Table 4.
Version 3 of the PaPaS Scale
| Domain and Item numbers | Item | Characteristic | Score |
|---|---|---|---|
|
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: | |||