Type 1 diabetes mellitus (T1DM) is a complex and challenging disease due to the necessary integration of daily medical tasks (e.g., blood glucose monitoring) and lifestyle modifications. A substantial percentage of youths are nonadherent to these demands.1–3
Although some nonadherent youths experience few negative consequences, most are at risk for medical complications, including diabetic ketoacidosis (DKA), neuropathy, nephropathy, and others.4,5
Currently, DKA represents the most acute common cause of hospitalization and death in children with diabetes,6,7
with estimates of fatality rates at 1% to 2% for youths who experience a DKA episode.
Approximately 30–50% of youths with T1DM are in poor control.2
Indirectly, nonadherence may impact clinical decisions made by health care providers, such as prescribing incorrect insulin doses and excessive use of health care services.8,9
Improving adherence to the complex routine may result in improved glycemic control,10
which in turn would translate to decreased personal distress and societal cost.
Four primary barriers to adherence to the regimen have been identified.11
One of these barriers is membership in certain groups such as the underinsured, low socioeconomic status (SES), and ethnic minorities. The other barriers are conflict between typical developmental and regimen tasks, family challenges to providing appropriate supervision and transference of responsibility for tasks, and demands of the regimen overwhelming the capacity of the family.
Certain demographic factors have been implicated in regimen nonadherence and poor glycemic control. For example, belonging to a lower SES group has been associated with more hospital admissions for youths with T1DM.12
Other researchers have also found that youths from lower SES groups are in poorer glycemic control when compared with higher SES peers with diabetes.13,14
It has also been reported that the number of life changes was inversely related to adherence and glycemic control in youths.15
Youths with diabetes must manage the increasing demands of adolescence (i.e., becoming independent and separating from parents) with diabetes regimen tasks. Several researchers have demonstrated that, as family relationships change,16
adherence declines in this age group.3
It may be that adherence declines in this age group, as youths place a higher priority on social development rather than health, which is typical during this stage of development.16,17
Supervision and transfer of responsibility for regimen tasks has been shown to be related to poor metabolic control.18,19
Specifically, research has shown that, when adolescents are more responsible for diabetes management and parents are less involved, glycemic control suffers. Further, other research has demonstrated that perceived support is also related to health outcome in youths with diabetes. For example, perceived parental negativity was associated with a higher likelihood of experiencing an episode of DKA, just as perceived warmth was associated with less risk of DKA.20
If parents are less emotionally supportive and provide less supervision, youths are likely to make more mistakes in their care,21,22
which can lead to serious health outcomes.
Addressing the aforementioned barriers in order to reduce nonadherence and improve glycemic control through effective psychological treatments is critical. One treatment program that has shown efficacy is Behavior Family Systems Therapy (BFST),23,24
an intensive, diabetes-specific psychotherapeutic intervention, which has shown improvements in family conflict, adherence, and hemoglobin A1c (HbA1c). Interventions with non-adherent youths and families are most successful when they directly targeted maladaptive parent-and-child interactions around the diabetes regimen.25,26
Unfortunately, numerous barriers exist that preclude intensive face-to-face intervention (e.g., economics and geography).
One innovative approach that addresses access barriers is Telehealth Behavioral Therapy (TBT). Telehealth interventions permit providers to assist patients in their home environment without contending with logistical challenges of scheduling in-person contact.27–29
Additionally, telehealth allows providers to increase availability over a wider geographical area, because patients no longer have to travel to receive services.30
Likewise, it is a low-cost intervention that can be used in conjunction with usual diabetes care in order to improve glycemic control.11
Preliminary data suggest that TBT may be effective in increasing adherence to medical regimens and improving health status. For example, in adults, several examples demonstrate that receiving treatment via telehealth is associated with improved glycemic control,31
reduced diabetes-related consequences, and increased self-efficacy related to the regimen.32
Studies demonstrate the effectiveness of TBT for youths with T1DM. A case study33
documented improved HbA1c and family dynamics. In an open trial of 27 adolescents,35
youths decreased their HbA1c by 0.7% and had no diabetes-related hospitalizations. These studies illustrate that TBT has promise in improving adherence to the medical regimen, glycemic control, and family dynamics by addressing barriers to obtaining treatment and to the medical regimen. Conversely, two randomized controlled trials did not find improvement on HbA1c following telehealth intervention.36,37
Furthermore, a program providing bimonthly telephone contacts to youths with T1DM did not result in improvement in glycemic control.37
They posit that more frequent contact with a focus on individual problems may improve outcome for these youths. Similarly, one research group36
provided an average of 16 phone contacts over a year with a median interval of 3 weeks between calls. They reported improvements in self-efficacy, but not in HbA1c for any group. Further, they noted that barriers to insulin usage were associated with HbA1c, suggesting this as a possible point for intervention.
The present study expands the literature in this area by presenting results from a pilot trial of the first randomized waitlist controlled trial of TBT for youths in very poor glycemic control. The specific TBT protocol38
used in this study utilized some of the principles of BFST.23
Areas addressed in the protocol include problem solving, behavioral contracting, communication skills, cognitive restructuring, and family structuring (detailed session content discussed later). Youths were in very poor glycemic control prior to study entry. Participants were provided with thrice weekly phone contacts. We chose to deliver services via telephone to ensure that all participants would have easy access to treatment. Previous attempts in our clinic have used videoconferencing with little success, as many of our participants did not have the phone lines in their area to support the technology. Contacting families three times per week allowed therapists to monitor progress more closely and assist families with problem solving for specific issues. We hypothesized that youths participating in active treatment would experience an increase in adherence to the diabetes regimen, a decrease in family discord, and a decrease in HbA1c.