This study adds to the growing literature regarding the impact of T1D on parents and families. Children with diabetes have been reported to miss more school than their peers and siblings (5
). One study found that 31% of mothers reduced their work or stopped working after their child’s diagnosis of T1D (12
). Caring for children with T1D is expensive (13
) and families bear some of these costs (2
). Earlier studies also demonstrate that T1D is time consuming to manage (4
). However, the percentages reported here suggest that T1D is even more impactful than many of these earlier studies describe.
An earlier study evaluated the percentage of families with autism spectrum disorder (ASD) experiencing family impacts. Using the same survey and definitions, financial and time impacts in T1D vs. ASD were comparable with 32% vs. 39% respectively reporting the condition caused financial problems and 24% vs. 27% respectively reporting time impact. Fewer families of children with T1D vs. ASD reported work restriction (35% vs. 57% respectively) or needing additional income (24% vs. 35% respectively). However, more families of children with T1D vs. ASD report high out-of-pocket medical expenses (41% vs. 31%) (14
Past studies have demonstrated that the medical home, care coordination or family-centered care have been associated with fewer family impacts in other populations of CSHCN. In families of CSHCN overall, the medical home has been associated with fewer financial problems, less need for additional income, and less work restriction (15
). Care coordination has also been associated with less missed school, less out of pocket medical expense, less time coordinating care and less work restriction in CSHCN (16
). In families of children with ASD, families with a medical home were significantly less likely to experience financial problems, work restriction, time impact, high medical expenses or to require additional income (14
There was no association of the care delivery variables with time impacts, high medical expenses, or school absenteeism in families of children with T1D. These thresholds were based on MCHB indicators (10
) and thus there could be a “floor effect” in the T1D population, for example, from unavoidable copayments. It is also possible that the medical home, care coordination, and family-centered care cannot reduce or eliminate some impacts for families involving expenses, time and school.
The optimal care of children with T1D requires close collaboration between primary care doctors and the diabetes team. A little more than 20 years ago, about half of pediatricians stated that they managed uncomplicated diabetes and about a third said that they shared responsibility with an endocrinologist (17
). More recently, about 80% of youth with T1D reported seeing a diabetes specialist, either a pediatric or adult endocrinologist (18
). Many primary care providers and endocrinologists endorse a model of co-management of children with T1D with responsibilities divided according to the expertise of each (19
). Within the NSCSHCN, the qualifying questions for the medical home, care coordination, or family-centered care refer to all medical providers, potentially including both primary care providers and specialists. Thus, our analysis applies to a child’s primary care experience as well as to the child’s diabetes specialist experience.
This study has several limitations. The cross-sectional nature of the data does not allow us to make any determination of causation between the presence of the medical home and fewer family impacts. The associations between the medical home and family impacts could be affected by an unmeasured confounder. Perhaps greater health literacy allows families to pursue practices that fit the medical home model and also allows for decreased family impact of the child’s health condition.
The definitions of the medical home, care coordination and family-centered care are based on parent report and developed by the NCHS (9
). They do not measure what health care providers believe they are providing in their offices. However, the NSCSHCN 2001 measurement of a medical home (very similar to the NSCSHCN 2005-06) has been assessed to be among the more robust measures of the medical home when compared with three other population-level databases (20
Our definition of T1D was limited by the survey questions asked. However, the majority of children with diabetes in the US have T1D (21
) and this proportion is increased by limiting the sample to children treated with insulin as we did here. In addition, the racial/ethnic distribution of children with insulin-treated diabetes in our sample is characteristic of T1D rather than type 2 diabetes (21
). Nonetheless, the family impacts described are likely related to the demands of insulin therapy supporting the relevance of studying children with insulin-treated diabetes as shown here.
The definition of work restriction was limited to those who had ever stopped or cut down on work because of their child’s condition and so did not include those parents who did not work outside of the home at the time of their child’s diagnosis and then did not seek employment outside of the home because of their child’s health condition. Because of differences in the demographics between the CSHCN and T1D group, it is possible that this circumstance would occur more frequently in families of CSHCN than in families of children with T1D.
The children without special health care needs group provides a frame of reference and emphasizes the substantial proportion of families of children with T1D experiencing impacts. The CSHCN population is a widely studied population that has a wide variety of chronic conditions. The most frequently reported conditions in the NSCSHCN were asthma, allergies and Attention Deficit Hyperactivity Disorder which, in their milder forms, may be less severe than T1D.
T1D differs from other common, chronic diseases in childhood because of the frequency and complexity of management tasks and because of the need for constant vigilance for symptoms of acute hypoglycemia and diabetic ketoacidosis. T1D management requires extensive parent (includes other primary caretakers) education so that parents can perform day-to-day management tasks (22
). Over 75% of children with T1D monitor blood glucose ≥4 times/day and a similar proportion receive ≥3 insulin injections/day or are on an insulin pump (18
). Parents and providers must manage the constant risk of acute hypoglycemia and the competing desire for tight glycemic control.
More can be done to mitigate the impacts of T1D on families. In acknowledgement of the substantial time and financial impacts of diabetes on families, the Social Security Administration recently determined that diabetes requiring insulin therapy is considered a qualifying disability for children less than 6 years old (23
). However, 30% of families of children with T1D aged 6–11 years report time impact and 45% report work restriction, suggesting that the high rates of family impacts continue into the school-aged years.
Employers can and should develop policies to support parents of CSHCN in the workplace. Parents of CSHCN report especially valuing flexible work policies such as the ability to work flexible hours or work from home, childcare options, and flexible options for use of leave time (24
); enactment of such policies by employers may allow employees with CSHCN, such as T1D, to continue working and thus to help diminish the financial impact of the child’s condition.
This study suggests that optimizing health care delivery through the medical home may diminish the impact of T1D on families. However, 50% of families of children with T1D did not report a medical home. Providing a medical home to all children with T1D may help to reduce the proportion of families of children with T1D experiencing family impacts. Additionally, health care providers could expand evening and weekend appointment options to decrease the frequency that parents needs to miss work and children need to miss school for their medical appointments. Email communication options and patient medical portals can help to decrease interruptions to parents’ work days and may also decrease the amount of time that parents must spend coordinating their children’s care. Improved health insurance options with yearly caps on office visit and prescription co-payments could help to reduce the high out-of-pocket costs of T1D.
Our data demonstrate that T1D has sizeable impacts, affecting three-quarters of families of youth with T1D, 66% more than the proportion of families of children with other special health care needs, and 4.4 times more than families of children without special healthcare needs. Our findings also support that the medical home, care coordination, and family-centered care may lessen financial and work-related impacts. Further research is needed to better understand why families of children with T1D experience such frequent impacts and to measure the effects of health care, school, work, and policy interventions to mitigate the impacts. Longitudinal studies aimed at providing care coordination, family-centered care, and the medical home with assessments of family impact can confirm the associations described here. Programs to enhance care delivery to specifically address work, financial, time, and school concerns might be especially beneficial for families of youth with T1D.