The significant increase in the complexity of diabetes care over the last two decades
is associated with a high economic burden (1), with almost one-quarter of adults with
diabetes burdened with significant out of pocket expenses (OOPEs) (2). Little is known
about the OOPEs for families of adolescents and young adults with type 1 diabetes.
We therefore report the diabetes-related OOPEs for these families from the SEARCH
for Diabetes in Youth (SEARCH) study and their association with demographic, socioeconomic,
clinical, and health care characteristics.
A detailed description of the SEARCH study methods has previously been published (3).
Participants had a baseline visit shortly after diabetes diagnosis and one or more
follow-up visits; this report includes data from a follow-up visit between November
2011 and July 2015, at which time participants’ diabetes duration was >5 years. Participants
≥18 years old or a parent/guardian of participants <18 years old completed surveys,
including questions about sociodemographics, diabetes treatment, health insurance,
and OOPEs. The primary outcome was OOPEs in a typical month. Monthly OOPEs were captured
in intervals of unequal lengths expressed in 2013 U.S. dollars as $0, $1–19, $20–49,
$50–99, $100–199, and ≥$200.
Descriptive analyses were based on the midpoint of each interval. The midpoint of
the last interval (≥$200) was estimated at $278, based on MarketScan data (4). Interval-censored
regression models were fit assuming a Weibull distribution to evaluate the association
between categories of OOPEs and covariates. The relationship between OOPEs and each
covariate was assessed after adjustment for nonmodifiable characteristics (model 1),
modifiable clinical factors (model 2), and health insurance categories (model 3).
SAS 9.4 was used for analyses. An a priori α = 0.05 was used to assess statistical
significance.
After exclusion of 221 participants with missing OOPEs data from the 2,384 participants
with type 1 diabetes who completed a follow-up visit, 2,163 participants were included
in these analyses. At the visit, mean ± SD age was 17.0 ± 4.7 years and mean diabetes
duration was 7.9 ± 1.9 years. The median monthly diabetes-related OOPE was estimated
at $64.60. Approximately 60% of participants had OOPEs of at least $50 per month,
and 40% at least $100 per month.
Table 1 shows the adjusted association of OOPEs presented as an OOPE rate relative
to the reference group and 95% CIs. Participants whose parents had not completed high
school had lower OOPEs compared with participants whose parents had at least a high
school education (model 3: OOPE rate 0.55 [95% CI 0.34, 0.88]). OOPEs were lower for
families with household income of <$25,000 compared with families with household income
of $50,000–74,000 (model 3: OOPE rate 0.66 [95% CI 0.49, 0.88]). OOPEs were higher
for families who received diabetes care from an adult endocrinologist or family practitioner
versus a pediatric endocrinologist (model 3: OOPE rate 1.47 [95% CI 1.14, 1.9] and
1.69 [95% CI 1.07, 2.67], respectively). Insulin injections were associated with lower
OOPEs than insulin pumps (model 3: OOPE rate 0.82 [95% CI 0.69, 0.98] for regimens
including long-acting insulin and 0.72 [95% CI 0.52, 0.98] for regimens not including
long-acting insulin). Continuous glucose monitoring (CGM) use was associated with
higher OOPEs (model 3: OOPE rate 1.35 [95% CI 1.08, 0.1.68]). OOPEs were lower in
those who had public health insurance (OOPE rate 0.22 [95% CI 0.18, 0.27]) compared
with those with private health insurance.
Table 1
Adjusted monthly diabetes-related OOPE rates for the associations with demographic
and treatment variables among participants with type 1 diabetes, using interval-censored
regression models
Variable (%)
Model 1
Model 2
Model 3
Monthly OOPE rate (95% CI)
P
‖
Monthly OOPE rate (95% CI)
P
‖
Monthly OOPE rate (95% CI)
P
‖
Age (in years)
0.99 (0.97, 1.01)
0.50
1.0 (0.98, 1.03)
0.93
1.00 (0.75, 1.33)
0.79
Diabetes duration (in years)
1.00 (0.96, 1.05)
0.99
1.0 (0.95, 1.05)
0.93
1.01 (0.99, 1.01)
0.51
Race/ethnicity
Non-Hispanic black (11)
0.66 (0.51, 0.85)
0.006
0.76 (0.57, 1)
0.12
1.00 (0.75, 1.33)
0.60
Hispanic (12)
0.77 (0.6, 0.99)
0.79 (0.6, 1.04)
0.85 (0.65, 1.11)
Other (2.5)
0.82 (0.51, 1.33)
1.07 (0.63, 1.84)
0.82 (0.48, 1.4)
Non-Hispanic white (74.5)
Reference
Reference
Reference
Sex
Female (50.1)
0.92 (0.78, 1.07)
0.28
0.88 (0.75, 1.04)
0.14
0.88 (0.75, 1.04)
0.14
Male (49.9)
Reference
Reference
Reference
Level of parental education
Bachelor’s degree or more (51.6)
1.45 (1.1, 1.91)
0.0001
1.3 (0.97, 1.74)
0.002
1.05 (0.82, 1.33)
0.01
Some college (33.3)
1.11 (0.85, 1.46)
1.06 (0.8, 1.41)
0.9(0.68, 1.19)
Less than high school (3.8)
0.59 (0.37, 0.93)
0.53 (0.33, 0.87)
0.53 (0.33, 0.85)
High school graduate (11.25)
Reference
Reference
Reference
Median household income
$75,000+ (38)
1.27 (1.01, 1.61)
<0.0001
1.22(0.96, 1.56)
<0.0001
1.04(0.82, 1.32)
0.004
$50,000–74,000 (16.1)
Reference
Reference
Reference
$25,000–49,000 (16.9)
0.71 (0.54, 0.93)
0.73 (0.55, 0.97)
0.82 (0.62, 1.08)
<$25,000 (16)
0.37 (0.28, 0.49)
0.39 (0.29, 0.52)
0.61 (0.45, 0.82)
Did not know/refused (13.1)
0.89 (0.66, 1.2)
0.88 (0.64, 1.2)
0.89 (0.65, 1.21)
Type of diabetes provider
Adult endocrinologist (16.9)
1.51 (1.17, 1.94)
0.03
1.62 (1.24, 2.12)
0.005
1.44 (1.11, 1.87)
0.003
Family practice doctor (3.7)
1.32 (0.85, 2.05)
1.72 (1.07, 2.77)
1.98 (1.21, 3.22)
None/no source of medical care (1.2)
1.01 (0.49, 2.08)
1.08 (0.48, 2.41)
0.59 (0.24, 1.49)
Other (19.3)
1.10 (0.89, 1.35)
1.12 (0.9, 1.4)
1.05 (0.85, 1.31)
Pediatric endocrinologist (58.9)
Reference
Reference
Reference
HbA1c, age-specific†
Intermediate (40.7)
1.05 (0.8, 1.38)
0.72
0.96 (0.73, 1.27)
0.54
Poor (47.1)
1.11 (0.84, 1.46)
1.07 (0.8, 1.42)
Good (12.3)
Reference
Reference
BMI
<85th percentile (66.6)
Reference
0.26
Reference
0.32
85th–95th percentile (20.8)
0.93 (0.76, 1.13)
0.95 (0.78, 1.16)
>95th percentile (12.6)
0.82 (0.64, 1.05)
0.85 (0.66, 1.08)
Insulin regimen
Insulin injections including long acting (35.6)
0.84 (0.7, 1.01)
0.01
0.78 (0.65, 0.94)
0.004
Insulin injections excluding long acting (8.3)
0.63 (0.45, 0.87)
0.63 (0.45, 0.86)
Pump therapy (56.1)
Reference
Reference
Frequency of SMBG
Did not use a glucometer (2.2)
1.06 (0.59, 1.89)
0.37
1.06 (0.59, 1.89)
0.45
Less than once a day, only when sick (12.6)
1.09 (0.84, 1.42)
1.09 (0.84, 1.42)
1–2 times a day (10.4)
0.99 (0.75, 1.32)
0.99 (0.75, 1.32)
3 times a day (13.6)
1.13 (0.87, 1.45)
1.13 (0.87, 1.45)
4–6 times a day (50.4)
Reference
Reference
≥7 times a day (10.8)
1.38 (1.03, 1.85)
1.26 (0.94, 1.69)
CGM use
Yes (17.4)
1.29 (1.03, 1.62)
0.03
1.35 (1.08, 1.68)
0.01
No (78.3)
Reference
Reference
Health insurance
None (3.3)
0.83 (0.5, 1.38)
<0.0001
Other/Medicaid/Medicare (25.7)§
0.22 (0.18, 0.27)
Private (71)
Reference
Model 1 examines OOPE with adjustment for nonmodifiable characteristics including
age, diabetes duration, race/ethnicity, sex, highest level of parental education,
household income, type of diabetes provider, and SEARCH site. Model 2 builds on model
1 with addition of modifiable clinical variables including HbA1c, BMI, insulin regimen,
and frequency of SMBG and CGM use. Model 3 builds upon model 2, controlling for health
insurance.
SMBG, self-monitoring of blood glucose.
†
We defined glycemic control based on the following HbA1c level cutoffs. For participants
<18 years old, glycemic control is good with HbA1c <7.5%, intermediate with HbA1c
7.5% to <9%, and poor with HbA1c >9.0%. For participants ≥18 years old, glycemic control
is good with HbA1c <7%, intermediate with HbA1c 7% to <9%, and poor with HbA1c >9.0%.
§
Other insurance categories include school-based insurance and Tribe/Indian Health
Service.
‖
P value of the omnibus test for comparing the different subgroups with the reference.
This study is subject to limitations. The survey was cross-sectional, and data on
OOPEs and treatment measures were obtained from self-reported surveys. The data were
obtained between 2011 and 2015 and might not account for higher insulin costs and
newer diabetes technologies that evolved since then (5). Additionally, the OOPEs reported
are only related to diabetes medications and supplies and do not account for copays
or coinsurance for clinic or hospital visits and insurance premiums. We also do not
report on other expenses that might be incurred, such as productivity losses due to
missed work or school. Lastly, our descriptive analyses were based on the midpoint
of each cost interval. Since the intervals are not equal, this could misestimate the
variation in the amount paid between individuals. The midpoint for the highest interval
was derived from empirical data (4) and may underestimate OOPEs given the long tail
of high expenditures.
Our findings suggest that most adolescents and young adults with type 1 diabetes have
some OOPEs related to diabetes medications and supplies. These OOPEs vary with different
demographic and clinical factors. Future studies may explore causal pathways that
drive higher OOPEs and whether OOPEs create barriers and disparities in health care
utilization. This will ultimately help develop interventions to improve access to
health care for underserved populations.