Background
Methods
Study design
Qualitative study
Data analysis
Quantitative study
Data analysis
Results
Patient characteristics | Number of patients (n = 11) Interviews | Number of patients (N = 76) Survey | |
---|---|---|---|
% (n) | % (n) | ||
Age | <50 | 9 (1) | 0 (0) |
50-64 | 18 (2) | 17 (13) | |
65-74 | 27 (3) | 33 (25) | |
≥75 | 46 (5) | 46 (35) | |
Missing | 0 (0) | 4 (3) | |
Sex | Male | 46 (5) | 62 (47) |
Female | 54 (6) | 36 (27) | |
Missing | 0 (0) | 3 (2) | |
Educationa
| Low | 36 (4) | 37 (28) |
Medium | 27 (3) | 38 (29) | |
High | 36 (4) | 24 (18) | |
Missing | 0 (0) | 1 (1) | |
Health Literacyb
| Low | 27 (3) | 54 (71) |
High | 73 (8) | 21 (28) | |
Missing | 0 (0) | 1 (1) | |
Treatment | Surgery | 45 (5) | 22 (17) |
SABR | 55 (6) | 74 (56) | |
Missing | 0 (0) | 4 (1) |
Qualitative study
Information collection process | |
Theme 1: Complete and understandable information
“I think it is important that a clinician is open to a patient. That they do not refrain from providing information. Nowadays, clinicians pay more attention to this than in the past. But clinicians are different in that. I’m lucky because my surgeon explains everything very thoroughly and in a straightforward way. I appreciate that ”. F, 69y
“I think it is important that they < e.g. clinicians > explain everything in an understandable way. No fancy Latin names that patients do not understand and that results in saying to yourself when you are out of the office: I have cancer, but I don’t know what they are going to do. For me it is important that I understand everything”. M, 66y
| |
Theme 2: Active role of patients in information gathering
“In advance, I made a list with questions I wanted to ask the clinician. Are there alternatives, is it an option to do nothing? I wrote 5 or 6 issues down. I came well-prepared” F, 66y
“I read a lot on the Internet in that time period and I am pleased with that information and knowledge because I can actively take part in the conversation with the clinician” F, 66y
| |
Theme 3: Hearing preference of the clinician
“Initially, they scheduled me for SABR, because of the fact that there was little tissue damage. During the second consultation with the clinician, I asked him, what would you advice your own father? Then he said: surgery”. M, 62y
“And then my oncologist said to me, it is your decision, what do you want? Then I said, what do you recommend?”. M, 80y
| |
Decision making process | |
Theme 4: Conduct of professionals
“Many of the consultations with a clinician are technical. And they forget to feel compassion for a patient. There is no time to do that. When a clinician is very kind, that is 20 % of your recovery. Only being nice. And when he is disrespectful , you decline with 20 %”. F, 66y
“In my opinion, it is important that a clinician is able to communicate with people, able to talk and to listen. And when you are not able to do that, you are a worthless clinician”. M, 78y
| |
Theme 5: Opportunity to express own opinion
“The clinician wanted to operate immediately. I said, I want to think about that first. There’s also the option of radiotherapy” F, 69y
“They < clinicians > wanted to operate me. I felt that my body wasn’t ready for another operation. Then I said that I wanted a second opinion. I wanted that very badly” F, 63y
| |
Theme 6: Role of family members
“When it was clear what SABR was about and that it was 1 to 5 times, I clearly mentioned to my father, you can do that” Daughter of M, 78y
“My husband joins me. We complement each other. We do all these things together. When there is something wrong with him I go along and when there is something wrong with myself, he goes along”. F, 80y
|
Quantitative study
Qualitative themes | Quantitative items |
---|---|
Do you think it is important for your decision that … | |
Theme 1: Complete and understandable information | … you receive information from your clinician about all possible treatment options? … you receive information from your clinician about your disease? …your clinician gives you information about your disease that is understandable? |
Theme 2: Active role of patients in information gathering | … you give your clinician information about how you experience your disease? … you search for information (for example on the Internet) about possible treatment options? … you ask the questions you have? |
Theme 3: Hearing preference of the clinician | … you follow your clinician in the proposed treatment advice? … you decide together with your clinician about your treatment? … your clinician gives you advice about the best treatment option for you? |
Theme 4: Conduct of professionals |
… your clinician takes you seriously? … your clinician takes time for you? … your clinician is friendly? … your clinician asks you about your situation at home? … your clinician provides the opportunity to ask questions? … your clinician takes your treatment preferences seriously? … you receive time from your clinician to think about what treatment you want to have? |
Theme 5: Opportunity to express own opinion | … your clinician asks you what you think of the different treatment options? … your clinician lets you decide what treatment you want to undergo? … the treatment that best fits for you is chosen? |
Theme 6: Role of family members | … you eventually decide with your family what treatment you want to have? |
Factor analysis
Factor loading | ITCa
| α if item deleted | |
---|---|---|---|
Do you think it is important for your decision that… | |||
Construct 1: Guidance by the clinician (α = .741) | |||
… your clinician gives you advice about the best treatment option for you? | .850 | .566 | .656 |
… the treatment that best fits for you is chosen? | .562 | .590 | .646 |
… you ask the questions you have? | .528 | .572 | .669 |
Construct 2: Conduct of clinician (α = .774) | |||
… your clinician takes you seriously? | .866 | .677 | .683 |
… your clinician takes time for you? | .828 | .723 | .651 |
… your clinician takes your treatment preferences seriously? | .591 | .479 | .800 |
… your clinician provides opportunity to ask questions? | .444 | .514 | .751 |
Construct 3: Preparation for treatment decision making (α = .864) | |||
… you receive information from your clinician about all possible treatment options? | .847 | .741 | .827 |
… you receive information from your clinician about your disease? | .832 | .584 | .856 |
… you follow your clinician in the proposed treatment advice? | .781 | .767 | .823 |
… you decide together with your clinician about your treatment? | .761 | .675 | .839 |
… your clinician asks you what you think of the different treatment options? | .594 | .643 | .849 |
… your clinician gives you information about your disease that is understandable? | .539 | .611 | .852 |
Construct 4: Active role of patient in treatment decision making (α = .782) | |||
… you receive time from your clinician to think about what treatment you want to have? | .720 | .706 | .697 |
… you search for information (for example on the Internet) about possible treatment options? | .695 | .398 | .798 |
… you eventually decide with your family what treatment you want to have? | .665 | .631 | .715 |
… your clinician lets you decide what treatment you want to undergo? | .522 | .539 | .747 |
… your clinician asks you about your situation at home? | .494 | .551 | .744 |
M (SD) | |
---|---|
Do you think it is important for your decision that… | |
Construct 1: Guidance by the clinician (α=,741) | 3.61 (.44) |
… your clinician gives you advice about the best treatment option for you? | 3.68 |
… the treatment that best fits for you is chosen? | 3.71 |
… you ask the questions you have? | 3.45 |
Construct 2: Conduct of clinician (α=,774) | 3.53 (.46) |
… your clinician takes you seriously? | 3.68 |
… your clinician takes time for you? | 3.64 |
… your clinician takes your treatment preferences seriously? | 3.29 |
… your clinician gives space to ask questions? | 3.51 |
Construct 3: Preparation for treatment decision making (α=,864) | 3.46 (.49) |
… you receive information from your clinician about all possible treatment options? | 3.51 |
… you receive information from your clinician about your disease? | 3.66 |
… you follow your clinician in the proposed treatment advice? | 3.30 |
…you decide together with your clinician about your treatment? | 3.51 |
… your clinician asks you what you think of the different treatment options? | 3.14 |
…your clinician gives you information about your disease that is understandable? | 3.63 |
Construct 4: Active role of patient in treatment decision making (α=,782) | 2.75 (.71) |
… you receive time from your clinician to think about what treatment you want to have? | 3.05 |
… you search for information (for example on the Internet) about possible treatment options? | 2.14 |
… you eventually decide with your family what treatment you want to have? | 2.78 |
… your clinician let you decide what treatment you want to undergo? | 2.88 |
… your clinician asks you about your situation at home? | 2.91 |
Other items: | |
… your clinician is friendly? | 3.39 |
…you give your clinician information about how you experience your disease? | 3.28 |