Table1 :
Distribution of study variables across reporting categories among decedents who had Down syndrome reported on the death certificate, 2005–2017 US Multiple Cause of Death files, N=23,514
| Inaccurate reporting | Accurate reporting | |||
|---|---|---|---|---|
| Variable | Categories | Exclusive reporting of Down syndrome (n=767) % (N) |
Down syndrome as UCOD (n=11,452) % (N) |
Down syndrome not UCOD (n=11,295) % (N) |
| Sociodemographic characteristics | ||||
| Age | 18–29 | 3.78 (29) | 3.56 (408) | 4.33 (489) |
| 30–39 | 4.69 (36) | 4.23 (484) | 6.26 (707) | |
| 40–49 | 16.04 (123) | 13.19 (1,511) | 15.05 (1,700) | |
| 50–59 | 45.37 (348) | 44.76 (5,126) | 40.69 (4,596) | |
| 60–69 | 27.25 (209) | 30.79 (3,526) | 26.33 (2,974) | |
| 70–103 | 2.87 (22) | 3.47 (397) | 7.34 (829) | |
| Sex | Female | 53.32 (409) | 48.50 (5,554) | 48.35 (5,461) |
| Male | 46.68 (358) | 51.50 (5,898) | 51.65 (5,834) | |
| Race-ethnicity | White | 82.92 (636) | 83.87 (9,605) | 84.04 (9,492) |
| Black | 9.52 (73) | 8.10 (928) | 7.80 (881) | |
| Hispanic | 5.87 (45) | 6.37 (729) | 6.52 (736) | |
| Other | 1.69 (13) | 1.66 (190) | 1.65 (186) | |
| Education | 0–8 years | 56.71 (435) | 55.06 (6,306) | 53.01 (5,988) |
| 9+ years | 29.60 (227) | 32.43 (3,714) | 34.48 (3,894) | |
| Missing | 13.69 (105) | 12.50 (1,432) | 12.51 (1,413) | |
| Comorbidities | ||||
| Number of comorbidities | 1 | 27.65 (3,167) | 14.56 (1,645) | |
| 2 | 31.28 (3,582) | 24.90 (2,813) | ||
| 3 | 21.30 (2,439) | 23.75 (2,682) | ||
| 4–13 | 19.77 (2,264) | 36.79 (4,155) | ||
| Alzheimer’s disease/Unspecified dementia (ICD-10 G30, F03) | 28.09 (3,217) | 29.38 (3,318) | ||
| Heart disease (ICD-10 I00-I09, I11, I13, I20-I51) | 26.55 (3,040) | 37.77 (4,266) | ||
| Influenza/Pneumonia (ICD-10 J09-J18) | 30.49 (3,492) | 14.19 (1,603) | ||
| Pneumonitis (ICD-10 J69) | 15.29 (1,751) | 19.45 (2,197) | ||
| Cerebrovascular diseases (ICD-10 I60-I69) | 2.40 (275) | 7.16 (809) | ||
| Respiratory failure (ICD-10 J69.0, J69.1, J69.8) | 16.72 (1,915) | 15.05 (1,700) | ||
| Genitourinary diseases (ICD-10 N00-N07, N17-N19, N25-N27, N39) | 6.13 (702) | 9.41 (1,063) | ||
| Choking (ICD-10 W78-W80) | 4.03 (462) | 4.78 (766) | ||
| Malignant neoplasms (ICD-10 C00-C97) | 0.35 (40) | 5.34 (603) | ||
| Congenital heart (ICD-10 Q20-Q28) | 2.97 (340) | 3.28 (371) | ||
| Non-specific conditions (ICD-10 R00-R99) | 34.72 (3,976) | 27.94 (3,156) | ||
| Cerebral palsy (ICD-10 G80) | 0.35 (40) | 0.80 (90) | ||
| Intellectual disability (ICD-10 F70–79) | 520 (4.54) | 573 (5.07) | ||
| Death context and processing | ||||
| Place of death | Hospital inpatient | 7.04 (54) | 31.32 (3,587) | 35.94 (4,059) |
| Outpatient/ER/DOA | 8.34 (64) | 4.89 (560) | 6.44 (727) | |
| Home | 42.37 (325) | 23.31 (2,670) | 22.71 (2,565) | |
| Nursing home | 31.68 (243) | 29.65 (3,395) | 25.52 (2,883) | |
| Other/Unknown | 10.56 (81) | 10.83 (1,240) | 9.39 (1,061) | |
| Autopsy | Yes | 4.95 (38) | 2.48 (284) | 4.27 (482) |
| No | 84.62 (649) | 90.10 (10,318) | 88.54 (10,001) | |
| Unknown | 10.43 (80) | 7.42 (850) | 7.19 (812) | |
| Year of death – Median (IQR) | 2005 | 5.62 (50) | 6.62 (758) | 7.70 (870) |
| 2006 | 7.95 (61) | 5.65 (647) | 7.96 (899) | |
| 2007 | 8.08 (62) | 5.86 (671) | 8.34 (942) | |
| 2008 | 7.04 (54) | 6.57 (752) | 8.40 (949) | |
| 2009 | 7.04 (54) | 6.13 (702) | 10.14 (1,145) | |
| 2010 | 6.39 (49) | 5.71 (654) | 8.10 (915) | |
| 2011 | 6.26 (48) | 7.05 (807) | 7.84 (886) | |
| 2012 | 7.43 (57) | 7.29 (835) | 8.03 (907) | |
| 2013 | 7.95 (61) | 7.96 (912) | 8.00 (904) | |
| 2014 | 7.17 (55) | 9.31 (1,066) | 6.33 (715) | |
| 2015 | 8.47 (65) | 10.43 (1,195) | 5.75 (650) | |
| 2016 | 9.39 (79) | 10.70 (1,225) | 6.42 (725) | |
| 2017 | 10.30 (79) | 10.72 (1,228) | 6.98 (788) | |
Based on chi-square analysis, all associations were statistically significant for difference at the p<.05 level excluding race-ethnicity, congenital heart, and intellectual disability. UCOD = Underlying cause of death.