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    • #33236

      What strategies would you use to provide age and developmentally appropriate information about fertility preservation to parents of a pre-pubertal child?

      First, I consider developmental age of patient and get information from primary oncology team about developmental level and maturity, I also want to understand who are the patients primary caregivers and who helps the patient make decisions about their care. In addition, I review information about the treatment plan so that I can provide context as to how treatment may individually impact a patients reproductive potential. If possible, I work with the team to convey a planned time for when I will come to meet with the patient when caregivers are present.

      I initially start the conversation by asking the patient and family what they have already heard or been told about the risks of their treatment on reproductive health which gives me the opportunity to correct mis-information or expand on what they’ve already heard.

      If the patient is very young I may just direct all my information and discussion with the patient guardians. However, if they are school age I will tailor the conversation to include information about how our bodies are changing and how we may assist in preserving the ability to be parents in the future. For the adolescent and young adult population I do a review of “middle school health class” and we talk about what is happening during puberty, the potential changes that are happening or have happened in their bodies and ask both parents and patient to tell me where they are in the process of pubertal development; this is confirmed with an exam for tanner staging if appropriate. Pending developmental level I discuss in varying detail the different options for fertility preservation. Patients/families are provided with both verbal and written information about all options available.

      In the adolescent pediatric population I always ask permission from the patient to discuss issues related to reproductive health with parents present and acknowledge that it can sometimes be uncomfortable or awkward to have these conversations while normalizing that humans are sexual beings and being curious and interested in how our bodies are changing and/or sexuality is a normal part of development. I always ask for the opportunity to speak to the adolescent child on their own to confirm they understand what was shared separately from their parents, ask about sexual experience, if they have any questions that they want to address separate from their parents.

      Throughout the conversation, I stop frequently to take a pause and check in to see if they have any questions, want additional clarification before moving on. Both at the beginning and at the end of the conversation I acknowledge how overwhelming a cancer diagnosis can be, and how overwhelming the information I provide can be. I let them know that rarely do patients make a decision at the time of our conversation, while also expressing the urgency in needing to make plans should they want to proceed. I relay the spectrum of decisions that patients make — for some it is too overwhelming to contemplate, others are willing to sit with more risk and ambiguity, and some want to do everything possible, I convey that there is no right decision but the best decision for them at this time point.

      We then agree on a time that I will follow up either in person or by phone in the next day or two and allow them some time to sit with the information and discuss as a family. I also convey that I will continue to follow with them throughout their treatment and survivorship to address other issues such as sexual development, evaluation of sexual dysfunction, re-evaluation of fertility after treatment, and assistance with family building if desired.

       

       

       

    • #33240

      I love the review of “middle school health class!”  It is so important during these conversations that adolescent kids have a basic understanding of their body and reproductive system.  Do you use any visual aids or provide any written information specifically for this part of your discussion?

      • #33252

        Hi Kendra,

        I do use a tanner staging visual to talk about progressive changes and a diagram of the HPG axis to demonstrate how when we’re going through puberty our brain is maturing and able to send hormonal signals to our bodies. I think this is so helpful contextually for patients to understand what is happening in our bodies. For females undergoing ovarian stimulation we are replicating the hormone signaling but on a ramped up scale so we can get more than just one egg of the month. I always give written information summarizing what I’ve shared. When I started our program I build patient education documents for all types of fertility preservation, sexual health, contraception etc…

    • #33247

      The video scenario is well modeled to have discussion of fertility preservation in the primary teams clinic.  I like the way of assessing the background,  touching on the primary team recommendations, giving an introduction, availability of various choices, and expressing the urgency. The whole conversation is very softly spoken, giving time to process, asking perspectives from patient and family.

      In my practice, (outpatient sarcoma ) we open up the discussion to patient and family and refer them for AYA clinic for further discussion and procedures. We do not use any visual aids, to conduct this discussion.

       

      Very good summary by Katherine.

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