Objective: Adolescent and young adult (AYA) women with pediatric-onset chronic diseases, such as cystic fibrosis (CF), face disease-specific sexual and reproductive health (SRH) concerns. Using concept mapping (CM), this study aimed to identify the SRH topics and outcomes valued by AYA women with CF and their parents.
Methods: Women with CF who were 13 to 30years of age and parents of 13- to 30-year-old daughters with CF participated in an online CM study. Participants individually brainstormed, rated, and sorted SRH topics important for AYA women with CF. Using multidimensional scaling, hierarchical cluster analyses, and t tests to assess rating differences, multidisciplinary stakeholders interpreted results during in-person meetings.
Results: Twenty-four participants (13 AYAs and 11 parents) generated 109 statements around SRH in CF; 88% completed rating and sorting. Sixteen stakeholders named 6 main clusters of concepts: fertility and pregnancy, deciding to have children, birth control, navigating life, sex, and gynecologic concerns. Participants rated birth control as highest in importance for adolescent women (mean = 3.9 ± 0.1 on a 5-point scale) and fertility and pregnancy as highest for young adult women (mean = 4.2 ± 0.04). Parents provided higher importance ratings for all clusters than patient participants. Stakeholders identified patient-centered outcomes for each cluster and focused on how to improve SRH knowledge, decision making, and patient-provider communication in the subspecialty setting.
Conclusions: Eliciting patient-centered outcomes using CM can inform improvements in the care of AYAs with pediatric-onset chronic diseases. The SRH topics and patient-centered outcomes identified in this study should inform enhancements to comprehensive clinical care delivery for these populations.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1016/j.acap.2018.08.011 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
Improving Adolescent and Young Adult Health Through Knowledge and Action on Gender-Based Violence.
J Adolesc Health
January 2025
Gender-based violence (GBV) refers to a specific form of interpersonal violence that is rooted in gender inequities and unequal distribution of power. GBV is defined as any type of violence, including physical, sexual, psychological, and economic, perpetrated against individual(s) based on actual or perceived gender, gender identity, gender expression, sex or sex characteristics, sexual orientation, or divergence from social norms on masculinity and femininity. Cisgender (cis) and transgender (trans) women and girls of all ages, including adolescents and young adults (AYAs) of ages 10-24 years, disproportionately experience GBV.
View Article and Find Full Text PDFSterilization Surgery Trends in Texas after Passage of the Texas Heartbeat Act: Sterilization surgery trends in Texas.
J Minim Invasive Gynecol
January 2025
Advanced Minimally Invasive Gynecologic Surgery, Department of Obstetrics, Gynecology & Reproductive Sciences, McGovern Medical School at The University of Texas Health Science Center, Houston, TX.
Objective: On September 1, 2021, abortion became illegal in Texas once embryonic cardiac activity is detected. The aim of this study was to compare women's characteristics undergoing surgical sterilization before and following the change in abortion-banning laws in Texas.
Design: A retrospective study.
A novel lightweight deep learning based approaches for the automatic diagnosis of gastrointestinal disease using image processing and knowledge distillation techniques.
Comput Methods Programs Biomed
December 2024
CenBRAIN Neurotech Center of Excellence, School of Engineering, Westlake University, Zhejiang, Hangzhou, China.
Background: Gastrointestinal (GI) diseases pose significant challenges for healthcare systems, largely due to the complexities involved in their detection and treatment. Despite the advancements in deep neural networks, their high computational demands hinder their practical use in clinical environments.
Objective: This study aims to address the computational inefficiencies of deep neural networks by proposing a lightweight model that integrates model compression techniques, ConvLSTM layers, and ConvNext Blocks, all optimized through Knowledge Distillation (KD).
The Role of Nutrient Supplements in Female Infertility: An Umbrella Review and Hierarchical Evidence Synthesis.
Nutrients
December 2024
NICM Health Research Institute, Western Sydney University, Penrith, NSW 2751, Australia.
Background And Objectives: Nutrient supplements are commonly used to improve fertility outcomes by women with infertility trying to conceive spontaneously or utilising medically assisted reproduction (MAR). However, despite their widespread use and perceived safety, there is a lack of clear guidance on the efficacy and safety of these supplements for female infertility. The aim of this umbrella review was to identify the best available and most recent evidence on the efficacy and safety of nutrient supplements for female infertility to provide evidence-based guidance for clinicians and reproductive couples.
View Article and Find Full Text PDFTransplant and Nontransplant Salvage Therapy in Pediatric Relapsed or Refractory Hodgkin Lymphoma: The EuroNet-PHL-R1 Phase 3 Nonrandomized Clinical Trial.
JAMA Oncol
January 2025
Department of Paediatric Haematology, Oncology and Immunodeficiency, University Hospital Justus-Liebig University Giessen, Giessen, Germany.
Importance: The current standard-of-care salvage therapy in relapsed/refractory classic Hodgkin lymphoma (cHL) includes consolidation high-dose chemotherapy (HDCT)/autologous stem cell transplant (aSCT).
Objective: To investigate whether presalvage risk factors and fludeoxyglucose-18 (FDG) positron emission tomography (PET) response to reinduction chemotherapy can guide escalation or de-escalation between HDCT/aSCT or transplant-free consolidation with radiotherapy to minimize toxic effects while maintaining high cure rates.
Design, Setting, And Participants: EuroNet-PHL-R1 was a nonrandomized clinical trial that enrolled patients younger than 18 years with first relapsed/refractory cHL across 68 sites in 13 countries in Europe between January 2007 and January 2013.
Want AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!