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Table 1 Characteristics of the study population (i.e., those who answered the EORTC QLQ-C15-PAL at the start of palliative care) and non-respondents

From: Should analyses of large, national palliative care data sets with patient reported outcomes (PROs) be restricted to services with high patient participation? A register-based study

 

Answered EORTC QLQ-C15-PAL

 

Yes

No

 

N

%

N

%

All

24,589

100

24,718

100

Age

 Mean

68.5

 

69.2

 

 Median

69

 

70

 

 Range

19–101

 

18–105

 

Gender

 Women

12,150

49.4

12,695

51.4

 Men

12,439

50.6

12,023

48.6

Cancer site/diagnosis

 Head and neck

765

3.1

730

3.0

 Esophagus

844

3.4

738

3.0

 Stomach

772

3.1

700

2.8

 Small Intestine

177

0.7

160

0.7

 Colon and rectum

2984

12.1

2795

11.3

 Liver and intrahepatic bile ducts

828

3.4

887

3.6

 Pancreas

1878

7.6

1735

7.0

 Lung, bronchus and trachea

6381

26.0

6250

25.3

 Melanoma

518

2.1

549

2.2

 Breast

2003

8.2

1986

8.0

 Cervix

248

1.0

246

1.0

 Uterus

277

1.1

311

1.3

 Ovary

886

3.6

870

3.5

 Prostate

1843

7.5

1629

6.6

 Bladder

617

2.5

710

2.9

 Kidney, renal pelvis, ureter

753

3.1

700

2.8

 Brain and central nervous system

637

2.6

1091

4.4

 Lymphoma

158

0.6

225

0.9

 Myelomatosis

205

0.8

210

0.9

 Leukaemia

225

0.9

331

1.3

 Sarcomas and other soft tissues

298

1.2

281

1.1

 Other cancer site

767

3.1

831

3.4

 Unknown cancer site

525

2.1

753

3.1

Specialized palliative care service

 Palliative care teams

18,207

74.0

12,880

52.1

 Hospice

6382

26.0

11,838

47.9

Survival time from start of specialized palliative care to death (days)

 Mean

94.0

 

64.5

 

 Median

42

 

20

 

 Range

0–2126

 

0–2101

 

Year of admission

 2010

2716

11.0

4172

16.9

 2011

3400

13.8

4528

18.3

 2012

4364

17.7

4164

16.8

 2013

4929

20.0

4054

16.4

 2014

5019

20.4

4076

16.5

 2015

4161

16.9

3724

15.1

Response ratea

  < 20%

602

2.5

5501

22.3

 20.0–29.9%

1282

5.2

3957

16.0

 30.0–39.9%

2145

8.7

4183

16.9

 40.0–49.9%

2926

11.9

3537

14.3

 50.0–59.9%

3442

14.0

2795

11.3

  ≥ 60.0%

14,192

57.7

4745

19.2

Number of questionnaires completed per patientb

 1

20,285

90.5

 2

2102

9.4

 3

32

0.1

 4

1

0.0

EORTC scale-scores (mean, range)

 Pain

56.4 (0.0–100.0)

 

 Dyspnea

58.0 (0.0–100.0)

 

 Sleeplessness

37.0 (0.0–100.0)

 

 Appetite loss

58.3 (0.0–100.0)

 

 Constipation

33.3 (0.0–100.0)

 

 Fatigue

75.9 (0.0–100.0)

 

 Nausea/vomiting

24.8 (0.0–100.0)

 

 Emotional function

64.8 (0.0–100.0)

 

 Physical function

27.4 (0.0–93.3)

 

 Overall quality of life

39.0 (0.0–100.0)

 

  1. a Response rate was computed according to SPC service and calendar year. Thus, a patient admitted to an SPC service in 2012 was allocated the response rate of that SPC service for 2012. bOnly one questionnaire could be completed per SPC admittance and if patients were admitted more than once to the same SPC service, only the first was included