Shared decision-making: the perspectives of young adults with type 1 diabetes mellitus

Figures & data

Table 1 Demographic characteristics of 150 survey participants

Age, years
18–24	46 (30.67%)
25–29	52 (34.67%)
30–35	52 (34.67%)
Sex
Male	30 (20.0%)
Female	120 (80.0%)
Australian state or territory
Queensland	29 (19.33%)
New South Wales	43 (28.67%)
Victoria	41 (27.33%)
Tasmania	8 (5.33%)
South Australia	10 (6.67%)
Western Australia	14 (9.33%)
Australian Capital Territory	4 (2.67%)
Northern Territory	1 (0.67%)
Residential area
Major city	102 (68.0%)
Regional city	31 (20.67%)
Rural area	14 (9.33%)
Remote area	3 (2.0%)
Level of education
Secondary	32 (21.33%)
Tertiary	79 (52.67%)
Post-graduate	39 (26.0%)
Occupation
Full time student	17 (11.33%)
Primarily part time student	3 (2.0%)
Working full time	96 (64.0%)
Primarily working part time	15 (10.0%)
Currently not working	8 (5.33%)
Other	11 (7.33%)
Private health insurance
Yes	126 (84.0%)
No	24 (16.0%)

Table 2 Clinical characteristics of 150 survey participants

Duration of diabetes, years
<5	38 (25.3%)
5–10	30 (20.0%)
11–15	23 (15.3%)
16–20	26 (17.3%)
>20	33 (22.0%)
HbA1c
Don’t know	6 (4.0%)
<7%	51 (34.0%)
7.1%–7.5%	30 (20.0%)
7.6%–8.0%	18 (12.0%)
8.1%–8.5%	21 (14.0%)
8.6%–9.0%	9 (6.0%)
>9.0%	15 (10.0%)
HbA1c performed in the last 6 months
Yes	135 (90.0%)
No	15 (10.0%)
Body mass index (kg/m^2)
Don’t know	34 (22.7%)
<19	5 (3.3%)
19 to <25	67 (44.7%)
25–30	33 (22.0%)
>30	11 (7.3%)

Abbreviation: HbA_1c, glycosyated hemoglobin.

Table 3 Evaluation of clinician engagement in shared decision-making by participants currently consulting clinician groups

Responses to survey items	Clinician groups
	Endocrinologists n=135	Diabetes educators n=89	Dieticians n=50	General practitioners n=56	Group average n=4
1. My (clinician) enquires about how I manage my diabetes
Agree	82.2%	94.4%	84.0%	87.5%	87.0%
Neutral	4.5%	3.4%	2.0%	8.9%	4.7%
Disagree	13.3%	2.2%	14.0%	3.6%	8.3%
2. My (clinician) listens to my opinion about my diabetes management
Agree	76.3%	93.3%	80.0%	82.2%	82.9%
Neutral	8.1%	2.2%	10.0%	8.9%	7.3%
Disagree	15.6%	4.5%	10.0%	8.9%	9.7%
3. My (clinician) is supportive of my diabetes management
Agree	74.1%	89.9%	80.0%	85.7%	82.4%
Neutral	9.6%	4.5%	8.0%	7.2%	7.3%
Disagree	16.3%	5.6%	12.0%	7.1%	10.3%
4. My (clinician) suggests ways in which I can improve my self-management
Agree	80.7%	93.2%	90.0%	66.1%	82.5%
Neutral	6.7%	3.4%	2.0%	10.6%	5.7%
Disagree	12.6%	3.4%	8.0%	23.3%	11.8%
5. The advice of the (clinician) can be understood
Agree	87.4%	96.6%	88.0%	85.7%	89.4%
Neutral	7.4%	1.1%	4.0%	10.7%	5.8%
Disagree	5.2%	2.3%	8.0%	3.6%	4.7%
6. The advice of the (clinician) can be trusted
Agree	85.2%	98.9%	92.0%	82.2%	89.5%
Neutral	6.7%	0	4.0%	8.9%	4.9%
Disagree	8.1%	1.1%	4.0%	8.9%	5.5%
7. The advice of the (clinician) is consistent with other members of the diabetes team
Agree	75.6%	86.5%	78.0%	67.9%	77.0%
Neutral	17.0%	7.9%	14.0%	21.4%	15.1%
Disagree	7.4%	5.6%	8.0%	10.7%	7.9%
Average response to survey items
Agree	80.2%	93.3%	84.6%	79.6%	84.3%
Neutral	9.8%	3.2%	6.3%	11.0%	7.4%
Disagree	10.0%	3.5%	9.1%	9.4%	8.3%

Table 4 Thematic analysis of focus group results

Corresponding table	Overarching theme	Subtheme
5	Clinicians’ behavior to acknowledge patients’ expertise	Whether the clinician enquired about self-management Whether the clinician listened to the patient’s opinion about self-management
6	Whether clinicians’ behavior was supportive and encouraged patients’ autonomy	Supportive clinician behavior Unsupportive clinician behavior
7	Whether clinicians provided advice that patients could utilize to improve self-management	Capacity of participant to be able to trust the clinician’s advice Consistency of the advice provided across the health care team Whether the clinician suggested new technologies for self-management

Table 5 Participant quotations as to whether clinicians’ behavior acknowledged patient expertise

Quotation number	Quotation
Whether the clinician enquired about self-management
1	“They (the diabetes educators) really do. They will actually ask me what I’ve done to try and treat it and when I say this is what I think I will do they will handle that OK.” (Female patient aged 32 years, T1DM duration 25 years)
2	“He (the endocrinologist) will listen to me and then he will say this is what I think you need to do to get your numbers down. Then he will say to me; what are you doing to get your numbers down?” (Male patient aged 25 years, T1DM duration 6 years)
3	“My endocrinologist encourages me to see the educators as much as possible. His attitude and it’s my attitude too, is that educators are more on the lifestyle and he looks at the numbers. He does the medical side of things and whenever it is a lifestyle issue, he deflects the question back to the educator. I’m actually comfortable with that; I think it is a good thing.” (Male patient aged 32 years, T1DM duration 9 years)
4	“From my perspective, at the end of the day the endocrinologist wants you to get your HbA1c as good as possible so you don’t get complications. I like that. I do have more time to talk with my educator about my diet and things. But knowing the fact that the endocrinologist just focuses on your health: to make sure that you don’t have high HbA1c s, I find that a secure and safe thing.” (Female patient aged 23 years, T1DM duration 11 years)
5	“I guess he is very clinical and very results focused and you are out of there in 10 minutes.” (Female patient aged 32 years, T1DM duration 25 years)
6	“I only see my endocrinologist every twelve months. He doesn’t ask me to talk for very long. It’s a quick thing based on all the numbers, so we don’t have a lot of time to sit and chat.” (Female patient aged 31 years, T1DM 21 years)
7	“If you’re not careful you can lose your independence and become disempowered very easily. The medical profession can have quite a negative impact on your life.” (Female patient aged 32 years, T1DM duration 25 years)
8	“They said you have to check with your endocrinologist about changing your insulin levels. I’m the one who makes the decisions. I feel I am quite autonomous. But they still wanted me to do so because they said it was protocol.” (Female patient aged 27 years, T1DM duration 16 years)
9	“I have a discussion. It’s a bit more of an open table. I don’t pay someone to tell me what I’m doing wrong … I wouldn’t go if that were the case.” (Male patient aged 25 years, T1DM duration 6 years)
10	“I recently changed endocrinologists, because (the previous endocrinologist) was very blasé. I’d only be there for about five minutes; ten minutes maximum. I had got used to it. But my boyfriend came with me once and he said that I needed someone who talked with me more about what I was doing. (The new endocrinologist) is really good. I was with him for an hour. We really went through a lot and I was very happy. So a big change!” (Female patient aged 27 years, T1DM duration 16 years)
Whether the clinician listened to the patient’s opinion about self-management
11	“I don’t know if he’s a good or a bad endocrinologist compared to anyone else but he seems good because he’ll listen to me.” (Male patient aged 25 years, T1DM duration 6 years)
12	“From what I have experienced so far I have not had any one fantastic yet. The (endocrinologist) that I have at the moment, it is like talking to a cardboard box: there is nothing there. She has the knowledge but she won’t listen.” (Female patient aged 33 years, T1DM duration 13 years)
13	“I did see (an endocrinologist) but she wasn’t someone you could talk to. So I haven’t seen anyone since.” (Female patient aged 30 years, T1DM 12 years)
14	“I think my body was reacting differently to what she suggested … It’s just those sorts of things where she obviously was just saying what her medical wad of documentation told her. Textbook stuff!” (Female patient aged 23 years, T1DM duration 13 years)
15	“The diabetes educator, it is like they have been told these rules that they seem to pass on. … It is like they think it is really simple. … For example she said if you’re hypo you need to eat two exchanges of low GI stuff after you’ve eaten an exchange of this. And I said: ‘No I don’t; then I’m going to be too high.’ It is always the textbook answer that is given.” (Male patient aged 28 years, T1DM duration 3 years)
16	“They’re like; ‘We recommend you should definitely do this.’ And I’m like; ‘Oh I found it hasn’t worked in the past.’ But I give it a go for a few days and I change the insulin. But then I just get high sugars and I get annoyed so I just change it back again.” (Female patient aged 33 years, T1DM duration 13 years)
17	“My body was reacting differently to what she (the endocrinologist) expected. I was exercising regularly … I was on Levemir … she told me not to reduce my long acting for exercise. But I said ‘No! I know what I am like.’ But I reduced it slightly and then just kept getting hypos until I dramatically reduced it. So those sorts of things where she obviously was applying her medical documentation rather than listening to me.” (Female patient aged 23 years, T1DM duration 13 years)
18	“Then they told me to split my Lantus but I didn’t want to add another needle to my day so I just adjusted all my insulins myself by trial and error.” (Female patient aged 21 years, T1DM duration 17 years)
19	“The endocrinologist told me how much to inject when I had a meal. But he didn’t consider that I had a laboring job. I had a really bad hypo one day because I injected what he told me to but it was more than I needed for the physical work I was doing. It hit me pretty quickly that I had to be responsible for managing this. I could not rely on the endocrinologists and nurses because only I could work out how much exercise was involved in that day’s work.” (Male patient aged 25 years, T1DM duration 6 years)

Abbreviation: T1DM, type 1 diabetes mellitus.

Table 6 Participant quotations about whether clinicians’ behavior was supportive and encouraged patients’ autonomy

Quotation number	Quotation
Supportive clinician behavior
20	“(Diabetes clinic) is supportive as they treat you as a friend as soon as you go in there. That was a big thing for me.” (Female patient aged 24 years, T1DM duration 2 years)
21	“My endocrinologist, I found him myself. I needed to be able to relate to my doctor. I have developed a personal relationship with him. I would probably enjoy hanging out with him, outside of the office.” (Male patient aged 22 years, T1DM duration 16 years)
22	“Because I can call them up at any time and ask questions and anything that I ask they do not make me feel stupid.” (Female patient aged 20 years, T1DM 3 years)
23	“When I express my worries she is very supportive, very understanding, always available, very compassionate, and genuinely sincere.” (Female patient aged 32 years, T1DM duration 2 years)
24	“I see (…) and she absolutely doesn’t tell me what I should be doing but gives options.” (Female patient aged 27 years, T1DM 16 years)
25	“My endocrinologist is really good. She gives me heaps of options and she’ll ring me and I can ring her.” (Female patient aged 32 years, T1DM duration 25 years)
26	“Instead of telling them they were idiots and should wake up to themselves she was like: ‘What is the first small step you can take to better management?’” (Female patient aged 27 years, T1DM duration 16 years)
27	“My endocrinologist … if she thinks a course of action is a good thing, she’ll tell me about it and then say basically … ‘Are you going to be able to give it a go? Email me when you’re having any issues.’ Things like that I find incredibly helpful.” (Female patient aged 33 years, T1DM duration 25 years)
28	“She spent ages on the phone with me … having the capacity to call someone or email them directly is such a relief and I feel good about that.” (Female patient aged 33 years, T1DM duration 6 years)
29	“She knows that I work hard at trying to control my diabetes.” (Female patient aged 27 years, T1DM duration 16 years)
30	“When I do things, which she thinks is a positive step, I get lots of affirmations.” (Female patient aged 32 years, T1DM duration 25 years)
Unsupportive clinician behavior
31	“I had to very quickly learn to state my case. I found that if I was feeling … blamed for high sugar levels when I’d done everything right, it was like, I don’t want to see you anymore because I need someone who’s going to help me manage this for the rest of my life. That was something I decided quite early on.” (Female patient aged 33 years, T1DM duration 25 years)
32	“I recently made a decision not to see an endocrinologist anymore unless I have to. I go and see an educator because instead of making me feel like everything’s just numbers and I’m being judged on everything, she gives me another side to it.” (Female patient aged 21 years, T1DM duration 17 years)
33	“It is really helpful having a person understand my emotions and how I feel … but the educators and endocrinologists are quite removed from it all.” (Female patient aged 31 years, T1DM duration 21 years)
34	“The endocrinologist that I have at the moment, it’s like talking to a cardboard box … She does not have feelings for what you’re going through.” (Female patient aged 33 years, T1DM duration 13 years)
35	“In the hands of the specialist who said lose weight, get your sugar levels down; I did not know what to do. I was already not eating in an attempt to do that.” (Female patient aged 33 years, T1DM duration 25 years)
36	“I can’t even make an appointment to see a dietician because of too many years of being told you should not be eating that … I’m sick of being told what not to do. I need to know what I can do.” (Female patient aged 33 years, T1DM duration 25 years)
37	“It’s too much academic. Not enough reality or world experience or listening to diabetics instead of telling them.” (Male patient aged 25 years, T1DM duration 6 years)
38	“I feel my visits to (the endocrinologist) are redundant because I know exactly how the conversation is going to go. I would prefer to just pick up the phone and ask them what my HbA1c is and then move on because quite often that is all I get out of it.” (Female patient aged 27 years, T1DM duration 16 years)
39	“I don’t consult with a GP because I would go in and know exactly the questions they would ask because it is like they have a script: What sort of insulin are you on, how many times a day do you take the insulin, how are your feet?” (Female patient aged 32 years, T1DM duration 25 years)

Abbreviations: GP, general practitioner; T1DM, type 1 diabetes mellitus.

Table 7 Participant quotations about whether clinicians provided advice that patients could utilize to improve self-management

Quotation number	Quotation
Capacity of the participant to be able to trust the clinician’s advice
40	He bluffs a bit … So I didn’t have any faith in him … I will go and see someone new … I want to build a relationship with someone.” (Female patient aged 28 years, T1DM duration 2 years)
41	“Sometimes when you ask doctors for information you feel they start fudging information. I feel that they start to fudge answers because at times I feel that they may not know the exact details. … But she (the endocrinologist) was amazing in terms of giving full answers. … When I would ask questions she would give me really simple to understand information.” (Female patient aged 32 years, T1DM duration 25 years)
42	“Anything I’ve asked her she’s been able to answer and if she doesn’t know straight away she’ll either give me a call or send me an email with the answer.” (Female patient aged 26 years, T1DM duration 2 years)
43	“I have a good GP. She does not pretend to know everything about diabetes. So she has baseline knowledge and if she can’t answer my question she will refer me to someone who can answer it.” (Female patient aged 33 years, T1DM 6 years)
44	“They have to keep up to date with all the clinical data and all the overseas trials. He goes to overseas conferences and that kind of reassures me a bit more.” (Female patient aged 24 years, T1DM 11 years)
45	“She was fantastic because she kept up with the latest research and I found that very supportive.” (Female patient aged 30 years, T1DM duration 12 years)
46	“Diabetes educators I’m not a big fan of. I don’t think they know much … I haven’t had any good experience with them so far … So I do not consult with them.” (Female patient aged 33 years, T1DM duration 13 years)
47	“I don’t consult with a GP. Their knowledge is lacking about type 1 diabetes.” (Female patient aged 28, T1DM duration 2 years)
Consistency of advice provided across the health care team
48	“It’s frustrating because you go to the educator and they will tell you one thing, and then you go to the endocrinologist and they will tell you something else … Because it is a different doctor every time, then I always take what the doctor says with a pinch of salt.” (Female patient aged 24 years, T1DM duration 2 years)
49	“I think it adds to the emotional drain of diabetes because every doctor has such a different approach.” (Female patient aged 24 years, T1DM duration 18 years)
50	“It is emotionally draining having to explain the way you approach your diabetes every time.” (Female patient aged 33 years, T1DM duration 25 years)
51	“I have to swap between three different endocrinologists. It is OK, everybody has a different opinion and some bits work for you and some bits don’t. If you know what you want to get out of it, it is good to see a few different ones.” (Female patient aged 21 years, T1DM duration 17 years)
52	“I’ve seen that many endocrinologists over the years that you learn to adapt. Some of them are better at certain things like for example adjusting the pump.” (Female patient aged 31 years, T1DM duration 20 years)
53	“I definitely get mixed messages. … She thinks that and he thinks that and I take it all in and go well what do I think and what would work for me and I trial and error all of them.” (Female patient aged 24 years, T1DM duration 2 years)
54	“At the end of the day you are the expert … If you can’t figure it out it is good to get advice from the specialists. But even when they offer you the advice, it is like yeah NO!” (Female patient aged 28 years, T1DM duration 2 years)
55	“I don’t even tend to ask them anymore. I just either do it myself or look it up online.” (Female patient aged 25 years, T1DM duration 3 years)
56	“I think it is probably more the educator that the other people to say the right things. Which is why I stopped seeing an endocrinologist and a dietician too.” (Female patient aged 23 years, duration T1DM duration 13 years)
Whether clinician suggested new technologies for self-management
57	“My endocrinologist never even mentioned the pump to me.” (Female patient aged 24 years, T1DM duration 11 years)
58	“I asked to go on CGM but I was rejected. (The endocrinologist) just said No! He didn’t even look into it!” (Male patient aged 22 years, T1DM duration 16 years)
59	“I got a bit annoyed because my endocrinologist has never suggested this. It’s purely because she’s like, ‘Well you’ve got good control. Like why would you?’ They don’t think to.” (Female patient aged 28 years, T1DM duration 2 years)
60	“I feel like I need to pull information out of her. If I did not think up the questions about you know splitting my insulin dose or doing various other things then she wouldn’t offer the assistance.” (Female patient aged 27 years, T1DM duration 16 years)

Abbreviations: CGM, continuous glucose monitoring; GP, general practitioner; T1DM, type 1 diabetes mellitus.