Table 1.

Version 1 of the PaPaS Scale

Domain and Item number	Item	Characteristic	Score (preliminary)	Changes made to Version 1
Domain 1	Estimated life expectancy			Position: end of the scale
1.1	Estimated life expectancy	> 2 years	0 □	Qualitative time frames (e.g. weeks to months)
		> 1 but < 2 years	1 □
		3 months to 1 year	2 □
		< 3 months	3 □
1.2	“Would you be surprised if this patient were still alive in 6 months time?”	Yes	3 □
		No	0 □
Domain 2	Expected outcome of current treatment directed at the disease and burden of this treatment
2.1	Expected outcome of treatment directed at the disease	There are no treatments currently that can cure the disease or prolong life.	4 □	Percentages omitted Outcome of treatment described with respect to life extension and quality of life
		Current treatment patient is receiving or will be receiving may, in only a small number of cases (<20%), prolong life but will not cure.	3 □
		Current treatment patient is receiving or will be receiving may, in >20% of cases, prolong life but will not cure.	2 □
		Current treatment patient is receiving or will be receiving may cure the illness in <20% of cases.	1 □
		Current treatment patient is receiving or will be receiving may cure the illness in >20% of cases.	0 □
2.2	Burden of treatments	Treatments carry a high level of burden (many side effects).	2 □	Further explication of ‘burden’ (e.g. side effects, stay in hospital)
		Treatments carry a low to medium level of burden (few side effects).	1 □
		Treatments carry no or minimal burden (side effects) or no treatment is envisioned.	0 □
Domain 3	Performance status			Rephrased: ‘Trajectory of disease and impact on daily activities of the child’ Position: beginning of the scale
3.1	Current performance status (in comparison with the child’s own baseline)	Moderate to severe restriction of play (no active play, requires assistance for quiet play) 0-40% of normal range.	3 □	Change of characteristics and omission of percentages
		Mild to moderate restriction of play (able to engage in some active play; requires assistance) 50-70% of normal range.	1 □
		Normal range of play (able to carry on usual play activities) 80-100% of normal range.	0 □
3.2	Rate of decline of performance status	Overall, performance has decreased by half over the last 4 weeks.	2 □	Time frame and impact of decline included in 3.1
		Overall, performance has decreased by about a third over the last 4 weeks.	1 □
		Overall performance has not deteriorated over the last 4 weeks.	0 □
Domain 4	Symptom and problem burden
4.1	Number of symptoms	Patient has 3 or more symptoms (e.g. pain, weight loss, fatigue, dyspnoea, nausea & vomiting, depression, anxiety)	4 □	List of symptoms amended
		Patient has 2 symptoms	3 □
		Patient has 1 symptom	2 □
		Patient is asymptomatic	0 □
4.2	Symptom intensity	Any symptom is severe (equivalent to >6 out of 10)	3 □	Intensity amended by controllability
		Any symptom is moderate (equivalent to 4–6 out of 10)	2 □
		Any symptom is mild (equivalent to 3 or less out of 10)	1 □
		Symptoms are absent	0 □
4.3	Psychological distress of patient	Significant	2 □
		Mild to moderate	1 □
		Absent	0 □
4.4	Psychological distress of parent(s)	Significant	2 □
		Mild to moderate	1 □
		Absent	0 □
4.5	Psychological distress of siblings	Significant	2 □	Omission
		Mild to moderate	1 □
		Absent	0 □
Domain 5	Preferences of patient, family and health professional
5.1	Request by patient and family	Patient specifically requests a palliative care approach.	4 □ Yes	Omission
			0 □ No
		Family specifically requests a palliative care approach.	4 □ Yes
			0 □ No
5.2	Preference of health professional	You feel that this patient would definitely benefit from a palliative care approach.	4 □ Yes
			0 □ No
		Total score: