Table 4 Version 3 of the PaPaS Scale

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)

Stable

0 □

Slowly deteriorating without impact on daily activities.

1 □

Unstable With impact on and restriction of daily activities.

2 □

Significant deterioration with severe restriction of daily activities.

4 □

1.2

Increase of hospital admissions, (> 50% within 3 months, compared to previous periods)

No

0 □

Yes

3 □

Domain 2

Expected outcome of treatment directed at the disease and burden of treatment

2.1

Treatment directed at the disease, (does not mean treatment of disease related complications, such as pain, dyspnoea or fatigue)

…is curative.

0 □

…controls disease and prolongs life with good quality of life.

1 □

…does not cure or control but has a positive effect on quality of life.

2 □

…does not control and has no effect on quality of life.

4 □

2.2

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)

No or minimal burden or no treatment is envisioned.

0 □

Low level of burden

1 □

Medium level of burden

2 □

High level of burden

4 □

Domain 3

Symptom and problem burden

3.1

Symptom intensity or difficulty of symptom control (over the last 4 weeks)

Patient is asymptomatic

0 □

Symptom(s) are mild and easy to control

1 □

Any symptom is moderate and controllable

2 □

Any symptom is severe or difficult to control (unplanned hospitalisation or outpatient visits, symptom crises)

4 □

3.2

Psychological distress of patient related to symptoms

Absent

0 □

Mild

1 □

Moderate

2 □

Significant

4 □

3.3

Psychological distress of parents or family related to symptoms and suffering of the child

Absent

0 □

Mild

1 □

Moderate

2 □

Significant

4 □

Domain 4

Preferences/needs of patient or parents

Preferences of health professional

4.1

Patient/parents wish to receive palliative care or formulate needs that are best met by palliative care.

No

0 □ please answer 4.2

Yes

4 □ do not answer 4.2

4.2

You/your team feel that this patient would benefit from palliative care.

No

0 □

Yes

4 □

Domain 5

Estimated life expectancy

5.1

Estimated life expectancy

Several years

0 □ please answer 5.2

Months to 1–2 years

1 □ please answer 5.2

Weeks to months

3 □ do not answer 5.2

Days to weeks

4 □ do not answer 5.2

5.2

“Would you be surprised if this child were to suddenly die in 6 months time?”

Yes

0 □

No

2 □

Total score: