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Sexual and Reproductive Health in Young People with Congenital Heart Disease: A Systematic Review of the Literature

Pediatric Cardiology volume 26, pages 805–811 (2005)Cite this article

Abstract

Background

Improved survival in young people with congenital heart disease (CHD) alters the significance of a range of developmentally important subjects, such as sexual and reproductive health. The aim of this study was to determine the level of knowledge about sexual and reproductive health issue in young people with CHD.

Methods

We undertook a systematic review of the literature from 1966 to March 2004, searching Medline, Psych Info, and Em base using a broad range of search terms. Additionally, we searched the literature for published guidelines on standards of care for young people with CHD.

Results

We identified ten articles that examined patients,' understanding of their heart disease. Seven of them specifically investigated knowledge of sexual and reproductive health as it related to cardiac disease.

Conclusions

In general, young people have a poor understanding of their heart disease. They appear to have a particularly poor grasp of sexual and reproductive health issues, yet they are interested in these issues. Therefore, health care programs for young people with CHD should incorporate sexual and reproductive health information and include anticipatory counseling and health risk screening.

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References

  1. WS Avila M Grinberg R Snitcowsky et al. (1995) ArticleTitleMaternal and fetal outcome in pregnant women with Eisenmenger’s syndrome Eur Heart J 16 460–464 Occurrence Handle1:STN:280:ByqH3c7psFQ%3D Occurrence Handle7671889

    CAS  PubMed  Google Scholar 

  2. RW Blum (1997) ArticleTitleSexual health contraceptive needs of adolescents with chronic conditions Arch Pediatr Adolesc Med 151 290–297 Occurrence Handle1:STN:280:ByiB3sngt1Q%3D Occurrence Handle9080939

    CAS  PubMed  Google Scholar 

  3. J Burn P Brennan J Little et al. (1998) ArticleTitleRecurrence risks in offspring of adults with major heart defects; results from first cohort of British collaborative study Lancet 351 311–316 Occurrence Handle10.1016/S0140-6736(97)06486-6 Occurrence Handle1:STN:280:DyaK1czhsVOiug%3D%3D Occurrence Handle9652610

    Article  CAS  PubMed  Google Scholar 

  4. RF Burrows EA Burrows (1998) ArticleTitleAssessing the teratogenic potential of angiotensin-converting enzyme inhibitors in pregnancy Aust N Z J Obstet Gynaecol 38 306–311 Occurrence Handle1:STN:280:DyaK1cvjt1ejsQ%3D%3D Occurrence Handle9761159

    CAS  PubMed  Google Scholar 

  5. F Cetta DC Podlecki TJ Bell (1993) ArticleTitleAdolescent knowledge of bacterial endocarditis prophylaxis J Adolesc Health 14 540–542 Occurrence Handle10.1016/1054-139X(93)90137-E Occurrence Handle1:STN:280:ByuC2cngt1E%3D Occurrence Handle8312289

    Article  CAS  PubMed  Google Scholar 

  6. F Cetta CA Warnes (1995) ArticleTitleAdults with congenital heart disease: patient knowledge of endocarditis prophylaxis Mayo Clin Proc 70 50–54 Occurrence Handle1:STN:280:ByqC3cnos1Y%3D Occurrence Handle7808052

    CAS  PubMed  Google Scholar 

  7. J Deanfield E Thaulow C Warnes et al. (2003) ArticleTitleManagement of grown up congenital heart disease Eur Heart J 24 1035–1084 Occurrence Handle10.1016/S0195-668X(03)00131-3 Occurrence Handle12868424

    Article  PubMed  Google Scholar 

  8. A Dore P Guise Particlede LA Mercier (2002) ArticleTitleTransition of care to adult congenital heart centres: what do patients know about their heart condition? Can J Cardiol 18 141–146 Occurrence Handle11875583

    PubMed  Google Scholar 

  9. SB Doucet (1981) ArticleTitleThe young adult’s perceptions of the effect of congenital heart disease on his life style Nurs Pap 13 3–16 Occurrence Handle1:STN:280:Bi2C2M%2FjtFY%3D Occurrence Handle6917163

    CAS  PubMed  Google Scholar 

  10. C Ferencz FL Wiegmann SuffixJr RE Dunning (1980) ArticleTitleMedical knowledge of young persons with heart disease J Sch Health 50 133–136 Occurrence Handle1:STN:280:Bi%2BC2c7ntF0%3D Occurrence Handle6898743

    CAS  PubMed  Google Scholar 

  11. E Foster TP Graham DJ Driscoll SuffixJr et al. (2001) ArticleTitleTask force 2: special health care needs of adults with congenital heart disease J Am Coll Cardiol 37 1176–1183 Occurrence Handle10.1016/S0735-1097(01)01277-3 Occurrence Handle1:STN:280:DC%2BD3M3gvFGrsw%3D%3D Occurrence Handle11300419

    Article  CAS  PubMed  Google Scholar 

  12. LT Gantt (1992) ArticleTitleGrowing up heartsick: the experiences of young women with congenital heart disease Health Care Women Int 13 241–248 Occurrence Handle1:STN:280:ByyD3MrivFQ%3D Occurrence Handle1399864

    CAS  PubMed  Google Scholar 

  13. A Heller S Rafman I Zvagulis IB Pless (1985) ArticleTitleBirth defects and psychosocial adjustment Am J Dis Child 139 257–263 Occurrence Handle1:STN:280:BiqC2crnt1M%3D Occurrence Handle3976606

    CAS  PubMed  Google Scholar 

  14. T Horner R Liberthson MS Jellinek (2000) ArticleTitlePsychosocial profile of adults with complex congenital heart disease Mayo Clin Proc 75 31–36 Occurrence Handle1:STN:280:DC%2BD3c%2FpsVCmsw%3D%3D Occurrence Handle10630755

    CAS  PubMed  Google Scholar 

  15. MJ Kantoch RL Collins-Nakai S Medwid E Ungstad DA Taylor (1997) ArticleTitleAdult patients’ knowledge about their congenital heart disease Can J Cardiol 13 641–645 Occurrence Handle1:STN:280:ByiA1MrktlM%3D Occurrence Handle9251576

    CAS  PubMed  Google Scholar 

  16. B MacMahon T Mckeown RG Record (1953) ArticleTitleThe incidence and life expectation of children with congenital heart disease Br Heart J 15 121–129 Occurrence Handle1:STN:280:CyyD28nnvVw%3D Occurrence Handle13041990

    CAS  PubMed  Google Scholar 

  17. MA Mendelson (1994) ArticleTitleContraception for women with congenital heart disease Heart Dis Stroke 3 266–269 Occurrence Handle1:STN:280:ByqC38%2FisFY%3D Occurrence Handle7820343

    CAS  PubMed  Google Scholar 

  18. MA Mendelson (2001) ArticleTitleGynecologic and obstetric issues in the adolescent with heart disease Adolesc Med 12 163–174 Occurrence Handle1:STN:280:DC%2BD3MvitF2gsg%3D%3D Occurrence Handle11224029

    CAS  PubMed  Google Scholar 

  19. P Moons E Volder ParticleDe W Budts et al. (2001) ArticleTitleWhat do adult patients with congenital heart disease know about their disease, treatment, and prevention of complications? A call for structured patient education Heart 86 74–80 Occurrence Handle10.1136/heart.86.1.74 Occurrence Handle1:STN:280:DC%2BD3Mzkslelug%3D%3D Occurrence Handle11410567

    Article  CAS  PubMed  Google Scholar 

  20. L Neinstein (1998) ArticleTitleContraception in women with special medical needs Compr. Ther 24 229–250 Occurrence Handle1:STN:280:DyaK1c3ovFOrsQ%3D%3D Occurrence Handle9626481

    CAS  PubMed  Google Scholar 

  21. DP Orr SC Weller B Satterwhite IB Pless (1984) ArticleTitlePsychosocial implications of chronic illness in adolescence J Pediatr 104 152–157 Occurrence Handle1:STN:280:BiuD1cbot1c%3D Occurrence Handle6690661

    CAS  PubMed  Google Scholar 

  22. O Romano-Zelekha R Hirsh L Blieden M Green T Shohat (2001) ArticleTitleThe risk for congenital heart defects in offspring of individuals with congenital heart defects Clin Genet 59 325–329 Occurrence Handle10.1034/j.1399-0004.2001.590505.x Occurrence Handle1:STN:280:DC%2BD3MzmsFOgsg%3D%3D Occurrence Handle11359463

    Article  CAS  PubMed  Google Scholar 

  23. CP Saunders GJ Roberts (1997) ArticleTitleDental attitudes, knowledge, and health practices of parents of children with congenital heart Arch Dis Child 76 539–540 Occurrence Handle1:STN:280:ByiA1cfmt1c%3D Occurrence Handle9245857

    CAS  PubMed  Google Scholar 

  24. SM Sawyer (2003) ArticleTitleDevelopmentally appropriate healthcare for young people with chronic illness: questions of philosophy, policy, and practice Pediatr Pulmonol 36 363–365 Occurrence Handle10.1002/ppul.10369 Occurrence Handle14520716

    Article  PubMed  Google Scholar 

  25. SM Sawyer KV Roberts (1999) ArticleTitleSexual and reproductive health in young people with spina bifida Dev Med Child Neurol 41 671–675 Occurrence Handle10.1017/S0012162299001383 Occurrence Handle1:STN:280:DC%2BD3c%2Flt1ehtA%3D%3D Occurrence Handle10587043

    Article  CAS  PubMed  Google Scholar 

  26. SM Sawyer MA Tully AA Colin (2001) ArticleTitleReproductive and sexual health in males with cystic fibrosis: a case for health professional education and training Adolescent Health 28(1) 36–40

    Google Scholar 

  27. DP Schor (1987) ArticleTitleSex and sexual abuse in developmentally disabled adolescents Semin. Adolesc. Med 3 1–7 Occurrence Handle1:STN:280:BiiB283mtVU%3D Occurrence Handle2955493

    CAS  PubMed  Google Scholar 

  28. GF Sholler JM Celermajer (1984) ArticleTitleProphylaxis of bacterial endocarditis: awareness of need Med J Aust 140 650–652 Occurrence Handle1:STN:280:BiuC1M%2Fns1U%3D Occurrence Handle6717349

    CAS  PubMed  Google Scholar 

  29. J Somerville (1989) ArticleTitleCongenital heart disease in the adolescent Arch Dis Child 64 771–773 Occurrence Handle1:STN:280:BiaA2szgt1c%3D Occurrence Handle2505687

    CAS  PubMed  Google Scholar 

  30. J Somerville (1997) ArticleTitleManagement of adults with congenital heart disease: an increasing problem Annu Rev Med 48 283–293 Occurrence Handle1:CAS:528:DyaK2sXhtFOjt78%3D Occurrence Handle9046962

    CAS  PubMed  Google Scholar 

  31. JC Suris MD Resnick N Cassuto RW Blum (1996) ArticleTitleSexual behavior of adolescents with chronic disease and disability J Adolesc Health 19 124–131 Occurrence Handle1:STN:280:ByiD3MnksFw%3D Occurrence Handle8863084

    CAS  PubMed  Google Scholar 

  32. J Therrien M Gatzoulis T Graham et al. (2001) ArticleTitleCanadian Cardiovascular Society Consensus Conference update: recommendations for the management of adults with congenital heart disease—part II Can J Cardiol 7 1029–1050

    Google Scholar 

  33. K Uzark P Bargen–Mazza ParticleVon E Messiter (1989) ArticleTitleHealth education needs of adolescents with congenital heart disease J Pediatr Health Care 3 137–143 Occurrence Handle10.1016/0891-5245(89)90063-1 Occurrence Handle1:STN:280:BiaB2MfhtlM%3D Occurrence Handle2724020

    Article  CAS  PubMed  Google Scholar 

  34. GR Veldtman SL Matley L Kendall et al. (2000) ArticleTitleIllness understanding in children and adolescents with heart disease Heart 84 395–397 Occurrence Handle10.1136/heart.84.4.395 Occurrence Handle1:STN:280:DC%2BD3cvks1WksQ%3D%3D Occurrence Handle10995408

    Article  CAS  PubMed  Google Scholar 

  35. CA Warnes R Liberthson GK Danielson et al. (2001) ArticleTitleTask force 1: the changing profile of congenital heart disease in adult life J Am Coll Cardiol 37 1170–1175 Occurrence Handle10.1016/S0735-1097(01)01272-4 Occurrence Handle1:STN:280:DC%2BD3M3gvFGrsg%3D%3D Occurrence Handle11300418

    Article  CAS  PubMed  Google Scholar 

  36. GD Webb RG Williams (2001) ArticleTitleCare of the adult with congenital heart disease J Am Coll Cardiol 37 1161–98

    Google Scholar 

  37. M Wright S Jarvis E Wannamaker D Cook (1985) ArticleTitleCongenital heart disease: functional abilities in young adults Arch Phys Med Rehabil 66 289–293 Occurrence Handle1:STN:280:BiqB38vosVE%3D Occurrence Handle4004518

    CAS  PubMed  Google Scholar 

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Acknowledgment

We thank Professor Samuel Menahem, for his encouragement, which led to the development of this research.

Author information

Affiliations

  1. Centre for Adolescent Health, Royal Children’s Hospital, Flemington Rd, Parkville, Victoria, 3052, Australia

    A. Hargrove & S.M. Sawyer

  2. Department of Cardiology, Royal Children’s Hospital, Flemington Rd, Parkville, Victoria, 3052, Australia

    D.J. Penny

  3. Department of Paediatrics, University of Melbourne, c/o Royal Children's Hospital, Flemington Rd, Parkville, Victoria, 3052, Australia

    D.J. Penny & S.M. Sawyer

Authors
  1. A. Hargrove
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  2. D.J. Penny
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  3. S.M. Sawyer
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Corresponding author

Correspondence to S.M. Sawyer.

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Hargrove, A., Penny, D. & Sawyer, S. Sexual and Reproductive Health in Young People with Congenital Heart Disease: A Systematic Review of the Literature. Pediatr Cardiol 26, 805–811 (2005). https://doi.org/10.1007/s00246-005-0950-3

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Keywords

  • Congenital heart disease
  • Sexual health
  • Reproductive health
  • Adolescents
  • Contraception
  • Pregnancy