TABLE 3.
Rating of items in Round 1∗
| Item | Item Description (n = 68) | Median (Range) | % of Patients Rating Item (n = 116) | Outcome | Median (Range) | % of Professionals Rating Item (n = 72) | Outcome | Eligible to be Taken Forward to Round 2 | ||
| 7–9† | 1–3† | 7–9† | 1–3† | |||||||
| 1 | Able to carry out usual activities | 9 (3–9) | 91.2 | 0.9 | essential | 8 (3–9) | 87.5 | 1.6 | essential | yes |
| 2 | Able to participate/enjoy physical activities | 9 (3–9) | 86.0 | 1.8 | essential | 8 (3–9) | 87.5 | 1.6 | essential | yes |
| 3 | Able to eat/drink more easily | 9 (3–9) | 87.8 | 1.7 | essential | 8 (5–9) | 89.1 | 0.0 | essential | yes |
| 4 | Able to swallow without pain | 9 (3–9) | 91.3 | 0.9 | essential | 8 (3–9) | 82.8 | 1.6 | essential | yes |
| 5 | Able to enjoy healthy/balanced eating pattern | 9 (3–9) | 86.8 | 1.8 | essential | 7 (3–9) | 60.9 | 1.6 | not essential | yes |
| 6 | Problems with acid indigestion/ heartburn including at night (reflux) | 8 (2–9) | 78.8 | 4.4 | essential | 7 (4–9) | 60.9 | 0.0 | not essential | yes |
| 7 | Problems eating socially | 8 (1–9) | 72.6 | 7.1 | essential | 7 (3–9) | 59.4 | 3.1 | not essential | yes |
| 8 | Problems with regurgitation and/or vomiting | 8 (1–9) | 75.9 | 5.4 | essential | 7 (3–9) | 76.6 | 1.6 | essential | yes |
| 9 | Flatulence | 7 (1–9) | 69.3 | 6.1 | not essential | 6 (3–9) | 43.8 | 1.6 | not essential | no |
| 10 | Difficulties breathing | 8 (1–9) | 78.9 | 6.1 | essential | 7 (3–9) | 54.7 | 1.6 | not essential | yes |
| 11 | Problems with choking when eating‡ | 8 (1–9) | 79.5 | 5.4 | essential | 8 (3–9) | 79.7 | 1.6 | essential | yes |
| 12 | Problems with appetite loss | 8 (1–9) | 73.2 | 7.1 | essential | 7 (3–9) | 64.1 | 3.1 | not essential | yes |
| 13 | Problems with sense of taste | 7 (1–9) | 59.5 | 11.7 | not essential | 6 (1–9) | 39.1 | 12.5 | not essential | no |
| 14 | Sudden dizziness, sweating and/or feeling drained after eating (dumping) | 8 (1–9) | 76.4 | 4.5 | essential | 7 (3–9) | 62.5 | 1.6 | not essential | yes |
| 15 | Nausea | 7 (1–9) | 69.6 | 7.1 | not essential | 7 (3–9) | 67.2 | 3.1 | not essential | no |
| 16 | Diarrhoea | 8 (2–9) | 73.0 | 1.8 | essential | 7 (3–9) | 60.9 | 4.7 | not essential | yes |
| 17 | Having good general health | 9 (3–9) | 89.4 | 1.8 | essential | 7 (2–9) | 73.4 | 1.6 | essential | yes |
| 18 | Problems with general pain | 7 (1–9) | 75.0 | 5.4 | essential | 7 (2–9) | 68.8 | 4.7 | not essential | yes |
| 19 | Problems with weak voice/ hoarseness | 7 (1–9) | 60.0 | 12.7 | not essential | 7 (2–9) | 50.0 | 9.4 | not essential | no |
| 20 | Constipation | 7 (1–9) | 57.5 | 9.7 | not essential | 6 (2–9) | 32.8 | 7.8 | not essential | no |
| 21 | Coughing | 7 (1–9) | 64.9 | 12.6 | not essential | 6 (2–9) | 46.9 | 3.1 | not essential | no |
| 22 | Dry mouth | 7 (1–9) | 56.8 | 13.5 | not essential | 6 (1–9) | 26.6 | 15.6 | not essential | no |
| 23 | Problems with sleeping§ | 8 (1–9) | 74.1 | 5.4 | essential | 7 (2–9) | 62.5 | 6.3 | not essential | yes |
| 24 | Fatigue | 8 (1–9) | 77.3 | 6.4 | essential | 7 (2–9) | 56.3 | 4.7 | not essential | yes |
| 25 | Problems with weight | 7 (1–9) | 63.7 | 8.0 | not essential | 6 (3–9) | 48.4 | 4.7 | not essential | no |
| 26 | Feeling in control of weight and appearance | 8 (2–9) | 74.3 | 4.4 | essential | 6 (2–9) | 43.8 | 12.5 | not essential | yes |
| 27 | Feeling satisfied/confident with one's body | 8 (2–9) | 72.3 | 3.6 | essential | 6 (2–9) | 50.0 | 9.4 | not essential | yes |
| 28 | Hair loss | 5.5 (1–9) | 40.7 | 23.9 | not essential | 6 (1–9) | 28.1 | 17.2 | not essential | no |
| 29 | Interested in/able to enjoy sex | 7 (1–9) | 53.6 | 17.9 | not essential | 6 (2–9) | 48.4 | 7.8 | not essential | no |
| 30 | Relationships with friends | 8 (2–9) | 77.0 | 1.8 | essential | 7 (2–9) | 65.6 | 6.3 | not essential | yes |
| 31 | Relationships with family | 9 (1–9) | 84.8 | 1.8 | essential | 7 (2–9) | 76.6 | 4.7 | essential | yes |
| 32 | Cognitive function | 8 (1–9) | 72.6 | 6.2 | essential | 7 (2–9) | 56.3 | 6.3 | not essential | yes |
| 33 | Anxiety | 7 (1–9) | 61.1 | 10.6 | not essential | 7 (2–9) | 59.4 | 4.7 | not essential | no |
| 34 | Depression | 8 (1–9) | 68.1 | 13.3 | not essential | 7 (2–9) | 68.8 | 3.1 | not essential | no |
| 35 | Problems with changes in general mood | 7 (1–9) | 67.0 | 13.4 | not essential | 7 (2–9) | 65.6 | 4.7 | not essential | no |
| 36 | Money worries due to loss of earnings | 7 (1–9) | 52.2 | 18.6 | not essential | 7 (1–9) | 67.2 | 4.7 | not essential | no |
| 37 | Overall quality of life | 9 (1–9) | 85.8 | 1.8 | essential | 8 (2–9) | 93.8 | 1.6 | essential | yes |
| 38 | Spiritual or faith issues | 5 (1–9) | 34.5 | 38.1 | not essential | 6 (1–9) | 42.2 | 20.3 | not essential | no |
| 39 | Improving patient's ability to eat and drink‡ | 9 (3–9) | 94.7 | 0.9 | essential | 7 (2–9) | 73.0 | 1.6 | essential | yes |
| 40 | Overall survival | 9 (5–9) | 93.8 | 0.0 | essential | 9 (5–9) | 98.4 | 0.0 | essential | yes |
| 41 | Cancer-specific survival¶ | 9 (5–9) | 95.5 | 0.0 | essential | 9 (5–9) | 95.3 | 0.0 | essential | yes |
| 42 | Chance of cancer returning¶ | 9 (1–9) | 87.5 | 1.8 | essential | 9 (6–9) | 92.2 | 0.0 | essential | yes |
| 43 | Inoperability | 9 (1–9) | 85.6 | 2.7 | essential | 8 (3–9) | 89.1 | 3.1 | essential | yes |
| 44 | Organ injury | 9 (3–9) | 82.1 | 0.9 | essential | 7 (3–9) | 73.4 | 3.1 | essential | yes |
| 45 | Hemorrhage | 8 (1–9) | 79.6 | 4.4 | essential | 7 (4–9) | 76.6 | 0.0 | essential | yes |
| 46 | Chyle/pleural leak | 8 (1–9) | 80.7 | 4.4 | essential | 8 (4–9) | 84.4 | 0.0 | essential | yes |
| 47 | Anastomotic leak | 8 (1–9) | 89.3 | 1.8 | essential | 9 (5–9) | 95.3 | 0.0 | essential | yes |
| 48 | Conduit necrosis | 9 (1–9) | 89.3 | 0.9 | essential | 9 (5–9) | 95.3 | 0.0 | essential | yes |
| 49 | Need for insertion of further tubes | 8 (1–9) | 75.0 | 4.5 | essential | 6 (1–9) | 48.4 | 12.5 | not essential | yes |
| 50 | Laryngeal nerve palsy | 9 (1–9) | 82.7 | 1.8 | essential | 7 (2–9) | 68.8 | 4.7 | not essential | yes |
| 51 | Wound infection or dehiscence | 8 (1–9) | 82.1 | 4.5 | essential | 7 (2–9) | 51.6 | 4.7 | not essential | yes |
| 52 | Cardiac complications | 9 (1–9) | 77.7 | 3.6 | essential | 7 (3–9) | 64.1 | 1.6 | not essential | yes |
| 53 | Renal complications | 9 (1–9) | 76.8 | 3.6 | essential | 7 (3–9) | 50.0 | 3.1 | not essential | yes |
| 54 | Severe urine infection (septicaemia) | 8 (1–9) | 80.2 | 3.6 | essential | 6 (2–9) | 37.5 | 6.3 | not essential | yes |
| 55 | Cerebral complications | 9 (1–9) | 77.5 | 2.7 | essential | 7 (2–9) | 53.1 | 6.3 | not essential | yes |
| 56 | Liver failure | 9 (1–9) | 80.4 | 3.6 | essential | 6 (1–9) | 46.9 | 12.5 | not essential | yes |
| 57 | Respiratory complications | 9 (1–9) | 85.8 | 2.7 | essential | 7 (3–9) | 71.9 | 0.0 | essential | yes |
| 58 | Deep vein thrombosis; Pulmonary embolism | 9 (1–9) | 80.4 | 3.6 | essential | 7 (3–9) | 71.9 | 1.6 | essential | yes |
| 59 | Re-ventilation | 9 (1–9) | 84.1 | 1.8 | essential | 8 (4–9) | 89.1 | 0.0 | essential | yes |
| 60 | In-hospital mortality | 9 (1–9) | 84.8 | 5.4 | essential | 9 (7–9) | 100.0 | 0.0 | essential | yes |
| 61 | Esophageal stricture‡ | 9 (1–9) | 79.5 | 4.5 | essential | 7 (4–9) | 78.1 | 0.0 | essential | yes |
| 62 | Pyloric dilatation‡ | 8 (1–9) | 79.5 | 4.5 | essential | 7 (4–9) | 71.9 | 0.0 | essential | yes |
| 63 | Severe problems related to nutrition | 8 (1–9) | 81.4 | 2.7 | essential | 7 (4–9) | 81.3 | 0.0 | essential | yes |
| 64 | Empyema | 8 (1–9) | 78.2 | 3.6 | essential | 7 (3–9) | 67.2 | 3.1 | not essential | yes |
| 65 | Additional surgery due to abdominal hernia | 8 (1–9) | 74.5 | 6.4 | essential | 6 (2–9) | 40.6 | 7.8 | not essential | yes |
| 66 | Colonic interposition | 9 (1–9) | 86.2 | 1.8 | essential | 8 (2–9) | 75.0 | 7.8 | essential | yes |
| 67 | Diaphragmatic hernia repair | 9 (1–9) | 81.8 | 2.7 | essential | 7 (2–9) | 68.8 | 7.8 | not essential | yes |
| 68 | Need for another operation | 9 (1–9) | 85.5 | 3.6 | essential | 8 (1–9) | 78.1 | 6.3 | essential | yes |
*Items ordered as they appeared in the Round 1 questionnaire.
†Survey items in Round 1 were categorized as “essential” and retained for Round 2 if they met the following cutoff criteria: (i) rated between 7 and 9 by ≥70% of respondents, and; (ii) rated between 1 and 3 by <15% of respondents.
‡excluded – after discussion it was concluded that these items were covered by item number 3 “being able to eat/drink more easily.”
§excluded – after discussion it was concluded that this item was covered by item number 6 “Problems with acid indigestion/heartburn including at night (reflux).”
¶excluded – after discussion it was concluded that these items could be put under the generic survival term of item number 40 “overall survival.”
Items in italics were merged with the adjacent item in italics at the end of round 1.