The United States Food and Drug Administration has raised concerns about the quality of compounded medicines.  People with developmental disabilities or feeding tubes may require liquid formulations throughout the lifespan and have no choice but to use compounding pharmacies or reformulate medications at home through do-it-yourself (DIY) approaches.

An online survey of caregivers of people with disabilities was performed to assess experiences with compounding pharmacies and DIY techniques.  Participants were recruited through social media groups representing more than 10,000 unique caregivers.

Forty-four caregivers of people with disabilities from seven months to 22 years old responded: 48% use feeding tubes.  Respondents compounded 8 different medications and modified 19 medications with DIY methods.  74% of caregivers who responded have a bachelor’s degree or higher; the majority identify as white/Caucasian (92%). The most commonly reported diagnoses include “epilepsy/seizures” (74%), cerebral palsy (35%), and autism spectrum disorder (13%). 

Caregivers expressed concerns about pharmacy wait times (50%), lack of health insurance coverage for compounding (50%), unavailability of local services (38%), conflicting information on storage conditions (27%), quality (27%), and conflicts with diet (23%).  Concerns about DIY methods included altering medication quality or dose (56%) and complications with mixing in food or drink (33%).

Ongoing challenges and concerns with compounding pharmacy and DIY solutions represent a significant quality of life burden that may also have serious clinical implications.  There remains a large unmet need for affordable, accessible, and high-quality liquid formulations of medications.  A larger study should be conducted to address the specific needs of the subpopulations in our study.