Perspectives of adolescent girls with cystic fibrosis and parents on disease-specific sexual and reproductive health education.

Adolescent girls with cystic fibrosis (CF) face significant disease-specific sexual and reproductive health (SRH) concerns that are not typically addressed in routine clinical care. Additionally, there is a paucity of developmentally appropriate CF-specific SRH educational resources for this population. The goal of this study was to explore patient and parent attitudes toward SRH educational resources for adolescent girls with CF. Adolescent girls ages 13-18 years with CF and parents of daughters ages 10-18 years with CF completed individual, semi-structured interviews regarding their experiences and preferences around CF-specific SRH education and care. To facilitate discussion, participants provided feedback on the format and design of existing SRH educational resources. Qualitative analysis was conducted using a thematic analysis approach. We interviewed 26 participants (14 parents and 12 patients). The majority reported they had never discussed SRH in the CF care setting. All participants preferred a comprehensive, online patient educational resource complemented by real patient stories and interactive components. Participants noted that such resources should create a sense of normalcy and community around CF and female SRH. Most desired more frequent communication around SRH between adolescent girls with CF and their healthcare providers as a way to promote SRH knowledge, decision making, and health outcomes. Adolescent girls with CF and their parents desire an online patient educational resource that normalizes SRH and enhances patient-provider communication around these topics. Creation of developmentally appropriate resources would facilitate improved health outcomes around this aspect of comprehensive care in CF.

Kazmerski TM ，Hill K ，Prushinskaya O ，Nelson E ，Greenberg J ，Pitts SA ，Borrero S ，Miller E ，Sawicki GS ... -  《-》

Interprofessional provider educational needs and preferences regarding the provision of sexual and reproductive health care in cystic fibrosis.

Sexual and reproductive health (SRH) is an important disease-specific concern for adolescent and young adult (AYA) women that is not consistently addressed in cystic fibrosis (CF) centers. This study identifies educational needs and preferences of interprofessional CF providers regarding SRH in AYA women with CF. Interprofessional CF providers participated in an anonymous survey regarding general and CF-specific SRH knowledge and skills, factors for optimizing SRH care, and preferred approaches for SRH training. We calculated descriptive statistics for all respondents and stratified by provider type. A total of 523 providers completed the survey (39% physicians/advanced practice providers, 19% nurses, 20% social workers, and 22% other disciplines). Half reported comfort responding to female AYA SRH concerns; however, only one-third were comfortable asking appropriate questions and confident taking a sexual history. Only 29% were comfortable with their current CF-specific SRH knowledge. Respondents' preferred SRH topics for further training included: pregnancy/parenthood planning, sexual functioning, urinary incontinence, intimate partner violence, and taking a sexual history. Nearly two-thirds felt having connection to women's health specialists familiar with CF would facilitate SRH care. Approximately one-third desired SRH educational materials for providers to view at point-of-care or through online case-based learning; <10% were interested in role playing SRH skills. Many interprofessional CF providers lack comfort and skills in addressing SRH with AYA women with CF. Provider training needs and approaches identified in this study can be used to develop tailored educational interventions to improve comprehensive CF care.

Kazmerski TM ，Nelson EB ，Newman LR ，Haviland MJ ，Luff D ，Leichtner AM ，Hayes MM ，Miller E ，Emans SJ ，Sawicki GS ... -  《-》

Provider and Patient Attitudes Regarding Sexual Health in Young Women With Cystic Fibrosis.

To explore the attitudes, preferences, and experiences of patients with cystic fibrosis (CF) and CF providers toward sexual and reproductive health (SRH) care for young women with CF. Young women with CF aged 18 to 30 years from a US CF care center and pediatric and adult CF program directors from a national sample participated in qualitative interviews investigating their experiences regarding SRH care and their attitudes and preferences toward SRH care provision in the CF setting. Interviews were audio-recorded, transcribed, and coded by using a thematic analysis approach. Twenty-two patient participants and 16 CF program directors were interviewed. Themes shared by both groups included the importance of SRH discussion in the CF care setting, patient and provider discomfort as a barrier to SRH care, and the need for SRH educational resources and provider training to improve SRH care. Providers highlighted the lack of standardization around SRH care in the current CF care model. Patients desired SRH educational resources coupled with early SRH discussions initiated by their CF provider. Both CF providers and patients agree that the CF provider has a fundamental role in providing CF-specific SRH care. Educational resources coupled with individualized SRH discussions may facilitate improved SRH care for young women with CF. Investigation into the implementation of SRH education and services into pediatric-onset chronic disease care models is needed.

Kazmerski TM ，Borrero S ，Tuchman LK ，Weiner DJ ，Pilewski JM ，Orenstein DM ，Miller E ... -  《-》

Cystic fibrosis program directors' attitudes toward sexual and reproductive health in young women with CF.

Advancements in therapy have led to dramatic increases in the life expectancy of patients with cystic fibrosis (CF). As survival improves, young women with CF will have expectations for their sexual and reproductive health (SRH) futures similar to their counterparts without CF. As they face unique CF-specific SRH concerns, they may rely on CF care providers for disease-specific SRH care provision. The purpose of this study was to investigate the attitudes of CF providers toward female SRH and perceived barriers in the current CF care model. U.S. CF program directors (n = 16) participated in qualitative interviews investigating attitudes and barriers to female CF SRH care. Interviews were audio-recorded, transcribed, and coded using a thematic analysis approach. Participants (nine pediatric, five adult, and two combined) all agreed CF providers have a fundamental role in CF female SRH care. Most respondents named lack of time and patient and provider discomfort as significant barriers to effective SRH communication. Other reported barriers included: lack of training in SRH, family members in the room, low priority of SRH in setting of other CF issues, and lack of adequate rapport with patients. This is the first study to assess the attitudes and experiences of CF care providers toward SRH discussion and care among female CF patients. Despite their perceived fundamental role in CF female SRH care, CF providers face significant barriers. Investment in provider training is needed to better address the complex SRH needs of young female patients.

Kazmerski TM ，Tuchman LK ，Borrero S ，Weiner D ，Pilewski JM ，Orenstein DM ，Miller E ... -  《-》

"Our girls need to see a path to the future" --perspectives on sexual and reproductive health information among adolescent girls, guardians, and initiation counselors in Mulanje district, Malawi.

Nash K ，O'Malley G ，Geoffroy E ，Schell E ，Bvumbwe A ，Denno DM ... -  《Reproductive Health》