Parental perception of quality of life in children following cardiac surgery

Neha N. Pilankar; Mariya Prakash Jiandani; Amita Anil Mehta; D. V. Kulkarni

doi:10.18203/2349-3291.ijcp20192775

Authors

Neha N. Pilankar Department of Physiotherapy, PT School and Centre Seth GSMC & KEMH, Parel, Mumbai, Maharashtra, India
Mariya Prakash Jiandani Department of Physiotherapy, PT School and Centre Seth GSMC & KEMH, Parel, Mumbai, Maharashtra, India
Amita Anil Mehta Department of Physiotherapy, PT School and Centre Seth GSMC & KEMH, Parel, Mumbai, Maharashtra, India
D. V. Kulkarni Department of Cardiac Surgery, Seth GSMC and KEMH, Parel, Mumbai, Maharashtra, India

DOI:

https://doi.org/10.18203/2349-3291.ijcp20192775

Keywords:

Congenital heart disease, Children, International classification of functioning, Parents, Quality of life

Abstract

Background: Congenital heart disease (CHD) is one of the major causes of mortality in the pediatric population of both the developing and developed countries. Along with medical and surgical treatment, access to quality care is equally essential in children operated with CHD. This study aims at assessing how the parents perceive quality of life in the child post-operatively and the impact on family.

Methods: About 185 parents of children operated for CHD were interviewed using Pediatric Quality of Life Inventory™ 3.0 Cardiac, Paediatric Quality of Life Inventory™ (PedsQL™) Family Impact Module scale and Participation Measure using International Classification of Functioning, Disability and Health-Child Youth by World Health Organization-2007 (ICF-CY) after three months of surgery.

Results: CHD was found to be more common among males (57.8%) with commonest surgery being ventricular septal defect (36.8%) followed by tetralogy of fallot and others. Overall 44.8% parents perceived their child had problem following surgery, cognition being the most affected domain. Problems in communication were perceived by 47.6% parents and were worried about the future. Using ICF-CY, 55.1% perceived complains of mild difficulty in mobility and moderate difficulty in self-care and schooling for the child.

Conclusions: The overall quality of life of children operated for congenital heart disease was perceived as not affected by parents except for cognitive problems. Parental worry and communication were the most affected domains. As far as schooling and self-care is concerned there was moderate difficulty. There is need for parental counselling and rehabilitation to function for children operated for cardiac surgery post operatively.

Metrics

Metrics Loading ...

References

Nousi D, Christou A. Factors affecting the quality of life in children with congenital heart disease. Heal Science J. 2010;4(2):94-100.

Khairy P, Ittu IR, Mackie AS, Abrahamowicz M, Pilote L, Marelli AJ. Changing mortality in congenital heart disease. J Am Coll Cardiol. 2010;56(14):1149-57.

Saxena A, Mehta A, Sharma M, Salhan S, Kalaivani M, Sivasubramanian R, et al. Birth prevalence of congenital heart disease: a cross-sectional observational study from North India. Ann Pediatr Cardiol. 2016;9(3):205-9.

Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Heal Quality Life Outcomes. 2005;3:34.

Uzark K, Jones K, Burwinkle TM, Varni JW. The Pediatric Quality of Life Inventory™ in children with heart disease. Progress Pediatric Cardiol. 2003;18(2):141-9.

Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL™ Family Impact Module: Preliminary reliability and validity. Heal Quality Life Outcomes. 2004;2:55.

Wray J, Sensky T. Congenital heart disease and cardiac surgery in childhood: Effects on cognitive function and academic ability. Heart. 2001;85:687-91.

Latal B, Helfricht S, Fischer JE, Bauersfeld U, Landolt MA. Psychological adjustment and quality of life in children and adolescents following open heart surgery for congenital heart disease: a systematic review. BMC Pediatr. 2009;9:6.

Landolt MA, Buechel VER, Latal B. Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr. 2008;152(3):349-55.

Landolt MA, ValsangiacomoBuechel ER, Latal B. Predictors of parental quality of life after child open heart surgery: a 6-month prospective study. J Pediatrics. 2011;158(1):37-43.

Uzark K, Jones K, Slusher J, Limbers CA, Burwinkle TM, Varni JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics. 2008;121(5):e1060-7.

Wernovsky G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young. 2006;16(1):92-104.

Steptoe A, Butler N. Sports participation and emotional wellbeing in adolescents. Lancet. 1996;347:1789-92.

Fonseca A, Nazaré B, Canavarro MC. Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: a controlled comparison study with parents of healthy infants. Disabil Health J. 2012;5(2):67-74.