Provider Attitudes and Practices toward Sexual and Reproductive Health Care for Young Women with Cystic Fibrosis.

To investigate the attitudes and practices of cystic fibrosis (CF) providers toward sexual and reproductive health (SRH) care in young women with CF. Adult and pediatric US CF providers were sent an online survey exploring their attitudes toward SRH importance, SRH care practices, and barriers/facilitators to SRH care in adolescent and/or young adult women. Descriptive statistics and logistic regression were used to analyze results. Attitudes toward the importance of SRH care in patients with CF and self-report of practice patterns of SRH discussion. Respondents (n = 196) were 57% pediatric (111/196) and 24% adult physicians (48/196) and 19% nurse practitioners (NPs)/physician assistants (PAs) (37/196). Ninety-four percent of respondents believed SRH was important for female patients with CF (184/196). More than 75% believed SRH care should be standardized within the CF care model (147/196) and 41% believed the CF team should have the primary role in SRH discussion and care (80/196). For many CF-specific SRH topics, discrepancies emerged between how important respondents believed these were to address and how often they reported discussing these topics in practice. Significant differences in SRH attitudes and practices were present between adult and pediatric physicians. The most significant barriers to SRH care identified were lack of time (70%, 137/196) and the presence of family in clinic room (54%, 106/196). Potential facilitators included training materials for providers (68%, 133/196) and written (71%, 139/196) or online (76%, 149/196) educational resources for patients. CF providers perceive SRH topics as important to discuss, but identify barriers to routine discussion in current practice. Providers endorsed provider training and patient educational resources as means to improve SRH delivery.

Kazmerski TM ，Borrero S ，Sawicki GS ，Abebe KZ ，Jones KA ，Tuchman LK ，Weiner DJ ，Pilewski JM ，Orenstein DM ，Miller E ... -  《-》

Clinician perspectives and practices related to sexual and reproductive care provision for males with cystic fibrosis.

Males with cystic fibrosis (MwCF) have unique sexual and reproductive health (SRH) concerns. This study investigates multidisciplinary CF clinician perspectives related to SRH for MwCF in the current era of CF care. We surveyed multidisciplinary clinicians exploring attitudes, practices, and preferences toward male CF SRH care. We compared responses across groups by population served (pediatric vs. adult vs. both pediatric and adult MwCF) using chi square/Fisher's exact tests. A total of 297 clinicians completed the survey (41 % pediatric, 36 % adult, 23 % both; 27 % physicians, 24 % social workers, 11 % nurses, 41 % other). Nearly all (98 %) believed the CF team had a role in SRH care with 75 % believing they should be primarily responsible. Pediatric clinicians were less likely to deem SRH topics important and less likely to report annual discussions compared to adult colleagues (all p<0.05). Pediatric clinicians reported less comfort in their SRH knowledge than adult colleagues (p<0.001) and in their ability to provide SRH care (p<0.05). Common barriers endorsed by respondents included lack of SRH knowledge (75 %) and presence of family/partners in exam room (64 %). A majority rated SRH screening tools (91 %), partnerships with SRH specialists (90 %), clinician training (83 %), and management algorithms (83 %) as potential facilitators. Multidisciplinary CF clinicians perceive SRH for MwCF as important but report suboptimal SRH discussions. Pediatric clinicians report significantly less comfort and skill in discussing and managing male SRH. Identified barriers and facilitators should be used to improve SRH care for MwCF.

Kazmerski TM ，Stransky OM ，Lavage DR ，Hughan KS ，Jain R ，Ladores SL ，Stalvey MS ，Tangpricha V ，Taylor-Cousar JL ，West NE ，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 ... -  《-》

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 ... -  《-》

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 ... -  《-》