. 2021 Jul 14;11(7):e043658. doi: 10.1136/bmjopen-2020-043658

Table 2.

All-cause mortality and deaths from respiratory disorders in people with intellectual disabilities

Author	All-cause mortality	Deaths from respiratory disorders	Between group comparison of deaths from respiratory disorders	Deaths from individual respiratory disorders	Between group comparison of deaths from individual respiratory disorders	Variables associated with risk of death from respiratory disorders
Brameld et al (2018)²⁶	591 had ID/63 508 out of all deaths (0.93%)	62/591 (10.5%) deaths	Not available	Emergency Department presentations in the last year of life: influenza and pneumonia RR=2.6 (95% CI: 2.0 to 3.4, p<0.001) Chronic obstructive pulmonary disease (COPD) RR=0.8 (95% CI: 0.5 to 1.6, p=0.596) Asthma RR=4.7 (95% CI: 2.1 to 10.4, p<0.001) Ear, nose and throat infections RR=1.9 (95% CI: 0.8 to 4.0, p=0.122) Pneumonitis due to solids/liquids RR=17.9 (95% CI: 11.3 to 28.3, p<0.001) Hospital admissions in the last year of life: influenza and pneumonia RR=2.3 (95% CI: 1.0 to 5.3, p=0.044) COPD RR=1.4 (95% CI: 0.9 to 2.4, p=0.164) Asthma RR=4.6 (95% CI: 1.4 to 15.0, p=0.011) Ear, nose and throat infections RR=0.0(95% CI: 0.0–, p=0.972) Pneumonitis due to solids/liquids RR=17.6 (95% CI: 11.7 to 26.5, p<0.001)	Decedents with ID had increased odds of dying of (relative odds of having condition listed as underlying cause of death), adjusted for comorbidity: influenza/pneumonia (OR=5.3, 95% CI: 2.4 to 11.8) Pneumonitis due to solids or liquids (OR=9.9, 95% CI: 5.1 to 19.3) Asthma (OR=2.3, 95% CI: 1.0 to 5.2) (not significant) No difference for COPD as cause of death	Decedents with ID had increased A&E attendance but received less hospital-based specialist palliative care. For those in hospitals, they were more likely to have hospital stays involving intensive care and ventilator support
Cooper et al (2020)²⁸	294/961 (30.6%) deaths SMR=2.24 (95% CI: 1.98 to 2.49)	Underlying cause of death: 57/262 (21.8%) deaths SMR=6.78 (95% CI: 5.02 to 8.54) (adjusted for age and sex)	Underlying cause of death: Down syndrome (DS): 8/57 (14.0%) deaths Without DS: 49/205 (23.9%) deaths	All-contributing factors in death: respiratory infection=27.1% deaths Aspiration/ reflux/choking=19.8% deaths	Underlying cause of death: DS: Aspiration/reflux/choking =<5/57 deaths Respiratory infection=<5/57 deaths Other respiratory conditions=<5/57 deaths Without DS: Aspiration/reflux/choking=22/205 (10.8%) deaths Respiratory infection=21/205 (10.3%) deaths Other respiratory conditions=9/205 (4.4%) deaths All-contributing factors in death: DS: Respiratory infection=22/57 (38.6%) deaths Aspiration/reflux/choking=11/57 (19.3%) deaths Other respiratory conditions =<5/57 deaths Without DS: Respiratory infection=49/205 (23.9%) deaths Aspiration/reflux/choking=41/205 (20.2%) deaths Other respiratory conditions=31/205 (15.1%) deaths	Not available
Dupont et al (1987)⁴³	n=446 deaths/7134 (5.9%) people with mild ID n=277 males n=169 females	Respiratory deaths common cause of death in people with ID (all ages) Tests of significance only; respiratory deaths were more common for males with ID (all ages), and females aged 35–64, vs population of Denmark 1977	Not available	Not available	Not available	Not available
Durvasula (2002)³⁰	40/693 (6%) deaths	14/40 (35%) deaths	For people under 40, respiratory and external deaths were most common, for people over 40, cancer and respiratory deaths were most common Age: 7/14 deaths in under 25-year olds and 6/14 deaths in 40+ year olds Sex: 11/14 deaths in males Conditions: 2/14 had DSanddementia, 1/14 had myelodysplastic syndrome, 1x Battens disease	Not available	Not available	Age, gender, DS, myelodysplastic syndrome
Forsgren et al (1996)¹⁵	n=124/1478 (8.4%) people with ID (all ages), over 9992 person-years SMR=2.0 (95% CI: 1.7 to 2.3) Males 1.6 (95% CI: 1.2, 2.0), females 2.6 (95% CI: 2.0 to 3.3) Additional: SMRs for severity of ID, epilepsy and cerebral palsy are available inonline supplemental appendix	n=13/124 (10%) deaths were respiratory disease for people with ID vs n=3.9 expected, SMR=3.3 (95% CI: 2.0 to 5.5) (adjusted for age and sex)	Respiratory disease was common cause of death for people with ID and epilepsy but SMR was not possible due to small sample size	Pneumonia was most common cause of death, but rarely reported as underlying cause Pneumonia was most common cause of death in people with both epilepsy and ID	Not available	Epilepsy (active seizures)
Glover et al (2017)⁸	n=664 deaths for people with ID (all ages) over 59 279.7 person-years Crude rate 11.2 (10.4, 12.1) per 1000 person-years SMR=3.18 (2.94, 3.43) Women=3.40 (3.02, 3.81) Men=3.03 (2.73, 3.35)	n=114 deaths from respiratory causes for people with ID vs 23.3 expected SMR=4.9 (4.0, 5.9) (adjusted for age and sex)	Not available	n=57/114 (50%) of respiratory deaths (and 8.6% of all deaths) were from influenza and pneumonia, vs expected 7.4 deaths SMR=7.7 (5.8, 9.9) Vast majority of pneumonia were unspecified (organism) n=24/114 (21%) respiratory deaths (3.6% of all deaths) were due to pneumonitis due to solids/liquids vs expected 1.1 deaths SMR=21.8 (13.9, 32.4) n=12 (1.8%) of all deaths were due to respiratory and intrathoracic cancers vs expected 16.6 deaths SMR=0.7 (95% CI: 0.4 to 1.3)	Not available	Not available
Heslop et al (2014)⁵	n=247 deaths in people with ID aged 4+ Rate of death 16.2 per 1000 person years Median age of death: 64 (52, 75). Additional; all-cause mortality for sex, ID severity, amenable mortality, patient care, andaccommodation available inonline supplemental appendix	n=37 (15%) deaths had underlying cause due to respiratory diseases, vs 14.0% EnglandandWales deaths (p=0.66)	Not available	Not available	Not available	Reduced smoking in ID group p=0.02
Hollins et al (1998)¹¹	270/2026 (13.3%) deaths 116/1081 (10.7%) deaths on Wandsworth register 154/945 (16.3%) deaths on Kensington register	Not available	Not available	Bronchopneumonia: n=56 (48%) (Wandsworth) n=69 (45%) (Kensingston) COPD emphysema: n=1 (Wandsworth) n=1 (Kensingston) Asphyxia: n=4 (Wandsworth) n=1 (Kensingston) Respiratory other: n=4 (Wandsworth) n=4 (Kensingston) 52% of all deaths had a diagnosis of pneumonia	Not available	Not available
Hosking et al (2016)²⁴	656/16 666 (3.9%) deaths HR=3.62 (95% CI: 3.33 to 3.93)	123/16 666 (18.8%, rate=24.8) deaths HR=6.68 (95% CI: 5.38 to 8.29) (adjusted for age, sex and general practice)	Down syndrome=24/1793 (20.3%) deaths. General population: 135/1 13 562 (rate=3.9) deaths	Pneumonia; n=67/16 666 (rate=13.5) Aspiration pneumonitis; n=21/16 666 (rate=4.2)	General population: Pneumonia; 39/113 562 (rate=1.1) Aspiration pneumonitis; n=6/113 562 (rate=0.2)	Not available
Janicki et al (1999)²²	2752 deaths in the group aged 40+/4183 all-age deaths (66%)	40+ year olds: n=548 (20%), rate: 201 per 100 000	Increasing by age decade: aged 40s: 343 per 100 000 (16% of those who died) aged 50s: 793 per 100 000 (20%) aged 60s 1660 per 100 000 (25%) aged 70+: 3441 per 100 000 Males with ID rate of death: 257 per 100 000 Females with ID rate of death: 331 per 100 000 respiratory causes did not vary over the 10-year study period. Deaths due to respiratory diseases increased, with increasing age. Gender: breathing obstructions were more prevalent among males. Gender x age: respiratory disease was increased in the oldest groups, for males particularly while respiratory disease remained static as a cause of death for females across ages	Breathing obstructions: 2.7% average deaths per year across 10 years, n=75, rate=27.5 per 100 000 Respiratory disease types: pneumonia was the most prevalent type of respiratory cause of death, with 43% of respiratory disease deaths in ID group	Not available	Age, gender
Ng et al (2017)¹²	4738/15 289 deaths in people aged 55+ (31%)	807/4738 (17%) respiratory deaths for those with ID HR=12.5 (10.9, 14.2) (adjusted for sex, year of birth and year of access to services)	ID rate: 423 per 100 000 DS rate: 3187 per 1000	ID group (excludes DS) Pneumonitis due to solids and liquids: 10%, rate 25 per 100 000 Pneumonia: 50%, rate 129 per 100 000 Other COPD: 20%, 49 per 100 000 DS group Pneumonitis due to solids and liquids 31.4%, 181 per 100 000 Pneumonia 20%, 113 per 100 000 Asthma 8%, 45 per 100 000 Bronchitis 8%, 45 per 100 000 Other respiratory disorders 8%, 45 per 100 000	Not available	Not available
Oppewal et al (2018)²⁷	207/1050 ID=19.7%; 54/149DS=26.1%	69/159 ID=44.3%; 33/45 DS only=73.3%; 36/114 ID with no DS=31.6% Respiratory causes were the top primary causes of ID deaths. Respiratory causes were the top primary cause of DS deaths. General 50+ population, the three largest groups of primary causes of death were neoplasms (31%), circulatory diseases (28%) and respiratory diseases (9%). No SMR available	5-year age bands: 50–54ID=100%GP=3.3%; 55–59ID=26.5%GP=4.7%; 60–64ID=51.4%GP=6.0%; 65–69ID=30.4%GP=6.7%; 70–74ID=23.8%GP=8.6%; 75–79ID=12.5%GP=9.4%; 80–84ID=26.3%GP=9.4%; 85–90 ID=(0) GP=9.9%; 90–95 ID=40% GP=10.4%; 95+ID=100% GP=10.9%	Pneumonia ID=80.4%; COPD ID=17.6%	Not available	Not available
Patja et al (2001)¹⁴	1111/2369 ID=46.9%	Immediate cause 322/1093 ID=29%; Primary cause 241/1095 ID=22% Respiratory diseases second largest cause of ID death SMR=3.76 (CI: 3.31 to 4.27)* (adjusted for age and sex)	Male: age 2–19 SMR=5.8 (4.4–15.6); age 20–39 SMR=5.4 (2.9–8.0); age 40–59 SMR=5.5 (3.5–7.5); age 60+ SMR=2.7 (2.7–4.8) Female: age 2–19 SMR=4.3 (0.3–4.7); age 20–39 SMR=3.2 (1.1–5.1); age 40–59 SMR=6.2 (4.1–8.2); age 60+SMR=3.3 (1.7–3.0)	Pneumonia ID=83%; COPDID=11%.	Pneumonia deaths (%): profound ID=29%; severe ID=13%; moderate ID=33%; mild ID=25%. Risk ratios compared with general population: Mild ID 2.6 times higher; profound ID 5.8 times higher. ID men higher risk than women in younger age groups (<39 years), but at lower risk from 60 years of age onwards	Age, gender (all respiratory) ID severity (with pneumonia)
Raitauso et al (1997)¹³	216 deaths	Immediate cause of death 97/216 ID=45% Primary cause 14/216 ID=6%. Respiratory diseases were the dominant causes of ID death. SMR=2.15 (CI: 1.18 to 3.61) (adjusted for age, and year of death)	age 0–14 SMR=0.48; age 15–44 SMR=3.46; age 45–74 SMR=2.35; age 75 SMR=0	Bronchopneumonia (immediate cause) ID=43% Five patients had died of pneumonia caused by aspiration. In one case fatal pneumonia had been caused by a fistula between the bronchus and the pleura. Besides pneumonia, two patients had acute laryngitis and one patient had hyperplasia of the lymph nodes of the lungs as the immediate cause of death. The latter had trisomy of chromosome 13 (Patau’s syndrome) as the basic disorder	Not available	Age (all respiratory)
Smith et al (2020)¹⁰	n=106 (0.6%) deaths SMR=11.6 (95% CI: 9.6 to 14.0)	Underlying cause of death: n=8/106 (8%) deaths All-contributing factors in death: n=55. CMR=81.7 (95% CI: 62.7 to 106.4) deaths SMR=55.3 (95% CI: 42.5 to 72.1) (adjusted for age and sex)	Underlying cause of death: General population: 17/458 (4%) deaths All-contributing factors in death: General population: n=51. CMR=1.4 (95% CI: 1.1 to 1.8) deaths	Underlying cause of death: pneumonia including influenza;<5/106 All-contributing factors in death: pneumonia=27/106 (25.5%) deaths Respiratory failure; 17/106 (16.0%) deaths Respiratory disorders=15/106 (14.2%) deaths Pneumonitis associated with food and vomit=9/106 (8.5%) deaths	General populations: all-contributing factors in death: pneumonia=21/458 (4.6%) deaths	Not available
Trollor et al (2017)²⁵	732/19 362ID=4% SMR=1.3 (1.2 to 1.5)	632/732 ID=86.3% had cause of death information 78 ID=12% 4th top cause using the ID ABI conversion 130 ID=20% 1st top using the ID revised version 16 ID=3% of respiratory deaths were considered avoidable. 26 242GP=9% 3rd top underling cause	Not available	Not available	Not available	Not available
Tyrer and McGrother (2009)²³	503/2995 (17%) deaths SMR=2.77 (95% CI: 2.53 to 3.03).	SMR=5.46 (95% CI: 4.58 to 6.46) (adjusted for age and sex)	Not available	Bronchopneumonia; SMR=6.47 (95% CI: 5.00 to 8.23), O=66, E=10.2. Other respiratory; SMR=4.64 (CI: 3.58 to 5.91). O=65, E=14.0	Male; SMR=2.28 (95% CI: 2.02 to 2.56) O=278, E=121.8. Female; SMR=3.24 (95% CI: 2.83 to 3.69). O=225, E=69.4	Gender

*Only where adjusted specifically for respiratory mortality.

CMF, comparative mortality figure; E, expected death*calculated by authors using data from the study; O, observed deaths; RR, rate ratio; SMR, standardised mortality ratio.