Background
Methods
Data sources
Scale development
Analysis
Results
Respondents’ characteristics
No-LLTC No.
| Group Pct.
| S-LLTC No.
| Group Pct.
| M-LLTC No.
| Group Pct.
| Overall No.
| Total Pct.
| ||
---|---|---|---|---|---|---|---|---|---|
Gender
|
Female
| 19,776 |
54.4%
| 9,919 |
52.5%
| 4,921 |
49.7%
| 34,616 |
53.2%
|
Male
| 16,554 |
45.6%
| 8,982 |
47.5%
| 4,982 |
50.3%
| 30,518 |
46.8%
| |
Age group
|
16-29
| 2,388 |
6.6%
| 758 |
4.0%
| 232 |
2.4%
| 3,378 |
5.2%
|
30-45
| 4,113 |
11.4%
| 1,601 |
8.5%
| 551 |
5.7%
| 6,265 |
9.7%
| |
46-60
| 7,213 |
20.0%
| 3,989 |
21.3%
| 1,619 |
16.7%
| 12,821 |
19.9%
| |
61-75
| 12,725 |
35.3%
| 6,609 |
35.2%
| 2,976 |
30.6%
| 22,310 |
34.6%
| |
75-90
| 9,123 |
25.3%
| 5,392 |
28.8%
| 3,765 |
38.7%
| 18,280 |
28.3%
| |
Over 90
| 525 |
1.45%
| 406 |
2.2%
| 579 |
6.0%
| 1,510 |
2.3%
| |
Ethnicity
|
White-British
| 33,254 |
91.5%
| 17,435 |
92.2%
| 9,267 |
93.6%
| 59,956 |
92.0%
|
Other
| 3,076 |
8.5%
| 1,466 |
7.8%
| 636 |
6.4%
| 5,178 |
8.0%
| |
Admission to hospital
|
Emergency
| 18,885 |
54.0%
| 11,149 |
61.0%
| 6,789 |
71.1%
| 36,823 |
58.6%
|
Planned
| 16,084 |
46.0%
| 7,118 |
38.9%
| 2,756 |
28.9%
| 25,958 |
41.4%
| |
Operation or procedure
|
Yes
| 24,728 |
69.6%
| 11,108 |
60.2%
| 5,141 |
53.6%
| 40,977 |
64.4%
|
No
| 10,812 |
30.4%
| 7,346 |
39.8%
| 4,458 |
46.4%
| 22,616 |
35.6%
| |
Experienced pain
|
Yes
| 22,468 |
63.3%
| 12,695 |
69.0%
| 6,741 |
70.0%
| 41,904 |
70.0%
|
No
| 13,018 |
36.7%
| 5,705 |
31.0%
| 2,890 |
30.0%
| 21,613 |
30.0%
| |
Length of stay
|
1-3 days
| 22,671 |
62.4%
| 9,462 |
50.0%
| 4,668 |
47.1%
| 36,801 |
56.5%
|
4+ days
| 13,656 |
37.6%
| 9,435 |
50.0%
| 5,234 |
52.9%
| 28,325 |
43.5%
| |
Number of limiting long-standing conditions
|
0
| 36,330 |
100%
| - | - | 36,330 |
55.8%
| ||
1
| - | 18,901 |
100%
| - | 18,901 |
29.0%
| |||
2
| - | - | 7,081 |
71.4%
| 7,081 |
10.9%
| |||
3
| - | - | 2,293 |
23.2%
| 2,293 |
3.5%
| |||
4
| - | - | 474 |
4.8%
| 474 |
0.7%
| |||
5
| - | - | 46 |
0.5%
| 46 |
0.0%
| |||
6
| - | - | 9 |
0.1%
| 9 |
0.0%
| |||
Total
| 36,330 | 18,901 | 9,903 | 65,134 |
100%
|
OxPIE scale development
Item
|
Item content
|
Item total correlations
|
Missing values
|
---|---|---|---|
1. | Doctors’ answers to important questions not always clear | 0.542 | 1.9% |
2. | Nurses’ answers to important questions not always clear | 0.568 | 1.6% |
3. | Not easy to find someone to talk about worries and fears | 0.590 | 2.1% |
4. | Hospital staff sometimes gave conflicting information | 0.484 | 2.0% |
5. | Did not feel got enough emotional support from staff | 0.604 | 1.9% |
6. | Not always treated with respect and dignity | 0.573 | 2.9% |
7. | Not fully involved in decisions about care and treatment | 0.563 | 2.3% |
8. | Not fully involved in decisions about discharge | 0.509 | 2.5% |
9. | Not told who to contact if worried after discharge | 0.347 | 4.4% |
10. | Not told about danger signals to watch out for at home | 0.512 | 3.7% |
11. | Family/friends not given sufficient information | 0.504 | 3.8% |
Positive exp. (≤3) | Negative exp. (≥4) | Mean | SD | Range | 25% | 50% | 75% | |
---|---|---|---|---|---|---|---|---|
All groups | 54.7% | 45.3% | 3.76 | 3.23 | 0 to 11 | 1.00 | 3.00 | 6.00 |
No-LLTC | 61.0% | 39.0% | 3.25 | 2.99 | 0 to 11 | 1.00 | 2.00 | 5.00 |
S-LLTC | 49.0% | 51.0% | 4.19 | 3.33 | 0 to 11 | 1.00 | 4.00 | 7.00 |
M-LLTC | 41.5% | 58.5% | 4.28 | 4.83 | 0 to 11 | 2.00 | 4.00 | 8.00 |
OxPIE items
Questionnaire items | Age group | No-LLTC % | 95% CI | S-LLTC % | 95% CI | M-LLTC % | 95% CI |
---|---|---|---|---|---|---|---|
Doctors’ answers to important |
16-29
| 41.0 | 39.0-43.0 | 46.1 | 42.6-49.7 | 50.4 | 44.0-56.9 |
questions not always clear |
30-44
| 34.9 | 33.4-36.4 | 39.7 | 37.3-42.1 | 50.5 | 46.2-54.7 |
45-59
| 25.4 | 24.4-26.4 | 33.7 | 32.2-35.2 | 39.8 | 37.4-42.2 | |
60-74
| 18.3 | 17.6-18.9 | 29.0 | 27.9-30.1 | 35.9 | 34.2-37.6 | |
75-89
| 20.1 | 19.2-20.9 | 34.2 | 32.9-35.4 | 42.1 | 40.5-43.7 | |
≥ 90
| 30.4 | 26.3-34.4 | 34.9 | 30.1-39.6 | 51.4 | 47.3-55.6 | |
Total
|
23.8
|
23.3-24.2
|
33.3
|
32.6-33.9
|
41.2
|
40.2-42.2
| |
Nurses’ answers to important |
16-29
| 40.1 | 38.1-42.0 | 48.6 | 45.0-52.2 | 49.1 | 42.7-55.6 |
questions not always clear |
30-44
| 35.1 | 33.6-36.5 | 39.9 | 37.5-42.3 | 45.7 | 41.5-49.9 |
45-59
| 26.7 | 25.6-27.7 | 35.1 | 33.6-36.6 | 38.3 | 35.9-40.7 | |
60-74
| 20.7 | 20.0-21.4 | 31.2 | 30.1-32.4 | 37.2 | 35.5-40.7 | |
75-89
| 20.9 | 20.1-21.7 | 35.7 | 34.4-37.0 | 41.7 | 40.1-43.2 | |
≥ 90
| 28.7 | 24.8-32.7 | 42.7 | 37.8-47.6 | 48.3 | 44.2-52.4 | |
Total
|
25.0
|
24.5-25.4
|
35.0
|
34.4-35.7
|
40.8
|
39.8-41.7
| |
Not easy to find someone to |
16-29
| 45.4 | 43.3-47.4 | 48.3 | 44.8-51.9 | 59.4 | 53.0-65.8 |
talk about worries and fears |
30-44
| 39.9 | 38.4-41.4 | 49.0 | 46.6-51.5 | 57.5 | 53.4-61.7 |
45-59
| 32.7 | 31.6-33.8 | 41.9 | 40.4-43.5 | 47.9 | 45.4-50.4 | |
60-74
| 25.6 | 24.8-26.4 | 38.0 | 36.8-39.2 | 43.3 | 41.5-45.1 | |
75-89
| 26.8 | 25.9-27.7 | 42.1 | 40.8-43.5 | 48.0 | 46.4-49.6 | |
≥ 90
| 35.2 | 31.0-39.3 | 47.8 | 42.8-52.8 | 57.4 | 53.3-61.5 | |
Total
|
30.4
|
30.0-30.9
|
41.6
|
40.9-42.3
|
48.1
|
47.1-49.1
| |
Hospital staff sometimes gave |
16-29
| 48.0 | 46.0-50.1 | 60.3 | 56.8-63.8 | 69.7 | 63.8-75.7 |
conflicting information |
30-44
| 40.3 | 38.8-41.8 | 50.4 | 48.0-52.9 | 59.2 | 55.1-63.3 |
45-59
| 32.6 | 31.5-33.6 | 43.0 | 41.4-44.5 | 49.9 | 47.5-52.4 | |
60-74
| 24.5 | 23.7-25.2 | 36.4 | 35.2-37.5 | 43.1 | 41.3-44.9 | |
75-89
| 20.5 | 19.6-21.3 | 34.8 | 33.5-36.1 | 40.1 | 38.5-41.7 | |
≥ 90
| 26.1 | 22.2-30.0 | 36.2 | 31.4-41.0 | 44.0 | 39.9-48.2 | |
Total
|
28.5
|
28.0-28.9
|
39.5
|
38.8-40.2
|
44.7
|
43.7-45.7
| |
Did not feel got enough |
16-29
| 39.8 | 37.8-41.7 | 49.0 | 45.4-52.6 | 61.1 | 54.8-67.5 |
emotional support from staff |
30-44
| 36.3 | 34.8-37.8 | 46.3 | 43.8-48.7 | 58.1 | 53.9-62.2 |
45-59
| 26.7 | 25.7-27.8 | 38.5 | 37.0-40.0 | 44.8 | 42.4-47.3 | |
60-74
| 17.8 | 17.2-18.5 | 30.8 | 29.6-31.9 | 36.3 | 34.6-38.1 | |
75-89
| 17.0 | 16.2-17.8 | 31.9 | 30.6-33.2 | 37.5 | 35.9-39.1 | |
≥ 90
| 25.4 | 21.6-29.2 | 39.1 | 34.2-44.0 | 50.1 | 45.9-54.2 | |
Total
|
23.1
|
22.7-23.5
|
35.1
|
34.4-35.7
|
41.0
|
40.0-42.0
| |
Not always treated with respect |
16-29
| 34.1 | 29.5-33.3 | 39.7 | 26.2-43.2 | 47.4 | 40.9-53.9 |
and dignity |
30-44
| 26.7 | 25.3-28.1 | 31.4 | 29.2-33.7 | 42.8 | 38.6-46.9 |
45-59
| 19.0 | 18.1-19.9 | 25.5 | 24.2-26.9 | 32.6 | 30.3-34.9 | |
60-74
| 12.4 | 11.8-12.9 | 20.5 | 19.5-21.5 | 25.8 | 24.3-27.4 | |
75-89
| 10.9 | 10.3-11.6 | 21.2 | 20.1-22.3 | 26.9 | 25.4-28.3 | |
≥ 90
| 18.4 | 15.0-21.7 | 27.8 | 23.4-32.3 | 35.2 | 31.3-39.1 | |
Total
|
16.3
|
15.9-16.7
|
23.7
|
23.1-24.3
|
29.5
|
28.6-30.4
| |
Not fully involved in decisions |
16-29
| 51.1 | 49.1-53.2 | 57.6 | 54.1-61.2 | 66.7 | 60.5-72.8 |
About care and treatment |
30-44
| 48.7 | 47.1-50.2 | 54.9 | 52.5-57.4 | 62.8 | 58.8-66.9 |
45-59
| 43.3 | 42.1-44.4 | 49.2 | 47.6-50.7 | 54.3 | 51.9-56.8 | |
60-74
| 36.9 | 36.1-37.8 | 46.9 | 45.7-48.1 | 52.4 | 50.6-54.2 | |
75-89
| 43.4 | 42.4-44.5 | 55.1 | 53.7-56.4 | 61.3 | 59.8-62.9 | |
≥ 90
| 55.2 | 50.9-59.6 | 63.3 | 58.5-68.1 | 70.3 | 66.5-74.1 | |
Total
|
42.4
|
41.9-42.9
|
51.3
|
50.6-52.0
|
58.4
|
57.4-59.3
| |
Not fully involved in decisions |
16-29
| 48.0 | 45.9-50.0 | 49.6 | 46.0-53.2 | 52.4 | 45.9-58.8 |
about discharge |
30-44
| 43.6 | 42.0-45.1 | 47.8 | 45.3-50.2 | 52.9 | 48.7-57.1 |
45-59
| 38.6 | 37.5-39.7 | 43.1 | 41.6-44.6 | 46.7 | 44.3-49.2 | |
60-74
| 35.2 | 32.5-34.1 | 46.2 | 39.4-41.8 | 50.9 | 43.3-46.9 | |
75-89
| 41.4 | 34.2-36.2 | 47.1 | 44.8-47.5 | 55.7 | 49.2-52.5 | |
≥ 90
| 38.4 | 37.0-45.7 | 52.4 | 42.1-52.1 | 55.4 | 51.6-59.8 | |
Total
|
37.1
|
36.6-37.6
|
43.9
|
43.2-44.6
|
49.0
|
48.0-50.0
| |
Not told who to contact if |
16-29
| 33.1 | 31.2-35.0 | 32.5 | 29.2-35.9 | 40.6 | 34.2-47.0 |
Worried about condition or |
30-44
| 28.1 | 26.7-29.5 | 31.4 | 29.1-33.7 | 36.8 | 32.7-40.9 |
treatment after discharge |
45-59
| 23.5 | 22.5-24.5 | 25.7 | 24.3-27.0 | 30.6 | 28.3-32.8 |
60-74
| 21.4 | 20.7-22.1 | 26.4 | 25.3-27.4 | 29.2 | 27.6-30.9 | |
75-89
| 31.8 | 30.8-32.8 | 36.8 | 35.5-38.1 | 41.6 | 40.0-43.2 | |
≥ 90
| 55.1 | 50.6-59.5 | 55.9 | 51.0-61.0 | 58.8 | 54.7-63.0 | |
Total
|
26.5
|
26.1-27.0
|
30.5
|
29.9-31.2
|
37.0
|
36.0-37.9
| |
Not told about danger signals |
16-29
| 52.0 | 50.0-54.0 | 52.1 | 48.5-55.7 | 57.8 | 51.3-64.2 |
to watch out for at home |
30-44
| 47.8 | 46.2-49.3 | 49.5 | 47.0-51.9 | 58.9 | 54.7-63.0 |
45-59
| 41.2 | 40.1-42.4 | 44.2 | 42.6-45.8 | 48.3 | 45.8-50.8 | |
60-74
| 36.7 | 35.9-37.6 | 44.4 | 43.2-45.6 | 48.2 | 46.4-50.0 | |
75-89
| 39.2 | 38.2-40.2 | 50.4 | 49.0-51.8 | 53.7 | 52.0-55.3 | |
≥ 90
| 44.7 | 40.2-49.2 | 51.2 | 46.1-56.4 | 58.5 | 54.3-62.6 | |
Total
|
40.7
|
40.2-41.2
|
47.0
|
46.3-47.7
|
51.8
|
50.8-52.8
| |
Family/friends not given |
16-29
| 46.7 | 44.7-48.7 | 48.1 | 44.5-51.7 | 47.8 | 41.2-54.3 |
sufficient information to help |
30-44
| 39.1 | 37.6-40.6 | 46.0 | 43.5-48.5 | 52.3 | 48.1-56.5 |
recovery |
45-59
| 34.6 | 33.5-35.7 | 40.4 | 38.8-41.9 | 42.9 | 40.1-45.4 |
60-74
| 29.7 | 28.9-30.5 | 38.4 | 37.2-39.5 | 41.2 | 39.4-43.0 | |
75-89
| 28.6 | 27.6-29.5 | 40.5 | 39.2-41.8 | 44.4 | 42.7-46.0 | |
≥ 90
| 34.0 | 29.8-38.2 | 43.0 | 38.0-48.1 | 49.2 | 45.0-53.4 | |
Total
|
32.7
|
32.2-33.2
|
40.6
|
39.9-41.3
|
44.2
|
43.2-45.2
|
Overall rating of care
Questionnaire items | Age group | No-LLTC % | 95% CI | S-LLTC % | 95% CI | M-LLTC % | 95% CI |
---|---|---|---|---|---|---|---|
Overall, care received rated as |
16-29
| 14.2 | 12.8-15.6 | 17.4 | 14.6-20.1 | 20.6 | 15.3-26.0 |
‘fair’ or ‘poor’ |
30-44
| 11.0 | 10.0-12.0 | 13.7 | 12.0-15.4 | 19.2 | 15.9-22.5 |
45-59
| 6.8 | 6.3-7.4 | 10.5 | 9.5-11.4 | 14.3 | 12.6-16.0 | |
60-74
| 4.1 | 3.8-4.5 | 7.8 | 7.2-8.5 | 11.2 | 10.0-12.3 | |
75-89
| 3.5 | 3.1-3.9 | 8.4 | 7.6-9.1 | 11.2 | 10.2-12.2 | |
≥ 90
| 7.7 | 5.4-10.0 | 10.9 | 7.9-14.0 | 16.8 | 13.8-19.9 | |
Total
|
6.0
|
5.8-6.3
|
9.5
|
9.1-9.9
|
12.7
|
12.1-13.4
|
Multivariate logistic regression
Factor | Comparison | OR | 95% CI |
p-value |
---|---|---|---|---|
Main effects
| ||||
Pain | No vs yes | 1.61 | 1.55 to 1.67 | <0.001 |
Ethnicity | W/Brit vs other | 1.35 | 1.26 to 1.45 | <0.001 |
Gender | Male vs female | 1.33 | 1.29 to 1.38 | <0.001 |
Length of stay | ≤3 days vs ≥4 days | 1.26 | 1.21 to 1.31 | <0.001 |
Operation | No vs Yes | 0.84 | 0.80 to 0.87 | <0.001 |
Admission | Emergency vs plan. | 0.60 | 0.57 to 0.62 | <0.001 |
Age 30-44 | 16-29 vs 30-44 | 0.79 | 0.70 to 0.88 | <0.001 |
Age 45-59 | 16-29 vs 45-59 | 0.59 | 0.53 to 0.65 | <0.001 |
Age 60-74 | 16-29 vs 60-74 | 0.41 | 0.38 to 0.46 | <0.001 |
Age 75-89 | 16-29 vs 75-89 | 0.43 | 0.39 to 0.48 | <0.001 |
Aged over 90 | 16-29 vs 90+ | 0.63 | 0.49 to 0.79 | <0.001 |
S-LLTC | No-LLTC vs SLLTC | 1.23 | 1.03 to 1.48 | 0.024 |
M-LLTC | No-LLTC vs M-LLTC | 1.64 | 1.19 to 2.26 | 0.003 |
Interaction effects
| ||||
S-LLTC × Age 30-44 | 1.02 | 0.82 to 1.27 | 0.849 | |
S-LLTC × Age 45-59 | 1.13 | 0.93 to 1.38 | 0.227 | |
S-LLTC × Age 60-74 | 1.34 | 1.10 to 1.62 | 0.003 | |
S-LLTC × Age 75-89 | 1.49 | 1.22 to 1.82 | <0.001 | |
S-LLTC × Aged ≥90 | 1.17 | 0.81 to 1.70 | 0.404 | |
M-LLTC × Age 30-44 | 1.37 | 0.81 to 1.71 | 0.107 | |
M-LLTC × Age 45-59 | 0.94 | 0.67 to 1.33 | 0.736 | |
M-LLTC × Age 60-74 | 1.26 | 0.90 to 1.75 | 0.180 | |
M-LLTC × Age 75-89 | 1.49 | 1.07 to 2.08 | 0.019 | |
M-LLTC × Aged ≥90 | 1.54 | 0.99 to 2.40 | 0.055 |