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adolescents, congenital heart disease, counseling, reproductive health



  1. Burstrom, Asa PhD, RN
  2. Acuna Mora, Mariela PhD, RN
  3. Sparud-Lundin, Carina PhD, RN
  4. Moons, Philip PhD, RN
  5. Bratt, Ewa-Lena PhD, RN


Background: Studies show that adolescents with congenital heart disease (CHD) lack knowledge about reproductive health in relation to their CHD.


Objective: The aims were to investigate (i) the proportion of adolescents with CHD receiving information about reproductive health, (ii) the level of reproductive health knowledge in adolescents with CHD, and (iii) potential correlates for receiving information about reproductive health.


Methods: A total of 202 adolescents aged 14 to 18 years (mean age 15.7 +/- 1.1 years) with CHD completed the Knowledge Scale for Adults with Congenitally Malformed Hearts and were asked if they had received information about contraception and pregnancies or if this would be of interest.


Results: Few adolescents could recall receiving information about contraceptives (5%) and pregnancies (15%). Furthermore, only 24% adolescents wanted information about contraceptives, and 42% of the female adolescents wanted information about pregnancies. There was a higher probability of male adolescents wanting information about contraceptives. Knowledge about reproductive health varied regarding knowledge about why they had been born with CHD (68%), knowledge about the hereditary nature of the CHD (48%), and if sexual activity could worsen their CHD (70%). However, few (11%) had knowledge about the elevated risk of having a child with CHD. Age was associated with a higher probability of having knowledge about the risks of having a child with CHD.


Conclusions: The low number of adolescents receiving information about contraceptives and pregnancies may have implications for future health and family planning. Future research is needed to identify and evaluate successful communication strategies that help to identify adolescents' preferences on how to approach this sensitive topic.