A Johns Hopkins Children’s Center
study comparing perceptions of pelvic inflammatory disease (PID) among teen
girls and parents has found that parents seriously underestimate the emotional
and medical impact this sexually transmitted disease has on teenagers.
Hopkins team findings, published in the October issue of the BritishMedical Journal: Sexually Transmitted Infections, show that, overall, parents viewed PID and
related complications as less burdensome than teens did and believed PID
affected teens less than teens themselves said it did. Teens were also more
willing than parents to give up time from their lives in exchange for a
The researchers believe this is
the first analysis of teenage perceptions about the medical and emotional burdens
of PID and believe it offers valuable insights for health economists and health
policy researchers who use such patient perceptions to calculate the medical
and financial toll a disease takes on society and to allocate resources for
prevention and treatment. Researchers traditionally have used adult patient
data to gauge the burden of PID on pediatric patients, but the gap between teen
and parental perceptions revealed in the Hopkins study shows the teen
perspective may be gravely underappreciated, the investigators say.
“With sexually transmitted
diseases, teen girls often seek confidential care, assume full responsibility
for their treatment and behavior and are expected to manage their own disease
so it is their perceptions that
should matter the most,” says study lead investigator Maria Trent, M.D.,M.P.H. , a pediatrician and adolescent health specialist at Johns Hopkins
The research involved 134 girls,
ages 12 through 19, and 121 parents who had raised or were currently raising
teens. Only a handful of participants reported ever having PID, but a fifth of
the teenagers and a quarter of the parents said they had been treated for a
sexually transmitted infection (STI), which can lead to PID.
Using a web-based questionnaire,
the research team asked participants to rate five hypothetical scenarios
describing different degrees of PID severity, treatment and complications. The
scenarios ranged from mild disease requiring complex outpatient treatment with
small risk for long-term complications to severe disease requiring hospitalization.
Other scenarios included PID complications such as ectopic pregnancies,
infertility and chronic pelvic pain. Using a scale of 0 to 100, the participants
estimated the effect of PID on their lives, with 0 being immediate death and
100 signifying a healthy, complication-free life. Girls were asked to respond
for themselves, while parents were asked to respond on behalf of their children.
Compared with adults, teens, on
average, anticipated more adverse life-long effects from PID — expressed by
lower numeric scores — for all scenarios. For example, teens assigned an
average score of 62 to mild PID requiring outpatient treatment, compared with an
average of 76 by parents. The score for PID requiring hospitalization was 57 among
teens compared with 74 among parents, 55 vs. 73 for ectopic pregnancy, 59 vs.
68 for infertility and 48 vs. 61 for chronic abdominal pain. The researchers next asked participants how
many months or years of their lives they’d give up to avoid PID and related
complications. The time trade-off question is a common way to gauge the
perceived burden of a disease. Compared with parents, teens were more willing
to give up time from their remaining lives in return for a PID-free future. For
example, teens were ready to give up one year for every 50 years of life to
avoid pregnancy complications or outpatient treatment and two years to avoid
hospitalization and infertility. Parents weren’t willing to give up any time.
Both parents and children were willing to trade a year to avoid chronic pelvic
PID is an inflammation of the
reproductive organs resulting from STIs like chlamydia and gonorrhea, among
others. PID affects more than 800,000 women in the United States each year, one
in 10 of whom develops infertility, according to the Centers for Disease
Control and Prevention (CDC).
Harold Lehmann, Qiang Qian, Carol
Thompson, Jonathan Ellen and Kevin Frick, all of Hopkins, were co-investigators
on the study.
The research was funded by the CDC.