Table 3.

Version 2 of the PaPaS Scale

Domain and Item numbers	Item	Characteristic	Score	Changes made to Version 2
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: