Domain and Item number | Item | Characteristic | Score (preliminary) | Changes made to Version 1 |
---|---|---|---|---|
Domain 1 | Estimated life expectancy | Position: end of the scale | ||
1.1 | Estimated life expectancy | > 2 years | 0 □ | Qualitative time frames (e.g. weeks to months) |
> 1 but < 2 years | 1 □ | |||
3 months to 1 year | 2 □ | |||
< 3 months | 3 □ | |||
1.2 | “Would you be surprised if this patient were still alive in 6 months time?” | Yes | 3 □ | |
No | 0 □ | |||
Domain 2 | Expected outcome of current treatment directed at the disease and burden of this treatment | |||
2.1 | Expected outcome of treatment directed at the disease | There are no treatments currently that can cure the disease or prolong life. | 4 □ | Percentages omitted Outcome of treatment described with respect to life extension and quality of life |
Current treatment patient is receiving or will be receiving may, in only a small number of cases (<20%), prolong life but will not cure. | 3 □ | |||
Current treatment patient is receiving or will be receiving may, in >20% of cases, prolong life but will not cure. | 2 □ | |||
Current treatment patient is receiving or will be receiving may cure the illness in <20% of cases. | 1 □ | |||
Current treatment patient is receiving or will be receiving may cure the illness in >20% of cases. | 0 □ | |||
2.2 | Burden of treatments | Treatments carry a high level of burden (many side effects). | 2 □ | Further explication of ‘burden’ (e.g. side effects, stay in hospital) |
Treatments carry a low to medium level of burden (few side effects). | 1 □ | |||
Treatments carry no or minimal burden (side effects) or no treatment is envisioned. | 0 □ | |||
Domain 3 | Performance status | Rephrased: ‘Trajectory of disease and impact on daily activities of the child’ Position: beginning of the scale | ||
3.1 | Current performance status (in comparison with the child’s own baseline) | Moderate to severe restriction of play (no active play, requires assistance for quiet play) 0-40% of normal range. | 3 □ | Change of characteristics and omission of percentages |
Mild to moderate restriction of play (able to engage in some active play; requires assistance) 50-70% of normal range. | 1 □ | |||
Normal range of play (able to carry on usual play activities) 80-100% of normal range. | 0 □ | |||
3.2 | Rate of decline of performance status | Overall, performance has decreased by half over the last 4 weeks. | 2 □ | Time frame and impact of decline included in 3.1 |
Overall, performance has decreased by about a third over the last 4 weeks. | 1 □ | |||
Overall performance has not deteriorated over the last 4 weeks. | 0 □ | |||
Domain 4 | Symptom and problem burden | |||
4.1 | Number of symptoms | Patient has 3 or more symptoms (e.g. pain, weight loss, fatigue, dyspnoea, nausea & vomiting, depression, anxiety) | 4 □ | List of symptoms amended |
Patient has 2 symptoms | 3 □ | |||
Patient has 1 symptom | 2 □ | |||
Patient is asymptomatic | 0 □ | |||
4.2 | Symptom intensity | Any symptom is severe (equivalent to >6 out of 10) | 3 □ | Intensity amended by controllability |
Any symptom is moderate (equivalent to 4–6 out of 10) | 2 □ | |||
Any symptom is mild (equivalent to 3 or less out of 10) | 1 □ | |||
Symptoms are absent | 0 □ | |||
4.3 | Psychological distress of patient | Significant | 2 □ | |
Mild to moderate | 1 □ | |||
Absent | 0 □ | |||
4.4 | Psychological distress of parent(s) | Significant | 2 □ | |
Mild to moderate | 1 □ | |||
Absent | 0 □ | |||
4.5 | Psychological distress of siblings | Significant | 2 □ | Omission |
Mild to moderate | 1 □ | |||
Absent | 0 □ | |||
Domain 5 | Preferences of patient, family and health professional | |||
5.1 | Request by patient and family | Patient specifically requests a palliative care approach. | 4 □ Yes | Omission |
0 □ No | ||||
Family specifically requests a palliative care approach. | 4 □ Yes | |||
0 □ No | ||||
5.2 | Preference of health professional | You feel that this patient would definitely benefit from a palliative care approach. | 4 □ Yes | |
0 □ No | ||||
Total score: |