| Literature DB >> 32738027 |
Anja Lindig1,2, Pola Hahlweg1,2, Wiebke Frerichs1,2, Cheyenne Topf1, Martin Reemts1, Isabelle Scholl1,2.
Abstract
BACKGROUND: Patients are often not actively engaged in medical encounters. Short interventions like Ask 3 Questions (Ask3Q) can increase patient participation in decision-making. Up to now, Ask3Q was not available in German.Entities:
Keywords: patient empowerment; patient participation; qualitative methods; question prompt list; shared decision-making
Year: 2020 PMID: 32738027 PMCID: PMC7696208 DOI: 10.1111/hex.13114
Source DB: PubMed Journal: Health Expect ISSN: 1369-6513 Impact factor: 3.377
Demographic and clinical data of participating patients of cognitive interviews (n = 10) and focus groups (n = 24) (SD = standard deviation)
|
Phase 1: Patients of cognitive interviews (n = 10) |
Phase 2: Patients of focus groups (n = 24) | |
|---|---|---|
| n (%) | n (%) | |
| Age (in years) | ||
| Mean (SD) | 49.0 (11.3) | 60.7 (11.8) |
| Range | 31‐64 | 29‐74 |
| Gender | ||
| Female | 5 (50.0) | 13 (54.2) |
| Male | 5 (50.0) | 11 (45.8) |
| Mother tongue | ||
| German | 9 (90.0) | 23 (95.8) |
| Other | 1 (10.0) | 1 (4.2) |
| Education | ||
| Low | 2 (20.0) | 3 (12.5) |
| Medium | 3 (30.0) | 6 (25.0) |
| High | 5 (50.0) | 15 (62.5) |
| Current Profession | ||
| Employed | 5 (50.0) | 11 (45.8) |
| Retired | 3 (30.0) | 11 (45.8) |
| Homemaker | 1 (10.0) | 1 (4.2) |
| Student/Trainee | 1 (10.0) | 0 (0.0) |
| Sick leave | 0 (0.0) | 2 (8.3) |
| Cancer entity | ||
| Leukaemia/Lymphoma/Myeloma | 3 (30.0) | 7 (29.2) |
| Prostate cancer | 0 (0.0) | 5 (20.8) |
| Breast cancer | 2 (20.0) | 4 (16.7) |
| Bladder cancer | 0 (0.0) | 2 (8.3) |
| GIST | 0 (0.0) | 2 (8.3) |
| Testicular cancer | 0 (0.0) | 2 (8.3) |
| Ovarian cancer | 2 (20.0) | 1 (4.2) |
| Colorectal cancer | 1 (10.0) | 0 (0.0) |
| Sarcoma | 1 (10.0) | 1 (4.2) |
| Squamous cell carcinoma | 1 (10.0) | 0 (0.0) |
| Years of disease | ||
| Mean (SD) | 4.8 (3.55) | 4.99 (4.8) |
| Range in years | 1‐11 | 0.42‐19.25 |
| Health literacy | ||
| Inadequate | 1 (10.0) | 7 (29.2) |
| Moderate | 4 (40.0) | 10 (41.7) |
| Adequate | 5 (50.0) | 7 (29.2) |
low = <10 school years, medium = 10‐13 school years, high = >13 school years.
more than one answer possible.
gastrointestinal stromal tumour.
health literacy was assessed by HLS‐EU‐Q16, according to the sum score, participants can be divided into three groups: 0 to 8 = inadequate health literacy, 9 to 12 = moderate health literacy, 13 to 16 = adequate health literacy
Demographic data of participating healthcare professionals (HCPs) of focus groups and individual interviews with n = 15 nurses and n = 6 physicians
| Phase 2: HCPs of focus groups and interviews (n = 21) | ||
|---|---|---|
| Physicians (n = 6) |
Nurses (n = 15) | |
| n (%) | n (%) | |
| Age | ||
| <30 years | 1 (16.7) | 0 (0.0) |
| 31‐40 years | 0 (0.0) | 3 (20.0) |
| 41‐50 years | 3 (50.0) | 5 (33.3) |
| >50 years | 2 (33.3) | 7 (46.7) |
| Gender | ||
| Female | 4 (66.7) | 13 (86.7) |
| Male | 2 (33.3) | 2 (13.3) |
| Profession | ||
| Junior hospital‐based physician | 2 (33.3) | / |
| Senior hospital‐based physician | 2 (33.3) | / |
| Physician in outpatient practice | 2 (33.3) | / |
| Work experience | ||
| <5 years | 1 (16.7) | 0 (0.0) |
| 11‐20 years | 2 (33.3) | 3 (20.0) |
| >20 years | 3 (50.0) | 12 (80.0) |
Final coding scheme for focus groups and interviews
| A: Codes for the main section “Acceptability of Ask 3 Questions” | ||
|---|---|---|
| A | Acceptability | |
| A1 | Positive evaluation of Ask 3 Questions | ‘So, I think this one ‐ I think this is great. So, someone who never had such a diagnosis, exactly needs these three things. I think this is very good’. |
| A2 | Function of Ask 3 Questions | |
| A2.1 | Advantages for patients | |
| A2.1.1 | Encourages patients to actively participate in decision‐making/ actively ask questions |
‘These questions promote self‐confidence of the patient’. ‘But certainly, there are patients, who are still scared and to encourage them with these materials to think about that they have the possibility to ask questions, I like that’. |
| A2.1.2 | Guideline for patients in a consultation | ‘So I could imagine very well that the patient gets handed out this, thinks […] about it and can, during the doctor's consultation, during the discharge consultation or even at the beginning of the treatment, simply put it together again and then concretely work it off and read his questions and so on’. |
| A2.1.3 | For preparation and post processing of the consultation by the patient | ‘I really like that, especially on the backside with the possibility to take notes. Even if it is not necessarily the answer to these questions, but maybe to some own questions. I think this could animate patients’. |
| A2.2 | Advantages for healthcare professionals | |
| A2.2.1 | Guideline for the physician in a consultation | ‘Basically, it would be very positive, if the doctor would hand out such things, because he would be guided himself, so to say. These are common questions, which means that he needs to reflect again “did I address it” or rather “did I give the patient the chance,” so it is kind of a control for the doctor’. |
| A2.3 | Advantage for the patient‐healthcare professional interaction | |
| A2.3.1 | Indicates patient‐centredness | ‘If it [Ask 3 Questions] comes from the physician […] then you can already say that the doctor takes care of his patients’. |
| A2.3.2 | Helps to find the best treatment options | ‘And that is what I had in mind when I read the invitation that this physician‐patient patient‐physician consultation would finally lead to better well‐being for the patient. That he will not be treated according to the method which is cheapest, tawdriest, fastest or something, but that the optimal method will be found. And of course this could only be found if I use what is written there [on the postcard]’. |
| A2.3.3 | Fosters trust into the physician/ into the practice | ‘I believe that this also creates trust, if such a poster would be now hanging in the waiting room of a practice at our place, patients would immediately have the feeling: ‘Oh, they want to ‐ they promote my own self‐sufficient ‐ my own self‐sufficient question‐asking behavior.” And I like that’. |
| A3 | Characteristics of Ask 3 Questions: Versatile usability | |
| A3.1 | Can be used for different diseases/ in different stages of disease | ‘And I also like that it is kept more general, that you don't need it just for one thing, or ‐ that you theoretically could take this card with you to any physicians consultation’. |
| A3.2 | Could also be used by relatives | ‘And then also for the relatives, when they [the patients] are laying intubated on the intensive care unit, when everything went wrong, then it is just as important for the relatives’. |
| A4 | Characteristics of Ask 3 Questions: Wording and phrases | |
| A4.1 | Statements regarding the phrases in general | ‘I think the questions are nicely phrased. Also not too long, so that everyone can actually read them when passing by, because you don't always have that much time as a patient […]’. |
| A4.2 | Postcard is not detailed enough; important content is missing |
‘I would like to have more information here and I know, for example with an "e.g." and three dots at the end or so, that you just initiate things again’. ‘[This postcard] is a starting point, when a decision has to be made. But maybe a second postcard, with questions, what can I do to positively influence the chemo therapy’. ‘I already have the first question. The diagnosis, “What is my disease?”, the medical information, and then actually the second [question] will follow, “What are my options?”. That would be the order’. |
| A4.3 | Statements regarding specific phrases | |
| A4.3.1 | Statements regarding the word ‘important’ (in the Ask 3 Questions title) | ‘What bothers me about this card is the word "important". I think it is stupid. So, when I see such a card, or see a poster, I immediately ask myself: “Are my questions actually important?” And I immediately hold off myself’. |
| A4.3.2 | Statements regarding "three questions“ (in the Ask 3 Questions title) | ‘Okay. It could of course be understood as “I am only allowed to ask three questions”’. |
| A4.3.3 | Statements regarding „watch and wait“ (question 1) |
‘What I like very much is […] the phrase ‘inclusive watch and wait’, I think this is a very, very important supplement’. ‘This is tendentious and that is not right. Well, that is not right and I also don't believe that physicians would like, if it is written like that, because that is already the answer ‐ so yes. It feels like that’. |
| A4.3.4 | Statements about question 3 |
‘The young woman, who is a single mother with three children at home and cannot concentrate on her disease at all, because she doesn't know how to manage it, right? So there ‐ the third point, I think, is actually always meaningful’. ‘But when I ask the physician: “How do I get support to help me make a decision that is right for me?”, the physician would say: “Yes, I, as your doctor, am the support”. That’s why you are here.’ |
| A4.4 | Suggestions to improve specific phrases |
‘Why, I ask myself, why is there not written “Where do I get support?”’ ‘Every patient has to know that he is the one who has to decide what is happening to him. A physician just makes a suggestion. But you don´t have to follow. So, you might say: “Ask three important questions. You are the manager of your own health”’. |
| A4 | Characteristics of Ask 3 Questions: Design | |
| A4.1 | Negative comments | ‘When I am […] looking for help, I don´t want to do interpretations. Then, I want to get help’. |
| A4.2 | Positive comments |
‘Also, nice this design, so the symbols on the top, symbolism. I like that’. ‘I think this thing [the postcard/poster] is working well because it attracts attention with the picture’. |
| A4.3 | Suggestions for improvement | ‘Something I could give you for the layout or as a suggestion, would be the questions and below a larger space for writing, maybe also, that older people have more space, not always turn around [the postcard], drift away from the topic, so there is more structure, to have blank lines directly under the questions’. |
Figure 1Summarized results of qualitative evaluation of acceptability and feasibility of Ask 3 Questions