Type 1 diabetes mellitus: Bridging the knowledge-action gap

Type 1 diabetes mellitus (T1DM) is unique in its treatment, in that patients must perform medical procedures (inject insulin and check blood glucose [BG]) and take important medical decisions (estimate carbohydrate content of meals, calculate pre-meal insulin doses, and judge the need for additional snacking or insulin dose reduction to prevent exercise-induced hypoglycemia) several times each day. Treatment success depends on the patient’s ability to learn and adhere to each aspect of diabetes self-management (DSM). Thus, treatment needs to be individualized, based on the interaction of multiple factors including literacy, intelligence, socioeconomic status, and school/work schedule of the patient and family.

In this issue of the journal, Okello et al. present results of a study of adherence to treatment in 91 caregivers of children with T1DM in Kenya, using structured interviewer-administered questionnaires.^[1] In their study, only 39.6% of patients adhered to all aspects of T1DM management. Adherence was highest for insulin therapy (75.8%) and lowest for self-monitoring of BG (SMBG) (27.5%). Adherence to diet and physical exercise was 37.4% and 32.9%, respectively. These findings are not surprising and are consistent with other studies reporting poor overall adherence, with varying levels of adherence across different aspects of treatment.^[2,3]

More objective methods of studying adherence include analyzing electronic data from the patient’s glucometer, continuous glucose monitoring (CGM) device or insulin pump, and studying pharmacy fill data to know how consistently the patient obtains insulin and supplies for SMBG.^[4] Merely administering insulin or checking BG regularly does not guarantee good results unless it is done correctly, and in the case of SMBG, followed up with appropriate action. Thus, combining approaches, e.g., questionnaire with glucometer or CGM data and glycated hemoglobin, to quantify the degree of control, would give a clearer picture.

Insights from studies evaluating factors correlated with adherence must be incorporated in management strategies to improve patient outcomes. These include factors related to the medical facility, provider-patient relationship, person with T1DM (PwD), family members, peers, and the school where children spend a large part of their day.

A multidisciplinary team (MDT) with a pediatric endocrinologist, nutritionist, mental health specialist, T1DM educator, and social worker is needed for effective management of T1DM. Team members must have patience, compassion, and excellent communication skills. They should have in-depth knowledge of the subject and stay up to date with rapid technological advances so that they can promote newer proven technologies in appropriate cases. The initiative by the Indian Society for Pediatric and Adolescent Endocrinology (ISPAE) to start an online certificate course for pediatric T1DM educators has fulfilled a long-felt need.^[5]

Counseling at diagnosis should focus on discussing fears and doubts that patients may not express, but which, if not addressed, can impede adherence.^[6] These include the following:

1. Mitigating the sense of guilt arising from both the causation of T1DM and subjecting the child to injections and fingerpicks

2. Putting to rest false hopes by convincing patients that there is currently no cure for T1DM, nor a substitute for injectable insulin, and that alternative medicines have no role

3. Addressing worries about the future with reassurance that the PwD can do everything that they did before the onset of T1DM, that long-term complications are preventable, and career and married life will not be affected to any great degree, provided the treatment plan is adhered to.

This counseling is necessary to set their minds at ease, making them more receptive to learning about DSM.

Patients should be encouraged to participate in support groups to get the confidence that they are “not alone” and enable learning from others’ experiences.^[7] Efforts should be made to improve awareness about T1DM in society and remove the associated stigma, which is a common factor affecting adherence.^[8,9] When better insulins or devices are required to improve the outcome in patients who cannot bear the economic burden, financial help can be arranged from social service organizations since health insurance in India may not cover T1DM management.^[10]

Education in DSM for all those who care for the PwD at home and in school is mandatory. The content and methods of imparting education should be improvised to suit individual needs and capabilities. Education should be reinforced, updated, and evaluated at regular intervals. The MDT must maintain frequent contact with patients using telemedicine or periodic home visits, and if possible, provide a 24 × 7 helpline. Hand holding and a buddy system, where a newly diagnosed patient is tagged to a qualified diabetes educator or a more senior, knowledgeable family member, helps in the initial months as patients often lack the confidence to execute decisions independently.

Psychosocial problems are common in children with T1DM in India.^[11] To improve adherence in children, gadgets like the injection port if available, distraction methods (toys and videos), simple rewards, and a calm atmosphere help reduce the pain and stress associated with injections and SMBG. The use of CGM makes home monitoring more acceptable and informative while considerably reducing the risk of severe, prolonged nocturnal hypoglycemia. Children should be encouraged to lead a normal childhood, without compromising on DSM in school or during physical activity. This is possible only if secrecy is avoided. Classmates and friends must know that their colleague has T1DM. When revealing this, one must simultaneously highlight that the PwD can do everything that others do and, at the same time, perform all diabetes-related tasks, for which they deserve admiration, not sympathy. The school must be willing and equipped to cooperate with various aspects of DSM. Current shortcomings in school care of T1DM in India and potential solutions have been discussed in recent issues of this journal.^[12,13]

During adolescence, hormonal changes increase insulin resistance, making it harder to manage BG.^[14] Adolescents prioritize normalcy and social life. They may engage in risk-taking behaviors, such as smoking, alcohol consumption, and drug use. Falsifying reports, intentional skipping of insulin, or even overdosing on insulin are manifestations of a disturbed mind. There is a higher incidence of eating disorders, anxiety, depression, and suicidal tendencies as compared to peers without T1DM. The constant demands of DSM may lead to diabetes distress or burnout, as even best efforts do not always bear fruit. The MDT has an important role in screening for and managing these issues at each clinic visit. Motivational-interviewing style of communication and behavioral self-regulation interventions have been shown to improve adherence to DSM in adolescents.^[15,16]

During adolescence, there should be a gradual shift from total parental dependence to a collaborative, shared approach or interdependence, and finally, total autonomy or independence. Unobtrusive adult supervision throughout adolescence is important. If parents relinquish responsibility early, it leads to poorer adherence and deteriorating control. Parents should be authoritative, not authoritarian. They should avoid nagging, criticism, and blame, and instead discuss corrective steps when things are going wrong and express appreciation when things are going as desired.

T1DM affects all members of the family.^[17] Mothers are often the primary managers, which can lead to stress and burnout.^[6] At times, their overenthusiasm can lead to conflicts. Active involvement by fathers, though linked to better outcomes, particularly during adolescence, is unfortunately rare. Siblings may feel neglected or envious as excessive attention is given to the child with T1DM, or they may feel resentful at being made to adhere to a disciplined lifestyle.^[18] Grandparents may pamper the child, and their misconceptions about T1DM may set up conflicts in the family. The MDT must be alert to all these possibilities and proactively look for and address them. All family members must be included in counseling sessions. To boost their morale, they should be encouraged to identify positive changes in their lives (switch to a healthy diet and participation in regular physical activities) that have resulted from T1DM management.

In closing, it is important to recognize that issuing an evidence-based prescription for T1DM is only the first step.Practical barriers must be addressed so that the prescription can be conveniently and consistently implemented in the unpredictable and complex daily lives of the patient and family. This calls for a fine balance between science and the art of individualized care.