DIABETES TECHNOLOGY & THERAPEUTICS Volume 17, Number 6, 2015 ª Mary Ann Liebert, Inc. DOI: 10.1089/dia.2015.0148

COMMENTARY

Treatment Challenges for the Young Patient with Type 1 Diabetes Joseph El Youssef, MBBS,1 and W. Kenneth Ward, MD1,2

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age of people in the modern world are numerically challenged.3,4 These individuals are usually aware of this shortcoming. They may shy away from the use of devices that they perceive as difficult to understand or operate. Identifying the individual with low numeracy may be difficult for the caregiver. Many of us have had the experience of repeatedly working with a patient in attempts to manage the numbers and becoming frustrated with lack of progress—only to finally realize that the patient has low numeracy. Just as in dyslexia, the person with low numeracy may be hesitant to admit the problem. No one wants his or her competence to be in doubt. Due to the screening effect of educational admission requirements, most workers in the medical field have a basic proficiency with math and so may not immediately understand how difficult it can be for a person with low numeracy to operate and fully understand a complex technological device. Based on one’s inherent numerical skills and one’s educational background, it might be difficult to understand a time-series CGM graph, a glycemic rate of change value, or all the little specialized icons that appear on device screens. 3. Cost. Although two studies found CGM, on balance, to be cost-effective,5,6 the costs for CGM can be substantial. Despite the fact that more and more third-party payers are covering these costs, initial uncertainty regarding CGM costs can be daunting for patients and their families. 4. Alarms. Multiple alarms that emanate from an insulin pump or CGM device can be a nuisance.7 When a prospective CGM user is told that he or she will be notified for high and low glucose values, the patient may not always react with the appreciation that the caregiver would hope for. We know of one case in which a CGM alarm was so persistent that the patient put her CGM receiver in her refrigerator in order to get some sleep!

n a very interesting article in the current issue of Diabetes Technology & Therapeutics, Telo et al.1 found that only 28% of young patients with type 1 diabetes (T1D) who were offered continuous glucose monitoring (CGM) accepted the invitation. Compared with a control group from the same diabetes center, the subjects who declined were less likely to use an insulin pump, had a higher hemoglobin A1c level, carried out blood glucose (BG) monitoring less often, were generally less adherent to their diabetes program, had a higher rate of family conflict related to diabetes, and returned lower quality of life values by questionnaire. This article strongly suggests that most young T1D patients and their families believe that the benefits of CGM may not outweigh efforts required to implement CGM. In this commentary, we explore reasons that might explain these beliefs. Most patients find it unwieldy and cumbersome to wear even one device. A requirement for two devices (e.g., a pump and a CGM device) is, of course, even more difficult. Our research group carried out many experiments with an artificial endocrine pancreas in subjects with T1D. In our studies, there has been a need to carry on one’s person at least one CGM device (sometimes two), two portable pumps (one for insulin and one for glucagon), and a smartphone into which the control algorithm was programmed. Despite the fact that these subjects were highly motivated, many told us, not surprisingly, that the use of more than one device was acceptable only for a few days.

Treatment Challenges for the Prospective CGM User

1. Body image issues. Body image is a highly individual issue; some people are quite self-conscious about wearing a medical device, whereas others proudly show it off. As reported by Ritholz et al.,2 for many people with T1D, wearing a medical device on one’s body was felt to be an affront to one’s personal body image and also an impediment to normal social interactions, especially in females. 2. The need to continually deal with numbers. Over the last decade, there have been several articles that addressed the effects of learning disabilities on managing one’s diabetes. It turns out that a substantial percent1 2

General Treatment Challenges for the Young Patient with T1D

Oregon Health and Science University, Portland, Oregon. Pacific Diabetes Technologies, Inc., Portland, Oregon.

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1. It is widely accepted that depression is common in T1D. As shown by Helgeson et al.,8 other psychological

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EL YOUSSEF AND WARD

findings include anger, anxiety, fatigue, and bewilderment. Some authors found a high rate of disturbed eating behavior in patients with T1D.9 As a method of coping with the condition, some patients with T1D become disengaged.10 It is common for young patients with T1D to use avoidance as a coping strategy.11 Some patients feel that diabetes decreases their ability to be accepted by their peers. Having diabetes is stressful—in some cases, very stressful—for the patient and for the family of the patient. a. In a Swiss study, Landolt et al.12 studied 38 children and young people. They found that 24% of mothers and 22% of fathers had features of posttraumatic stress syndrome within 6 weeks of their child’s diagnosis. b. A stressor such as diabetes will exacerbate preexisting family dysfunction. Learning how to properly use a diabetes-related device is difficult. Imagine how difficult it is for any of us to learn how to use a new device for the first time (think a musical instrument, a smartphone, a home theater system, or dashboard buttons in a new car). One of us finds it very challenging to carry out on ostensibly simple task—changing the time on the digital screen of his kitchen stove. This degree of frustration and anxiety is magnified when the device in question is a medical device. Being unable to operate a device in one’s kitchen is frustrating; making mistakes in the operation of a CGM device or insulin pump can lead to serious consequences and is very anxiety provoking. It is difficult for some patients to grasp or accept the idea that it is necessary to use BG tests to verify abnormal CGM results. People with diabetes have learned to ‘‘trust the numbers’’—is it any surprise that some patients rely on the CGM numbers and fail to verify these numbers with BG tests? Although the accuracy of CGM is increasing in recent years,13 verification of abnormal CGM values is necessary in devices sold in the United States. Barriers to BG testing are common. One of the best discussions of these barriers is found in the book Diabetes Burnout by Polonsky.14 Some of these barriers include: ‘‘Your meter makes you feel bad about yourself’’; ‘‘Monitoring seems pointless (you believe there is nothing you can really do about your blood glucose results anyway)’’; ‘‘Checking your blood glucose reminds you that you have diabetes .’’; ‘‘Your meter... tells you what you can and cannot do’’; ‘‘Monitoring serves as an opportunity for your friends and family to bother you’’; and ‘‘None of your health care providers ever do anything with the results anyway.’’14 Barriers to exercise in T1D are also common. In a very interesting article, Lascar et al.15 identified the following barriers: inadequate access to facilities, embarrassment regarding body image, and diabetes-specific barriers such as insufficient knowledge about how to manage diabetes before, during, and after exercise. Hypoglycemic unawareness is serious and common. One report found that a period of CGM usage in ad-

olescents increased the (previously deficient) adrenergic response to hypoglycemia.16 10. An important lesson learned from the T1D Exchange is that severe hypoglycemia is more common than most of us thought, especially in those with a duration of T1D that exceeds 40 years, 18.6% of whom have at least one severe hypoglycemia event per year.17 T1D patients who are < 6 years of age are also at high risk for severe hypoglycemia.18 11. Some patients have an inordinate fear of hypoglycemia and, for this reason, prefer to let their BG level run high. One report found an association between fear of hypoglycemia and anxiety not related to diabetes.19 Treatment Recommendations for Providers Who Treat Young Patients with T1D

1. Enlist the help of other family members as allies but don’t rely exclusively on them—the person whose cooperation is most crucial is the patient. 2. If the patient has a job, enlist the help of coworkers, especially for emergencies. Corollary: If the patient is in school, enlist the help of key adult staff workers. 3. It is important that an ongoing relationship between the patient and a diabetes educator is established and maintained over time. It is very difficult for a patient to learn how to use a pump or CGM device without a great deal of help and repetition from a professional. a. The worker who is doing the teaching must assess literacy and numeracy. b. In order to detect and understand a patient’s limitations regarding numeracy or literacy, give the patient permission to admit these shortcomings. Don’t expect perfection. 4. If your patient rejects your recommendation for technological treatment, don’t get too upset. After all, the choice is ultimately the patient’s. Sometimes it takes a great deal of time and repetition for a patient to accept a technology. We believe that patients with mild learning disabilities can successfully learn to use pumps and sensors, but this success requires a close, long-term relationship with an educator, including periodic refreshers. 5. Don’t expect perfection—explain to your patients that regardless of how hard they work on their diabetes, sometimes the readings will be out of range. 6. For insulin pumpers, make sure that the patient fully understands the two key ratios: the insulin-to-carbohydrate ratio (ICR) and the correction (insulin sensitivity) factor (CF). Some practitioners might argue that, as long as the carbohydrate gram numbers are correctly entered for meals and snacks, it is not necessary for the patient to know the ICR value that is programmed into his or her pump. On the contrary, we believe that such knowledge is necessary. An example of the importance of knowing one’s ICR and CF is the situation in which a pumper must temporarily revert to multiple daily injections. 7. Make sure that your T1D patient has an opportunity to meet other patients in his or her age group, such as those in a diabetes support group or diabetes camp. Feeling alone can lead to despair.

CHALLENGES IN T1D

8. Allow the patient to have periodic short-lived exemptions from strict dietary rules (although not from glucose testing). 9. Try to avoid missing, or failing to treat, depression. 10. Do your best to make sure that your patient does not purposely withhold insulin as a means to control weight. 11. For people who are inactive, try to identify barriers to exercise. 12. For patients who use CGM in the United States, remind them (more than once) that the intended use of CGM is as an adjunct to BG monitoring. 13. Try to identify patients who have hypoglycemic unawareness. In our experience, such individuals often find CGM hypoglycemia alarms to be helpful and reassuring. 14. Patients who use CGM in the United States must be reminded that acetaminophen will often cause the appearance of hyperglycemia. They should also be informed that many over-the-counter cold medications contain acetaminophen. Sensors that use a redox mediator and use a very low polarizing voltage do not have this limitation, but no such device is marketed currently in the United States.

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Acknowledgments

We gratefully acknowledge Dr. Jessica R. Castle for her review of the manuscript. Author Disclosure Statement

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W.K.W. is an employee and stockholder of Pacific Diabetes Technologies, Inc., and an inventor on several patents regarding continuous glucose monitoring and the artificial endocrine pancreas. J.E.Y. reports no financial conflicts of interest.

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References

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1. Telo GH, Volkening LK, Butler DA, et al.: Salient characteristics of youth with type 1 diabetes initiating continuous glucose monitoring. Diabetes Technol Ther 2015;17: 373–378. 2. Ritholz MD, Smaldone A, Lee J, et al.: Perceptions of psychosocial factors and the insulin pump. Diabetes Care 2007;30:549–554. 3. Cavanaugh K, Huizinga MM, Wallston KA, et al.: Association of numeracy and diabetes control. Ann Intern Med 2008;148:737–746. 4. Marden S, Thomas PW, Sheppard ZA, et al.: Poor numeracy skills are associated with glycaemic control in Type 1 diabetes. Diabet Med 2012;29:662–669. 5. Huang ES, O’Grady M, Basu A, et al.: The cost-effectiveness of continuous glucose monitoring in type 1 diabetes. Diabetes Care 2010;33:1269–1274. Erratum in Diabetes Care 2010;33:2129. 6. McQueen RB, Ellis SL, Campbell JD, et al.: Costeffectiveness of continuous glucose monitoring and inten-

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sive insulin therapy for type 1 diabetes. Cost Eff Resour Alloc 2011;9:13. Low KG, Massa L, Lehman D, et al.: Insulin pump use in young adolescents with type 1 diabetes: a descriptive study. Pediatr Diabetes 2005;6:22–31. Helgeson VS, Snyder PR, Escobar O, et al.: Comparison of adolescents with and without diabetes on indices of psychosocial functioning for three years. J Pediatr Psychol 2007; 32:794–806. Lasˇait_e L, Ostrauskas R, Zˇalinkevicius R, et al.: Profile of mood states in adult type 1 diabetes mellitus men and women with disease onset in childhood and in adulthood. J Pediatr Endocrinol Metab 2015;28:279–285. Tuncay T, Musabak I, Gok DE, et al.: The relationship between anxiety, coping strategies and characteristics of patients with diabetes. Health Qual Life Outcomes 2008; 6:79. Landolt MA, Vollrath M, Ribi K: Predictors of coping strategy selection in paediatric patients. Acta Paediatr 2002; 91:954–960. Landolt MA, Vollrath M, Ribi K, et al.: Incidence and associations of parental and child posttraumatic stress symptoms in pediatric patients. J Child Psychol Psychiatry 2003;44:1199–1207. Christiansen M, Bailey T, Watkins E, et al.: A newgeneration continuous glucose monitoring system: improved accuracy and reliability compared with a previous-generation system. Diabetes Technol Ther 2013;15:881–888. Polonsky WH: Diabetes Burnout: What to Do When You Can’t Take It Anymore. Alexandria, VA: American Diabetes Association, 1999. Lascar N, Kennedy A, Hancock B, et al.: Attitudes and barriers to exercise in adults with type 1 diabetes (T1DM) and how best to address them: a qualitative study. PLoS One 2014;9:e108019. Ly TT, Hewitt J, Davey RJ, et al.: Improving epinephrine responses in hypoglycemia unawareness with real-time continuous glucose monitoring in adolescents with type 1 diabetes. Diabetes Care 2011;34:50–52. Weinstock RS, Xing D, Maahs DM, et al.: Severe hypoglycemia and diabetic ketoacidosis in adults with type 1 diabetes: results from the T1D Exchange clinic registry. J Clin Endocrinol Metab 2013;98:3411–3419. Cengiz E, Xing D, Wong JC, et al.: Severe hypoglycemia and diabetic ketoacidosis among youth with type 1 diabetes in the T1D Exchange clinic registry. Pediatr Diabetes 2013; 14:447–454. Anderbro T, Gonder-Frederick L, Bolinder J, et al.: Fear of hypoglycemia: relationship to hypoglycemic risk and psychological factors. Acta Diabetol 2014 December 21 [Epub ahead of print]. doi: 10.1007/s00592-014-0694-8.

Address correspondence to: W. Kenneth Ward, MD Pacific Diabetes Technologies, Inc. 2828 SW Corbett Avenue, Suite 211 A Portland, OR 97201 E-mail: [email protected]

Treatment challenges for the young patient with type 1 diabetes.

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