Table 2 Mean importance scores of questions in decreasing order of perceived importancea, and number of patients who considered that it should be avoided to answer the question or that the question is not applicable in the first weeks after (the likely) diagnosis (N = 47 patients)
Mean | SD | Avoid | Not applicable | ||
|---|---|---|---|---|---|
1 | How certain is it that there are no metastases?b,c | 6.84 | .367 | 2 | 0 |
2 | Can I still have surgery for my pancreatic cancer?b,c | 6.80 | .405 | 1 | 6 |
3 | What are my chances to be cured of pancreatic cancer?b,c | 6.74 | .444 | 1 | 0 |
4 | Which treatments can I have?b,c | 6.72 | .454 | 1 | 2 |
5 | If my pancreatic cancer is not treated, how fast will it then spread?b,c | 6.66 | .708 | 0 | 7 |
6 | If my pancreatic cancer is not treated, will I die from it?c | 6.59 | 1.093 | 3 | 5 |
7 | How does the treatment work?b | 6.58 | .621 | 1 | 1 |
8 | What side effects could occur due to the treatment? | 6.57 | .655 | 0 | 1 |
9 | What is the probability of survival after the surgery that I will have? | 6.56 | .590 | 1 | 3 |
10 | Where in the pancreas is the tumour that I have?c | 6.55 | 1.044 | 2 | 1 |
11 | What can I do against the side effects that occur due to the treatment?c | 6.52 | .505 | 0 | 1 |
12 | How fast will treatment affect my pancreatic cancer? | 6.51 | .631 | 1 | 3 |
13 | What can I do if I am in pain?b | 6.49 | .547 | 0 | 0 |
14 | How often do I need to undergo my treatment?b | 6.49 | .592 | 2 | 2 |
15 | Is it safe to wait before starting the treatment?c | 6.48 | .851 | 3 | 13 |
16 | What is pancreatic cancer? | 6.48 | 1.045 | 1 | 2 |
17 | If the treatment is successful, will the cancer come back? | 6.48 | 1.130 | 0 | 1 |
18 | What can I do to slow down the disease process? | 6.47 | .667 | 0 | 4 |
19 | Why is there such a waiting time before starting the treatment?c | 6.45 | .888 | 2 | 14 |
20 | If my treatment has no effect, what are my options then? | 6.45 | .959 | 1 | 6 |
21 | How long does the treatment last?b | 6.44 | .693 | 1 | 1 |
22 | If my pancreatic cancer is not treated, how long will I live? | 6.44 | 1.141 | 2 | 4 |
23 | What is usually the natural course of pancreatic cancer?b | 6.41 | 1.187 | 2 | 0 |
24 | Who carries out the treatment? | 6.39 | .784 | 2 | 1 |
25 | Why is my diagnosis still uncertain? | 6.37 | .809 | 2 | 15 |
26 | What are the long term effects of the treatment? | 6.33 | 1.212 | 0 | 1 |
27 | If my diagnosis is still uncertain, how soon after surgery will it be certain? | 6.31 | 1.087 | 1 | 20 |
28 | What is the pancreas? | 6.30 | .795 | 0 | 3 |
29 | Do I need to be admitted to the hospital for treatment? | 6.28 | .751 | 2 | 5 |
30 | Can I make the decision myself if I do not want to live further? | 6.28 | 1.255 | 5 | 3 |
31 | Shall I see my doctor during treatment? | 6.26 | .875 | 1 | 3 |
32 | Are there other options for treatment that have not been mentioned? | 6.26 | 1.197 | 1 | 3 |
33 | Why are the tumour and possible metastases not monitored during treatment? | 6.21 | .927 | 3 | 11 |
34 | If my pancreatic cancer is not treated, will it spread? | 6.21 | 1.373 | 4 | 14 |
35 | Can I still eat everything? | 6.20 | .786 | 1 | 1 |
36 | Where is the pancreas located? | 6.19 | .833 | 2 | 3 |
37 | What particular qualifications does my doctor have to treat pancreatic cancer? | 6.18 | 1.352 | 2 | 1 |
38 | Will I be in pain because of my pancreatic cancer? | 6.15 | 1.095 | 1 | 0 |
39 | How long will it take until I will feel better again, after treatment? | 6.13 | 1.147 | 0 | 1 |
40 | Where can I find a diet specifically aimed at pancreatic cancer? | 6.11 | 1.280 | 0 | 3 |
41 | What can I do if I am tired? | 6.07 | 1.063 | 0 | 1 |
42 | Where are the best doctors in the field of pancreatic cancer? | 6.02 | 1.475 | 3 | 2 |
43 | Will the pancreatic cancer make me tired? | 5.98 | 1.327 | 0 | 0 |
44 | How many patients with pancreatic cancer has my doctor treated? | 5.98 | 1.488 | 3 | 1 |
45 | How many patients are cured with treatment? | 5.98 | 1.592 | 1 | 2 |
46 | Why would I choose to have treatment, if I cannot be cured anymore? | 5.97 | 1.449 | 3 | 13 |
47 | Should I actively search for the best possible medical care? | 5.95 | 1.393 | 3 | 6 |
48 | Could it be harmful that radiation goes through other organs as well? | 5.93 | 1.412 | 1 | 17 |
49 | In how many patients does the treatment not lead to improvement? | 5.93 | 1.555 | 2 | 4 |
50 | If I don’t want treatment now, can I still get treated when the cancer gets worse? | 5.91 | 1.111 | 2 | 11 |
51 | For how long do I have pancreatic cancer? | 5.91 | 1.461 | 3 | 1 |
52 | Are my children at risk of developing pancreatic cancer? | 5.89 | 1.624 | 2 | 7 |
53 | If my pancreatic cancer is not treated, shall I be able to continue taking care of myself? | 5.86 | 1.113 | 2 | 17 |
54 | If I decide to postpone treatment, is there still a chance that I will be cured? | 5.77 | 1.633 | 2 | 14 |
55 | If I decide to postpone treatment, shall there be treatment later on that can help me? | 5.73 | 1.461 | 3 | 14 |
56 | Why is it that my pancreatic cancer was not diagnosed earlier? | 5.69 | 1.689 | 3 | 2 |
57 | Can I continue to take care of myself during the treatment? | 5.67 | 1.443 | 0 | 4 |
58 | What can I do about my emotional problems? | 5.66 | 1.132 | 2 | 3 |
59 | Where can my caregivers find (psychological) help? | 5.62 | 1.139 | 2 | 7 |
60 | If my diagnosis is still uncertain, what are my chances that I have surgery which turns out to be unnecessary? | 5.55 | 1.731 | 1 | 25 |
61 | What would you do in my circumstances, doctor? | 5.51 | 1.956 | 1 | 3 |
62 | If my pancreatic cancer is not treated, will my social life be affected? | 5.50 | 1.482 | 1 | 12 |
63 | How often does my type of pancreatic cancer occur? | 5.47 | 1.316 | 0 | 0 |
64 | If I refuse treatment, will my doctor continue to take care of me? | 5.47 | 1.722 | 3 | 12 |
65 | Do I differ from the average patient with pancreatic cancer? | 5.45 | 2.051 | 2 | 3 |
66 | Will the treatment affect my social life? | 5.36 | 1.708 | 0 | 5 |
67 | Where can I get a good second opinion? | 5.33 | 1.639 | 1 | 6 |
68 | What If I am no longer around? | 5.30 | 1.762 | 5 | 5 |
69 | How do I tell my children and/or grandchildren that I am sick? | 5.29 | 1.601 | 1 | 11 |
70 | Am I allowed to refuse treatment? | 5.26 | 1.738 | 2 | 9 |
71 | Are there complementary treatments (for example acupuncture) that could support my treatment? | 5.23 | 1.699 | 3 | 9 |
72 | Can I ask for a second opinion? | 5.20 | 1.636 | 1 | 6 |
73 | How many patients like me have decided to have this treatment? | 5.05 | 1.962 | 2 | 3 |
74 | Will the treatment make me lose my hair? | 4.92 | 2.033 | 0 | 10 |
75 | Can I still drive while I get treatment? | 4.87 | 1.866 | 0 | 8 |
76 | Can I still travel while I get treatment? | 4.85 | 1.791 | 1 | 6 |
77 | Did I get my pancreatic cancer because of my way of life? | 4.84 | 1.914 | 1 | 3 |
78 | Why does this happen to me? | 4.67 | 2.149 | 3 | 2 |
79 | Can I talk to someone who has taken the treatment already? | 4.65 | 1.837 | 3 | 1 |
80 | If my pancreatic cancer is not treated, shall I be able to continue working as I am used to? | 4.54 | 2.085 | 1 | 22 |
81 | Can I continue working as I am used to, during treatment? | 4.26 | 2.036 | 2 | 7 |
82 | Where can I find help for practical issues, such as delegating my bank matters? | 3.55 | 2.010 | 1 | 17 |
83 | Can I continue drinking alcohol? | 3.43 | 2.150 | 2 | 16 |
84 | Can I continue smoking? | 2.93 | 2.463 | 2 | 30 |