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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)
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Stable
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0 □
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Slowly deteriorating without impact on daily activities.
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1 □
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|
Unstable With impact on and restriction of daily activities.
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2 □
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Significant deterioration with severe restriction of daily activities.
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4 □
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1.2
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Increase of hospital admissions, (> 50% within 3 months, compared to previous periods)
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No
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0 □
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Yes
|
3 □
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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 directed at the disease, (does not mean treatment of disease related complications, such as pain, dyspnoea or fatigue)
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…is curative.
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0 □
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…controls disease and prolongs life with good quality of life.
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1 □
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…does not cure or control but has a positive effect on quality of life.
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2 □
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…does not control and has no effect on quality of life.
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4 □
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2.2
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Burden of treatment, (Burden means side effects of treatment and additional burdens such as stay in hospital in the patient’s or family’s view)
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No or minimal burden or no treatment is envisioned.
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0 □
|
|
Low level of burden
|
1 □
|
|
Medium level of burden
|
2 □
|
|
High level of burden
|
4 □
|
|
Domain 3
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Symptom and problem burden
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3.1
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Symptom intensity or difficulty of symptom control (over the last 4 weeks)
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Patient is asymptomatic
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0 □
|
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Symptom(s) are mild and easy to control
|
1 □
|
|
Any symptom is moderate and controllable
|
2 □
|
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Any symptom is severe or difficult to control (unplanned hospitalisation or outpatient visits, symptom crises)
|
4 □
|
|
3.2
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Psychological distress of patient related to symptoms
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Absent
|
0 □
|
|
Mild
|
1 □
|
|
Moderate
|
2 □
|
|
Significant
|
4 □
|
|
3.3
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Psychological distress of parents or family related to symptoms and suffering of the child
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Absent
|
0 □
|
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Mild
|
1 □
|
|
Moderate
|
2 □
|
|
Significant
|
4 □
|
|
Domain 4
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Preferences/needs of patient or parents
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|
Preferences of health professional
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4.1
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Patient/parents wish to receive palliative care or formulate needs that are best met by palliative care.
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No
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0 □ please answer 4.2
|
|
Yes
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4 □ do not answer 4.2
|
|
4.2
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You/your team feel that this patient would benefit from palliative care.
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No
|
0 □
|
|
Yes
|
4 □
|
|
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 □ please answer 5.2
|
|
Months to 1–2 years
|
1 □ please answer 5.2
|
|
Weeks to months
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3 □ do not answer 5.2
|
|
Days to weeks
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4 □ do not answer 5.2
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|
5.2
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“Would you be surprised if this child were to suddenly die in 6 months time?”
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Yes
|
0 □
|
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No
|
2 □
|
| | |
Total score:
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