Perceptions of LARC Among AYA With Chronic Illness
LARC
A Qualitative Study of Contraceptive Choice and Decision-making Among Adolescent and Young Adults Living With Chronic Illness and Medical Complexity: a Focus on Long Acting Reversible Contraception (LARC)
1 other identifier
observational
67
1 country
1
Brief Summary
The investigators aim to perform a qualitative study exploring attitudes and perceived barriers to Long Acting Reversible Contraception (LARC), both implants and IUDs, among adolescent and young adults (AYA) with chronic illness at CHLA. While the literature examining barriers to LARC uptake is growing, its focus has been on older women and women who are not living with chronic illness. There remains a significant gap in the understanding of:
- 1.What adolescents and young adults from ethnically diverse, economically underserved communities know about LARCs
- 2.If and how LARCs fit into their considerations and decision making about contraception choices
- 3.Perceived barriers to LARC among AYA with chronic medical conditions
- 4.Information, perceptions, experiences that inform choices that may be unique to AYA living with chronic conditions
- 5.Explore the impact of the experience of living with chronic medical conditions on AYA patient attitudes toward and acceptance of LARCs
- 6.Identify AYA patient concerns and perceptions related to historical coercion and reproductive injustice experienced by minority communities that may reduce acceptance of LARC
- 7.Explore the relationship between patients' perception of pediatric subspecialty care providers' attitudes regarding sexual health and contraception guidance and patients' attitudes toward and acceptance of LARC
- 8.Identify factors related to patient's age, family's values, and medical condition, as well as historical events or legacies that may impact preference of implant vs intra-uterine device (IUD), independent of safety/medical contraindications, if choosing a LARC method.
- 9.Explore other social, cultural or psychological factors that influence perception and represent barriers to LARC access
- 10.The impact of chronic illness on AYA sense of bodily autonomy (including self-concept, history of other medical procedures, and concerns around mortality) reduces the attractiveness of LARC methods.
- 11.The intersectionality of multiple oppressions, including racism, xenophobia, sexism, and historical reproductive coercion and injustice implicitly reduce the attractiveness of LARC methods for AYA patients from minority communities with chronic medical conditions at CHLA.
- 12.Pediatric subspecialty providers' attitudes about sex, and comfort with providing patient-centered contraception counseling, as perceived by AYA patients, impact AYA patient attitudes towards and acceptance of LARC.
- 13.Preference of implant vs. IUD is related to patient's age, family values, and type of medical condition, as well as their knowledge of historical events related to contraception in their community, independent of safety/medical contraindications.
- 14.Additional perceived barriers, including fear or skepticism about LARC conferred by trusted sources of information such as family or social media, reduce the attractiveness and acceptance of LARC by AYA with chronic medical conditions
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P25-P50 for all trials
Started Apr 2021
Shorter than P25 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
April 16, 2021
CompletedFirst Submitted
Initial submission to the registry
July 1, 2021
CompletedFirst Posted
Study publicly available on registry
August 11, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
April 7, 2022
CompletedStudy Completion
Last participant's last visit for all outcomes
April 7, 2022
CompletedApril 17, 2025
May 1, 2022
12 months
July 1, 2021
April 14, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (2)
This research will identify chronically ill individuals experiences with sexual and reproductive health patient-centered counseling from their subspecialty providers
Findings from this study will inform the development of improved and more patient-centered counseling that takes into account the numerous intersecting factors CHLA patients experience. By hearing first-hand experiences from patients, investigators will be able to identify the gaps in knowledge and care as it pertains to the sexual and reproductive health of patients with chronic medical conditions.
Immediately after the focus groups and analysis have been completed
Focus groups will help identify gaps and areas for continuing education for pediatric sub-specialty providers as it pertains to the sexual and reproductive health of their patients
This research will contribute to the development of improved continuing education for pediatric specialty providers around the sexual and reproductive health needs of their patients, grounded in a cultural humility model and reproductive justice framework. By hearing from patients' experiences, investigators will be able to identify the areas that providers require extra knowledge or support to better educate their patients about their own sexual and reproductive health, especially as it relates to their chronic condition.
Immediately after the focus groups and analysis have been completed
Secondary Outcomes (1)
This research will identify how to improve sexual and reproductive health outcomes for medically complex AYAs
Immediately after the focus groups and analysis have been completed
Study Arms (13)
Minors 1
a one-time focus group will be conducted with 16-17 year old patients who have a variety of diagnoses
Minor 2
a one-time focus group will be conducted with 16-17 year old patients who have a variety of diagnoses
Spina Bifida
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Spina Bifida clinic
Pulmonology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the pulmonology clinic
Endocrinology 1
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Endocrinology clinic and have a diagnosis of Type I Diabetes
Endocrinology 2
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Endocrinology clinic and have a diagnosis of Type II Diabetes
Rheumatology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Rheumatology clinic
Gastroenterology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Gastroenterology clinic
Neurology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Neurology clinic
Cardiology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Cardiology clinic
Hematology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Hematology clinic
Nephrology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Nephrology clinic
Oncology
a one-time focus group will be conducted with adult patients (18-21) who are being seen in the Oncology clinic
Interventions
No intervention will be administered. Each patient will participate in a qualitative focus group discussing their beliefs/attitudes about their reproductive health and birth control
Eligibility Criteria
Adolescent and young adults with a chronic condition being treated at Children's Hospital Los Angeles
You may qualify if:
- years of age
- female or transmale identified (i.e. have potential for pregnancy)
- ICD9/10 diagnostic codes corresponding with chronic illness/disability from the following CHLA subspecialty services:
- rheumatology (e.g., lupus, JIA, scleroderma, etc.)
- hematology (sickle cell disease, thalassemia)
- oncology (survivors)
- cardiology (congenital and acquired cardiac disease, including transplant)
- endocrinology (Type 1/2 diabetes)
- neurology (epilepsy, multiple sclerosis, cerebral palsy)
- pulmonology (cystic fibrosis)
- gastroenterology (inflammatory bowel disease, liver transplant)
- nephrology (chronic kidney disease, kidney transplant) and
- spina bifida multidisciplinary clinic
- Receiving ongoing care (at least one visit per year for more than one year) in one of the ten sub-specialty services targeted for the study
- English speaking
- +4 more criteria
You may not qualify if:
- Patients from the above sub-specialty services less than 16 years of age or greater than 21 years of age
- Non-English speaking
- Consult patients or patients who have not received ongoing care (i.e., care at least one visit per year for more than one year) from these subspecialty services
- Neurocognitive disability
- Patients with known infertility and/or history of receiving gonadotoxic therapies, for whom childbearing is known to be impossible
- Patients who do not have access to digital platforms necessary to participate in the study
- Adult accompanying patient who is not legal parent/caregiver
- Non-English/non-Spanish speaking
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Children's Hospital Los Angeleslead
- Organoncollaborator
Study Sites (1)
Children's Hospital Los Angeles
Los Angeles, California, 90027, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Claudia Borzutzky, MD
Children's Hospital Los Angeles
- PRINCIPAL INVESTIGATOR
Ellen Iverson, MPH
Children's Hospital Los Angeles
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- OTHER
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- MD; Program Director, Adolescent Medicine Fellowship, CHLA; Clinical Associate Professor of Pediatrics, Keck School of Medicine, USC
Study Record Dates
First Submitted
July 1, 2021
First Posted
August 11, 2021
Study Start
April 16, 2021
Primary Completion
April 7, 2022
Study Completion
April 7, 2022
Last Updated
April 17, 2025
Record last verified: 2022-05
Data Sharing
- IPD Sharing
- Will not share
There is no plan to share individual participant data with other researchers