Family planning amoung young adults with OI
Interview with Leanne Baird, graduate of the University of Cincinnati Genetic Counseling Graduate Program
Who are you & what is your relationship to OI?
My name is Leanne Baird, and I am a recent graduate of the University of Cincinnati Genetic Counseling Graduate Program in the US. I have a passion for educating patients about genetic risks and conditions, as well as helping patients navigate difficult decisions in relation to said genetic risks. Due to these passions and OI being a genetic condition, selecting this project as my thesis was an easy choice.
Who was behind your research project?
Dr. Kara Ayers, PhD, my research advisor on this project who has OI type V herself, mentioned many misconceptions amongst individuals who have OI. This sparked a curiosity in us to determine OI inheritance knowledge levels within the young adult OI community, as we wanted to see if knowledge would impact future reproductive choices. Jodie Johnson, MS, CGC is a genetic counselor who has worked closely with many patients and families affected by OI over the years. Jodie was able to provide personal clinical experience to this project.
The final member of our team is Nichole Nidey, PhD, who provided her statistical expertise to pull interesting results from this our data.
What is this research project about?
1. Evaluate OI inheritance knowledge levels in young adults with a self-reported autosomal dominant or unknown OI type
2. Determine from who and when OI inheritance information is learned
3. Investigate the role of OI inheritance in future reproductive decisions
We included those who were 18 – 25 years old, with a self-reported autosomal dominant (types I-V) or unknown OI type. All participants had to have the ability to read and understand written English, as study materials were only available in English.
An author developed questionnaire was distributed to participants through the OI Foundation and OIFE newsletters, research blasts, and social media pages. The questionnaire was composed of 4 sections; part A collected demographics and evaluated for inclusion criteria, part B calculated total OI inheritance knowledge scores, part C determined OI inheritance information sources and the age participants 1st remember learning this information, and finally, part D addressed desire to have children, the influence and impact of differing factors on reproductive decision-making, and interest in reproductive options.
What are the most interesting findings & how may they impact care in the OI community?
Young adults with an autosomal dominant OI type have a good grasp on basic inheritance information, but knowledge gaps have been exposed that may require additional education, and there seems to be difficulty in applying basic inheritance information to more complex real-life situations.
The topics that show a need for increased education in this community include:
– OI does not skip generations
– The gene affected influences the OI type an individual has
– Chance of OI in a future child when both parents have OI
– Chance of a genetic condition in a future child when one parent has OI and the other has a different autosomal dominant genetic condition
Parents are the primary, and a reliable information source of OI inheritance information. Most participants report learning about the inheritance of OI under 10 years old, but the age of first learning this information does not impact knowledge level.
About half of our participants want to have a biological child in the future, with the inheritance of OI and personal physical experience with OI being the largest deterring factors. Participants are very interested in prenatal diagnosis and IVF with preimplantation genetic testing of monogenic disorders (IVF+PGT-M) but are not at all interested in using donor eggs/sperm. Interestingly, as OI inheritance knowledge level increases, interest in prenatal diagnosis decreases. Participants who reported inheritance as the most influential factor over reproductive decisions trend toward having less interest in prenatal diagnosis, more interest in donor use, and has no effect on interest in IVF+PGT-M. This study shows potential concerns and considerations that could arise when caring for young adults with OI who are making difficult reproductive decisions.