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.

The 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 PID-free future.

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 Children’s Center.

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 pain.

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.