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To evaluate parents’ goals and parents’ perceptions of physicians’ goals for blood glucose and HbA1c in children and adolescents with type 1 diabetes.
In a cross-sectional observational assessment, parents (80% mothers) of 153 children/adolescents (56% female), aged 12.9 ± 2.3 years (range 8–16 years) with Type 1 diabetes for 6.3 ± 3.5 years, completed surveys regarding their goals and their perceptions of physicians’ goals for their child’s blood glucose and HbA1c levels.
Children/adolescents had a mean HbA1c of 69 ± 16 mmol/mol (8.4 ± 1.4%) and blood glucose levels checked 3.8 ± 1.2 times/day; 23% received pump therapy. Almost half of parents reported a blood glucose goal of 130 (80–180) mg/dl [7.2 (4.4–10) mmol/l]; 75% of parents reported a HbA1c goal of 42–64 mmol/mol (6–8%). The HbA1c level was significantly lower when parents reported HbA1c goals ≤ 64 mmol/mol (≤ 8%) vs. > 64 mmol/mol (> 8%) [67 ± 14 mmol/mol (8.3 ± 1.2%) vs. 76 ± 20 mmol/mol (9.1 ± 1.8%), respectively, P = 0.02]. Parents’ blood glucose and HbA1c goals were tightly linked with parents’ perceptions of physicians’ blood glucose and HbA1c goals (69% concordant, P < 0.0001; 88% concordant, P < 0.0001, respectively).
There was a significant association between lower parent HbA1c goals and lower child/adolescent HbA1c. Further, parents appear to set glycaemic goals based upon their perceptions of physician goals. Future studies should assess the relationship between parents’ perceptions of health-care providers’ goals and health-care providers’ actual goals and the impact of unified family/provider goal-setting on glycaemic control.
Goal-setting theory predicts that specific goals will lead to better performance compared with no goal-setting . In paediatric Type 1 diabetes, this applies to treatment goals aimed at normalizing growth and development and preventing complications by optimizing HbA1c levels . For children/adolescents with Type 1 diabetes, blood glucose (BG) and HbA1c goals should be realistic and attainable, otherwise it is unlikely that such goals will be achieved [3, 4].
The International Society for Pediatric and Adolescent Diabetes (ISPAD) recommends an HbA1c < 58 mmol/mol (< 7.5%) for children/adolescents ≤ 18 years old . The American Diabetes Association (ADA) recommends age-specific HbA1c targets: ages 0–6 years, HbA1c < 69 mmol/mol (< 8.5%); ages 6–12 years, < 64 mmol/mol (< 8%); ages 13–19 years, < 58 mmol/mol (< 7.5%) . Studies suggest that HbA1c may vary according to health-care providers’ recommendations  and parents’ glycaemic goals .
Parent support and involvement are associated with better adherence for children/adolescents with Type 1 diabetes [9–12]. Therefore, we sought to assess the impact of parents’ glycaemic goals on HbA1c in children/adolescents with Type 1 diabetes. We also assessed parents’ perceptions of physicians’ goals. We hypothesized that more optimal parent glycaemic goals would be associated with more optimal glycaemic outcomes in their children.
Participants were children/adolescents (ages 8–16 years) with Type 1 diabetes (duration ≥ 6 months and daily insulin requirements ≥ 0.5 units/kg) and their parents/guardians. Patients with major psychiatric disorders (e.g. major depression) were excluded. The study protocol was approved by the Institutional Review Board and written informed consent/assent were obtained from parents/youths.
We aimed to enrol around 150 participants. Over 4 months, we approached 174 eligible patients during routine clinic visits; 154 (89%) agreed to participate. One participant was excluded after further review uncovered MODY. Twenty patients declined participation (no time, n = 10; no interest, n = 8; confidentiality concerns, n = 2). Those who declined were similar to participants in age and duration of diabetes. The final sample consisted of 153 children/adolescents.
Study visits occurred on clinic appointment days. Parents completed a paper survey that included the following questions: What is your goal for your child’s blood sugar? What is your goal for your child’s HbA1c? What is your doctor’s goal for your child’s blood sugar? What is your doctor’s goal for your child’s HbA1c? A multidisciplinary team of paediatric endocrinologists, psychologists, nurses and research staff with expertise in paediatric diabetes developed the questions (see Table 2, later, for response options).
Children/adolescents provided a blood sample for Diabetes Control and Complications Trial (DCCT)-standardized HbA1c assay [reference range 20–42 mmol/mol (4.0–6.0%); Tosoh 2.2]. Medical data (height/weight) and diabetes management data (insulin regimen, blood glucose monitoring frequency) were obtained from the medical record. The blood glucose monitoring frequency was based on clinician report using meter download or logbook review.
Statistical analyses were conducted with SAS (v9.2, SAS Institute, Cary, NC, USA) and included t-tests, ANOVA, correlations and chi-square tests.
Almost half (49%) of parents reported a blood glucose goal of 130 (80–180) mg/dl [7.2 (4.4–10) mmol/l]; 29% had higher goals and 22% had lower goals (Table 2a). Only 3% of parents reported blood glucose goals ≥ 180 mg/dl (≥ 10 mmol/l). Parent reports of physicians’ blood glucose goals were similarly distributed (Table 2a). Mean HbA1c was almost the same in the lower three parent blood glucose goal groups. However, HbA1c was higher [86 mmol/mol (10.0%)] when parents reported goals ≥ 180 mg/dl. Similarly, HbA1c was higher when parents reported physicians’ goals ≥ 180 mg/dl or when parents did not know physicians’ goals, compared with when parents reported physicians’ goals < 180 mg/dl. Neither comparison was significant, likely owing to small numbers reporting these responses.
Three-quarters of parents reported HbA1c goals of 42–64 mmol/mol (6–8%); 21% reported goals > 64 mmol/mol (> 8%) or no specific goal; only 4% reported goals < 42 mmol/mol (< 6%) (Table 2b). Similarly, most parents (75%) reported physicians’ HbA1c goals of 42–64 mmol/mol (6–8%). Surprisingly, 16% were unaware of their physician’s goal (Table 2b). The HbA1c level was significantly lower when parents reported goals ≤ 64 mmol/mol (8%) (67±14 mmol/mol, 8.3 ± 1.2%) vs. > 64 mmol/mol (8%) or unawareness of goals (76±20 mmol/mol, 9.1 ± 1.8%) (P < 0.02). The HbA1c level was also lower, although not significantly, when parents reported physicians’ goals ≤ 64 mmol/mol (8%) (67±14 mmol/mol, 8.3 ± 1.2%,) vs. > 64 mmol/mol (8%) or unawareness of goals (74±20 mmol/mol, 8.9±1.9%) (P < 0.06).
Age was significantly associated with glycaemic goals. A greater proportion (62%) of parents in the younger group (< 12) reported the widest blood glucose range (80–180 mg/dl, 4.4–10 mmol/l) as their goal, compared with parents in the older group (≥ 12; 41%, P = 0.01). Similarly, 57% of parents in the younger group reported the widest blood glucose range as their physician’s goal, compared with 41% of parents in the older group (P = 0.06). With respect to HbA1c goals, 88% of parents in the younger group reported HbA1c goals ≤ 8%, compared with 73% of parents in the older group (P = 0.02). A similar, although non-significant, pattern emerged for parents’ reports of physicians’ HbA1c goals.
Duration of diabetes was not related to glycaemic goals. Frequency of blood glucose monitoring was not related to blood glucose goals but was related to HbA1c goals. The monitoring frequency was significantly higher when parents reported HbA1c goals ≤ 8% vs. > 8% (3.9 ± 1.2 vs. 3.4 ± 1.0 times/day, P = 0.03) and when parents reported physicians’ HbA1c goals ≤ 8% vs. > 8% (3.9 ± 1.2 vs. 3.5 ± 1.0 times/day, P = 0.04).
Most parents’ goals matched parents’ perceptions of physicians’ goals for both blood glucose (69% agreement) and HbA1c (88% agreement) (both P < 0.0001). There was no difference by age group for blood glucose goal concordance (younger, 67% agreement; older, 70% agreement) or HbA1c goal concordance (younger, 85% agreement; older, 89% agreement).
We aimed to evaluate the relationship between parents’ glycaemic goals and their children’s glycaemic control. the HbA1c level was modestly associated with parents’ blood glucose goals; it was higher, although not significantly, only at the highest blood glucose goal ≥ 180 mg/dl. However, HbA1c was associated with parents’ HbA1c goals and parents’ perceptions of physicians’ HbA1c goals. Youth HbA1c was lower when parents reported HbA1c goals ≤ 64 mmol/mol (8%) (67±14 mmol/mol, 8.3 ± 1.2%) vs. > 64mmol/mol (8%) (76±20 mmol/mol, 9.1 ± 1.8%). However, owing to the cross-sectional study design, we do not know if parents set glycaemic goals based upon their child’s actual HbA1c rather than recommended targets; longitudinal studies are needed to determine directionality of this relationship. It was also notable that about one in six parents (16%) were unaware of their physician’s HbA1c goal.
More frequent blood glucose monitoring was associated with both lower parent HbA1c goals and parent perceptions of physicians’ HbA1c goals. After controlling for age, these associations maintained a trend toward significance (P ≤ 0.07). Previous studies have confirmed a tight inverse relationship between blood glucose monitoring frequency and HbA1c levels [12–15]. Notably, blood glucose goals and monitoring frequency were unrelated. One might expect families that encourage frequent blood glucose monitoring in order to self-correct their child’s out-of-range glucose levels to observe substantial glucose variability, leading the parents to target a wider blood glucose range.
Although diabetes duration was not related to blood glucose and HbA1c goals, age of children/adolescents was associated with both parents’ goals and parents’ perceptions of physicians’ blood glucose and HbA1c goals. Parents of children < 12 years old reported a wider blood glucose goal range and a lower HbA1c goal than parents of adolescents ≥ 12 years old. Parents of younger children are more likely to observe fluctuations in their child’s blood glucose levels than parents of adolescents, as teens may be more likely to self-monitor, leading parents of younger children to report a wider blood glucose range . However, adolescents tend to have higher HbA1c levels than younger children [17, 18], which, in turn, likely leads parents of adolescents to report a higher HbA1c goal than parents of younger children. Our data support this premise as 90% of parents of children < 12 years compared with 75% of parents of adolescents ≥ 12 years reported HbA1c goals ≤ 64mmol/mol (8%). Nonetheless, we are encouraged that parents likely are seeking glycaemic improvements for their children and may perceive lower HbA1c goals than may be attainable in the short-term.
Our study has several limitations. The cross-sectional study design does not allow assessment of causal relationships. The survey response options did not allow for reporting of more specific or narrower goals. Also, the questions asked only about parents’ perceptions of physicians’ goals and not about parents’ perceptions of goals of other health-care providers (e.g. certified diabetes educators). Parents’ blood glucose and HbA1c goals were highly concordant with their perceptions of physicians’ blood glucose and HbA1c goals, respectively, but we did not assess the physicians’ goals or children/adolescents’ goals. It is likely that health-care providers individualize glycaemic targets. For example, an HbA1c goal of 75 mmol/mol (9%) is usually considered higher than recommended targets but it may be an appropriate goal for a patient with an HbA1c > 86 mmol/mol (> 10%).
This observational study suggests a need for more research on goal-setting in paediatric Type 1 diabetes. Previous research supports the importance of unified goals by diabetes health-care team members in order to achieve glycaemic targets . Future studies should assess the relationship between parents’ perceptions of health-care providers’ goals and health-care providers’ actual goals, and the impact of unified family/provider goal-setting on glycaemic control in children/adolescents with Type 1 diabetes.
This study was supported in part by the Charles H. Hood Foundation, grant R01DK046887 from the National Institute of Diabetes and Digestive and Kidney Diseases, the Diabetes and Endocrinology Research Center (P30DK036836), the Katherine Adler Astrove Youth Education Fund and the Maria Griffin Drury Pediatric Fund. Portions of this manuscript were presented at the 71st Scientific Sessions of the American Diabetes Association (2011).
Nothing to declare.