INTRODUCTION: The changing outcomes for young cystic fibrosis (CF) patients means that reproductive health issues have become an integral part of CF management. AIM: The aim of this study was to investigate the knowledge and experiences of reproductive and sexual health issues in women with CF and to investigate the knowledge and reproductive health attitudes of their parents. MAIN OUTCOME MEASURES: Assessment of reproductive and sexual health knowledge in female CF patients and their parents. METHODS: A questionnaire study directed to 120 Polish women with CF aged 16 years and older and their parents. RESULTS: Sixty-four patients and their parents responded to the questionnaire. Sixty-eight percent of the patients started sexual intercourse at a mean age of 19.2 years. Eighty-four percent of all sexually active women reported that they did not use any form of contraception. Only 32.8% of women understood the problems connected with their own and male fertility in CF. Popular scientific publications and other CF patients were identified as the most important source of information. Only 23% of parents understood the problems connected with female fertility in CF; 44% of parents thought that man with CF had normal fertility. Seventy-five percent of the women and 40% of the parents felt that sexual health discussions should begin between age 12 and 14 years with a CF doctor and the mother. CONCLUSIONS: Our study showed that significant knowledge gaps exist regarding fertility issues in both CF patients and CF parents. Women with CF have some general knowledge about sexual issues but insufficient knowledge to have a safe sexual life. The results helped us to develop the educational program for CF patients.
INTRODUCTION: The changing outcomes for young cystic fibrosis (CF) patients means that reproductive health issues have become an integral part of CF management. AIM: The aim of this study was to investigate the knowledge and experiences of reproductive and sexual health issues in women with CF and to investigate the knowledge and reproductive health attitudes of their parents. MAIN OUTCOME MEASURES: Assessment of reproductive and sexual health knowledge in female CF patients and their parents. METHODS: A questionnaire study directed to 120 Polish women with CF aged 16 years and older and their parents. RESULTS: Sixty-four patients and their parents responded to the questionnaire. Sixty-eight percent of the patients started sexual intercourse at a mean age of 19.2 years. Eighty-four percent of all sexually active women reported that they did not use any form of contraception. Only 32.8% of women understood the problems connected with their own and male fertility in CF. Popular scientific publications and other CF patients were identified as the most important source of information. Only 23% of parents understood the problems connected with female fertility in CF; 44% of parents thought that man with CF had normal fertility. Seventy-five percent of the women and 40% of the parents felt that sexual health discussions should begin between age 12 and 14 years with a CF doctor and the mother. CONCLUSIONS: Our study showed that significant knowledge gaps exist regarding fertility issues in both CF patients and CF parents. Women with CF have some general knowledge about sexual issues but insufficient knowledge to have a safe sexual life. The results helped us to develop the educational program for CF patients.
Authors: Natalie E West; Traci M Kazmerski; Jennifer L Taylor-Cousar; Vin Tangpricha; Kelsie Pearson; Moira L Aitken; Raksha Jain Journal: Pediatr Pulmonol Date: 2021-10-08