A Qualitative Study of the Long-Term Sequelae of Childhood Bacterial Meningitis

Background: Despite the availability of antibiotic treatments and effective vaccines, bacterial meningitis continues to be associated with substantial morbidity and mortality.  The breadth of associated long-term sequelae complicate burden assessment using quantitative measurement tools.

Objectives: A semi-structured interview approach explored the range of sequelae that survivors attribute to bacterial meningitis, the time from that survivors continue to experience sequelae, and the ongoing burden to the survivor or caretaker(s).

Methods:  Survivors of childhood bacterial meningitis or their caretakers were identified through a support organization.  A thirty minute telephone interview focused on physical, cognitive, and economic consequences of bacterial meningitis.  Nine interviews were conducted, including three survivors and six family members/caregivers. 

Results:  The ages at diagnosis ranged from 7 months to 14 years.  The range of time since diagnosis was 1 to 11 years.  Reported sequelae included skin scarring (n=3), decreased learning performance (n=3), hearing loss (n=3), impaired motor skills (n=3), headaches (n=2) and loss of limbs/digits (n=2).  One survivor experienced kidney failure necessitating transplant.  In the three months prior to the interview, families reported $50 to over $1,000 in medical/prescription bills.  Survivors reported emotional trauma: one young man stated he is “scared to return to college because that’s where [he] got the illness,” while another commented “from the outside I look healthy, [but] I feel like I’m not.”  Meningitis affects relationships, as one caretaker remarked “meningitis has changed our family’s world.  It tears a family up.” 

Conclusions:  The results of this small study suggest survivors of childhood bacterial meningitis reported a wide range of sequelae.  Sequelae affected work and school performance and imparted a substantial financial burden.  Continued efforts employing larger study populations and methods to minimize recall bias are needed to quantify the breadth of sequelae.  Data from such studies are important to inform policy decisions regarding the application of immunizations.