Findings From a Congenital Cytomegalovirus Birth Registry : - PowerPoint PPT Presentation

Findings From a Congenital Cytomegalovirus Birth Registry : Profile for Texas Jerry A. Miller, Ph.D. 1 , 2 , Gail J. Demmler-Harrison, M.D. 1,2 , Jill M. Johnson 2 , and Carol Greisser, R.N 1,2 And the Congenital CMV Registry Group

Background • Purpose and formation of Registry • Started in 1982 • National in scope; Focus here on Texas-born cases • One-page registry form

Objectives of Registry • Information on birth characteristics of cCMV infants • Possible changes in incidence • Racial/ethnic differences • Trends over Time • Identify targets for prevention • To inform future studies

Methods One-page Case Report Form • Keep it simple for reporting sites • Capture essential information

One-Page Registry form Case (paste image of form here) Report (explanation of some items on form) Form

Methods • Administrative Center in Houston • Electronic database • Statistical analyses • Periodic analyses • Coordinated with CDC

Findings •Cases accrued from 1982 - 2016 • 1,066 cases nationwide reported •43 states •452 cases in Texas •18 reporting physicians •104 hospitals •42 counties many in Houston

Cases by Year (in Texas)

Findings - DEMOGRAPHICS Insurance Mother’s Percent Race/Ethnicity N % Age Married Private Medicaid Non-Hispanic 28.3 (5.4) 84.0 119 (64%) 209 46.2 62 (33%) White (NHW) Non-Hispanic 23.5 (6.9) * 25.4 ** 14 (22) * 75 16.6 49 (77) * Black (NHB) Hispanic White 22.9 (6.2) * 50.6 ** 21 (24) * 66 (75) * 99 21.9 (WH) 24.9 (7.5) 54.2 ** 19 (37) * Other/unknown 69 15.3 32 (62) * 26.0 (6.6) 63.2 179 (39.6) Total 452 100.0 32 (62) * Different from NHWhites at p < .02 *Different from NHW and NHBlacks at p < .02

Findings - DEMOGRAPHICS Insurance Mother’s Percent Race/Ethnicity N % Age Married Private Medicaid Non-Hispanic 28.3 (5.4) 84.0 119 (64%) 209 46.2 62 (33%) White (NHW) Non-Hispanic 23.5 (6.9) * 25.4 ** 14 (22) * 75 16.6 49 (77) * Black (NHB) Hispanic White 22.9 (6.2) * 50.6 ** 21 (24) * 66 (75) * 99 21.9 (WH) 24.9 (7.5) 54.2 ** 19 (37) * Other/unknown 69 15.3 32 (62) * 26.0 (6.6) 63.2 179 (39.6) Total 452 100.0 32 (62) * Different from NHWhites at p < .02 *Different from NHW and NHBlacks at p < .02

Mothers’ Age

Mothers’ Age and Race/Ethnicity

Findings - continued p < .002 p < .002

Findings – BIRTH CHARACTERISTICS Head Circum- Weight, g Length, cm ference, cm Mean (SD) Mean (SD) Mean (SD) Overall 2547 (850) 45.3 (5.6) 30.6 (3.1)

Findings – BIRTH CHARACTERISTICS Head Circum- Race/ Weight, g Length, cm ference, cm Ethnicity Mean (SD) Mean (SD) Mean (SD) of Mother Overall 2547 (850) 45.3 (5.6) 30.6 (3.1) 2792 (834) 47.7 (4.6) 34.2 (3.0) NH White 2233 (821)* 44.3 (5.9)* 29.9 (3.7)* NH Black 2431 (801)* 45.7 (4.9)* 31.3 (3.4)* Hispanic White 2272 (784)* 45.3 (5.6)* 30.6 (3.1)* Other/unk * Different from NHWhites at p < .001

Findings – LOW BIRTHWEIGHT Low Birth- Race/ Weight, g weight Ethnicity Mean (SD) (<2500g) of Mother N (%) 2792 (834) NH White 76 (36.4) 2233 (821)* 45 (60.0)** NH Black Hispanic 2431 (801)* 50 (50.5)** White 2272 (784)* Other/unk 35 (50.7)** 2547 (850) 206 (45.6) Total * Different from NHWhites at p < .001 or ** p < .05

Findings – LOW BIRTHWEIGHT . . . But not pre-term Low Birth- Gestational Pre-term Race/ Weight, g weight Age (< 32 weeks Ethnicity Mean (SD) (<2500g) Mean (SD) gestation) of Mother N (%) N (%) 2792 (834) NH White 76 (36.4) 37.1 (3.7) 22 (10.5) 2233 (821)* 45 (60.0)** 36.2 (4.0) 10 (13.3) NH Black Hispanic 2431 (801)* 50 (50.5)** 36.5 (4.0) 12 (12.1) White 2272 (784)* Other/unk 35 (50.7)** 35.8 (4.0)** 10 (14.5) 2547 (850) 206 (45.6) 36.7 (3.9) 54 (11.9) Total * Different from NHWhites at p < .02 or ** p < .05

Normal Low BW Low Rank Symptom BW % with % with Birthweight SGA 60.0 ** 9.5 1 Low Platelets 55.5 ** 22.6 2 Hearing Impairment 50.8 * 33.5 3 Petechiae 46.2 ** 28.6 4 Brain Calcifications 45.6 ** 26.2 5 Bilirubinemia 45.1 * 29.0 6 Enlarged Liver 44.2 ** 20.1 7 Microcephaly 39.5 ** 10.6 8 Enlarged Spleen 39.2 ** 17.2 9 Jaundice 34.4 ** 16.9 10 Neuro Abnormality 30.5 ** 11.3 11 ALT > 100 IU 18.8 19.5 12 Anemia 9.6 7.3 13 Retinitis 9.5 5.0 14 Pneumonia 9.3 * 4.2 15 Seizures 6.1 4.7 16 4.7 ** 2.3 Average no. of Symptoms 36 (17.5%) 4 (1.6%) Deaths

Normal Low BW Low Rank Symptom BW % with % with Birthweight SGA 60.0 ** 9.5 1 Low Platelets 55.5 ** 22.6 2 Hearing Impairment 50.8 * 33.5 3 Petechiae 46.2 ** 28.6 4 Brain Calcifications 45.6 ** 26.2 5 Bilirubinemia 45.1 * 29.0 6 Enlarged Liver 44.2 ** 20.1 7 Microcephaly 39.5 ** 10.6 8 Enlarged Spleen 39.2 ** 17.2 9 Jaundice 34.4 ** 16.9 10 Neuro Abnormality 30.5 ** 11.3 11 twice as ALT > 100 IU 18.8 19.5 12 common Anemia 9.6 7.3 13 Retinitis 9.5 5.0 14 Pneumonia 9.3 * 4.2 15 Seizures 6.1 4.7 16 4.7 ** 2.3 Average no. of Symptoms 36 (17.5%) 4 (1.6%) Deaths

Findings: SYMPTOMS AT BIRTH Non-Neurological Neurological Laboratory 119/376 Intracranial 122/349 Low 123/319 SGA (31.6) Calcification (35.0) Platelets (38.6) 138/379 Hearing 123/304 Bilirubin- 109/297 Petechiae (36.4) Impairment (40.5) emia (36.7) Enlarged 114/372 86/369 43/225 Microcephaly ↑ ALT Liver (30.6) (23.3) (19.1) Enlarged 101/375 24/349 Co- 17/158 Retinitis Spleen (26.9) (6.9) Infection (10.8) 91/370 20/376 Antiviral 67/185 Jaundice Seizures (24.6) (5.3) Treatment (36.2) 29/349 Anemia (7.3) 24/374 Pneumonia (6.4)

Findings: SYMPTOMS IN > 25% of Infants Non-Neurological Neurological Laboratory 119/376 Intracranial 122/349 Low 123/319 SGA (31.6) Calcification (35.0) Platelets (38.6) 138/379 Hearing 123/304 Bilirubin- 109/297 Petechiae (36.4) Impairment (40.5) emia (36.7) Enlarged 114/372 86/369 43/225 Microcephaly ↑ ALT Liver (30.6) (23.3) (19.1) Enlarged 101/375 24/349 Co- 17/158 Retinitis Spleen (26.9) (6.9) Infection (10.8) 91/370 20/376 Antiviral 67/185 Jaundice Seizures (24.6) (5.3) Treatment (36.2) 29/349 Neurological 70/357 Anemia (7.3) Abnormality (19.6) 24/374 Pneumonia (6.4)

Findings: > 25% Among Non-Hispanic Whites Non-Neurological Neurological Laboratory Intracranial Low SGA 20.8 27.8 33.8 Calcification Platelets Hearing Bilirubin- Petechiae 30.2 41.3 27.8 Impairment emia Enlarged 25.8 Microcephaly 18.2 ↑ ALT 18.1 Liver Enlarged Co- 23.9 Retinitis 4.0 6.3 Spleen Infection Antiviral Jaundice 18.9 Seizures 3.2 45.9 Treatment Neurological Anemia 4.7 15.3 Abnormalitity Pneumonia 3.7

Findings: > 25% Among Non-Hispanic Blacks Non-Neurological Neurological Laboratory Intracranial Low SGA 52.5 * 38.0 26.4 Calcification Platelets Hearing Bilirubin- Petechiae 32.8 40.5 30.8 Impairment emia Enlarged 24.6 Microcephaly 31.6 ↑ ALT 7.7 Liver Enlarged Co- 24.6 Retinitis 7.4 8.0 Spleen Infection Antiviral Jaundice 21.1 Seizures 5.1 26.6 Treatment Neurological Anemia 11.1 17.2 Abnormalitity Pneumonia 8.9

Findings: > 25% Among White Hispanics Non-Neurological Neurological Laboratory Intracranial Low SGA 40.0 * 40.5 50.7 * Calcification Platelets Hearing Bilirubin- Petechiae 47.3 * 38.5 45.2 * Impairment emia Enlarged 37.3 * Microcephaly 28.4 ↑ ALT 23.5 Liver Enlarged Co- 30.7 Retinitis 11.6 7.1 Spleen Infection Antiviral Jaundice 32.4 * Seizures 12.3 36.7 Treatment Neurological Anemia 13.9 30.9 * Abnormalitity Pneumonia 12.2

Findings - SYMPTOMS Average Number of Symptoms by Race/Ethnicity NH NH White Unk/ White Black Hispanic Other Average 2.7 3.3 4.2 * 4.1 S.D. 3.2 3.2 3.5 3.2 Range 0 - 15 0 - 15 0 - 13 0 - 13 Different from NHWhites at p < .01 Overall Average 3.4 symptoms

Findings - continued DEATHS: 55 Total (12.1%) • Fetal demise • Stillborn • Post-birth death • No racial/ethnic differences apparent • Limited follow-up period

Treatment Trends Over Time

Conclusions • Registry provides a profile of serious cCMV cases over a 34-year period in Texas • White Hispanic infants appear to be more seriously affected by cCMV • Lower weight, length and head circumference • More often low birthweight • More symptoms at birth

Conclusions - continued • Eight common symptoms affected > 25% of infants • Racial and ethnic differences in demographics and birth characteristics

Conclusions - continued • Eight common symptoms affected > 25% of infants • Racial and ethnic differences in demographics and birth characteristics • Low birthweight a risk factor for more severe illness & death • 8 to 12 percent experienced death / fetal demise • Anti-viral treatment increased over the time period

Limitations • Mostly serious cases • Not true incidence rates • Data Quality

Lessons Learned Study Methods • Participation • Data quality • Epidemiologic considerations • “Bang for the buck” • Not a surveillance system