Part 1: Semi-structured interviews
Totally 17 themes in the 4 dimensions of curriculum were identified.
Goals
Theme 1: Outcome improvement
All patients and HCPs ranked improving diabetes outcome, including both physiologically and psychologically, the most important goal of diabetes education. To live ‘a normal life’ or have ‘better quality of life’ is also of top concern.
‘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]
Theme 2: Behaviour modification
It is not unusual for HCPs in China to encounter T1D patients admitted with diabetic ketosis due to discontinuation of insulin therapy, because treatments ‘can cure T1D’. Moreover, patients are frequently confused with different insulin categories and risk purchasing a wrong cartridge. Therefore, most HCPs fully recognized and embraced the importance of educating patients to achieve sufficient disease control and avoid unnecessary cost.
‘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, and thus straighten things up.’
[H4]
Contents
Theme 1: Living with T1D
HCPs all agreed that the teaching session should start with a basic introduction to T1D.
‘In the very beginning patients need to clearly understand what they are dealing with every day. … What causes T1D, what are some of the most common misunderstandings of T1D.’
[H7]
In addition to basic concepts, patients were generally more concerned about ‘to build a healthy attitude towards diabetes’ in the first place. 8 out of 13 patients mentioned an ice-breaking start with establishing their confidence to live with diabetes for the rest of their lives.
‘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, to build our confidence.’
[P2]
‘… To help us correctly recognize ourselves: people who will be living with T1D life-long.’
[P5]
Theme 2: Self-monitoring of blood glucose (SMBG)
The importance of SMBG has been greatly underestimated by most patients [18]. Over 60% patients in our T1D clinic tested glucose less than 4 times/day (data unpublished). However, only a few patients in the interview mentioned SMBG.
‘I started with testing my blood sugar over 7 times/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 test blood sugar without finger prick. I’d like to know more about that.’
[P10]
Patients’ negligence on SMBG is exactly why HCPs emphasize this topic. New techniques for glucose testing such as continuous glucose monitoring also need to be introduced.
‘In addition to the normal range, frequency, and correct procedures of testing, the importance of SMBG should also be emphasized in different conditions, helping patients to form a habit of testing.’
[H7]
Theme 3: Managing psychosocial stress
Almost all patients were stressed at different levels and occasions—stress in the process of schooling, working, and establishing relationships; how to communicate with people around them about diabetes.
‘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]
Theme 4: Insulin
Insulin is essential for blood glucose control in T1D. Both the dose and timing of bolus injections are key factors in controlling post-prandial glucose. The optimal time to administer mealtime insulin may differ between patients or even between meals [19]. However, it is not easy for the patients to understand all by their own how different insulin works.
‘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]
HCPs also emphasize on self-adjustment of insulin doses in daily routine in order to help patients to maintain ‘a normal life’.
‘Blood glucose varies every day. Instead of giving fixed doses prescribed by the doctors, it’s more important for the patients to learn how to adjust doses properly according to their own meals and activities.’
[H10]
Theme 5: Carbohydrate and carb counting
Carbohydrates are the staple food in Chinese cuisine. Although cooking methods and ingredients are more diversified and harder to predict compared to western food culture, consensus was still reached that, along with insulin, identifying carbohydrates, knowing carb counting and carb-insulin ratio, are fundamental.
‘Through understanding how carbohydrates and other ingredients affect glucose, patients can learn to inject boluses before meals or snacks. If they want to live a less restricted life while keeping sugar level stable, carb counting is a basic skill.’
[H9]
‘I heard from other patients to read 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]
Theme 6: Hypoglycaemia
Hypoglycaemic events occur to every T1D patients, but not everyone knows the right procedure to handle it. All basic dimensions of hypoglycaemia need to be elucidated.
‘In fact, quite a few patients are correcting hypoglycaemia in the wrong way without knowing. They need to learn how to treat and prevent hypoglycaemia correctly.’
[H3]
‘Besides, we need to let them understand what causes low blood glucose.’
[H9]
‘I want to know how to reduce hypoglycaemic events.’
[P2]
Theme 7: Physical activities
The biggest obstacle lying in front of patients with physical activities is that most people don’t have any idea of the trend of glucose fluctuations during or after exercises. Some experienced repeated hypoglycaemia after household chores. Some didn’t know their glucose changes because they never checked before or after.
‘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 activities definitely have profound effects on glucose levels thus should be discussed. For example, how glucose might fluctuate by different types, duration, and strength of activities. How to make certain adjustments on food intake and insulin dose before, during, or after physical activities.’
[H1]
Patients also mentioned the lack of time and more importantly, perseverance.
‘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]
Theme 8: Complications
Screening for complications is recommended by diabetes guidelines [5,6]. A comprehensive introduction to complications in language geared towards average patients should be available.
‘There must be a session for (chronic) complications, especially for the screening part.’
[H4]
‘…How to prevent and detect early signs of complications.’
[H5]
‘If we could know how complications feel like, probably we would pay more attention to them.’
[P4]
Theme 9: Question-and-answer
Participants considered an opportunity for further discussion with HCPs and experienced patients is considered a good summary of the whole course.
‘There need to be a part where patients can freely and directly ask whatever questions they have during the course.’
[H1]
‘Q&A must be included… To guarantee that each attendee can have at least one actual problem solved.’
[P5]
Format of delivery
Theme 1: Multidisciplinary team combined with peer support
SEPs in other countries are mainly conducted by a team of one diabetes education nurse and one dietician. Nevertheless, most HCPs interviewed embraced a multidisciplinary team of educators, with psychologist and physical therapists included.
‘A multidisciplinary team is essential. Different contents should be elucidated by specific specialists—diets by dieticians, dose adjustment by diabetologists, and so on.’
[H4]
From patients’ perspective, peer support was indispensable. Patients are more likely to gain strength from people in the same condition.
‘Experiences from well-managed patients will be quite valuable. ‘Long illness makes the patient a good doctor’. We cannot learn those from textbooks or professionals. Plus, they can inspire us to never lose hope.’
[P12]
Theme 2: Face-to-face education followed by remote learning
Face-to-face group learning remains the most effective setting by all participants. However, different from the large learning groups commonly seen among T2D patients in China, ‘small-group education’ was preferred for T1D. Meanwhile, with the rapid development of mobile health (mHealth) technologies, diabetes remote learning apps has become a welcomed supplement.
‘I prefer patients sitting together where we can learn from each other, but I’m not good at memorizing things. It would be very helpful if we can watch video recordings back home.’
[P4]
‘Small-group teaching plus remote learning is better. Remote learning should be video recordings. It is more direct and intuitive.’
[H8]
Theme 3: 2- to 3-day programme held on weekends or holidays
Most interviewees agreed that the length of face-to-face education should not exceed three days.
‘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
Questions about quality assurance were only administered to HCPs. Three themes were considered useful for developing an assessment system: ‘After-class quiz’, ‘Patient’s feedback’, and ‘Long-term evaluation of effectiveness’. While the first two themes mainly aim at examining immediate knowledge capture, general acceptance by patients, and comprehensibility of the programme,the third theme evaluates effectiveness to provide insights for further refinement of SEP.
‘A quiz held right after class is the most straight forward way to test the acceptance and outcome of teaching. You could know from their 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—both biomedical and psychological outcomes.’
[H3,H5,H8]
Part 2: Delphi consultation
All 17 themes reached consensus and results are shown in Table 3. Therefore, all items were preserved and no more rounds of Delphi were performed. According to experts’ suggestions, the research group modified the curriculum by i) changing the Chinese title for each lesson to make the course more intriguing, ii) splitting ‘insulin’ to ‘knowing insulin’ and ‘insulin dose adjustment’, iii) adding knowledge on diabetic ketoacidosis in the session ‘complications’, and iv) arranging the course as a 2-day weekend event.
Part 3: Preliminary courses
In total, 20 T1D patients (Appendix Table S4) attended and 3 family members audited the courses. Degree of satisfaction was 100%, and all attendees rated the programme as ‘Extremely helpful’. 13 patients expressed their gratitude for this programme in comments. The average score on the quiz was 70%, and most incorrect answers were in dose calculation. According to patients feedback, ‘managing psychosocial stress ’ was expanded to ‘managing psychological issues’, the teaching of ‘carbohydrate counting’ and ‘insulin dose adjustment’ were modified to improvecomprehensibility, and lunch break was extended to 2 hours. Class schedule is shown in Table S5 (Appendix). The final version of TELSA programme is shown in Table 4.