Introduction to the Problem
In recent years, general population screening for islet antibodies (IA) has become more common. However, there are notable challenges to implementing general population screening for type 1 diabetes risk outside of research settings (1–3). The work by O’Donnell et al. (4) in this issue of Diabetes Care highlights the possible psychological consequences of IA screening.
Background
The available data on the psychological impact of screening for type 1 diabetes risk come primarily from parents and families experienced with the condition. We know far less about the impact of screening in the general population or on children themselves.
Parents often underestimate their child’s type 1 diabetes risk, particularly if they come from the general population with no family history of the disease. Underestimation of risk is particularly common among ethnic minority individuals and those with lower education levels (5–7).
Heightened parent anxiety in response to a child’s increased diabetes risk is common. Although this anxiety dissipates over time in parents of children who remain IA−, parental anxiety in response to IA+ results, particularly multiple IA+ results, does not rapidly decline (8–10). In these studies, investigators appropriately used diabetes-specific measures of anxiety. Studies using more general measures of psychological functioning, such as depressive symptomology, have more mixed results; some suggest that depressive symptomology does not increase in parents of at-risk children (9,11), while others suggest that certain vulnerable groups—ethnic minority parents and those with a history of depression—may respond with greater depressive symptoms (12). Only one study assessed the psychological impact of a child’s type 1 diabetes diagnosis in parents who had been participating in a type 1 diabetes screening program in comparison with parents whose child was unexpectedly diagnosed with the disease. Screening program parents—who had prior knowledge of their child’s IA+ status—had decreased parental stress and better quality of life versus those diagnosed in the community (13). However, these results may not apply to general population screening, unless that screening includes significant education and psychosocial support.
The Autoimmunity Screening for Kids Study
The Autoimmunity Screening for Kids (ASK) study is a general population effort for screening of Colorado children, many of whom are Hispanic, for IA. Children who screen positive for one or more IA are asked to return for confirmation testing. Those with confirmed positivity are invited to join a medical monitoring program. As part of the monitoring program, parent perception of the child’s type 1 diabetes risk and parent anxiety about that risk are assessed. Most screened are not familiar with type 1 diabetes.
Do Parents of IA+ Children Think the Child Is at Increased Risk for Type 1 Diabetes?
Despite extensive educational efforts, many ASK parents do not perceive their child to be at increased risk for type 1 diabetes. This is particularly common among less educated parents and Hispanic parents. The ASK data highlight the challenge of risk communication in any general population screening program and the need for resources devoted to underrepresented minorities and those with less formal education.
How Anxious Are Parents About the IA+ Child’s Risk for Type 1 Diabetes?
Many ASK parents report significant anxiety in response to their child’s IA+ status; this anxiety does not dissipate quickly. In fact, ASK parent anxiety is higher than that reported by parents in The Environmental Determinants of Diabetes in the Young (TEDDY) study, where similar psychosocial assessments are conducted. However, as ASK investigators point out, TEDDY children are enrolled at birth due to genetic risk, so parents are aware that the child might become IA+. In contrast, within ASK, learning that your child is IA+ comes as a surprise. ASK findings suggest that general population screening programs to identify IA+ children do result in significant anxiety for many parents—anxiety that cannot be simply ignored as transient.
What Else Do We Need to Know About General Population Screening for IA?
There is still much to learn as we attempt to implement general population screening in ways that yield benefits for those who participate with minimal risk. There are almost no data on the impact of such screening on the children themselves. Fortunately, in ASK this information is being collected for children ≥10 years old. We also need to know more about those who screen IA+ but fail to return for a confirmation visit. We do know that people who screen positive for genetic type 1 diabetes risk often fail to follow up (14).
The ASK data confirm that general population screening is a resource intensive effort; of 23,847 children screened, 319 (1.3%) were confirmed positive for one or more IA and most of these (45.8%) were single IA+ with a 2% risk of clinical diabetes in 10 years. Only 65 (0.27%) were multiple IA+ (70% risk) and only 69 (0.29%) were single IA+ by two methods (50% risk). These latter two groups are those who would most benefit from being followed for possible diagnosis of type 1 diabetes without diabetic ketoacidosis (15). These individuals might be eligible for TZIELD or type 1 diabetes prevention trials, although we do not know how many would be interested in either. For any of these potential benefits to be realized, participants need to agree to be followed for potentially long periods of time. We have yet to learn how many participants agree to monitoring and for how long. We do not know whether individuals would agree to be screened/monitored if it was not cost free. Currently ASK covers these costs but for how long?
General Population Screening for IA: Remaining Challenges
Early identification of individuals at risk for type 1 diabetes has been critical to our understanding of disease pathophysiology and efforts to prevent/delay disease onset. These efforts have occurred within research programs with their appropriate human subject review boards. To date, neither the U.S. Preventive Services Task Force nor relevant professional organizations recommend general population screening for IA outside of a research context (1). The many questions and issues that need to be addressed for that to happen have previously been articulated (1–3). From our perspective the psychosocial impact of such efforts needs additional attention; the ASK study makes an important contribution in that regard. Understanding risk remains challenging especially for ethnic minorities and groups with lower education levels. Parent anxiety in response to a child’s IA+ status is common and does not quickly dissipate, suggesting that psychological support resources are needed. Care needs to be taken to select appropriate psychosocial measurement strategies; measures of general mental health are not always sensitive to distress associated with IA testing. Nevertheless, IA testing may have a negative impact on individuals’ overall mental health for certain vulnerable groups. Certainly, identifying those populations who would benefit most from screening as well as those who may be harmed is a worthwhile goal.
General population screening for IA will place huge demands on the larger health care system. More importantly, there are currently insufficient resources to attend to the psychosocial needs of individuals who have diabetes and their families (16,17). Addressing the anxiety of those who screen IA+ will only add to this problem. Similarly, currently there are insufficient diabetes specialists to monitor these IA+ individuals, and primary care physicians do not have the knowledge or time to do so; many report concerns about patient anxiety as a primary barrier to IA screening in their practice (18).
See accompanying article, p. 2155.
Article Information
Funding. S.B.J. is funded as a research consultant to chair the Psychosocial Committees for the National Institutes of Health (NIH)-funded TEDDY study and for TrialNet. L.B.S. is funded as a clinical supervisor on the NIH-supported Diabetes Journey: From Systematic Screening to Intervention study and as a co-investigator for The Leona M. and Harry B. Helmsley Charitable Trust–funded ConnecT1D study.
This commentary is the sole opinion of the authors and was not funded by any outside entity. The authors take full responsibility for its content.
Duality of Interest. No potential conflicts of interest relevant to this article were reported.