnancies were identified through the University of Alberta fetal cardiology database. Fetal and postnatal echocardiograms, prenatal and postnatal clinical records, autopsy, and surgical reports were reviewed...
March 15, 2017: American Journal of Cardiology
https://www.readbyqxmd.com/read/28214968/piloting-the-use-of-patient-specific-cardiac-models-as-a-novel-tool-to-facilitate-communication-during-cinical-consultations
#11
Giovanni Biglino, Despina Koniordou, Marisa Gasparini, Claudio Capelli, Lindsay-Kay Leaver, Sachin Khambadkone, Silvia Schievano, Andrew M Taylor, Jo Wray
This pilot study aimed to assess the impact of using patient-specific three-dimensional (3D) models of congenital heart disease (CHD) during consultations with adolescent patients. Adolescent CHD patients (n = 20, age 15-18 years, 15 male) were asked to complete two questionnaires during a cardiology transition clinic at a specialist centre. The first questionnaire was completed just before routine consultation with the cardiologist, the second just after the consultation. During the consultation, each patient was presented with a 3D full heart model realised from their medical imaging data...
February 18, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28199782/social-independence-of-adult-congenital-heart-disease-patients-in-japan
#12
Ryota Ochiai, Yukitaka Ikeda, Hitoshi Kato, Isao Shiraishi
BACKGROUND: As treatment outcomes for congenital heart disease (CHD) have improved, the social independence of adult CHD patients has become a key goal. The aims of this study were therefore to (i) determine the relationship between social independence and psychological profile, and (ii) identify patient anxieties, difficulties, and demands related to life in society. METHODS: A total of 143 patients aged ≥15 years with physical disability certificates were selected using a questionnaire distributed by a patients' association...
February 15, 2017: Pediatrics International: Official Journal of the Japan Pediatric Society
https://www.readbyqxmd.com/read/28185817/outcomes-following-melody-transcatheter-pulmonary-valve-implantation-for-right-ventricular-outflow-tract-dysfunction-in-repaired-congenital-heart-disease-first-reported-australian-single-centre-experience
#13
Ryan Markham, Abhinay Challa, Stephen Kyranis, Mugur Nicolae, Dale Murdoch, Michael Savage, Theresa Malpas, Dorothy J Radford, Christian Hamilton-Craig, Darren L Walters
BACKGROUND: Transcatheter pulmonary valve implantation (TPVI) with the Melody® transcatheter pulmonary valve (TPV) has demonstrated good haemodynamic and clinical outcomes in the treatment of right ventricular outflow tract (RVOT) conduit dysfunction in patients with repaired congenital heart disease CHD. We present the first Australian single centre experience of patients treated with Melody TPV. METHOD: A prospective, observational registry was developed to monitor clinical and haemodynamic outcomes in patients with RVOT dysfunction treated with the Melody TPV (Medtronic Inc, Minneapolis, United States)...
January 24, 2017: Heart, Lung & Circulation
https://www.readbyqxmd.com/read/28183396/denheart-differences-in-physical-and-mental-health-across-cardiac-diagnoses-at-hospital-discharge
#14
Selina Kikkenborg Berg, Trine Bernholdt Rasmussen, Lars Thrysoee, Astrid Lauberg, Britt Borregaard, Anne Vinggaard Christensen, Ola Ekholm, Knud Juel, Jette Rolf Svanholm
OBJECTIVE: To describe: (i) differences in patient reported physical and mental health outcomes at hospital discharge between a) cardiac diagnostic groups and b) cardiac patients and a national representative reference population and to describe (ii) in-hospital predicting factors for patient reported outcomes. METHODS: A national cross-sectional survey combined with national register data. From April 2013 to April 2014 all patients (n=34,564) discharged or transferred from one of five Danish Heart Centres were invited to participate...
March 2017: Journal of Psychosomatic Research
https://www.readbyqxmd.com/read/28167078/ablation-of-ventricular-tachycardia-in-congenital-and-infiltrative-heart-disease
#15
REVIEW
Adrianus P Wijnmaalen, Katja Zeppenfeld
Radiofrequency catheter ablation (RFCA) is an important treatment modality to prevent ventricular tachycardia (VT) recurrence in patients with repaired congenital heart disease. Identification and ablation of anatomic isthmuses has improved acute ablation outcome with excellent VT-free survival in those with preserved biventricular function. Reports on RFCA for VT in patients with infiltrative disease are sparse and cardiac sarcoidosis seems to be the most prevalent cause for ventricular arrhythmia. Patients with active and ongoing inflammation are at high risk for VT recurrence...
March 2017: Cardiac Electrophysiology Clinics
https://www.readbyqxmd.com/read/28148729/psychiatric-disorders-in-adolescents-with-single-ventricle-congenital-heart-disease
#16
David R DeMaso, Johanna Calderon, George A Taylor, Jennifer E Holland, Christian Stopp, Matthew T White, David C Bellinger, Michael J Rivkin, David Wypij, Jane W Newburger
BACKGROUND AND OBJECTIVES: Mental health outcomes for survivors of critical congenital heart disease (CHD) remain under-investigated. We sought to examine psychiatric disorders and psychosocial functioning in adolescents with single ventricle CHD and to explore whether patient-related risk factors predict dysfunction. METHODS: This cohort study recruited 156 adolescents with single ventricle CHD who underwent the Fontan procedure and 111 healthy referents. Participants underwent comprehensive psychiatric evaluation including a clinician-rated psychiatric interview and parent- and self-report ratings of anxiety, disruptive behavior, including attention-deficit/hyperactivity disorder (ADHD), and depressive symptoms...
March 2017: Pediatrics
https://www.readbyqxmd.com/read/28148316/design-and-initial-results-of-a-programme-for-routine-standardised-longitudinal-follow-up-after-congenital-heart-surgery
#17
Sara K Pasquali, Chitra Ravishankar, Jennifer C Romano, Kristin Kane, Suzanne Viers, Andrea Kennedy, Nancy Burnham, Ray Lowery, Karen Uzark, Lauren Retzloff, Jonathon J Rome, Joseph W Rossano, John R Charpie, Thomas L Spray, Michael G Gaies, Richard G Ohye, J William Gaynor
BACKGROUND: With improvements in early survival following congenital heart surgery, it has become increasingly important to understand longer-term outcomes; however, routine collection of these data is challenging and remains very limited. We describe the development and initial results of a collaborative programme incorporating standardised longitudinal follow-up into usual care at the Children's Hospital of Philadelphia (CHOP) and University of Michigan (UM). METHODS: We included children undergoing benchmark operations of the Society of Thoracic Surgeons...
December 2016: Cardiology in the Young
https://www.readbyqxmd.com/read/28108550/cardiac-resynchronization-therapy-in-adults-with-congenital-heart-disease
#18
Zeliha Koyak, Joris R de Groot, Ahmed Krimly, Tara M Mackay, Berto J Bouma, Candice K Silversides, Erwin N Oechslin, Ulas Hoke, Lieselot van Erven, Werner Budts, Isabelle C Van Gelder, Barbara J M Mulder, Louise Harris
AIMS: In adults with congenital heart disease (CHD) heart failure is one of the leading causes of morbidity and mortality but experience with and reported outcome of cardiac resynchronization therapy (CRT) is limited. We investigated the efficacy of CRT in adults with CHD. METHODS AND RESULTS: This was a retrospective study including 48 adults with CHD who received CRT since 2003 in four tertiary referral centres. Responders were defined as patients who showed improvement in NYHA functional class and/or systemic ventricular ejection fraction by at least one category...
January 20, 2017: Europace: European Pacing, Arrhythmias, and Cardiac Electrophysiology
https://www.readbyqxmd.com/read/28100970/sickle-cell-disease-with-cyanotic-congenital-heart-disease-long-term-outcomes-in-5-children
#19
Glen J Iannucci, Olufolake A Adisa, Matthew E Oster, Michael McConnell, William T Mahle
Sickle cell disease is a risk factor for cerebrovascular accidents in the pediatric population. This risk is compounded by hypoxemia. Cyanotic congenital heart disease can expose patients to prolonged hypoxemia. To our knowledge, the long-term outcome of patients who have combined sickle cell and cyanotic congenital heart disease has not been reported. We retrospectively reviewed patient records at our institution and identified 5 patients (3 girls and 2 boys) who had both conditions. Their outcomes were uniformly poor: 4 died (age range, 12 mo-17 yr); 3 had documented cerebrovascular accidents; and 3 developed ventricular dysfunction...
December 2016: Texas Heart Institute Journal
https://www.readbyqxmd.com/read/28077509/the-basic-approach-a-single-centre-experience-with-a-cost-reducing-model-for-paediatric-cardiac-extracorporeal-membrane-oxygenation
#20
Massimo A Padalino, Chiara Tessari, Alvise Guariento, Anna C Frigo, Vladimiro L Vida, Andrea Marcolongo, Fabio Zanella, Michael J Harvey, Ravi R Thiagarajan, Giovanni Stellin
OBJECTIVES: Extracorporeal membrane oxygenation (ECMO) is a lifesaving but expensive therapy in terms of financial, technical and human resources. We report our experience with a 'basic' ECMO support model, consisting of ECMO initiated and managed without the constant presence of a bedside specialist, to assess safety, clinical outcomes and financial impact on our health system. METHODS: We did a retrospective single-centre study of paediatric cardiac ECMO between January 2001 and March 2014...
April 1, 2017: Interactive Cardiovascular and Thoracic Surgery
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