Background
Methods
Forward and backward translation
Cognitive debriefing interviews: materials and methods
Analysis
Results
Characteristics | Pooled sample Rounds 1 & 2 (N = 96) | Round 1 (n = 81) | Round 2 (n = 15) |
---|---|---|---|
Age in years (mean ± SD) | 55.16 ± 8.7 | 55.05 ± 8.7 | 55.87 ± 9.8 |
< 50 | 23 (24.0) | 20 (24.7) | 3 (20) |
50–64 | 61 (63.5) | 52 (64.2) | 9 (60) |
≥ 65 | 12 (12.5) | 9 (11.1) | 3 (20) |
Gender | |||
Female | 80 (83.3) | 68 (84) | 12 (80) |
Education level | |||
No formal education | 2 (2.1) | 2 (2.5) | 0 |
Primary | 29 (30.2) | 26 (32.1) | 3 (20) |
Secondary | 54 (56.3) | 44 (54.3) | 10 (66.7) |
Junior college/diploma | 8 (8.3) | 6 (7.4) | 2 (13.3) |
Undergraduate to postgraduate | 3 (3.1) | 3 (3.7) | 0 |
Country of birth | (n = 94) | (n = 79) | |
China | 8 (8.5) | 6 (7.6) | 2 (13.3) |
Hong Kong | 1 (1.1) | 1 (1.3) | 0 |
Malaysia | 16 (17.0) | 15 (19) | 1 (6.7) |
Singapore | 69 (73.4) | 57 (72.2) | 12 (80) |
Language acculturation | |||
75–100% feel most comfortable speaking Chinese | 79 (82.3) | 65 (80.2) | 14 (93.3) |
75–100% prefer to speak Chinese with friends | 77 (80.2) | 64 (79) | 13 (86.7) |
75–100% think in Chinese | 82 (85.4) | 69 (85.2) | 13 (86.7) |
75–100% speak Chinese at home | 79 (82.3) | 67 (82.7) | 12 (80) |
Chinese-speaking region or dialect | |||
Fujian | 39 (40.6) | 34 (42.0) | 5 (33.3) |
Chaoshan | 22 (22.9) | 17 (21.0) | 5 (33.3) |
Fujian & Chaoshan | 3 (3.1) | 3 (3.7) | 0 |
Southern region of Guangdong & Hong Kong | 10 (10.4) | 8 (9.9) | 2 (13.3) |
North-eastern region of Guangdong | 5 (5.2) | 4 (4.9) | 1 (6.7) |
Hainan | 4 (4.2) | 3 (3.7) | 1 (6.7) |
Others | 6 (6.3) | 5 (6.2) | 1 (6.7) |
Missing | 7 (7.3) | 7 (8.6) | 0 (0) |
Type of cancer | |||
Breast | 72 (75.0) | 60 (74.1) | 12 (80) |
Colorectal | 24 (25.0) | 21 (25.9) | 3 (20) |
Stage of cancer | |||
I-II | 56 (58.3) | 48 (59.3) | 8 (53.3) |
III | 34 (35.4) | 28 (34.6) | 6 (40.0) |
issing | 6 (6.3) | 5 (6.2) | 1 (6.7) |
Type of cancer therapy | (n = 14) | ||
Chemotherapy | 7 (7.4) | 3 (3.7) | 4 (28.6) |
Surgery + chemotherapy | 80 (84.2) | 70 (86.4) | 10 (71.4) |
Surgery + chemo-radiotherapy | 8 (8.4) | 8 (9.9) | 0 |
PRO-CTCAE Symptom Terms | |||||
Source of Difficulty | Proportion with Difficulties in Round 1 (n = 81) | PRO-CTCAE Symptom Term % (f/n) | Examples of Difficulties Experienced by Participants in Round 1 | Decisions based on data from Round 1 | Decisions based on data from Round 2 |
Comprehension | ≥ 20% with difficulties | None | |||
≥ 10% and < 20% with difficulties | Bed sores 17.3% (14/81) | Participants (14/81) did not understand what was meant by ‘bed sore’. | Rephrased to include an elaboration and retested | Well comprehended (15/15) and phrasing retained | |
Difficulty getting or keeping an erection 15.4% (2/13 males) | Participants (2/13) did not understand what was meant by ‘erection’. | No suitable alternative term; retested | Well comprehended (3/3 males) and phrasing retained | ||
Ejaculation problem 15.4% (2/13 males) | Participants (2/13) did not understand what was meant by ‘ejaculation’. | No suitable alternative term; retested | Well comprehended (3/3 males) and phrasing retained | ||
Increased passing of gas 16% (13/81) | Participants (9/81) did not understand what was meant by ‘passing of gas’. | Rephrased and retested | Well comprehended (15/15) and phrasing retained | ||
< 10% with difficulties | Abdominal pain 1.2% (1/81) | Participant (1/81) did not understand what was meant by ‘abdominal pain’. Some participants suggested other plain language Chinese phrasing (synonyms) that would be more culturally acceptable to the Chinese-speaking population from southern region. | Included synonyms and retested | Well comprehended (15/15) and phrasing retained | |
Bloating 1.2% (1/81) | Participant (1/81) did not understand what was meant by ‘bloating’. Some participants suggested alternate plain Chinese language phrasing (synonyms) that would be more culturally acceptable to the Chinese-speaking population from southern region. | Included synonyms and retested | Well comprehended (15/15) and phrasing retained | ||
Flashing lights in front of your eyes 1.2% (1/81) | Participant (1/81) did not understand what was meant by ‘flashing lights’. Some participants’ (3/81) facial expressions suggested uncertainty about the intended meaning of this symptom term. | Rephrased and retested | Well comprehended (15/15) and phrasing retained | ||
Frequent urination 6.2% (5/81) | Participants (4/81) did not understand what was meant by ‘frequent urination’. Some participants suggested alternate simple Chinese language phrases (synonyms) that would be more culturally acceptable to the Chinese-speaking population from southern region. | Included synonyms and retested | Well comprehended (15/15) and phrasing retained | ||
Numbness or tingling in your hands or feet 1.2% (1/81) | Participant (1/81) did not understand what was meant by ‘numbness or tingling’. Some participants’ (3/81) facial expressions suggested uncertainty about the intended meaning of this symptom term. | Rephrased and retested | Well comprehended (15/15) and phrasing retained | ||
Wheezing 2.5% (2/81) | Participant (1/81) did not understand what was meant by ‘wheezing’. Participants recommended an elaboration to improve comprehension and clarity. | Rephrased, included an elaboration, and retested | Well comprehended (15/15) and phrasing retained | ||
Ease of recall, judgment and response | ≥ 20% with difficulties | Stretch marks 22.2% (18/81) | Participants (18/81) were uncertain if it related to pregnancy. | Rephrased and retested | Well comprehended (15/15) and phrasing retained |
≥ 10% and < 20% with difficulties | None | ||||
< 10% with difficulties | Hot flashes 6.2% (5/81) | Participants (3/81) were uncertain if it related to fever or feeling hot. Some participants recommended an elaboration to improve comprehension and clarity. | Item rephrased to include an elaboration and retested | Well comprehended (15/15) and phrasing retained | |
General pain 4.9% (4/81) | Participants (3/81) were uncertain about the type/ location of pain. Some participants recommended an elaboration to improve comprehension and clarity. | Item rephrased to include an elaboration and retested | Well comprehended (15/15) and phrasing retained | ||
Nausea 4.9% (4/81) | Participants (4/81) confused this terminology as ‘vomiting’. Some participants suggested to include some elaborations. | Rephrased, added an elaboration, and retested | Well comprehended (15/15) and phrasing retained | ||
Vaginal dryness 4.4.% (3/68 females) | Participants (2/68) were uncertain about the context of condition. Some participants (5/68) showed hesitation with responses | Rephrased and retested | Well comprehended (12/12 females) and phrasing retained | ||
Nothing could cheer you up 3.7% (3/81) | Participants (3/81) had difficulty choosing a response. Some participants (2/81) showed hesitation with responses | Rephrased and retested | Well comprehended (15/15) and phrasing retained | ||
Pain during vaginal sex 2.9% (2/68 females) | Participants (2/68) had difficulty choosing a response. Some participants (5/68) showed hesitation with responses | Rephrased and retested | Well comprehended (12/12) and phrasing retained | ||
Pounding or racing heartbeat 2.5% (2/81) | Participants (2/81) did not understand to what extend to be considered as pounding. Some participants (2/81) showed hesitation with responses | Rephrased and retested | Well comprehended (15/15) and phrasing retained | ||
Sad or unhappy feelings 1.2% (1/81) | Participant (1/81) had difficulty choosing a response. Some participants (3/81) showed hesitation with responses. | Rephrased and retested | Well comprehended (15/15) and phrasing retained | ||
Urinary urgency 1.2% (1/81) | Participant (1/81) did not understand to what extend to be considered as urge. Some participants suggested alternate simple Chinese language phrases (synonyms) that would be more culturally acceptable to the Chinese-speaking population from southern region. | Included synonyms and retested | Well comprehended (15/15) and phrasing retained | ||
PRO-CTCAE Attributes | |||||
Source of Difficulty | Proportion with difficulties in Round 1 (n = 81) | PRO-CTCAE Attribute % (n/N) | Examples of Difficulties Experienced by Participants in Round 1 | Decisions based on data from Round 1 | Decisions based on data from Round 2 |
Comprehension | ≥ 20% with difficulties | None | |||
≥ 10% and < 20% with difficulties | None | ||||
< 10% with difficulties | Interfere 8.6% (7/81) | Participants (4/81) did not understand what was meant by ‘interfere’. | No suitable alternative term; retested | Well comprehended (15/15) and phrasing retained | |
Ease of recall, judgement and response | ≥ 20% with difficulties | Severity at its Worst 23.5% (19/81) | Participants (11/81) commented this was a double barrelled phrasing, making it difficult to choose a response. | Rephrased and retested | Well comprehended (15/15) and phrasing retained |
≥ 10% and < 20% with difficulties | How Often 11.1% (9/81) | Participants (9/81) were unclear if this question was asking for them to provide precise count of the number of times something occurred, thus making it difficult to select from the response choices. | Rephrased and retested | Well comprehended (15/15) and phrasing retained | |
< 10% with difficulties | None |