Using Telemedicine to Improve the Quality of Life of Parents of Infants With CHD Surgery After Discharge

2021 ◽  
Author(s):  
Qi-Liang Zhang ◽  
Yu-Qing Lei ◽  
Jian-Feng Liu ◽  
Hua Cao ◽  
Qiang Chen
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Intervention Group ◽  
Control Group ◽  
Educational Levels ◽  
Education Levels

Abstract Background The purpose of this study was to investigate the effect of using telemedicine to improve the quality of life of parents of infants with congenital heart disease surgery after discharge. Methods A prospective randomized controlled study was conducted in a provincial hospital in China from November 2020 to April 2021 to compare the quality of life of parents of infants with congenital heart disease surgery after discharge between the WeChat follow-up group and the outpatient follow-up group. A total of 84 patients (42 in each group) and 168 parents (84 in each group) participated in this study. Results One month after discharge, the SAS and SDS scores of parents in the intervention group were significantly lower than those in the control group (P<0.05). Compared with the SAS and SDS scores at discharge, the scores of parents in the intervention group were significantly lower at one month after discharge (P<0.05), while the scores of parents in the control group were similar at one month after discharge (P>0.05). At discharge, in both the intervention group and the control group, the SAS and SDS scores of the mothers were higher than those of the fathers (P<0.05). One month after discharge, in the control group, the SAS and SDS scores of the mothers were higher than those of the fathers (P<0.05). One month after discharge, in the intervention group, the SAS and SDS scores of the mothers were similar to those of the fathers (P>0.05). The comparison of the SAS and SDS scores of parents with different education levels showed that in both the intervention group and control group, the lower the parents’ educational levels were, the higher their SAS and SDS scores were (P<0.05). One month after discharge, in the control group, the lower the parents’ education levels were, the higher their SAS and SDS scores (P<0.05). One month after discharge, in the intervention group, the SAS and SDS scores were similar among parents with different educational levels. The results of the WHOQOL-BREF scale showed that the scores of the physiological, psychological, social and environmental fields at one month after discharge in the intervention group were significantly higher than those in the control group (P<0.05). Conclusion Providing health education and medical support to the parents of infants with congenital heart disease surgery after discharge via telemedicine can effectively relieve the parents’ anxiety and depression and improve their quality of life.

Quality of life in young people with congenital heart disease is better than expected

2018 ◽  
Vol 104 (2) ◽  
pp. 124-128 ◽  
Author(s):  
Barbara Reiner ◽  
Renate Oberhoffer ◽  
Peter Ewert ◽  
Jan Müller
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Young Patients ◽  
Control Group ◽  
Healthy Children ◽  
Related Quality ◽  
Health Related

ObjectivesImproved treatments for patients with congenital heart disease (CHD) have led to a growing interest in long-term functional outcomes such as health-related quality of life (HRQoL). Studies on HRQoL in children with CHD have contradicting results. Therefore, we compared HRQoL of children with CHD with that of current healthy peers and stratify CHD cases by severity and diagnostic subgroups.MethodsWe included 514 patients (191 girls) aged 7–17 (12.9±3.1) years who were recruited at our institution between July 2014 and May 2017. The self-reported and age-adapted KINDL questionnaire was used to assess HRQoL. Patient data were compared with that of a recent control group of 734 healthy children (346 girls, 13.4±2.1 years).ResultsPatients with CHD scored at least as high as healthy peers in HRQoL (CHD: 78.6±9.8; healthy: 75.6±10.1; P<0.001). After correction for sex and age, patients with CHD presented a 2.3-point higher HRQoL (P<0.001). The sex-specific and age-specific analyses showed that there were no differences between boys with and without CHD in childhood (P=0.255), but in adolescence, boys with CHD had on average 3.9-point higher scores (P=0.001), whereas girls with CHD had statistically higher HRQoL perception than healthy girls in childhood (4.2 points; P=0.003) and adolescence (4.2 points; P=0.005). There were no differences between the severity classes or diagnostic subgroups in the total HRQoL score or in the six subdomains.ConclusionThe high HRQoL in young patients with CHD suggests that they can cope well with their disease burden. This holds true for all severity classes and diagnostic subgroups.

Trisomy 18 and Congenital Heart Disease: Single-Center Review of Outcomes and Parental Perspectives

2018 ◽  
Vol 9 (5) ◽  
pp. 550-556 ◽  
Author(s):  
Neena A. Davisson ◽  
Joseph B. Clark ◽  
Thomas K. Chin ◽  
Robert D. Tunks
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Treatment Strategy ◽  
Medical Management ◽  
Congenital Heart ◽  
Intervention Group ◽  
Specific Treatment ◽  
Trisomy 18

Background: In patients with trisomy 18, congenital heart surgery is controversial due to anticipated poor patient outcome. Data are lacking regarding clinical outcomes and family opinions about care received. Methods: A retrospective chart review of patients with trisomy 18 and congenital heart disease from 2005 to 2017 was performed. Patients were grouped into those receiving cardiac intervention (surgery or cardiac catheterization) versus medical management. A telephone survey was used to assess completeness of family counseling provided prior to treatment selection and parental opinions on the care received. Results: Seventeen infants were assessed. In the medical management group (n = 7), there were five deaths at a median age of 1.5 months (range: 1.2-4.1 months) and two survivors aged 29 and 44 months at latest follow-up. In the intervention group (n = 10), cardiac surgery was performed in nine patients at a median age of 4.3 months (0.2-23.4 months) and weight of 3.2 kg (1.5-12.2 kg); catheter intervention was performed in one patient at one week of age. At latest follow-up, seven intervention patients are alive at a median age of 50 months (5-91 months). Survey respondents (n = 12) unanimously stated that their child’s quality of life was improved by their specific treatment strategy, that the experience of the parents was enhanced, and that they would choose the same treatment course again. Conclusions: Surgical repair may be associated with favorable early outcomes and may be judiciously offered in selected circumstances. In this limited experience, parental perceptions were positive regarding the quality of care and overall experience independent of the chosen treatment strategy or eventual outcome.

scholarly journals Impact of a Transition Education Program on the Quality of Life in Pediatric Patients with Congenital Heart Disease: Study Design for a Randomised Controlled Trial

2020 ◽  
Author(s):  
Oscar werner ◽  
Charlene Bredy ◽  
Kathleen LAVASTRE ◽  
Sophie Guillaumont ◽  
Gregoire De LA VILLEON ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Randomized Trial ◽  
Education Program ◽  
Congenital Heart ◽  
Therapeutic Education ◽  
Randomised Controlled

Abstract Background: Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patient to become independent and responsible. The TRANSITION randomized trial aims to assess the impact of a transition education program on the quality of life (QoL) of adolescents and young adults with CHD. Methods: multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (Education program vs. no intervention). The primary outcome is the change in self-reported QoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall QoL score of 7±13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (VO2max,VE/VCO2 slope), level of knowledge, physical and psychological status.Discussion: As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education still low, we sought to assess the efficacy of a therapeutic education program on the QoL of CHD patients with a randomized trial.Trial registration: This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626) on 29th December 2016

Pulmonary Arterial Hypertension Complicating Congenital Heart Disease: Advances in Therapy

2017 ◽  
Vol 38 (05) ◽  
pp. 636-650 ◽  
Author(s):  
Margarita Brida ◽  
Laura Price ◽  
Colm McCabe ◽  
Rafael Alonso-Gonzalez ◽  
Stephen Wort ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Pulmonary Arterial Hypertension ◽  
Arterial Hypertension ◽  
Congenital Heart ◽  
Term Survival ◽  
Pulmonary Arterial

AbstractCongenital heart disease (CHD) is the most common inborn defect, affecting approximately 1% of all newborns worldwide. Advances in its diagnosis and treatment have led to dramatic improvements in patients' quality of life and long-term survival. Nevertheless, despite these innovations many patients require life-long follow-up and are at risk of numerous complications, namely, residual or progressive hemodynamic lesions, arrhythmia, sudden cardiac death, and the development of heart failure and pulmonary arterial hypertension (PAH), despite timely surgical intervention. Ill advisedly, some patients are also lost to follow-up, assuming that their early life surgical or catheter-based intervention was curative, hence missing out on invaluable lifetime screening and timely interventions that may be necessary. Additionally, there are many patients with undiagnosed or unoperated CHD in the developing world presenting later in life with irreversible complications. Even in this modern era of diagnosis and screening, PAH-CHD remains a burden in patients with CHD, with approximations of up to 10% in this heterogeneous group and is associated with an adverse impact on quality of life and survival.

scholarly journals Health-Related Quality of Life and Congenital Heart Disease in Australia

2012 ◽  
Vol 21 ◽  
pp. S293
Author(s):  
K. Eagleson ◽  
R. Justo ◽  
F. Boyle ◽  
R. Ware ◽  
S. Johnson
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Psychosocial well-being and quality of life in siblings of children with congenital heart disease: A systematic review

2021 ◽  
pp. 136749352110129
Author(s):  
Alice S Schamong ◽  
Hannah Liebermann-Jordanidis ◽  
Konrad Brockmeier ◽  
Elisabeth Sticker ◽  
Elke Kalbe
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Associated Factors ◽  
Congenital Heart ◽  
Negative Impact ◽  
Well Being

Congenital heart disease (CHD) is a major global health problem. Until recently, the siblings of this group did not receive much attention. This review, conducted from November 2019 to October 2020, aims to summarize knowledge about psychosocial well-being and quality of life (QoL), associated factors, and interventions for siblings of children with CHD. Systematic searches were conducted in PubMed, PsycINFO, PsycARTICLES, Web of Science via EBSCOhost, and CENTRAL. Twelve articles were included. Results showed that psychosocial well-being was impaired in 14% to 40% of siblings. Negative impact of illness was highest for CHD siblings compared to siblings of children with cancer, cystic fibrosis, or diabetes. QoL was impaired in up to one-third. Siblings of children with CHD and cancer rated their QoL lower than those of siblings of children with cystic fibrosis or type-1 diabetes. Associated factors were sibling age, gender, socioeconomic status, miscarriage, previous sibling death, visibility of illness, and severity of condition. Only one of two interventions focused on siblings of CHD children. Although data are scarce and inhomogeneous, it indicates that siblings of CHD children suffer from lower psychosocial well-being and QoL than siblings of children with other chronic conditions. Interventions to improve their situation should be developed.

Sign in / Sign up

Export Citation Format

Share Document