(286) A Multidisciplinary Approach to Assessing Reproductive Health Knowledge in adolescent patients with Cystic Fibrosis: Considerations for a post Trikafta World

Background: Given the advancing lifespan of people with Cystic Fibrosis (pwCF) issues concerning fertility and reproduction are increasingly important. With the advent of Trikafta, pwCF are living longer, and are more likely to consider changing life goals including developing relationships with significant others and family planning. Females with CF taking Trikafta can more easily conceive a child. It is still believed that 98% of males with CF are infertile. Prior to this study, our clinic did not have a protocol to discuss reproductive health concerns as this was not part of our routine care. This study aims to assess the reproductive health knowledge of patients ages 16 and older who receive care at the JHACH Pediatric CF Center with the goal of opening dialogue regarding reproductive health moving forward in the clinic.

Methods: The CF Center Social Worker (SW) and Mental Health Coordinator (MHC) administered the CF R.I.S.E Sexual Health knowledge assessments to patients ages 16 and older. The female assessment includes 9 questions. The male assessment includes 7 questions. These questions include but are not limited to ideas of pregnancy, male infertility, discussion of alternate reproductive mechanisms, sexually transmitted infections (STI) and prevention of STI. Prior to administering the assessment, patients and their family members were notified of our intent and verbal assent was obtained from caregivers and the patients as appropriate. The assessment was able to be completed during the clinic visit utilizing an iPad. The patient was given the option to complete the assessment without the caregiver present for privacy concerns. The assessment was reviewed with the patient and educational supplements were provided by the SW or MHC. Referrals to other specialties (Adolescent Medicine, Gynecology, and/or Urology) were discussed and offered at the request of the patient. Patients were reassessed with the same instrument 6 months later to determine the effectiveness of the intervention.

Results: 35 patients were age eligible to take the CF R.I.S.E. knowledge assessments. 26 patients participated and 7 of the 26 (27%) identified as female. 1 parent declined on behalf of the patient. The primary reason for decline was lack of time during the clinic visit and needing to attend to other appointments. The average initial score for males was 69.2% (0-100). The most commonly missed question for males was regarding infertility and the absence of the vas deferens with more patients believing they do not produce any sperm. The average initial score for females was ­­­­­­­­­­­­­­­­­­­85.8% (78-100). The most commonly missed question for females was regarding risk factors for miscarriage, ovarian cysts or endometriosis. Patients more commonly chose a risk of miscarriage than none of the above. The follow up scores for males did improve to 86% (71-100) and to 88% (78-100) for females.

Conclusions: The importance of addressing reproductive health in the CF clinic is indicated as a result of this study. With more patients on modulators and therefore potentially living longer, CF Center Care Teams have the opportunity to increase conversations around reproductive health. There continues to be significant misinformation and misunderstanding about the diagnosis of CF and its effect on reproductive health. Patients trust their CF Care team in providing accurate knowledge about their diagnosis and providers of different disciplines should become comfortable discussing this topic.

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