Table 2.
Most frequently reported people in patients’ care networks from the perspectives of patients living at home or in a nursing home.
| Specialist palliative
care |
General palliative
care |
Additional care |
Informal and volunteer
care |
|||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| PC specialist | PC nurse | All physicians | GP | Onc | Car | Pul | Specialist other than onc/car/pul | All nurses | Home care nurse | Physiotherapist | Spiritual worker | Psychologist | Social worker | Family caregiver | Volunteer | |
| Contact with actor, N (%) (N = 157) | 51 (33) | 75 (48) | 151 (96) | 138 (88) | 55 (35) | 26 (17) | 28 (18) | 52 (33) | 122 (78) | 39 (25) | 41 (26) | 28 (18) | 22 (14) | 17 (11) | 136 (87) | 14 (9) |
| Per country, N (%) | ||||||||||||||||
| Belgium (N = 15) | 1 (7) | 11 (73) | 14 (93) | 14 (93) | 6 (40) | 2 (13) | 2 (13) | 1 (7) | 14 (93) | 12 (80) | 6 (40) | 4 (27) | 4 (27) | 1 (7) | 14 (93) | 3 (20) |
| Germany (N = 34) | 29 (85) | 22 (65) | 33 (97) | 32 (94) | 17 (50) | 2 (6) | 3 (9) | 8 (24) | 26 (77) | 5 (15) | 9 (27) | 7 (21) | 5 (15) | 5 (15) | 26 (77) | 3 (9) |
| United Kingdom (N = 35) | 2 (6) | 28 (80) | 35 (100) | 35 (100) | 17(49) | 6 (17) | 6 (17) | 6 (17) | 35 (100) | 10 (29) | 1 (3) | 7 (20) | 5 (14) | 4 (11) | 29 (83) | 2 (6) |
| Hungary (N = 42) | 7 (17) | 0 | 41 (98) | 30 (98) | 7 (17) | 11 (26) | 11 (26) | 27 (64) | 22 (52) | 2 (5) | 18 (43) | 3 (7) | 7 (17) | 6 (14) | 39 (93) | 3 (7) |
| The Netherlands (N = 31) | 12 (39) | 14 (45) | 28 (90) | 27 (87) | 8 (26) | 5 (16) | 6 (19) | 10 (32) | 25 (81) | 10 (32) | 7 (23) | 7 (23) | 1 (3) | 1 (3) | 28 (90) | 3 (10) |
| Per diagnostic group, N (%) | ||||||||||||||||
| Cancer (N = 97) | 46 (47) | 58 (60) | 95 (98) | 89 (92) | 54 (56) | 5 (5) | 6 (6) | 25 (26) | 74 (76) | 23 (24) | 16 (17) | 20 (21) | 14 (14) | 9 (9) | 87 (90) | 10 (10) |
| CHF (N = 21) | 1 (5) | 7 (33) | 20 (95) | 19 (91) | 0 | 17 (81) | 0 | 10 (48) | 16 (76) | 6 (29) | 7 (33) | 2 (10) | 5 (24) | 1 (5) | 16 (76) | 0 |
| COPD (N = 39) | 4 (10) | 10 (26) | 36 (92) | 30 (77) | 1 (3) | 4 (10) | 22 (56) | 17 (44) | 32 (82) | 10(26) | 18 (46) | 6 (15) | 3 (8) | 7 (18) | 33 (85) | 4 (10) |
| Rating of quality of relationship with HCP, mean (SD)a | 0.8 (0.7) | 0.8 (0.7) | 1.2 (0.8) | 1.4 (1.0) | 1.1 (1.1) | 1.5 (1.2) | 1.7 (1.0) | 1.1 (1.1) | 0.9 (0.7) | 1.1 (0.9) | 1.1 (0.9) | 1.0 (0.9) | 0,9 (1.2) | 1.5 (0.9) | 0.4 (0.7) | 0.9 (0.8) |
| Difference between relationship with respective HCP and PC specialist/nurse, p-value (95% CI) | n/a | n/a | <0.001* (−0.92; −0.37) | <0.001* (−1.06; −0.40) | 0.249 (−0.83; 0.23) | 0.141 (−0.25; 0.75) | 0.034* (−1.88; −0.12) | 0.088 (−1.24; 0.10) | 0.395 (−0.47; −0.19) | 0.193 (−0.83; 0.18) | n/a | n/a | n/a | n/a | n/a | n/a |
| Rating of quality of care provision by HCP, mean (SD) | 0.8 (0.7) | 0.8 (0.8) | 1.1 (0.9) | 1.3 (1.0) | 1.1 (1.1) | 1.1 (1.1) | 1.5 (1.1) | 1.1 (1.1) | 1.0 (0.8) | 1.1 (0.9) | 1.2 (0.9) | 1.0 (0.9) | 1.0 (1.2) | 1.6 (1.1) | 0.4 (0.7) | 1.1 (1.0) |
PC specialist: palliative care specialist, which includes GP palliative care specialist from the palliative home care team, palliative care specialist/consultant and hospice physician; PC nurse: palliative care nurse, which includes nurse specialised in palliative care and nurse practitioner palliative care; GP: general practitioner; onc: oncologist; car: cardiologist; pul: pulmonologist; CHF: chronic heart failure; COPD: chronic obstructive pulmonary disease; HCP: healthcare professional; SD: standard deviation; CI: confidence interval.
Percentages shown are percentages of the total number of patients (N) displayed in the first column.
Ratings of quality of relationship and quality of care provision could range from 0 (excellent) to 4 (poor).
Significant at 0.05 level.