Background
Methods
Context
Phases of patient education program development for people living with diabetes or prediabetes in Brazil
Needs analysis
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Literature review of best practice on diabetes patient education: a literature search of current (last 10 years) diabetes guidelines from Brazil and South America was conducted for information regarding patient education. Guidelines from Brazilian and South American Societies of Diabetes and Rehabilitation were included in the search, as well as a snowball search was performed using the terms “diabetes guidelines”, “South America”, “Brazil”, “diabetes education”, “health education”, “education guidelines”. Data were extracted and combined into categories following the standards of reporting of behavior change interventions provided by the Workgroup for Intervention Development and Evaluation Research (WIDER) [37]: characteristics of those delivering the intervention (i.e., type of healthcare professional), recipients characteristics, the setting (i.e., time and place of intervention), delivery mode, intensity (i.e., number of sessions), duration (i.e., each session duration), adherence to delivery protocols, and a detailed description of the intervention content.
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Environmental scan of other educational programs for diabetes patients: to understand how education is delivered to people with diabetes, an environmental scan was performed. Cardiac rehabilitation (CR) centers identified by a previous study [38] in two Brazilian cities were included in this scan. These centers were contacted by email, and program managers were asked to answer eight questions related to their educational programs’ characteristics based on the WIDER [37]. If no response was received within a week, the same message was sent once again (see Additional file 1).
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Assessment of information needs of patients identified by diabetes experts: based on a validated tool to assess the information needs of cardiac patients [39] and their healthcare providers [40], an instrument was developed to evaluate the information needs of patients to be completed by a convenience sample of diabetes experts. The instrument comprised 80 items – based on Diabetes College content – where experts were asked to rate the importance of each topic for diabetes patients from 1 = really not important to 5 = very important. This instrument also included one multiple-choice question related to how they identified that the patients prefer the education topics to be delivered (see Additional file 2).
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Patient focus group: focus groups are collective discussions that are designed to explore a specific set of issues. They are a qualitative technique appropriate for exploring patients’ knowledge and experiences, examining not only what they think but why they hold a particular opinion. They can reveal dimensions of understanding that often remain untapped by quantitative data methods. Thus, focus groups explore people’s perception of issues by encouraging interaction between research participants [41]. Six focus groups were undertaken in two Brazilian cities to determine the patients’ experience living with diabetes or prediabetes, and procedures followed in conducting it are detailed in an additional file (see Additional file 3). Focus group sessions were digitally audio-recorded and transcribed verbatim. An iterative and reflexive thematic content analysis was used to identify, analyze and report themes evolving from the focus groups [41, 42].
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Patients’ narratives were coded using a qualitative framework and grouped under themes [41]. Sample size was based on the principle of theoretical saturation, a process by which data are collected and analyzed until data saturation is reached. This is defined as the point at which no new themes emerged.
Translation and cultural adaptation of the diabetes college patient guide
Results
Literature review of best practice on diabetes patient education
Guidelines (author, year) | Characteristics of those delivering the intervention | Characteristics of the recipients | The setting | Mode of delivery | The intensity | The duration | Adherence to delivery protocols | Intervention content |
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Brazilian Ministry of Health, 2013 [52] | Any healthcare professional. | Not provided. | Not provided. | Not provided. | Not provided. | Do not specify the number of sessions but mention that it should be continuous and start at the first consultation. | Not provided. | Specific to foot care (ulcers). |
Brazilian Society of Diabetes, 2014 [1] | Any healthcare professional, but it should include a qualified diabetes educator. | Not provided. | Not provided. | Physical space and features include the following: - privacy and confidentiality - comfortable seats, lighting, and air quality - safe environment (free from any dangers) - waiting rooms and toilets should be provided - accessibility for people with physical disabilities - teaching tools, communication technology and the proper equipment to support the multi-professional team must be available and include the following: - adequate audiovisual resources - telephone and fax services - office supplies and equipment - record-keeping system - computer and internet access | Not provided. | Do not specify the number of sessions but mention that it should be continuous for better results. | Not provided. | - Eat healthily - Practice regular physical activity - Check insulin levels - Take medications - Solve problems - Reduce risk factors - Adapt life in a healthy way. |
Brazilian Society of Diabetes, 2019–2020 [53] | Healthcare providers and teams qualified in diabetes education: doctors, physical educators, dietitians, nurses, psychologists, social workers, pharmacists, and dentists. | Children and adolescents living with type 1 diabetes | Not provided. | Activities in groups, workshops, and lectures. Nutritional orientation groups. Dialogical, reflexive, and critical perspectives can be an effective instrument for the formation of critical knowledge. Group dynamics, personal experiences, games, forums, and webpages. | Not provided. | Not provided. | Not provided. | The five behavior change stages of the Transtheoretical Model proposed by Prochaska: pre-contemplation, contemplation, preparation, action, and maintenance. Eating plan, adequate physical exercise, self-care practices to reduce risk factors, motivating techniques to live with diabetes. The Agency for Healthcare Research and Quality (AHRQ) recommends that the following areas of knowledge should be reviewed and/or advised before patient discharge (if applicable): - identify the team that will continue the post-discharge patient follow-up - diagnosis, self-monitoring and glycemic goals - definition, recognition, treatment, and prevention of hyperglycemia and hypoglycemia - nutritional habits - diabetes medicines: when and how (oral and injectable) - management of diabetes in the days of undercurrent illnesses - proper use and handling of needles and syringes. |
Comissão Nacional de Incorporação de Tecnologias do SUS (CONITEC), 2018 [54] | Multidisciplinary health team having diabetes education experience. Type 1 diabetes education should be carried out by a specialist physician (endocrinologist) and a multidisciplinary health team. | Type 1 diabetes and parents. The educational program needs to be compatible with the level of cognitive development and adapted to the intellectual capacity of the child, adolescent, and family members. | Not provided. | Not provided. | Not provided. | Not provided. | Not provided. | Focus on self-management and should include the following educational topics: - healthy eating - carbohydrate counting - exercise - identification and treatment of hypoglycemia - insulin administration - intensive insulin therapy - tracking complications |
Environmental scan of other patient education programs for diabetes patients
Assessment of information needs of patients identified by diabetes experts
Diabetes College Pillars | Area | Topics | Mean ± SD of item | Mean ± SD of area | Mean ± SD of pillars |
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Treat Diabetes | Overview of diabetes | 1. What does the pancreas do, and what is the role of insulin? | 4.53 ± 0.64 | 4.75 ± 0.26 | 4.61 ± 0.25 |
2. What is diabetes and what happens in the body? | 4.93 ± 0.26 | ||||
3. What are the signs and symptoms of diabetes? | 5.00 ± 0.00 | ||||
4. What tests are used to diagnose diabetes? | 4.53 ± 0.52 | ||||
Management of blood sugar | 5. What a glucometer is, how to read it, and when to use it? | 4.90 ± 0.26 | 4.75 ± 0.21 | ||
6. What does the A1c test reveal about the blood sugar levels? | 4.60 ± 0.62 | ||||
Management of diabetes | 7. How to manage diabetes? | 4.80 ± 0.41 | 4.64 ± 0.13 | ||
8. What are the target levels for glycated hemoglobin? | 4.60 ± 0.63 | ||||
9. What are the target levels for blood pressure? | 4.73 ± 0.46 | ||||
10. What are the target levels of cholesterol? | 4.47 ± 0.64 | ||||
11. How to manage other factors that affect diabetes (e.g., depression, fitness and activity level, stress, and smoking)? | 4.60 ± 0.63 | ||||
Hypoglycemia | 12. What are hypoglycemia and its signs and symptoms? | 4.93 ± 0.26 | 4.73 ± 0.17 | ||
13. What are the risk factors and treatment for hypoglycemia? | 4.66 ± 0.62 | ||||
14. 14. How to prevent hypoglycemia? | 4.80 ± 0.41 | ||||
15. What is the impact of hypoglycemia on driving? | 4.80 ± 0.41 | ||||
16. 16. What is diabetes medical identification jewelry, and why to wear? | 4.47 ± 0.52 | ||||
Hyperglycemia | 17. 17. What are hyperglycemia and its signs and symptoms? | 4.67 ± 0.49 | 4.62 ± 0.12 | ||
18. What is the impact of hyperglycemia? | 4.66 ± 0.49 | ||||
19. What are the risk factors and treatments for hyperglycemia? | 4.73 ± 0.46 | ||||
20. How to treat hyperglycemia when the patient is ill? | 4.40 ± 0.74 | ||||
21. How to prevent hyperglycemia? | 4.67 ± 0.49 | ||||
22. What is the impact of hyperglycemia on exercise? | 4.60 ± 0.63 | ||||
Health problems associated with diabetes | 23. What is the impact (complications) of diabetes on your body? | 4.73 ± 0.46 | 4.49 ± 0.36 | ||
24. How to prevent diabetes-related complications? | 4.67 ± 0.49 | ||||
25. What tests can be performed to identify complications related to diabetes? | 4.07 ± 0.59 | ||||
Diabetes medicines | 26. What are diabetes medicines? | 4.20 ± 0.56 | 4.21 ± 0.29 | ||
27. How do diabetes medicines act in the body? | 3.93 ± 0.80 | ||||
28. Who can help patients with the management of diabetes medicines? | 4.50 ± 0.52 | ||||
Get Active | Getting active and starting an exercise program | 29. Why sitting less and moving more helps prevent diabetes? | 4.73 ± 0.46 | 4.63 ± 0.11 | 4.59 ± 0.21 |
30. How to spend less time sitting? | 4.73 ± 0.46 | ||||
31. What is physical activity, and how it helps manage diabetes? | 4.60 ± 0.63 | ||||
32. How to start exercising? | 4.70 ± 0.49 | ||||
33. What happens with blood sugar levels when someone is exercising? | 4.50 ± 0.64 | ||||
34. Which type of exercise diabetes patients should start? | 4.50 ± 0.64 | ||||
Types of exercise | 35. What are aerobic exercise and its benefits? | 4.27 ± 0.88 | 4.42 ± 0.11 | ||
36. How should the diabetes patient do his/her aerobic exercise? | 4.53 ± 0.64 | ||||
37. What are resistance training and its benefits? | 4.40 ± 0.83 | ||||
38. How should the diabetes patient do his/her resistance training? | 4.47 ± 0.64 | ||||
Exercise safety | 39. How to prevent hypoglycemia? | 4.87 ± 0.35 | 4.67 ± 0.30 | ||
40. What to eat before exercise, and what should be avoided (smoking and alcohol)? | 4.87 ± 0.35 | ||||
41. How take care of feet for exercise? | 4.80 ± 0.41 | ||||
42. How to prevent muscle and joint injuries while exercising? | 4.33 ± 0.72 | ||||
43. How to exercise safely in hot and cold weather? | 4.30 ± 0.70 | ||||
44. How to exercise safely with certain medical problems? | 4.87 ± 0.35 | ||||
Eat Healthy | Nutrition basics | 45. What are the four food groups? | 4.53 ± 0.64 | 4.40 ± 0.11 | 4.28 ± 0.21 |
46. What foods have carbohydrates, proteins, and fats? | 4.40 ± 0.47 | ||||
47. How should diabetes patient plan their meals? | 4.40 ± 0.47 | ||||
48. What are the options for healthy snacks? | 4.27 ± 0.51 | ||||
Mindful eating and intuitive eating | 49. What is mindful eating and intuitive eating and how they can help diabetes patients manage their condition? | 4.27 ± 0.51 | 4.27 ± 0.00 | ||
Fiber and glycemic index | 50. What are the types of fiber? | 4.13 ± 0.65 | 4.17 ± 0.07 | ||
51. How much fiber a patient needs to manage his/her diabetes? | 4.20 ± 0.52 | ||||
52. How can they get more fiber in a day? | 4.20 ± 0.65 | ||||
53. How much fiber there is in plant foods? | 4.07 ± 0.75 | ||||
54. What is glycemic index? | 4.13 ± 0.51 | ||||
55. How can low glycemic index foods help the management of diabetes? | 4.27 ± 0.51 | ||||
56. What factors affect the glycemic index of foods? | 4.20 ± 0.52 | ||||
Cholesterol, triglycerides and the Mediterranean diet pattern | 57. What are cholesterol and which types? | 4.13 ± 0.51 | 4.13 ± 0.05 | ||
58. How does the Mediterranean diet help manage diabetes? | 4.07 ± 0.70 | ||||
59. How to eat a Mediterranean diet? | 4.20 ± 0.56 | ||||
60. What are triglycerides and how to control their levels? | 4.13 ± 0.83 | ||||
Blood pressure and the DASH diet pattern | 61. What is the link between diabetes and high blood pressure? | 4.07 ± 0.50 | 4.34 ± 0.25 | ||
62. What are the hidden sources of sodium? | 4.60 ± 0.63 | ||||
63. How can the DASH eating pattern lower blood pressure? | 4.07 ± 0.96 | ||||
64. What amount of sodium is ok for diabetes patients? | 4.47 ± 0.83 | ||||
65. What else can be done to lower blood pressure? | 4.47 ± 0.83 | ||||
Reading food labels | 66. What are the different types of nutrition information on a food label? | 4.87 ± 0.35 | 4.87 ± 0.00 | ||
Feel Well | Managing feelings and diabetes burnout | 67. How to manage feelings about having diabetes? | 4.80 ± 0.41 | 4.67 ± 0.12 | 4.39 ± 0.23 |
68. What are diabetes burnout and its signs and symptoms? | 4.60 ± 0.51 | ||||
69. How to prevent and deal with diabetes burnout? | 4.60 ± 0.51 | ||||
Sleep, stress, anxiety, and depression | 70. What does it mean to have a ‘good night sleep’ and how to achieve it? | 4.27 ± 0.51 | 4.27 ± 0.00 | ||
71. What is sleep apnea? | 4.20 ± 0.65 | ||||
72. What is stress, and how to manage it? | 4.20 ± 0.65 | ||||
73. What is anxiety, and how to manage it? | 4.27 ± 0.51 | ||||
74. What is depression, and how to manage it? | 4.20 ± 0.65 | ||||
A healthy relationship | 75. What is a healthy relationship? | 4.20 ± 0.52 | 4.40 ± 0.22 | ||
76. How can diabetes impact sexual intimacy? | 4.60 ± 0.51 | ||||
Take Control | Vision, goals and action plans | 77. What is self-management and to self-manage diabetes? | 4.60 ± 0.27 | 4.53 ± 0.05 | 4.53 ± 0.05 |
78. How to define a vision, set goals, and build action plans to change life? | 4.53 ± 0.36 | ||||
79. How to problem-solve to manage diabetes? | 4.47 ± 0.43 | ||||
80. How to review action plans? | 4.53 ± 0.92 |
Patient focus group
Self-management
“Life with diabetes is a life with discipline; if you want to live well and not have complications, you have to follow a routine of self-care. […] I feel it is a lonely disease because people who do not have the disease do not know how tired the routine can be and what is involved.” “Julie”, between the ages of 30–40 years old, with a diagnosis of type 1 diabetes for 10 years.
Physical activity
“I joined a gym, but I do not go often. I know it is important [to my health], but it is hard to attend. When I am exercising, I have questions about what to eat before, during, and after the exercise routine. I am afraid to not feel well because my glucose levels go down too fast. I would like to know if there is an ideal type of exercise for diabetes.” “Mary”, between the ages of 20–30 years old, with a diagnosis of type 1 diabetes for 14 years.
Eating habits
“It is hard to cut some types of food and vegetables and fruits are not the same as they were in the past. I am not sure that the food I buy is healthy.” “Lucas”, between the ages of 60–70 years old, with a diagnosis of type 2 diabetes for 14 years.
Diabetes medication
“My wife is the one that controls my medications. I believe that little information about the use of medications was explained to me, and I have questions regarding use and storage.” “Marc” between the ages of 40–50 years old, with a diagnosis of type 2 diabetes for 14 years.
Psychosocial wellbeing
“I believe psychosocial wellbeing influences the control of my disease. I was always anxious and already had depression, which influences my glucose levels. I feel my anxiety increased with the diagnosis of the disease.” “Rose” between the ages of 50–60 years old, with a diagnosis of type 2 diabetes for 4 years.
Sleep
“I do not sleep well. Usually, [I sleep] 5 hours per night. I do not know why. Maybe [due to] anxiety, maybe family issues. I do not speak with my doctor about this because he will not understand.” “Albert” between the ages of 60–70 years old, with a diagnosis of type 2 diabetes for 9 years.
Translation and cultural adaptation of the patient guide
Section | Culturally Adapted? | Changes |
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Treat Diabetes | Yes Chapters 1–7 | • Terms and nouns adapted to the Brazilian culture. • Units changed to reflect the Brazilian system. • Change the name of medications to reflect the names in Brazil (some medications were excluded because they are not commercialized in Brazil). • Management of glucose and tests were updated to current practice in Brazil. • Some management programs for Diabetes were excluded because they are not available in Brazil. |
Get Active | Yes Chapters 1–3 | • Terms and nouns adapted to the Brazilian culture. • Types of sports were changed to reflect Brazilian culture (e.g., golf was replaced by soccer). • Borg Scale Original was changed to the modified version that is currently used in Brazil. • Glycemic values for exercise: changed to the ones recommended by the Brazilian Society of Diabetes. • Air quality: pictures with references from Brazil were included. • Emergency contact: changed to the Brazilian health emergency service number (SAMU 192). |
Eat Healthily | Yes Chapters 1 and 4 | • Terms and nouns adapted to the Brazilian culture. • Canada’s Food Guide was substituted by the Brazilian one. • Foods that are not available in Brazil were excluded. • Consumption of fiber was changed to reflect what is recommended by Brazilian dietitians. • LDL and HDL target levels were updated to reflect Brazilian guidelines. • Links of nutritional programs only available in English were excluded. |
Feel Well | Yes Chapters 1 and 2 | • Terms and nouns adapted to the Brazilian culture. |
Take Control | Yes Chapter 1 | • Terms and nouns adapted to the Brazilian culture. |
Toolbox | Yes | • Borg Scale was changed to reflect the one currently used in Brazil. • Website to track walk distances was updated. • English resources were updated to Brazilian ones. |
Design of the patient education program
Characteristic | Description |
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Characteristics of those delivering the education | A multidisciplinary team of healthcare providers will deliver the education program, including physiotherapists, physicians, pharmacists, dietitians, and physical educators. These professionals attended capacity building sessions to understand patient and family education and counseling concepts and to increase knowledge, skills, and resources regarding adult learning principles and diabetes care. |
Characteristics of the recipients | This education program was designed for adults with diabetes or prediabetes. |
The setting | This program will be delivered as part of an Exercise and Lifestyle Education Program in two cities in Brazil. Classes will take place in a private room with a maximum of 10 patients in each class, preferably prior to the exercise component of the program. |
Mode of delivery | Sessions will include all four categories of teaching methods reported in the literature (instructor-centered, interactive, individualized techniques, and experiential learning). All participants will receive the patient guide and will be oriented to read different chapters each week. |
Frequency | It will be offered through 18 education classes, and the schedule of these classes is described in Table 5. These classes will be delivered as part of a 12-week education intervention: in the first 4 weeks with two classes per week and the remaining with 1 class per week. |
Duration | Educational sessions will be 30 min long, except for the orientation (1st session) and the diabetes medication session, which will be 1-h long. This change was based on the results of the needs analysis. |
Adherence to delivery intervention | A healthcare team member will register the attendance of participants, as well as their family members, at the starting of each class. Also, a lesson plan was developed for each class, which states program learning outcomes, session learning outcomes, the structure of classes, and suggested activities. |
Detailed description of the intervention content | The content of each class is based on the five pillars of Diabetes College. The classes were structured based on the needs analysis. Topics are described in Table 5. |
Class | Topic | Guide Sections and Chapters | Pages |
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1 | Welcome to the program | Section: Get Active Chapter 1: Getting Active & Starting an Exercise Program | 107–114 |
Resources | 266–267,269,284 | ||
2 | Your Exercise Safety | Section: Get Active Chapter 2: Types of Exercise | 115–134 |
Chapter Resources | 268,273–276 | ||
3 | Your Exercise Safety | Section: Get Active Chapter 3: Your Exercise Safety | 135–154 |
Resources | 270–272,277–278, 286–289 | ||
4 | Manage Your Blood Sugar | Section: Treat Diabetes Chapter 2: Manage Your Blood Sugar | 15–22 |
Resources | 286 | ||
5 | Hypoglycemia/Hyperglycemia | Section: Treat Diabetes Chapters 4: Low Blood Sugar (Hypoglycemia) Chapter 5: High Blood Sugar (Hyperglycemia) | 35–50 |
6 | Resistance Exercise – Day 1 | Section: Get Active Chapter 2: Types of Exercise | 124–133 |
Resources | 285 | ||
7 | Resistance Exercise – Day 2 | Section: Get Active Chapter 2: Types of Exercise | 124–133 |
8 | Know and Control Cardiovascular Disease Risk Factors | Section: Treat Diabetes Chapter 3: Manage Your Diabetes | 23–34 |
9 | Health Problems Caused by Diabetes | Section: Treat Diabetes Chapter 6: Health Problems with Diabetes | 51–72 |
10 | Vision, Goals and Action Plans | Section: Take Control Chapter 1: Vision, Goals and Action Plans | 247–264 |
Resources | 294–296 | ||
11 | Emotional Well Being – Day 1 | Section: Feel Well Chapter 1: Managing Your Feelings and Diabetes Burnout | 225–230 |
12 | Understanding Diabetes Medicines | Section: Treat Diabetes Chapter 7: Diabetes Medicines | 73–106 |
Resources | 265 | ||
13 | How Food Affects Blood Glucose | Section: Eat Healthily Chapter 1: Nutrition Basics | 155–166 |
Resources | 290–293 | ||
14 | Mindful Eating and Intuitive Eating | Section: Eat Healthily Chapter 2: Mindful Eating and Intuitive Eating | 167–172 |
15 | How Food Affects Blood Pressure and Cholesterol | Section: Eat Healthily Chapter 3: Fiber and Glycemic Index Chapter 4: Cholesterol, Triglycerides, and the Mediterranean Diet Pattern Chapter 5: Lower Your Blood Pressure with the DASH Diet Pattern | 173–212 |
16 | Emotional Well Being – Day 2 | Section: Feel Well Chapter 2: Sleep, Stress, Anxiety, and Depression Chapter 3: A Healthy Relationship | 231–246 |
17 | Learning to Read the Food Label | Section: Eat Healthily Chapter 6: Learn How to Read Food Labels | 213–224 |
18 | Graduation | Resources | 297–298 |