Background
Methods
Study design
Part 1: Semi-structured interviews
Data collection
Characteristics | Patients (n = 13) |
---|---|
Gender, n (%) | |
Male | 6 (46.2) |
Female | 7 (53.8) |
Age in years, mean (range) | 30.9 (19.0–52.0) |
T1D duration in years, mean (range) | 10.1 (0.5–41.0) |
Highest level of education, n (%) | |
Junior high | 2 (15.4) |
Senior high | 1 (7.7) |
College/University | 7(53.8) |
Postgraduate | 3(23.1) |
Marital status, n (%) | |
Married | 5 (38.5) |
Single | 8 (61.5) |
Characteristics | Professionals (n = 10) |
---|---|
Gender, n (%) | |
Male | 1 (10.0) |
Female | 9 (90.0) |
Age in years, mean (range) | 37.9 (30.0–53.0) |
Highest level of education, n (%) | |
Doctor | 6(60.0) |
Master | 4(40.0) |
Professional, n (%) | |
Diabetologist | 5 (50.0) |
Diabetes specialist nurse | 2 (20.0) |
Diabetes educator | 3 (30.0) |
Years of working, mean (range) | 14.4 (6.0–31.0) |
Data analysis
Part 2: Delphi consultation
Participants
Delphi procedure
Part 3: Preliminary courses
Results
Part 1: Semi-structured interviews
Goals
‘A qualified education programme is supposed to impact on patients’ metabolic control. It is critical in improving the quality of life for patients and their family.’[Healthcare professional (H) 1].‘I want to reduce the number of hypoglycaemic episode as well as incidences of very high blood sugar, and ultimately, to avoid complications.’[Patient (P) 1].‘What I hope is to be able to relieve my anxiety, and thus live a normal life.’[P9].
‘The most important goal of education is to reduce fundamental errors. For instance, some patients choose invalidated Chinese traditional medicine instead of insulin in the hope of curing T1D; some patients misuse NovoRapid 30 Mix as bolus instead of NovoRapid. These can be avoided through proper education right after diagnosis.’[H2].‘Through education, patients will have a correct understanding of diabetes self-management. … With various online resources that might be misleading, patients need easy access to professional educational materials that can teach correct from incorrect.’[H4].
Contents
‘In the very beginning patients need to clearly understand what they are dealing with every day. … They should know, for example, what causes T1D, and what some of the most common misunderstandings of T1D are.’[H7].
‘I think in the first class, it should be clarified what the benefits are for controlling diabetes. It should be pointed out that we can still have a normal life if diabetes is under control, so as to build our confidence.’[P2].‘… To help us correctly recognize ourselves: people who will be living with T1D life-long.’[P5].
‘I started with testing my blood glucose levels at least 7 times per day in the hope that I could figure out my glucose pattern. But soon I found it was a mission impossible. Then I just gave up and let it be. Now I just test randomly. As long as it is neither too high nor too low, I’m satisfied.’[P4].‘I’ve heard there is a way to check my blood glucose levels without finger prick. I’d like to know more about that.’[P10].
‘In addition to the normal range, frequency, and correct procedures of testing blood glucose levels, the importance of SMBG should also be emphasized in different conditions, helping patients to form a habit of testing.’[H7].
‘My previous research found that T1D patients are under great stress but generally don’t know how to relieve it, or to effectively communicate with families and friends to gain support.’[H3].‘Since I have been diagnosed with diabetes, I have not been in the mood for starting a romantic relationship. I strongly believe no one will accept a young man with diabetes as a boyfriend.’[P4].‘All my classmates know that I’m diabetic. Every time I inject insulin before a meal, I think they are pitying me. So I just hide. I don’t like discussing it with others.’[P11].
‘I want to learn the effect (PK-PD) of different insulin, like the time of onset, peak time, and etc.’[P6].‘Patients need to know the basics of insulin, such as its physiological effects and classification. This is the prerequisite of administering correct insulin at correct time.’[H7].
‘Blood glucose levels may vary every day. Instead of fixed doses prescribed by the doctors, it’s more important for the patients to learn how to adjust insulin doses properly according to their own meals and activities.’[H10].
‘Through understanding how carbohydrates and other ingredients affect blood glucose levels, patients can learn to inject boluses before meals or snacks. If they want to live a less restricted life while keeping stable blood glucose levels, carb counting is a basic skill.’[H9].‘I heard from other patients about reading food labels, but I still have no idea what to look at. Energy? Carbohydrates? What’s the meaning of reading these numbers anyway? I am so afraid of being in the supermarket now, dare not to buy anything.’[P9].
‘In fact, quite a few patients don’t realize that they are correcting hypoglycaemia in a wrong way. They need to learn how to treat and prevent hypoglycaemia correctly.’[H3].‘Besides, we need to let them understand what causes low blood glucose levels.’[H9].‘I want to know how to reduce hypoglycaemic events.’[P2].
‘I don’t know what type of exercise fits me. I assume exercise can lower blood sugar, but my sugar level can’t even drop for 1 mmol/L after running for 5 kilometres.’[P1].‘Physical activity definitely has profound effects on glucose levels thus should be discussed. For example, patients need to learn how glucose levels might fluctuate with different types, duration, and strength of activities; how to make certain adjustments on food intake and insulin dose before, during, and after physical activities.’[H1].
‘I know the benefits of regular exercises, but it’s really easier said than done. I am so exhausted to even move my legs after work every day. I do want to know whether there is a better way to set myself in motion.’[P7].
‘There must be a session for (chronic) complications, especially for the screening part.’[H4].‘…How to prevent and detect early signs of diabetic complications.’[H5].‘If we could know what diabetic complications feel like, probably we would pay more attention to them.’[P4].
‘There need to be a part where patients can freely and directly ask whatever questions they have during the course.’[H1].‘Question & Answer must be included… To guarantee that each attendee can have at least one actual problem solved.’[P5].
Format of delivery
‘A multidisciplinary team is essential. Different contents should be elucidated by specific specialists—diets by dieticians, dose adjustment by diabetologists, and so on.’[H4].
‘Experiences from well-managed patients will be quite valuable. ‘Long illness makes the patient a good doctor’. We cannot learn those personal experiences from textbooks or professionals. Plus, they can inspire us to never lose hope.’[P12].
‘I prefer patients sitting together because we can learn from each other. However, I’m not good at memorizing things, so it would be very helpful if we can watch video recordings back home.’[P4].‘Small-group teaching followed by remote learning is better. Remote learning should be via video recordings. It is more direct and intuitive.’[H8].
‘Weekends are good options. It won’t conflict with any work. Besides, I think it will be too much to digest if the course lasts for more than 3 full days.’[P8].
Quality assurance
‘A quiz held right after class is the most straight forward way to test the acceptance and outcome of teaching. You could know from attendees’ responses how well they have learned during class, and what needs to be explained again.’[H2].‘An extremely important indicator is patients’ responses, such as their experiences, degree of satisfaction, and so forth.’[H10].‘I think the final evaluation needs to be thorough, including both biomedical and psychological outcomes.’[H3, H5, H8].
Part 2: Delphi consultation
Dimension | Item | Agreement ratioa (%) | Full mark ratio (%) | Degree of importance | ||
---|---|---|---|---|---|---|
Mean | SD | CV | ||||
Goals | Behaviour modification | 100.00 | 92.00 | 4.92 | 0.28 | 0.06 |
Outcome improvement | 100.00 | 96.00 | 4.88 | 0.37 | 0.08 | |
Sessions | Living with T1D | 96.00 | 80.00 | 4.60 | 0.63 | 0.13 |
Self-monitoring of blood glucose | 100.00 | 92.00 | 4.88 | 0.44 | 0.09 | |
Managing psychosocial stress | 92.00 | 68.00 | 4.28 | 0.80 | 0.19 | |
Insulin | 100.00 | 96.00 | 4.72 | 0.33 | 0.07 | |
Carbohydrates and carb counting | 100.00 | 88.00 | 4.76 | 0.37 | 0.08 | |
Hypoglycaemia | 100.00 | 84.00 | 4.72 | 0.54 | 0.12 | |
Physical activity | 100.00 | 80.00 | 4.68 | 0.52 | 0.11 | |
Complications of diabetes | 96.00 | 84.00 | 4.48 | 0.56 | 0.12 | |
Question-and-answer | 96.00 | 72.00 | 4.52 | 0.82 | 0.18 | |
Format | Multidisciplinary team combined with peer support | 100.00 | 96.00 | 4.84 | 0.20 | 0.04 |
Face-to-face education followed by remote learning | 96.00 | 84.00 | 4.76 | 0.63 | 0.13 | |
2- to 3-day programme held on weekends or holidays | 92.00 | 72.00 | 4.48 | 0.93 | 0.24 | |
Quality assurance | After-class quiz | 100.00 | 80.00 | 4.64 | 0.70 | 0.15 |
Patients’ feedback | 96.00 | 84.00 | 4.88 | 0.54 | 0.11 | |
Long-term evaluation on effectiveness | 96.00 | 80.00 | 4.60 | 0.85 | 0.18 |
Part 3: Preliminary courses
Dimension | Theme |
---|---|
Goals | 1. Behaviour modification |
2. Outcome improvement | |
Sessions | 1. Living with T1D |
2. Self-monitoring of blood glucose | |
3. Managing psychological issues | |
4. Knowing insulin | |
5. Carbohydrates and carb counting | |
6. Insulin dose adjustment | |
7. Hypoglycaemia | |
8. Physical activity | |
9. Complications of diabetes | |
10. Question-and-answer | |
Format | 1. Multidisciplinary team combined with peer support |
2. Face-to-face education followed by remote learning | |
3. 2-day programme held on weekends | |
Quality assurance | 1. After-class quiz |
2. Patients’ feedback | |
3. Long-term evaluation on effectiveness |