Table S1 Demographic and Disease Characteristics at Baseline for Sample 1 for Selection

Table S1 Demographic and disease characteristics at baseline for sample 1 for selection of dimensions for and sample 2 for weighting and preliminary validation (entire material). Mean (SD) for continuous variables and numbers (%) for categorical variables

Sample 1 (n=52)**
Phase 1 / Sample 2 (n=110)**
Phase 2
Age (years) / 66.5 (10.0) / 65.7 (10.8)
Females / 24 (46.2) / 50 (45.5)
Weight / 70.7 (14.1) / 71.9 (13.0)
Weight loss* / 7.1 (5.6) / 7.0 (8.4)
BMI / 23.2 (3.9) / 24.2 (3.8)
Surgery / 25 (48.1) / 64 (59.3)
Health status measures
EQ-5D / 0.58 (0.30) / 0.61 (0.27)
ESAS
Pain at rest / 3.04 (2.62) / 2.00 (2.63)
Pain at movement / 2.48 (2.11) / 2.09 (2.69)
Fatigue / 4.22 (2.57) / 3.68 (3.00)
Nausea / 1.67 (2.67) / 1.33 (2.42)
Dyspnoe / 1.39 (2.22) / 1.42 (2.45)
Dry mouth / 3.24 (3.04) / 2.68 (3.03)
Loss of appetite / 4.02 (3.25) / 2.78 (3.27)
Anxiety / 3.76 (3.08) / 2.96 (2.77)
Depression / 3.65 (2.96) / 2.45 (2.67)
Sense of well-being / 3.96 (2.45) / 3.47 (2.82)

*weight loss from disease onset to baseline.

**EQ-5D available in 51 patients in sample 1 and 65 in sample 2;

ESAS available in 51 patients in sample 1 and 97 in sample 2.

Table S2. Probe list in Norwegian and English

Norsk / Norwegian

/ Engelsk / English
Liste over eksempler på områder av helserelatert livskvalitet
(fra ESAS, EQ-5D, EORTC QLQ-C30 og QLQ-PAN26) / List of examples of dimensions of health related quality of life
(from ESAS, EQ-5D, EORTC QLQ-C30 and QLQ-PAN26)
1. Fatigue / utmattelse / Fatigue/exhaustion
2. Vitalitet / Vitality
3. Slapphet / slackness
4. Kraftløshet / powerless
5. Søvn / Sleep
6. Kvalme / Nausea
7. Oppkast / Vomit
8. Vekttap / Weight loss
9. Munntørrhet / Dry mouth
10. Dårlig matlyst / Poor appetite
11. Forstoppelse / Constipation
12. Oppblåst / Bloated
13. Luft / Flatulence
14. Diare / Diarrhoea
15. Endrede matvaner / Changed eating habits
16. Endret smak / Changed tasting
17. Fysisk velvære / Physical well-being
18. Fordøyelse / Digestion
19. Endret avføringsmønster / Changed stool pattern
20. Bevegelighet / Mobility
21. Gange / Walking
22. Vanlige gjøremål / Ordinary tasks
23. Personlig stell / Personal care
24. Ødem / Oedema
25. Feber / Fever
26. Frostrier / Frozen
27. Tungpusten / Short winded
28. Seksuell aktivitet / Sexual activity
29. Bivirkninger / Side effects
30. Smerter / Pain
31. Magesmerter / Abdominal pain
32. Smerter ved hvile / Pain at rest
33. Smerter ved bevegelse / Pain at movement
34. Stillingsavhengige smerter / Posture dependent pain
35. Pankreas-smerter / Pancreatic pain
36. Kognitiv funksjon / Cognitive function
37. Mental funksjon / Mental function
38. Fysisk funksjon / Physical function
39. Rollefunksjon / Role function
40. Arbeid / Work
41. Sosial funksjon / Social function
42. Familieliv / Family life
43. Støtte fra familie og venner / Support from family and friends
44. Kommunikasjon / Communication
45. Engstelse / uro / Anxiety/uneasiness
46. Depresjon / tristhet / Depression/sadness
47. Emosjonelt velvære / Emotional well-being
48. Mestringsopplevelse / Coping perception
49. Kroppsbilde / Body image
50. Kriseopplevelse / Crisis perception
51. Økonomisk betydning / Economic impact
52. Stress / Stress
53. Helhetlig vurdering / Global valuation
54. Tilfredshet med helsetjenesten / Satisfaction with health care
55. Støtte fra helsepersonell / Support from health care providers
56. Informasjon fra helsepersonell / Information from health care providers

Table S3 The eight numeric ratings scales shown in Norwegian and in English versions. The translation was performed from Norwegian to English by two bilingual health care workers. After agreement, the English version was back-translated to Norwegian and identified inconsistencies were solved by a consensus process between the three translators.(1)

The PACADI score is computed according to the following formula: pain/discomfort NRS * 0.16 + fatigue NRS * 0.16 + anxiety NRS * 0.15 + bowel and/or digestive problems NRS * 0.14 + loss of appetite NRS * 0.13 + dry mouth NRS * 0.11 + itchiness NRS * 0.08 + nausea NRS * 0.07.

1. Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 1993;46:1417-1432.
PACADI Norwegian version

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