Table 2 Proportion of missing values (MV) for key questions from the questionnaire
% of MV | ||
|---|---|---|
SH | DK | |
Diagnostic delay and satisfaction with diagnostic phase | ||
1. How did the process start that led to your diagnosis with cancer? | 12.5 | 1.5 |
2. How do you rate the length of time: | ||
a) From your first examination by the general practitioner, until you were referred to a specialised doctor or hospital? | 18.5 | 10.8 |
b) From your referral to examination at a specialised doctor or hospital, until you were diagnosed with cancer? | 16.9 | 10.6 |
c) From when you were told that you had cancer until you received your first treatment? | 1.3 | 3.5 |
3. Do you feel you were taken seriously when you attended the general practitioner with your symptoms? | 7.7 | 5.3 |
4. Overall, how do you rate your diagnostic phase (i.e. what was done until you received your diagnosis)? | 6.9 | 6.2 |
5. Do you feel your cancer diagnosis was given to you in a proper manner? | 1.3 | 1.2 |
6. Is there anything you would have liked to have been different in the period of time from when you were told that you had cancer until your treatment was initiated? | 1.9 | 3.0 |
Information & involvement | ||
7. Before you started treatment, did a doctor or nurse give you the information you needed in relation to: | ||
a) Your disease? | 3.8 | 2.8 |
b) Your treatment(s)? | 11.3 | 8.8 |
c) Which complications may occur after operation? (e.g. inflammation, bleeding) | 6.9 | 9.8 |
d) Which side effect(s) of medicine may occur? (e.g. nausea, sensory disturbance after chemotherapy) | 7.5 | 9.2 |
8. Were you sufficiently involved in treatment decisions? Assessed via agreement or disagreement of answers to the following questions: | 20.0 | 15.0 |
a) Which statement describes best, how decisions about your treatment were made?* | 11.3 | 7.6 |
b) Which statement describes best, how you would prefer decisions about your treatment are made?* | 16.9 | 13.0 |
9. Have you ever doubted whether the treatment you were offered was the right treatment for you? | 3.8 | 4.4 |
10. Do you feel that the doctors | ||
a) Treated you like a whole person and was not just interested in your disease? | 5.7 | 6.6 |
b) Took time to understand what was important for you? | 6.3 | 10.5 |
Continuity of care | ||
11. Which of the following statements best describes your experience at the hospital? One particular doctor was responsible for my overall treatment, etc. (see Additional file 2: Table S1) | 7.6 | 8.6 |
12. Did you feel that there was a clear plan for your overall treatment pathway? | 1.9 | 4.3 |
13. How do you rate the number of doctors you have been in contact with during your treatment at hospital? | 1.9 | 4.4 |
14. Have you had at least one doctor at the hospital you felt that you could reach out to if you needed it? | 1.3 | 6.6 |
Help & support | ||
15. Have you received the help you needed from the healthcare system/municipality in relation to: | ||
a) Physical rehabilitation? | 8.8 | 8.4 |
b) Anxiety, sadness or worries (e.g. talks with i.e. a psychologist/priest)? | 10.0 | 10.2 |
c) Unexpected weight changes/malnutrition (e.g. dietary regimen, dietary advice)? | 9.4 | 10.9 |
d) Problems with intimacy or relationships? | 11.9 | 11.0 |
Discharge and overall treatment | ||
16. Did you feel comfortable being discharged from hospital? | 0.9 | 6.7 |
17. Did you get the information you needed about which symptoms are important for you to respond to? | 1.8 | 9.4 |
18. Do you know who you can contact at the hospital if you need to? | 0.9 | 6.2 |
19. Overall, how do you rate your overall care and treatment at hospital? | 2.5 | 5.0 |