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