Health Related Quality of life after Corrective Surgery for Congenital Heart Disease

Heusch, A.; Calaminus, Gabriele; Kahl, Joseph A.; Schmidt, Katharina

doi:10.1055/s-0034-1382019

Cited by 16 publications

(10 citation statements)

References 27 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Healthcare advances now allow the correction or palliation of CHD, resulting in improved length and quality of life [4][5][6]. The timely diagnosis, appropriate treatment and long-term care for CHD patients is multi-disciplinary and depends on the availability of appropriately structured systems with adequate infrastructure [25,26].…”

Section: Discussionmentioning

confidence: 99%

“…Seventeen institutions (46%) received periodic staff reinforcements through visiting cardiac surgical teams from abroad. The teams visited a median of two (1)(2)(3)(4)(5)(6)(7)(8)(9)(10)(11) times in a year.…”

Section: Staffingmentioning

confidence: 99%

“…In 2017, CHDs led to an estimated 261,247 deaths, and a total of 589,479 years lived with disability globally and represent an increasingly prominent cause of infant and child mortality [1], especially in low and middle-income countries(LMIC) [1,3]. Advances in medical technology and knowledge over the past fifty years now allow the possibility to either correct or palliate the majority of congenital heart anomalies leading to improved length and quality of life for those affected [4][5][6].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Infrastructure Availability for the Care of Congenital Heart Disease Patients and Its Influence on Case Volume, Complexity and Access Among Healthcare Institutions in 17 Middle-Income Countries

Wamala

Gongwer

Doherty-Schmeck

et al. 2021

View full text Add to dashboard Cite

The care for patients with congenital heart disease (CHD) is multi-disciplinary and resource intensive. There is limited information about the infrastructure available among programs that care for CHD patients in low and middle-income countries (LMIC). A survey covering the entire care-pathway for CHD, from initial assessment to inpatient care and outpatient follow-up, was administered to institutions participating in the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC). Surgical case complexity-mix was collected from the IQIC registry and estimated surgical capacity requirement was based on population data. The statistical association of selected infrastructure with case volume, case-complexity and percentage of estimated case-burden actually treated, was analyzed. Thirty-seven healthcare institutions in seventeen countries with median annual surgical volume of 361 (41-3503) operations completed the survey. There was a median of two (1-16) operating room/s (OR), nine (2-80) intensive care unit (ICU) beds, three (1-20) cardiac surgeons, five (3-30) OR nurses, four (2-35) anesthesiologists, four (1-25) perfusionists, 28 (5-194) ICU nurses, six (0-30) cardiologists and three (1-15) interventional cardiologists. Higher surgical volume was associated with higher OR availability (p = 0.007), number of surgeons (p = 0.002), OR nurses (0.008), anesthesiologists (p = 0.04), perfusionists (p = 0.001), ICU nurses (p < 0.001), years of experience of the most senior surgeon (p = 0.03) or cardiologist (p = 0.05), and ICU bed capacity (p = 0.001). Location in an upper-middle income country (P = 0.04), OR availability (p = 0.02), and number of cardiologists (p = 0.004) were associated with performing a higher percentage of complex cases. This study demonstrates an overall deficit in the infrastructure available for the care of CHD patients among the participating institutions. While there is considerable variation across institutions surveyed, deficits in infrastructure that requires long-term investment like operating rooms, intensive care capacity, and availability of trained staff, are associated with reduced surgical capacity and access to CHD care.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Staffingmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Infrastructure Availability for the Care of Congenital Heart Disease Patients and Its Influence on Case Volume, Complexity and Access Among Healthcare Institutions in 17 Middle-Income Countries

Wamala

Gongwer

Doherty-Schmeck

et al. 2021

View full text Add to dashboard Cite

show abstract

“…In general, it should be taken into account that most quality-of-life studies with patients with CHD use different questionnaires. Furthermore, there is a major difference between self-reported and parent proxy-reported study design – parents tend to report a lower health-related quality of life of their child, 25,26 which may refer to the so-called “vulnerable child syndrome”. 21 Moreover, the age seems to be of importance.…”

Section: Discussionmentioning

confidence: 99%

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

Jaschinski

Knetsch

Parzer

et al. 2021

World J Pediatr Congenit Heart Surg

View full text Add to dashboard Cite

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.

show abstract

“…In the congenital heart disease (CHD) population, there have been conflicting results regarding QoL with some studies demonstrating decreased QoL 6 and others showing no difference between children with CHD and their healthy peers. 7 Similar to the overall CHD cohort, there are inconsistent data regarding QoL in the AAOCA population. In 2017, Sing et al reported on an unoperated AAOCA cohort at their institution using generic PedsQL surveys and found that, while the patients reported normal QoL, the parents of patients who were exercise-restricted reported decreased levels of physical functioning, general health perception, and emotional impact on the parent and physical summary scores.…”

mentioning

confidence: 99%

Invited Commentary: Quality of Life in Young Patients With Anomalous Aortic Origin of a Coronary Artery: A Quality Not to Be Ignored

Brothers

2021

World J Pediatr Congenit Heart Surg

View full text Add to dashboard Cite

Health Related Quality of life after Corrective Surgery for Congenital Heart Disease

Cited by 16 publications

References 27 publications

Infrastructure Availability for the Care of Congenital Heart Disease Patients and Its Influence on Case Volume, Complexity and Access Among Healthcare Institutions in 17 Middle-Income Countries

Infrastructure Availability for the Care of Congenital Heart Disease Patients and Its Influence on Case Volume, Complexity and Access Among Healthcare Institutions in 17 Middle-Income Countries

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

Invited Commentary: Quality of Life in Young Patients With Anomalous Aortic Origin of a Coronary Artery: A Quality Not to Be Ignored

Contact Info

Product

Resources

About