Domain 1
|
Trajectory of disease and impact on daily activities of the child
| |
1.1
|
Trajectory of disease and impact on daily activities of the child (in comparison with the child’s own baseline) (with reference to the last 4 weeks up to a few months)
|
Stable
|
0 □
|
Time frame: 4 weeks, Characteristics: unified, Amended: increase of hospital admissions
|
Slowly deteriorating without impact on daily activities.
|
1 □
|
Unstable with frequent absences from school or restriction of daily activities.
|
2 □
|
Significant and rapid deterioration with severe restriction of daily activities.
|
4 □
|
Domain 2
|
Expected outcome of treatment directed at the disease and burden of treatment
| |
2.1
|
Treatment for the disease
|
… does not cure and has no effect on quality-of-life.
|
3 □
|
Meaning of ‘treatment’ outlined further, Characteristics further divided
|
… does not cure but has a positive effect on survival and quality-of-life.
|
2 □
|
… may cure or will prolong survival significantly.
|
1 □
|
2.2
|
Burden of treatment, (Burden means side effects of treatment as well as additional burdens such as stay in hospital)
|
High level of burden
|
2 □
|
Low to medium level of burden
|
1 □
|
No or minimal burden or no treatment is envisioned.
|
0 □
|
Domain 3
|
Symptom and problem burden
| |
3.1
|
Number of symptoms, (e.g. pain, dyspnoea, nausea/vomiting, weakness/fatigue, anxiety/depression, weight loss, neurological symptoms), (during the last 4 weeks)
|
≥ 3 symptoms
|
4 □
|
Number and listing of symptoms replaced and summarised by intensity and controllability
|
2 symptoms
|
3 □
|
1 symptom
|
2 □
|
Patient is asymptomatic
|
0 □
|
3.2
|
Symptom intensity or difficulty of symptom control estimation following VAS scale 0–10, (over the last 4 weeks)
|
Any symptom is severe (equivalent to ≥6 out of 10)
|
3 □
|
Any symptom is moderate (equivalent to 4–6 out of 10)
|
2 □
|
Any symptom is mild (equivalent to ≤ 3 out of 10)
|
1 □
|
Patient is asymptomatic
|
0 □
|
3.3
|
Psychological distress of patient due to symptoms
|
Significant
|
2 □
|
Provisional change of scores
|
Mild to moderate
|
1 □
|
Absent
|
0 □
|
3.4
|
Psychological distress of parents or family due to symptoms
|
Significant
|
2 □
|
Mild to moderate
|
1 □
|
Absent
|
0 □
|
Domain 4
|
Preferences of health professional
| |
4.1
|
Preference of health care professional
|
You feel that this patient would definitely benefit from palliative care.
|
4 □ Yes
|
Preference of patient and family reintroduced counting only one answer
|
0 □ No
|
Domain 5
|
Estimated life expectancy
| |
5.1
|
Estimated life expectancy
|
Several years
|
0 □
|
Change to an either-or-question
|
Months to 1–2 years
|
1 □
|
Weeks to months
|
2 □
|
Days to weeks
|
3 □
|
5.2
|
“Would you be surprised if this patient were still alive in 6 months time?”
|
Yes
|
3 □
|
No
|
0 □
|
| |
Total score:
| | |