Survival and end-of-life aspects among subjects on long-term noninvasive ventilation

Figures & data

Table 1. Subject characteristics

Sex, n (%) Males Females Age, Median (IQR) y < 65 y, n (%) 65–75 y, n (%) > 75 y, n (%) Body mass index, Median (IQR) (kg/m²)* <18.5, n (%) 18.5–24.9, n (%) 25.0–29.9, n (%) 30.0–34.9, n (%) 35.0–39.9, n (%) >40.0, n (%) Need for help with ADL, n (%) No Yes Smoking status, n (%) Never-smoker Ex-smoker Smoker Not known Pack years, Median (IQR) y FEV₁ † Median (IQR) L Median (IQR) % of predicted FVC ‡ Median (IQR) L Median (IQR) % of predicted FEV1/FVC, Median (IQR) ‡ pCO2, Median (IQR) kPa Primary disease that caused the need for NIV, n (%) Obesity hypoventilation syndrome COPD Amyotrophic lateral sclerosis Other neurological disease than amyotrophic lateral sclerosis Thoracic deformity Interstitial lung diseases Other § Comorbidities, n (%) Hypertension Cardiovascular diseases Sleep Apnea Diabetes Asthma COPD Cancer Neurological diseases Renal diseases Rheumatic diseases Others No comorbidities Charlson Comorbidity Index, Median (IQR)

120 (58.5) 85 (41.5) 67.0 (60.3–75.1) 85 (41.5) 74 (36.1) 46 (22.4) 33.2 (25.5–43.3) 11 (5.5) 35 (17.5) 32 (16.0) 29 (14.5) 33 (16.5) 60 (30.0) 134 (65.4) 71 (34.6) 69 (33.7) 89 (43.4) 46 (22.4) 1 (0.5) 30.0 (15.0–50.0) 1.23 (0.86–1.83) 45.5 (33.0–59.0) 2.30 (1.60–2.78) 61.0 (49.0–71.5) 0.67 (0.48–0.77) 8.2 (7.1–9.6) 97 (47.3) 53 (25.9) 10 (4.9) 17 (8.3) 14 (6.8) 8 (3.9) 6 (2.9) 127 (62.0) 117 (57.1) 87 (42.4) 85 (41.5) 48 (23.4) 26 (12.7) 31 (15.1) 20 (9.8) 19 (9.3) 15 (7.3) 99 (48.3) 12 (5.9) 1.0 (1.0–2.0)

* Data missing in five subjects due to being confined to bed (tetraplegia, multiple sclerosis, spinocerebellar ataxia or otherwise poor general condition (2)).

† Data missing in 20 subjects: lack of co-operation (tetraplegia, muscle dystrophy or subject didn’t understand instructions because of e.g. Alzheimer’s disease) in ten subjects and spirometry was not conducted in nine subjects as the disease was not a lung disease and missing values in one subject.

‡ Data missing in 40 subjects: only microspirometry available (20) and same reasons as for FEV₁† (20)

§ Consisting of central hypoventilation due to opioids (n = 1), bronchiolitis obliterans (n = 1), severe asthma (n = 1), tracheobronchomalacia (n = 1), vocal cord dysfunction (n = 1), chronic pleuritis (n = 1)

IQR, interquartile range; ADL, activities of daily living; FEV₁, forced expiratory volume in one second; FVC, forced vital capacity; pCO₂, partial pressure of carbon dioxide; NIV, noninvasive ventilation; COPD, chronic obstructive pulmonary disease

Table 2. Subject characteristics in subjects with COPD, obesity-hypoventilation syndrome or other diagnoses as the cause for initiation of noninvasive ventilation

	COPD	OHS	Others	P-value
Total, n Sex, n (%) Males Females Age, Median (IQR) y < 65 y, n (%) 65–75 y, n (%) >75 y, n (%) Body mass index, Median (IQR) (kg/m²)* <18.5, n (%) 18.5–24.9, n (%) 25.0–29.9, n (%) 30.0–34.9, n (%) 35.0–39.9, n (%) >40.0, n (%) Need for help with ADL, n (%) No Yes Smoking status, n (%) Never-smoker Ex-smoker Smoker Not known Pack years, Median (IQR) y FEV₁ † Median (IQR) L Median (IQR) % of predicted FVC ‡ Median (IQR) L Median (IQR) % of predicted FEV1/FVC, Median (IQR) ‡ pCO2, Median (IQR) kPa Comorbidities, n (%) Hypertension Cardiovascular diseases Diabetes COPD Asthma Sleep Apnoea Neurological diseases Renal diseases Rheumatic diseases Cancer Others No comorbidities Charlson Comorbidity Index, Median (IQR)	53 35 (66.0) 18 (34.0) 69.0 (63.7–73.9) 18 (34.0) 25 (47.2) 10 (18.9) 25.9 (21.4–31.2) 7 (13.2) 16 (30.2) 13 (24.5) 11 (20.8) 6 (11.3) 0 (0.0) 40 (75.5) 13 (24.5) 0 (0.0) 30 (56.6) 23 (43.4) 0 (0.0) 45.0 (35.0–54.0) 0.81 (0.68–1.06) 29.0 (21.0–40.0) 2.44 (2.00–2.74) 66.0 (55.0–77.0) 0.41 (0.27–0.50) 8.4 (7.9–10.4) 28 (52.8) 32 (60.4) 18 (34.0) 11 (20.8) 6 (11.3) 2 (3.8) 5 (9.4) 3 (5.7) 8 (15.1) 22 (41.5) 4 (7.5) 1.0 (0.0–2.0)	97 56 (57.7) 41 (42.3) 66.3 (58.4–75.1) 42 (43.3) 35 (36.1) 20 (20.6) 43.5 (37.4–48.8) 0 (0.0) 0 (0.0) 0 (0.0) 14 (14.6) 24 (25.0) 58 (60.4) 72 (74.2) 25 (25.8) 40 (41.2) 35 (36.1) 21 (21.6) 1 (1.0) 25.0 (10.0–40.0) 1.65 (1.13–1.98) 53.0 (43.0–62.3) 2.27 (1.72–2.84) 62.0 (52.0–73.0) 0.70 (0.63–0.77) 8.6 (7.4–10.0) 71 (73.2) 60 (61.9) 56 (57.7) 20 (20.6) 25 (25.8) 72 (74.2) 10 (10.3) 9 (9.3) 6 (6.2) 16 (16.5) 53 (54.6) 0 (0.0) 2.0 (1.0–3.0)	55 29 (52.7) 26 (47.3) 65.9 (58.9–76.7) 25 (45.5) 14 (25.5) 16 (29.1) 25.5 (21.5–28.9) 4 (7.8) 19 (37.3) 19 (37.3) 4 (7.8) 3 (5.9) 2 (3.9) 22 (40.0) 33 (60.0) 29 (52.7) 24 (43.6) 2 (3.6) 0 (0.0) 15.0 (7.0–30.0) 1.27 (0.94–2.11) 47.0 (33.5–66.5) 1.66 (1.20–2.53) 51.0 (39.0–66.0) 0.77 (0.67–0.89) 7.3 (6.2–8.6) 28 (50.9) 25 (45.5) 11 (20.0) 5 (9.1) 12 (21.8) 9 (16.4) 8 (14.5) 5 (9.1) 6 (10.9) 7 (12.7) 24 (43.6) 8 (14.5) 1.0 (0.0–2.0)	0.364 0.523 0.194 <0.001 <0.001 <0.001 <0.001 <0.001 <0.001 0.012 0.002 <0.001 <0.001 0.007 0.124 <0.001 0.001 0.745 <0.001 0.164 1.000 0.545 0.824 0.221 <0.001 0.001

* Data missing in five subjects due to being confined to bed (tetraplegia, multiple sclerosis, spinocerebellar ataxia or otherwise poor general condition (2)).

† Data missing in 20 subjects: lack of co-operation (tetraplegia, muscle dystrophy or subject didn’t understand instructions because of e.g. Alzheimer’s disease) in nine subjects and spirometry was not conducted in ten subjects as the disease was not a lung disease and missing values in one subject.

‡ Data missing in 40 subjects: only microspirometry available (20) and same reasons as for FEV₁† (20)

COPD, chronic obstructive pulmonary disease; OHS, obesity hypoventilation sdr; IQR, interquartile range; ADL, activities of daily living; FEV₁, forced expiratory volume in one second; FVC, forced vital capacity; pCO₂, partial pressure of carbon dioxide; COPD, chronic obstructive pulmonary disease

Figure 1. Kaplan-Meier survival curve for overall survival in the total study sample according to the need for assistance with activities of daily living (A), according to the concomitant use of long-term oxygen therapy with NIV (B) and after the initiation of noninvasive ventilation according to the primary diagnosis for noninvasive ventilation in subjects with OHS and COPD (C).NIV, noninvasive ventilation; LTOT, long-term oxygen therapy; HR; hazard ratio; COPD, chronic obstructive pulmonary disease; OHS, obesity hypoventilation syndrome; IQR, interquartile range; NA, not available

Table 3. Characteristics related to end-of-life among the deceased subjects according to primary diagnosis

	COPD	OHS	Others	P-value
Total, n Died before 31.12.2017, n (% of all) DNR decision before death, n (%) † End-of-life care decision before death, n (%) Place of death, n (%) Hospital Home Nursing home Hospice Emergency Not known Cause of death, n (%) COPD Heart diseases Interstitial lung disease Cancer Neurological diseases Chronic respiratory failure Pneumonia or other infection Other Admission through the emergency for the last hospitalization before death, n (%)	53 31 (58.5) 30 (96.8) 12 (38.7) 17 (54.8) 7 (22.6) 3 (9.7) 2 (6.5) 2 (6.5) 0 (0.0) 23 (74.2) 4 (12.9) 0 (0.0) 4 (12.9) 0 (0.0) 0 (0.0) 0 (0.0) 0 (0.0) 13 (41.9)	97 24 (24.7) 18 (75.0) 11 (45.8) 17 (70.8) 3 (12.5) 1 (4.2) 2 (8.3) 1 (4.2) 0 (0.0) 2 (8.3) 9 (37.5) 0 (0.0) 3 (12.5) 1 (4.2) 4 (16.7) 1 (4.2) 4 (16.7) 11 (45.8)	55 35 (63.6) 31 (88.6) 16 (45.7) 16 (45.7) 8 (22.9) 3 (8.6) 4 (11.4) 3 (8.6) 1 (2.9) 1 (2.9) 4 (11.4) 8 (22.9) 3 (8.6) 13 (37.1) 1 (2.9) 1 (2.9) 4 (11.4) 16 (45.7)	<0.001 0.053 0.814 0.907 <0.001 0.941

† 39 (49.4%) had also end-of-life care decision

COPD, chronic obstructive lung disease; OHS, obesity hypoventilation sdr; DNR, do not resuscitate

Data availability statement

Data available on request from the authors