The impact of congenital heart diseases on the quality of life of patients and their families in Saudi Arabia: Biological, psychological, and social dimensions

Ahmad S. Azhar; Zahra H. AlShammasi; Rawan E. Higgi

doi:10.15537/smj.2016.4.13626

References

↵
1. Loup O,
2. von Weissenfluh C,
3. Gahl B,
4. Schwerzmann M,
5. Carrel T,
6. Kadner A
(2009) Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery. Eur J Cardiothorac Surg 36:105–111.
OpenUrl CrossRef PubMed
↵
1. Dolk H,
2. Loane M,
3. Garne E
(2011) Congenital heart defects in Europe: prevalence and perinatal mortality, 2000 to 2005. Circulation 123:841–849.
OpenUrl Abstract/FREE Full Text
↵
1. Rao PS
(2012) Congenital heart defects-A review (INTECH Open Access Publisher).
↵
1. Niemitz M,
2. Seitz DC,
3. Oebels M,
4. Schranz D,
5. Hövels-Gürich H,
6. Hofbeck M,
7. et al.
(2013) The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease. Qual Life Res 22:2877–2888.
OpenUrl
1. van der Linde D,
2. Konings EE,
3. Slager MA,
4. Witsenburg M,
5. Helbing WA,
6. Takkenberg JJ,
7. et al.
(2011) Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 58:2241–2247.
OpenUrl FREE Full Text
↵
1. Altman CA,
2. Fulton DR,
3. Weisman LE,
4. Kim MS
Congenital heart disease (CHD) in the newborn: Presentation and screening for critical CHD. Available from:http://www.uptodate.com/contents/identifying-newborns-with-critical-congenital-heart-disease. [Updated 2015 November 30].
↵
1. Alabdulgader AA
(2006) Congenital heart disease in Saudi Arabia: current epidemiology and future projections. East Mediterr Health J 12(Suppl 2):S157–S167.
OpenUrl
↵
1. National Heart, Lung, and Blood Institute
(2011) Types of Congenital Heart Defects, Available from:http://www.nhlbi.nih.gov/health/health-topics/topics/chd/types. [Cited 2015 Jun 10].
↵
1. Robert LG
(2014) Diagnosis and initial management of cyanotic heart disease in the newborn. Available from:http://www.uptodate.com/contents/diagnosis-and-initial-management-of-cyanotic-heart-disease-in-the-newborn?source=search_result&search=Diagnosis+and+initial+management+of+cyanotic+heart+disease+in+the+newborn&selectedTitle=1%7E150. [Cited 2015 Jun 10].
↵
1. Teixeira FM,
2. Coelho RM,
3. Proença C,
4. Silva AM,
5. Vieira D,
6. Vaz C,
7. et al.
(2011) Quality of life experienced by adolescents and young adults with congenital heart disease. Pediatr Cardiol 32:1132–1138.
OpenUrl CrossRef PubMed
↵
1. Marino BS,
2. Lipkin PH,
3. Newburger JW,
4. Peacock G,
5. Gerdes M,
6. Gaynor JW,
7. et al.
(2012) Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 126:1143–1172.
OpenUrl Abstract/FREE Full Text
↵
1. Spijkerboer AW,
2. Utens EM,
3. Bogers AJ,
4. Helbing WA,
5. Verhulst FC
(2008) A historical comparison of long-term behavioral and emotional outcomes in children and adolescents after invasive treatment for congenital heart disease. J Pediatr Surg 43:534–539.
OpenUrl CrossRef PubMed
↵
1. Jackson AC,
2. Frydenberg E,
3. Liang RP,
4. Higgins RO,
5. Murphy BM
(2015) Familial impact and coping with child heart disease: a systematic review. Pediatr Cardiol 36:695–712.
OpenUrl CrossRef PubMed
1. Bertoletti J,
2. Marx GC,
3. Hattge Júnior SP,
4. Pellanda LC
(2014) Quality of life and congenital heart disease in childhood and adolescence. Arq Bras Cardiol 102:192–198.
OpenUrl
↵
1. Landolt MA,
2. Ystrom E,
3. Stene-Larsen K,
4. Holmstrøm H,
5. Vollrath ME
(2014) Exploring causal pathways of child behavior and maternal mental health in families with a child with congenital heart disease: a longitudinal study. Psychol Med 44:3421–3433.
OpenUrl
↵
1. Loup O,
2. von Weissenfluh C,
3. Gahl B,
4. Schwerzmann M,
5. Carrel T,
6. Kadner A
(2009) Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery. Eur J Cardiothorac Surg 36:105–111.
OpenUrl CrossRef PubMed
↵
1. Chonmaitree T,
2. Revai K,
3. Grady JJ,
4. Clos A,
5. Patel JA,
6. Nair S,
7. et al.
(2008) Viral upper respiratory tract infection and otitis media complication in young children. Clin Infect Dis 46:815–823.
OpenUrl CrossRef PubMed Web of Science
↵
(2011) Cove Point Foundation. Johns Hopkins Children’s Hospital. Overview of Adult Congenital Heart Disease, Available from:http://www.pted.org/?id=overview1. [Updated 2011 May 16, Cited 2015 July 25].
↵
1. Eiser C,
2. Morse R
(2001) Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 5:1–157.
OpenUrl PubMed
↵
1. Glaser A,
2. Walker D
(1994) Quality of life in surgically palliated complex congenital heart disease. Arch Dis Child 71:482.
OpenUrl FREE Full Text
↵
1. Amedro P,
2. Dorka R,
3. Moniotte S,
4. Guillaumont S,
5. Fraisse A,
6. Kreitmann B,
7. et al.
(2015) Quality of Life of Children with Congenital Heart Diseases: A Multicenter Controlled Cross-Sectional Study. Pediatr Cardiol 36:1588–1601.
OpenUrl
↵
(2008) World Health Organization. The global burden of disease:2004 update (WHO, Geneva (CH)) Available from:http://www.who.int/healthinfo/global_burden_disease/2004_report_update/en/. [Cited 2015 June 10].
↵
1. Geskey JM,
2. Cyran SE
(2012) Managing the morbidity associated with respiratory viral infections in children with congenital heart disease. Int J Pediatr 2012:646780.
OpenUrl PubMed
1. Medrano López C,
2. García-Guereta Silva L,
3. Lirio Casero J,
4. García Pérez J,
5. Grueso J,
6. Malo P,
7. et al.
(2009) [Respiratory infections, Down’s syndrome and congenital heart disease: the CIVIC 21 study]. An Pediatr (Barc) 71:38–46, Spanish.
OpenUrl CrossRef PubMed
↵
1. Medrano C,
2. Garcia-Guereta L,
3. Grueso J,
4. Insa B,
5. Ballesteros F,
6. Casaldaliga J,
7. et al.
(2007) Respiratory infection in congenital cardiac disease. Hospitalizations in young children in Spain during 2004 and 2005: the CIVIC Epidemiologic Study. Cardiol Young 17:360–371.
OpenUrl CrossRef PubMed
↵
1. Resch B,
2. Michel-Behnke I
(2013) Respiratory syncytial virus infections in infants and children with congenital heart disease: update on the evidence of prevention with palivizumab. Curr Opin Cardiol 28:85–91.
OpenUrl
↵
1. Khalil A,
2. Suff N,
3. Thilaganathan B,
4. Hurrell A,
5. Cooper D,
6. Carvalho JS
(2014) Brain abnormalities and neurodevelopmental delay in congenital heart disease: systematic review and meta-analysis. Ultrasound Obstet Gynecol 43:14–24.
OpenUrl CrossRef PubMed
↵
1. Casey FA,
2. Sykes DH,
3. Craig BG,
4. Power R,
5. Mulholland HC
(1996) Behavioral adjustment of children with surgically palliated complex congenital heart disease. J Pediatr Psychol 21:335–352.
OpenUrl CrossRef PubMed Web of Science
↵
1. Massaro AN,
2. El-Dib M,
3. Glass P,
4. Aly H
(2008) Factors associated with adverse neurodevelopmental outcomes in infants with congenital heart disease. Brain Dev 30:437–446.
OpenUrl CrossRef PubMed Web of Science
↵
1. Almesned S,
2. Al-Akhfash A,
3. Mesned AA
(2013) Social impact on families of children with complex congenital heart disease. Ann Saudi Med 33:140–143.
OpenUrl
↵
1. Ikemba CM,
2. Kozinetz CA,
3. Feltes TF,
4. Fraser CD Jr.,
5. McKenzie ED,
6. Shah N,
7. et al.
(2002) Internet use in families with children requiring cardiac surgery for congenital heart disease. Pediatrics 109:419–422.
OpenUrl Abstract/FREE Full Text
↵
1. Massin MM,
2. Montesanti J,
3. Gerard P
(2006) Use of the Internet by parents of children with congenital heart disease. Acta Cardiol 61:406–410.
OpenUrl PubMed

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[1] ↵
Loup O,
von Weissenfluh C,
Gahl B,
Schwerzmann M,
Carrel T,
Kadner A
(2009) Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery. Eur J Cardiothorac Surg 36:105–111.
OpenUrl CrossRef PubMed

[2] Loup O,

[3] von Weissenfluh C,

[4] Gahl B,

[5] Schwerzmann M,

[6] Carrel T,

[7] Kadner A

[8] ↵
Dolk H,
Loane M,
Garne E
(2011) Congenital heart defects in Europe: prevalence and perinatal mortality, 2000 to 2005. Circulation 123:841–849.
OpenUrl Abstract/FREE Full Text

[9] Dolk H,

[10] Loane M,

[11] Garne E

[12] ↵
Rao PS
(2012) Congenital heart defects-A review (INTECH Open Access Publisher).

[13] Rao PS

[14] ↵
Niemitz M,
Seitz DC,
Oebels M,
Schranz D,
Hövels-Gürich H,
Hofbeck M,
et al.
(2013) The development and validation of a health-related quality of life questionnaire for pre-school children with a chronic heart disease. Qual Life Res 22:2877–2888.
OpenUrl

[15] Niemitz M,

[16] Seitz DC,

[17] Oebels M,

[18] Schranz D,

[19] Hövels-Gürich H,

[20] Hofbeck M,

[21] et al.

[22] van der Linde D,
Konings EE,
Slager MA,
Witsenburg M,
Helbing WA,
Takkenberg JJ,
et al.
(2011) Birth prevalence of congenital heart disease worldwide: a systematic review and meta-analysis. J Am Coll Cardiol 58:2241–2247.
OpenUrl FREE Full Text

[23] van der Linde D,

[24] Konings EE,

[25] Slager MA,

[26] Witsenburg M,

[27] Helbing WA,

[28] Takkenberg JJ,

[29] et al.

[30] ↵
Altman CA,
Fulton DR,
Weisman LE,
Kim MS
Congenital heart disease (CHD) in the newborn: Presentation and screening for critical CHD. Available from:http://www.uptodate.com/contents/identifying-newborns-with-critical-congenital-heart-disease. [Updated 2015 November 30].

[31] Altman CA,

[32] Fulton DR,

[33] Weisman LE,

[34] Kim MS

[35] ↵
Alabdulgader AA
(2006) Congenital heart disease in Saudi Arabia: current epidemiology and future projections. East Mediterr Health J 12(Suppl 2):S157–S167.
OpenUrl

[36] Alabdulgader AA

[37] ↵
National Heart, Lung, and Blood Institute
(2011) Types of Congenital Heart Defects, Available from:http://www.nhlbi.nih.gov/health/health-topics/topics/chd/types. [Cited 2015 Jun 10].

[38] National Heart, Lung, and Blood Institute

[39] ↵
Robert LG
(2014) Diagnosis and initial management of cyanotic heart disease in the newborn. Available from:http://www.uptodate.com/contents/diagnosis-and-initial-management-of-cyanotic-heart-disease-in-the-newborn?source=search_result&search=Diagnosis+and+initial+management+of+cyanotic+heart+disease+in+the+newborn&selectedTitle=1%7E150. [Cited 2015 Jun 10].

[40] Robert LG

[41] ↵
Teixeira FM,
Coelho RM,
Proença C,
Silva AM,
Vieira D,
Vaz C,
et al.
(2011) Quality of life experienced by adolescents and young adults with congenital heart disease. Pediatr Cardiol 32:1132–1138.
OpenUrl CrossRef PubMed

[42] Teixeira FM,

[43] Coelho RM,

[44] Proença C,

[45] Silva AM,

[46] Vieira D,

[47] Vaz C,

[48] et al.

[49] ↵
Marino BS,
Lipkin PH,
Newburger JW,
Peacock G,
Gerdes M,
Gaynor JW,
et al.
(2012) Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 126:1143–1172.
OpenUrl Abstract/FREE Full Text

[50] Marino BS,

[51] Lipkin PH,

[52] Newburger JW,

[53] Peacock G,

[54] Gerdes M,

[55] Gaynor JW,

[56] et al.

[57] ↵
Spijkerboer AW,
Utens EM,
Bogers AJ,
Helbing WA,
Verhulst FC
(2008) A historical comparison of long-term behavioral and emotional outcomes in children and adolescents after invasive treatment for congenital heart disease. J Pediatr Surg 43:534–539.
OpenUrl CrossRef PubMed

[58] Spijkerboer AW,

[59] Utens EM,

[60] Bogers AJ,

[61] Helbing WA,

[62] Verhulst FC

[63] ↵
Jackson AC,
Frydenberg E,
Liang RP,
Higgins RO,
Murphy BM
(2015) Familial impact and coping with child heart disease: a systematic review. Pediatr Cardiol 36:695–712.
OpenUrl CrossRef PubMed

[64] Jackson AC,

[65] Frydenberg E,

[66] Liang RP,

[67] Higgins RO,

[68] Murphy BM

[69] Bertoletti J,
Marx GC,
Hattge Júnior SP,
Pellanda LC
(2014) Quality of life and congenital heart disease in childhood and adolescence. Arq Bras Cardiol 102:192–198.
OpenUrl

[70] Bertoletti J,

[71] Marx GC,

[72] Hattge Júnior SP,

[73] Pellanda LC

[74] ↵
Landolt MA,
Ystrom E,
Stene-Larsen K,
Holmstrøm H,
Vollrath ME
(2014) Exploring causal pathways of child behavior and maternal mental health in families with a child with congenital heart disease: a longitudinal study. Psychol Med 44:3421–3433.
OpenUrl

[75] Landolt MA,

[76] Ystrom E,

[77] Stene-Larsen K,

[78] Holmstrøm H,

[79] Vollrath ME

[80] ↵
Loup O,
von Weissenfluh C,
Gahl B,
Schwerzmann M,
Carrel T,
Kadner A
(2009) Quality of life of grown-up congenital heart disease patients after congenital cardiac surgery. Eur J Cardiothorac Surg 36:105–111.
OpenUrl CrossRef PubMed

[81] Loup O,

[82] von Weissenfluh C,

[83] Gahl B,

[84] Schwerzmann M,

[85] Carrel T,

[86] Kadner A

[87] ↵
Chonmaitree T,
Revai K,
Grady JJ,
Clos A,
Patel JA,
Nair S,
et al.
(2008) Viral upper respiratory tract infection and otitis media complication in young children. Clin Infect Dis 46:815–823.
OpenUrl CrossRef PubMed Web of Science

[88] Chonmaitree T,

[89] Revai K,

[90] Grady JJ,

[91] Clos A,

[92] Patel JA,

[93] Nair S,

[94] et al.

[95] ↵
(2011) Cove Point Foundation. Johns Hopkins Children’s Hospital. Overview of Adult Congenital Heart Disease, Available from:http://www.pted.org/?id=overview1. [Updated 2011 May 16, Cited 2015 July 25].

[96] ↵
Eiser C,
Morse R
(2001) Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 5:1–157.
OpenUrl PubMed

[97] Eiser C,

[98] Morse R

[99] ↵
Glaser A,
Walker D
(1994) Quality of life in surgically palliated complex congenital heart disease. Arch Dis Child 71:482.
OpenUrl FREE Full Text

[100] Glaser A,

[101] Walker D

[102] ↵
Amedro P,
Dorka R,
Moniotte S,
Guillaumont S,
Fraisse A,
Kreitmann B,
et al.
(2015) Quality of Life of Children with Congenital Heart Diseases: A Multicenter Controlled Cross-Sectional Study. Pediatr Cardiol 36:1588–1601.
OpenUrl

[103] Amedro P,

[104] Dorka R,

[105] Moniotte S,

[106] Guillaumont S,

[107] Fraisse A,

[108] Kreitmann B,

[109] et al.

[110] ↵
(2008) World Health Organization. The global burden of disease:2004 update (WHO, Geneva (CH)) Available from:http://www.who.int/healthinfo/global_burden_disease/2004_report_update/en/. [Cited 2015 June 10].

[111] ↵
Geskey JM,
Cyran SE
(2012) Managing the morbidity associated with respiratory viral infections in children with congenital heart disease. Int J Pediatr 2012:646780.
OpenUrl PubMed

[112] Geskey JM,

[113] Cyran SE

[114] Medrano López C,
García-Guereta Silva L,
Lirio Casero J,
García Pérez J,
Grueso J,
Malo P,
et al.
(2009) [Respiratory infections, Down’s syndrome and congenital heart disease: the CIVIC 21 study]. An Pediatr (Barc) 71:38–46, Spanish.
OpenUrl CrossRef PubMed

[115] Medrano López C,

[116] García-Guereta Silva L,

[117] Lirio Casero J,

[118] García Pérez J,

[119] Grueso J,

[120] Malo P,

[121] et al.

[122] ↵
Medrano C,
Garcia-Guereta L,
Grueso J,
Insa B,
Ballesteros F,
Casaldaliga J,
et al.
(2007) Respiratory infection in congenital cardiac disease. Hospitalizations in young children in Spain during 2004 and 2005: the CIVIC Epidemiologic Study. Cardiol Young 17:360–371.
OpenUrl CrossRef PubMed

[123] Medrano C,

[124] Garcia-Guereta L,

[125] Grueso J,

[126] Insa B,

[127] Ballesteros F,

[128] Casaldaliga J,

[129] et al.

[130] ↵
Resch B,
Michel-Behnke I
(2013) Respiratory syncytial virus infections in infants and children with congenital heart disease: update on the evidence of prevention with palivizumab. Curr Opin Cardiol 28:85–91.
OpenUrl

[131] Resch B,

[132] Michel-Behnke I

[133] ↵
Khalil A,
Suff N,
Thilaganathan B,
Hurrell A,
Cooper D,
Carvalho JS
(2014) Brain abnormalities and neurodevelopmental delay in congenital heart disease: systematic review and meta-analysis. Ultrasound Obstet Gynecol 43:14–24.
OpenUrl CrossRef PubMed

[134] Khalil A,

[135] Suff N,

[136] Thilaganathan B,

[137] Hurrell A,

[138] Cooper D,

[139] Carvalho JS

[140] ↵
Casey FA,
Sykes DH,
Craig BG,
Power R,
Mulholland HC
(1996) Behavioral adjustment of children with surgically palliated complex congenital heart disease. J Pediatr Psychol 21:335–352.
OpenUrl CrossRef PubMed Web of Science

[141] Casey FA,

[142] Sykes DH,

[143] Craig BG,

[144] Power R,

[145] Mulholland HC

[146] ↵
Massaro AN,
El-Dib M,
Glass P,
Aly H
(2008) Factors associated with adverse neurodevelopmental outcomes in infants with congenital heart disease. Brain Dev 30:437–446.
OpenUrl CrossRef PubMed Web of Science

[147] Massaro AN,

[148] El-Dib M,

[149] Glass P,

[150] Aly H

[151] ↵
Almesned S,
Al-Akhfash A,
Mesned AA
(2013) Social impact on families of children with complex congenital heart disease. Ann Saudi Med 33:140–143.
OpenUrl

[152] Almesned S,

[153] Al-Akhfash A,

[154] Mesned AA

[155] ↵
Ikemba CM,
Kozinetz CA,
Feltes TF,
Fraser CD Jr.,
McKenzie ED,
Shah N,
et al.
(2002) Internet use in families with children requiring cardiac surgery for congenital heart disease. Pediatrics 109:419–422.
OpenUrl Abstract/FREE Full Text

[156] Ikemba CM,

[157] Kozinetz CA,

[158] Feltes TF,

[159] Fraser CD Jr.,

[160] McKenzie ED,

[161] Shah N,

[162] et al.

[163] ↵
Massin MM,
Montesanti J,
Gerard P
(2006) Use of the Internet by parents of children with congenital heart disease. Acta Cardiol 61:406–410.
OpenUrl PubMed

[164] Massin MM,

[165] Montesanti J,

[166] Gerard P

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Biological, psychological, and social dimensions

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The impact of congenital heart diseases on the quality of life of patients and their families in Saudi Arabia

Biological, psychological, and social dimensions

References

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