Psychosocial Impact of Congenital Heart Diseases on Patients and Their Families: A Parent's Perspective

2021 ◽  
pp. 215013512110441
Author(s):  
Christoph Jaschinski ◽  
Vivien Knetsch ◽  
Peter Parzer ◽  
Juliane Meyr ◽  
Brian Schroeder ◽  
...  
Keyword(s):  
Congenital Heart ◽  
Mental Health Problems ◽  
Heart Diseases ◽  
Open Heart Surgery ◽  
Psychosocial Impact ◽  
University Hospital ◽  
Family Burden ◽  
Study Cohort ◽  
Developmental Problems ◽  
Surgical Operations

Background Currently, over 90% of children with congenital heart disease (CHD) survive into adulthood. As a consequence the psychosocial impact on children and their families has become an important outcome measure. Therefore, the goal of this study was to assess the psychosocial impact from a parent's perspective and to identify possible predictors. Methods We included all parents of children who underwent open-heart surgery in the years 2010 and 2011 at the Department of Cardiothoracic Surgery at University Hospital Heidelberg and invited them to complete standardized questionnaires. Psychosocial outcome was measured via parent self- and proxy reporting of family burden (Family Burden Questionnaire, FaBel), health-related quality of life (KidScreen-10), developmental problems (Five-to-Fifteen, FTF), and mental health problems (Strength and Difficulties Questionnaire, SDQ). Results In total, 113 families returned the questionnaires completely (71.5%). The Aristotle Basic Complexity score and the STAT 2020 Score overall did not predict the psychosocial impact, whereas the number of surgical operations did significantly predict psychosocial impact across all domains in this study cohort. Conclusions These data suggest that the number of surgical operations might be a relevant predictor for the long-term psychosocial impact on families suffering from CHD and a potential connecting factor for specialized psychological support. When setting up screening instruments or support programs the entire family must be considered.

scholarly journals Open heart surgery in Nigerian children the need for international and regional collaboration: the Balyesa and Enugu experience

2021 ◽  
Vol 6 (2) ◽  
pp. 044-047
Author(s):  
FA Ujunwa ◽  
AS Ujuanbi ◽  
JM Chinawa ◽  
D Alagoa ◽  
B Onwubere
Keyword(s):  
Success Rate ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Heart Diseases ◽  
Heart Defects ◽  
Open Heart Surgery ◽  
Case Fatality ◽  
Open Heart ◽  
Cardiac Intervention ◽  
Regional Collaboration

Background: Children with congenital heart diseases (CHD) often require palliative or definitive surgical heart interventions to restore cardiopulmonary function. Lack of early cardiac intervention contributes to large numbers of potentially preventable deaths and sufferings among children with such conditions. Objectives: The aim of this study is to highlight our experience and the importance of international and regional collaboration in open heart surgery among children with CHD and capacity building of home cardiac teams in Bayelsa and Enugu States. Materials and Methods: In November 2016, a memorandum of understanding (MOU) was signed between the managements of FMC, Yenagoa, Bayelsa State, UNTH, Enugu and an Italian-based NGO- Pobic Open Heart International for collaboration in the area of free open-heart surgery for children with CHDs and training of home cardiac teams from both institutions either in Nigeria or in Italy. Patients for the program were recruited from Bayelsa and Enugu States with referrals from all over the country with combined screening and selection done in UNTH. Selected patients were operated on and funded free of charge by the Italian NGO. Hands-on training of the home cardiac teams and cardiac intervention was done twice yearly in Nigeria. Result: From inception of the program in November, 2016 to May, 2019 a total of 47 children (21 Males, 26 Females; Age range 6 months to 14 yrs) with various types of congenital heart defects have benefitted from the program with 41 surgeries done in UNTH & 6 in Italy (complex pathologies) at no cost to the recipients. Also, home cardiac teams from UNTH and FMC, Yenagoa have gained from on-site capacity training & retraining from the Italian cardiac team both in Nigeria & in Italy. The Success rate was 95.7% (44) and Case Fatality rate was 4.3% (2). Conclusion: There is a great efficacy in early cardiac intervention. This is with respect to a high success rate and minimal Case Fatality seen in this study. This was achieved through Regional and international collaboration.

scholarly journals Relationship Between Intraoperative Cerebral Desaturation and Postoperative Complications In Pediatric Patients Undergoing Congenital Heart Surgery: Prospective Cohort Study

2021 ◽  
Author(s):  
Cengiz Han Sahutoğlu ◽  
Seden Kocabaş ◽  
Fatma Zekiye Askar
Keyword(s):  
Postoperative Complications ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Multiple Logistic Regression Analysis ◽  
Open Heart Surgery ◽  
Congenital Heart Surgery ◽  
University Hospital ◽  
Alarm Limit ◽  
Cerebral Desaturation ◽  
Group 1

Objective: In this study, we aimed to investigate the incidence of cerebral desaturation and the possible relationship between intraoperative cerebral desaturation and postoperative complications. Methods: A prospective, observational study was performed 115 patients under 18 years of age who required open heart surgery in a university hospital. Cerebral desaturation was defined as a 25% decrease in cerebral saturation (low alarm limit) when compared with the basal value. Duration (second) was referred to the amount of time the patient stays below low alarm limit. Depth (%) was referred to gap between the patient’s cerebral regional oxygen saturation (rSO2) level and the rSO2 low alarm limit. The cerebral desaturation score was calculated using the %*seconds. The patients were divided into two groups: group 1 (desaturation score >3000 %sec) and group 2 (desaturation score ≤ 3000 %sec). The groups were compared in terms of demographic data, intraoperative and postoperative variables, postoperative complications, and duration of intensive care and hospital stays. Results: In the study, 59 patients (51.3%) were male and 28 patients (24.3%) had cyanotic heart disease. A total of 55 patients (47.8%) experienced over 3000 %sec desaturation. Postoperative complications were found to be increased in group 1 (71% vs 3.3%; χ²=57.119, p<0.001). In the multiple logistic regression analysis, desaturation score>3000 %sec (p<0.001), low body surface area (p=0.001) and prolonged cardiopulmonary bypass (p=0.006) were found to be associated with postoperative complications. Conclusion: In patients undergoing congenital heart surgery, cerebral desaturation score >3000 %sec is associated with a negative effect on patient prognosis.

scholarly journals Attention Deficit Hyperactivity Disorder (ADHD) in Patients With Congenital Heart Disease (CHD)

2021 ◽  
Author(s):  
Hassan Mottaghi Moghaddam Shahri ◽  
Mahboubeh Eslamzadeh ◽  
Aazam Sadat Heydari Yazdi
Keyword(s):  
Attention Deficit Hyperactivity Disorder ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Attention Deficit ◽  
Congenital Heart ◽  
Heart Diseases ◽  
Developmental Problems ◽  
Hyperactivity Disorder ◽  
Increased Risk ◽  
The Mean

Abstract BackgroundIt is established that children with congenital heart disease (CHD) are more susceptible for suffering deficiencies in intellectual functioning, developmental problems, and academic performance difficulties. Neurodevelopmental disabilities, particularly executive function impairments, are currently the most prevalent long-term morbidity in the population with CHD. The aim of this study was to investigate the frequency of Attention deficit hyperactivity disorder (ADHD) in children with CHD. MethodsThis was a retrospective cohort study, which was performed between 2002-2018 in patients with CHD referred to Imam Reza hospital, Mashhad, Iran. Using the census method, all files for which ADHD diagnosis has been made according to DSM-IV or DSM-V criteria should be included in the study. Diagnosis of CHD was performed clinically and using an echocardiographic machine by an experienced pediatric cardiologist. Heart diseases were divided into two important (major) and non-important (minor) categories based on the need for follow-up and intervention. Demographic, clinical and para-clinical data of patients as well as the type of heart intervention were collected and analyzed.Results136 patients were enrolled in the study. The mean age of participants in the study was 59.12± 45.84 months at the time of diagnosis. Abnormal electroencephalogram (EEG) was reported in three cases (2.2%). There was significant correlation between prematurity and developmental delay (P=0.01). The mean of age was significantly different in patients with minor rather than patients with major cardiac disorders (P<0.05). The prevalence of ADHD in CHD population was high (31.6%).ConclusionThis study demonstrated that children born with CHD are at increased risk of suffering from ADHD.

Investigation of anxiety, depression and perceived caregiving burden in parents of pediatric patients undergoing open heart surgery and being followed up in intensive care

2021 ◽  
Author(s):  
Abdullah Arif Yılmaz ◽  
Mehmet Fatih Üstündağ ◽  
Yasemin Yavuz ◽  
Fatma Ukil Işıldak ◽  
Ömer Faruk Şavluk ◽  
...  
Keyword(s):  
Intensive Care ◽  
Trait Anxiety ◽  
Congenital Heart ◽  
Maternal Education ◽  
Heart Surgery ◽  
Heart Diseases ◽  
Open Heart Surgery ◽  
Clinical Manifestations ◽  
Pediatric Cardiovascular Surgery ◽  
The Mean

Objectives: This study aims to investigate the relationship between anxiety levels and perceived caregiver burden in mothers of children who had undergone Congenital Heart Disease Surgery (CHDS) and who were followed up in the intensive care unit with the surgical type and clinical variables applied. Patients and Methods: The study was conducted with the mothers of both patient groups who underwent Palliative Surgery (PS) (n:32) or Corrective (Biventricular) Repair (CR) (n:35) in the Pediatric Cardiovascular Surgery clinic of Istanbul Koşuyolu High Specialty Educational and Research Hospital. Sociodemographic-Clinical Data Form, Beck Depression Inventory (BDI), Standardized Mini-Mental Test, State-Trait Anxiety Inventory (STAI TX I-II), and Zarit Burden Interview (ZBI) were applied to the parents. Results: The rate of interventional birth was higher in the PS group whereas there was no difference between the PS and CR groups in terms of age, gender, birth weights, and presence of additional diseases (p: 0.001). There was no difference between maternal education levels and pregnancy duration. This difference was not significant even though the mean age of the mothers in the CR group was higher compared to the PS group. The mean STAI-S scores of the PS group (State Anxiety) were lower than the CR group, and the STAI-T scores of the PS group (Trait Anxiety) were higher. The ZBI scores were significantly higher in the PS group (p: 0.03) Conclusion: Congenital heart diseases and surgical interventions, as a result, are a major source of distress for affected families. Mothers are mainly affected by this situation. Changes in the mental status of the caregiver may have serious adverse effects on the operated child at every stage of the disease. Caregiving in parents is perceived as a burden and increased anxiety leads to different psychiatric clinical manifestations. Therefore, it is recommended that parents of children who have undergone congenital cardiac surgery receive routine psychiatric support from the early stages of the disease.

scholarly journals Naujagimių įgimtų širdies ydų chirurgija: Vilniaus universiteto Širdies chirurgijos centro patirtis

2007 ◽  
Vol 5 (3) ◽  
pp. 0-0
Author(s):  
Virgilijus Lebetkevičius ◽  
Virgilijus Tarutis ◽  
Rita Sudikienė ◽  
Daina Liekienė ◽  
Kęstutis Lankutis ◽  
...  
Keyword(s):  
Cardiopulmonary Bypass ◽  
Congenital Heart Defects ◽  
Congenital Heart ◽  
Heart Surgery ◽  
Heart Diseases ◽  
Heart Defects ◽  
University Hospital ◽  
Congenital Heart Diseases ◽  
Corrective Surgery ◽  
Vilnius University

Virgilijus Lebetkevičius1, Virgilijus Tarutis1, Rita Sudikienė1, Daina Liekienė1, Kęstutis Lankutis1, Giedrė Nogienė1, Vidmantas Jonas Žilinskas1, Vytautas Sirvydis1, Kęstutis Versockas2, Žydrė Jurgelienė2, Asta Bliūdžiūtė21 Vilniaus universiteto Širdies chirurgijos centras, Santariškių g. 2, LT-08661 Vilnius2 Vilniaus universiteto ligoninės Santariškių klinikų Anesteziologijos,intensyviosios terapijos ir skausmo gydymo centras, Santariškių g. 2, LT-08661 VilniusEl paštas: [email protected] Tikslas Apžvelgti Vilniaus universiteto Širdies chirurgijos centro naujagimių įgimtų širdies ydų chirurgijos rezultatus, juos įvertinti ir padaryti išvadas. Metodai Nuo 1964 iki 2006 metų Vilniaus universiteto Širdies chirurgijos centre atlikta 5066 įgimtų širdies ydų operacijos vaikams iki 18 metų. Naujagimių dalis – 307 operacijos (6,1%). Korekcijos naujagimiams atliktos naudojant dirbtinę kraujo apytaką (DKA) ir be jos. Rezultatai Įgimtų širdies ydų operacijos suskirstytos į keturis etapus. 1974–1990 metai (1974 m. atlikta pirmoji širdies operacija naujagimiui). Tuo laikotarpiu mirštamumas buvo 100%. 1991–1995 metais – mirštamumas 71%, 1996–2000 metais – mirštamumas 68%, 2001–2006 metais – mirštamumas 38%, 2006 metais mirštamumas – 22%. Išvados Analizuojant naujagimių širdies chirurgijos rezultatus, pažymėtina, kad per pastaruosius metus mirštamumas sumažėjo iki priimtinų dydžių, kurie artėja prie kitų pasaulio širdies chirurgijos klinikų rezultatų. Gerėjant visam kompleksui tyrimo, gydymo, slaugymo priemonių visose grandyse (kardiologija, anesteziologija-reanimatologija, chirurgija), mirštamumą įmanoma sumažinti iki minimalaus. Pagrindiniai žodžiai: įgimtos širdies ydos, širdies chirurgija, naujagimiai Corrective surgery of congenital heart defects: experience of Vilnius University Heart Surgery Centre Virgilijus Lebetkevičius1, Virgilijus Tarutis1, Rita Sudikienė1, Daina Liekienė1, Kęstutis Lankutis1, Giedrė Nogienė1, Vidmantas Jonas Žilinskas1, Vytautas Sirvydis1, Kęstutis Versockas2, Žydrė Jurgelienė2, Asta Bliūdžiūtė21 Vilnius University, Heart Surgery Centre, Santariškių str. 2, LT-08661 Vilnius2 Vilnius University Hospital „Santariškių klinikos“, Anaesthesiology Intensive Careand Pain Management Centre, Santariškių str. 2, LT-08661 VilniusE-mail: [email protected] Objective To access the outcome and mortality trend in newborns undergoing corrective surgery for congenital heart defect. Methods We reviewed the hospital records on 307 neonates under 30 days of life, who had congenital heart defects operated on at the Heart Surgery Center of Vilnius University, Lithuania, in 1994 through 2006. Early and late mortality results were analyzed. Results From January 1974 to 2006, 307 neonates with congenital heart disease underwent surgical repair at Heart Surgery Clinic of Vilnius University. It came to 6.1% of all 5066 procedures of the congenital heart diseases performed. The number of neonate operations considerably increased in the later years, because a special department with proper technique was established. 144 neonates underwent surgery repair with cardiopulmonary bypass and 163 neonates were operated on without cardiopulmonary bypass. The mean age of the patients was 11.8 ± 0.28 days. There were 113 girls and 194 boys. Conclusions Mortality from 71% in 1991–1995 dropped to 38% in 2001–2006 and 22% in 2006. Key words: congenital heart diseases, cardiosurgery, neonates

scholarly journals Prenatal Detection of Congenital Heart Diseases: One-Year Survey Performing a Screening Protocol in a Single Reference Center in Brazil

2014 ◽  
Vol 2014 ◽  
pp. 1-5 ◽  
Author(s):  
Luciane Alves Rocha ◽  
Edward Araujo Júnior ◽  
Liliam Cristine Rolo ◽  
Fernanda Silveira Bello Barros ◽  
Karina Peres da Silva ◽  
...  
Keyword(s):  
Congenital Heart ◽  
Fetal Heart ◽  
Heart Diseases ◽  
University Hospital ◽  
High Rate ◽  
Congenital Heart Diseases ◽  
Increased Risk ◽  
Tertiary Center ◽  
Screening Protocol ◽  
Complex Cases

Objective. To describe the experience of a tertiary center in Brazil to which patients are referred whose fetuses are at increased risk for congenital heart diseases (CHDs).Methods. This was a cross-sectional observational study. The data was collected prospectively, during the year 2012, through a screening protocol of the fetal heart adapted from the International Society of Ultrasound in Obstetrics and Gynecology (ISUOG) guideline. We performed a fetal echocardiogram screening for all pregnant women who were referred to the fetal cardiology outpatient obstetrics clinic of a university hospital. The exams were classified as normal or abnormal. The cases considered abnormal were undergone to a postnatal echocardiogram. We categorized the abnormal fetal heart according to severity in “complex,” “significant,” “minor,” and “others.”Results. We performed 271 fetal heart screening. The incidence of abnormal screenings was 9.96% (27 fetuses). The structural CHD when categorized due to severity showed 48.1% (n=13) of “complex” cases, 18.5% (n=5) “significant” cases, and 7.4% (n=2) “minor” cases. The most common referral reason was by maternal causes (67%) followed by fetal causes (33%). The main referral indication was maternal metabolic disease (30%), but there was just one fetus with CHD in such cases (1.2%). CHDs were found in 19/29 fetuses with suspicion of some cardiac abnormality by obstetrician (65.5%).Conclusion. We observed a high rate of CHD in our population. We also found that there was higher incidence of complex cases.

Sign in / Sign up

Export Citation Format

Share Document