Items | Round 1 M ± SD; N = 36 | Round 2 M ± SD; N = 31 |
---|---|---|
General PC | ||
Surprise question 12 months | 4.1 ± 1.4; n = 20 | |
Surprise question 6 months | 5.0 ± 0.0; n = 3 | |
Surprise question months, weeks or days | 4.2 ± 0.8; n = 5 | |
PC required by healthcare professional | 3.2 ± 1.8; n = 6 | 4.3 ± 1.0; n = 7 |
PC required implicitly or explicitly by patients or relatives | 3.5 ± 1.3; n = 19 | |
PC required by patients/relatives | 3.3 ± 1.4; n = 6 | |
Advanced illness, unstable symptoms | 3.8 ± 1.6; n = 5 | |
Advanced illness and/or diminishing response to aetiological treatments | 4.3 ± 0.5; n = 8 | |
Disease that cannot be treated, vital prognosis is underway | 4.0 ± 1.3; n = 16 | |
Decreased response to treatment | 1.7 ± 0.6; n = 3 | |
At least one disturbing symptom | 2.6 ± 0.9; n = 11 | 4.1 ± 0.8; n = 11 |
Decrease in general condition | 3.2 ± 1.3; n = 6 | 4.8 ± 0.5; n = 4 |
Poor or deteriorating performance status | 2.6 ± 0.8; n = 7 | 3.8 ± 0.8; n = 9 |
General functional decline | 1.9 ± 0.8; n = 8 | 5.0 ± 0.0; n = 8 |
Functional markers of decline | 2.5 ± 0.6; n = 4 | |
Dependency on others for most care needs | n = 0 | |
Nutritional markers of decline | 1.8 ± 0.7; n = 8 | 4.0 ± 0.6; n = 4 |
Significant weight loss | 2.0 ± 0.8; n = 4 | |
Interruption of any vital support measures | 2.7 ± 0.8; n = 6 | 4.0 ± 0.8; n = 11 |
Other markers of severity and extreme fragility | 2.0 ± 1.0; n = 12 | 3.7 ± 0.7; n = 9 |
Sentinel events | n = 0 | |
≥ 2 unscheduled hospitalizations | 1.8 ± 1.0; n = 9 | 3.9 ± 0.8; n = 9 |
≥ 2 concomitant diseases | n = 0 | |
Significant co-morbidity | 2.0 ± 1.1; n = 7 | 3.7 ± 0.9; n = 9 |
Emotional distress | 1.8 ± 0.7; n = 8 | 3.7 ± 0.8; n = 6 |
Specialised PC | ||
Specific population | 4.1 ± 1.1; n = 11 | 3.6 ± 1.6; n = 8 |
Rapidly evolving illness | 3.2 ± 1.8; n = 5 | 3.8 ± 1.7; n = 8 |
Need for complex and intense continuing care | 3.0 ± 1.5; n = 12 | 2.3 ± 1.0; n = 9 |
Persistent and distressing symptoms | 4.4 ± 0.6; n = 27 | |
≥ 3 symptoms > 5 on ESAS | 3.8 ± 1.5; n = 8 | 3.6 ± 1.5; n = 10 |
Uncontrolled pain | 3.2 ± 1.2; n = 9 | 4.3 ± 0.9; n = 16 |
Difficulties in assessing symptoms | 3.8 ± 0.9; n = 18 | 3.5 ± 1.1; n = 15 |
Severe psychological and/or existential distress | 2.6 ± 1.0; n = 18 | 2.6 ± 1.2; n = 17 |
Request for assisted suicide or euthanasia | 1.4 ± 1.1; n = 8 | 2.2 ± 1.5; n = 6 |
Psychosocial distress patient and/or relatives | 2.5 ± 0.9; n = 17 | 3.0 ± 1.1; n = 11 |
Difficulties in integrating information about the disease and/or prognosis | 1.0 ± 0.0; n = 1 | |
Lack or insufficient support from relatives | 2.0 ± 1.0; n = 3 | |
Social vulnerability | 2.0 ± 0.0; n = 1 | |
Accompanying the patient is difficult | 1.4 ± 0.8; n = 7 | |
Difficulties in communicating about therapeutic/care objectives | 1.8 ± 0.4; n = 6 | 2.0 ± 1.4; n = 8 |
Significant disagreement, uncertainty or conflict | 2.5 ± 1.5; n = 21 | 2.8 ± 1.4; n = 22 |
Need for support and/or second opinion for current decision-making | 1.9 ± 0.8; n = 9 | |
Difficulties in writing advanced directives | n = 0 | |
Specialised PC team required by healthcare professional | 3.6 ± 1.3; n = 5 | |
Palliative sedation envisaged | 2.6 ± 1.3; n = 14 | |
Need for respite for the relatives | 1.3 ± 0.6; n = 3 |