Questionnaire title and brief description | Item information/response format and scoring | Example questions | Time points |
---|---|---|---|
Primary outcome- Quality of Life | |||
Quality of life: FACT-G [36] | |||
27 item cancer specific QOL measure four subscales covering physical, social or family, emotional and functional wellbeing | 5 point scale (0 not at all – 4 very much) | • I have nausea | Baseline, 6, 12, 18 weeks and 12 months |
• I am forced to spend time in spend | |||
Higher subscale and total scores indicate better QOL (score range 0–108). | • I get support from my friends | ||
• I worry that my condition will get worse | |||
• I have accepted my illness | |||
Secondary outcomes- health economic/clinical process data | |||
EQ-5D-5 L [38] | |||
6 item descriptive health profile (measuring mobility, self-care, usual activities, pain, anxiety/depression) and a single index value for health status that can be used as part of a health-economic evaluation. | 5 items measured on 5 point scale and single global health item rated from 0 (worst health) to 100 (best health) | Self-care | Baseline, 6, 12, 18 weeks and 12 months |
• I have no problems washing of dressing myself | |||
• I have slight problems washing or dressing myself | |||
• I have moderate problems washing or dressing myself | |||
• I have severe problems washing or dressing myself | |||
• I am unable to wash or dress myself | |||
Use of Resources | |||
Assessment of financial impact of cancer treatment covering: | Varied tick boxes and free text options. | • Please complete the boxes below to tell is about any non-hospital health care contacts you have had in the last 6 weeks | 6, 12, 18 weeks and 12 months |
- Employment status | |||
- Contacts with community health care services (GP, district nurses etc) | |||
- Medications costs | • Please tell us about any medications you have been prescribed in the last 6 weeks and who prescribed it | ||
- Cancer related travel costs | |||
- Cancer related food/drink costs | |||
- Additional expenses | |||
• Please tell us about any additional travel costs related to your cancer or cancer treatment you have incurred in the last 6 weeks | |||
EORTC-QLQ C30 [39] | |||
30-item questionnaire with five functional scales (physical, emotional, cognitive, social, role), three symptom scales (fatigue, pain, nausea/vomiting), a global health related quality of life scale, and six single items (anorexia, insomnia, dyspnoea, diarrhoea, constipation, financial difficulties) | Questions are rated on a 4 or 7 point response scales. | • Do you have any trouble taking a long walk | Baseline, 6, 12, 18 weeks and 12 months |
• During the past week… | |||
The scales and single-item responses are recalculated into a score from 0 to 100. | |||
- Have you lacked appetite? | |||
• A high functional scale score represents a high level of functioning | - Were you tired? | ||
- Did you feel depressed? | |||
• A high score for the global health status/QOL represents a high QOL | |||
• A high score for a symptom scale/item represents a high/worse level of symptomatology | |||
Secondary outcomes- Self-efficacy | |||
Self-Efficacy for Managing Chronic Disease [34] | |||
6-Item scale covering several domains common across chronic diseases (symptom control, role function, emotional functioning and communicating with physicians) | Items rated from 1- (not at all confident) to 10 (totally confident) | • How confident are you that you can keep physical discomfort or pain of your disease from interfering with the things you want to do? | Baseline and 18 weeks |
The score for the scale is calculated from the mean of the six items. | • How confident are you that you can do things other than just taking medication to reduce how much you illness affects your everyday life? | ||
Cancer Behaviour Inventory-Brief (CBI-B) [40] | |||
A measure of self-efficacy for coping with cancer. 14 items (adapted from full 33 item measure) | Items are rated on a 9-point scale ranging from 1 (“not all confident”) to 9 (“totally confident”) | Please read each numbered item. Then rate that item on how confident you are that you can accomplish that behaviour. | Baseline and 18 weeks |
- Maintaining independence | |||
- Expressing feelings about cancer | |||
A total score is calculated as the sum of all 12 items. | - Asking physicians’ questions | ||
- Coping with physical changes | |||
Patient Activation Measure (PAM) [41] | |||
13-item scale for measuring the level of patient engagement in their healthcare (knowledge, skill and confidence for self-management) | Statements rated on 4 point scale from disagree strongly to agree strongly and additional N/A option. | • When all is said and done I am the person who is responsible for taking care of my health | Baseline, 18 weeks and 12 months |
• I am confident I follow through on medical treatments I may need to do at home | |||
Responses are combined to provide a single score of between 0 and 100 with higher scores representing higher levels of patient activation. | • I know what treatments are available for my health problems. | ||
Scores can be classified into one of four groups, known as ‘levels of activation’. | |||
Secondary outcomes- eRAPID/IT system performance | |||
System Usability Scale (SUS) [42] | |||
10 item instrument to assess views of usability of an IT systems. | Each statement rated from 1 strongly disagree to 5 strongly agree. | • I think that I would like to use this system frequently | 18 weeks |
• I thought there was too much inconsistency in this system | |||
Responses are calculated into a total score ranging from 0 to 100 with higher scores representing better system usability. | • I felt very confident using the system | ||
eRAPID end of study questionnaire | |||
15 statements/free text boxes to assess participant views of using eRAPID and suggestions for improvements | Statements rated on 3–5 response option scales (e.g. very easy-very difficult) and free text boxes for comments. | • How easy or difficult was it to learn how to use the eRAPID system? | 18 weeks |
• How did you feel about the amount of time it took to complete the symptom questions? | |||
• To what extent do you feel that the symptom questionnaire was useful for the doctors and nurses you saw during your treatment? | |||
• Have you got any suggestions about how the eRAPID system could be improved? |