(37) Development and Evaluation of “Period Kits” for Adolescents with Intellectual and Developmental Disabilities

Background: Pediatric patients with intellectual and developmental disabilities (IDD), including autism and others, experience greater unmet medical service needs and decreased satisfaction with care compared to those without these diagnoses. Gynecologic services are similarly impacted. There are currently no evidence-based, comprehensive resources widely available to prepare young adolescents with IDD and their families for menarche, a potentially challenging life transition.

Methods: This IRB-approved qualitative and feasibility study investigated the efficacy of “period kits” made specifically for patients with IDD, with aim to ease anxiety and improve preparedness for menarche. Custom kits were built: a colorful pouch contained an original social story (Fig. 1), an illustrated resource list, and period management items. Outreach via flyer and social media was done for recruitment, as well as chart review screening for age, premenarchal status and diagnosis. Potential subjects were recruited by email or phone, and a pilot cohort of nine participating family groups was established. Once enrolled, each family was virtually interviewed for study consent and an initial survey. A kit was then mailed to participating households, and a second interview was done 2 weeks later. Study surveys queried participants’ understanding and feelings surrounding menarche before and after kit exposure and feedback on the kit itself.

Results: Survey responses showed that kits augmented general menstruation comprehension; 75% of participants reported an increase in the child’s knowledge after kit exploration. We also observed an increase in parents’/guardians’ sense of preparedness and comfort in conversing with their children about periods. All families reported that kits were— or, for participants earlier in the puberty education process, had potential to be— helpful conversation starters regarding menstruation. The novel social story and pair of period underwear were the most helpful kit items; 88% of participants rated these as “extremely” helpful. The tampon was generally felt to be the least helpful.

Conclusions: Our custom “period kits” offer a constructive way to deliver IDD-friendly information about menstruation to children and families. Limitations of this study are small size and qualitative nature, potentially limiting reliability and external data validity. Ideally, our kit could be optimized based on study data, adapted by other providers, and distributed widely to interested families. When these kits are delivered alongside age-appropriate counseling, long-term patient experiences for premenarchal children with IDD may be improved.