Live From the GI Conference: GERD Caregivers

A recent study presented at the NASPGHAN conference confirms what parents of children with reflux experience every day-Gastroesophageal Reflux Disease (GERD) has a significant impact on finances, caregiver’s feelings and their ability to work outside of the home.

Parents of children with GERD ages 1-5 years were asked to fill out a survey regarding their care giving experiences. Approximately fifty percent of parents reported a delay of 3 months or more before receiving a diagnosis of GERD. Almost 80% of children were evaluated by two doctors before being diagnosed and almost 30% required 3 or more visits before diagnosis.

Most caregivers (70%) reported feeling fear and helplessness before their child was diagnosed with GERD. A smaller number of parents (30%) reported the doctor thought they were over reacting to the child’s symptoms. An equal number of parents (30%) expressed frustration with the process of getting a diagnosis and wished the diagnosis and treatment had started sooner.

A child with a diagnosis of GERD led 40% of parents to change their work status (reduce work hours, leave of absence or resign).

I found the study participants reports on the financial burden of GERD especially interesting. Caregivers reported average monthly expenses related to GERD of $166.00 per month with about $55.00 for doctors visits. Parents often buy wedges to elevate the bed, additional baby equipment and specialized formula. Only a few states have authorized insurance companies to pay for medical foods such as hypoallergenic formula so parents and advocates need to make their voices heard.

When my daughter was struggling with reflux, I quit my job and saw the medical bills soar. It seemed especially harsh when I added up the yearly costs and figured that the tab for her medical expenses was enough to take our family on a nice vacation!

The study reflects the beliefs and experiences of many parents I talk to who are struggling with the emotional and financial struggles of caring for a child with GERD. I hope the study will help doctors, employers and families recognize the stress and burden caring for a child places on caregivers, especially mothers.