Abstract
To investigate daily functioning, health-related quality of life (HRQoL), and overall quality of life (QoL) in young adult survivors of childhood bacterial meningitis (BM) thereby shedding light on very long-term outcomes and contributing to global meningitis burden estimates. In this cross-sectional study, the Weiss Functional Impairment Rating Scale-Self Report (WFIRS-S), the Patient-Reported Outcomes Measurement Information System Scale vGlobal Health v1.2 (PROMIS-GH), PROMIS-29 profile v2.01 and PROMIS Satisfaction with Social Roles and Activities Short Form 4a v2.0 instruments were administered to 483 survivors of childhood BM who participated in the 20|30 Dutch Postmeningitis study. Mean WFIRS-S scores were calculated as well as mean T-scores of the PROMIS instruments. PROMIS scores of survivors of childhood BM were compared with age-matched Dutch reference scores from the general population. Overall, survivors of childhood BM reported comparable or even better levels of daily functioning, HRQoL, and overall QoL (Global02) than the age-matched Dutch reference group. 10.2% of survivors of childhood BM reported poor mental health and 1.0% of survivors of childhood BM reported poor physical health. The average score of survivors of childhood BM for overall QoL (Global02) was 3.81 (on a scale from 1, indicating poor QoL, to 5, indicating excellent QoL). CONCLUSION: Young adult survivors of childhood BM reported similar and even better levels of daily functioning, HRQoL, and overall QoL than age-matched Dutch reference scores. However, clinicians and healthcare workers should be mindful of poor mental and physical health of some survivors of childhood BM because these survivors also face problems with functioning in daily life. WHAT IS KNOWN: • Acute bacterial meningitis is a life-threatening infection which may lead to devastating lifelong disabilities. • Health-related quality of life is decreased in school-age survivors of bacterial meningitis. WHAT IS NEW: • The present study shows that HRQoL in survivors of childhood BM improves over time • However, especially poor mental health in adolescent and young adult survivors is associated with impaired functioning in daily life.