Quality of lifeHow poorer quality of life in adolescence predicts subsequent type 1 diabetes management and control
Introduction
Type 1 diabetes is among the most common chronic conditions impacting children and adolescents, with nearly 15,000 youth diagnosed annually [1]. Diabetes management is complex and involves multiple daily tasks, including frequent blood glucose monitoring, insulin administrations, and careful attention to nutrition and physical activity [2]. Diabetes management and control tend to deteriorate in adolescence [3], [4], resulting in increased risk for complications and rising healthcare costs [5], [6].
Contributors to the common decline in diabetes management and control in adolescence have been identified. As autonomy increases, adolescents’ and their parents’ diabetes management roles and responsibilities change and parents often decrease their direct involvement in diabetes care tasks [7]. Parents increase their expectations for adolescents’ diabetes management autonomy to promote maturity and decrease hassles and conflict [8]. However, youth with less parental oversight and those whose autonomy exceeds their capabilities can struggle to execute the complex tasks of diabetes management [9], [10]. Family relationships can change as teens spend less time at home and more time with friends and engaged in activities, and families may experience conflict about whether and how the tasks of diabetes management are completed [11], [12]. Teens with type 1 diabetes are at risk for experiencing symptoms of depression and anxiety [13], [14], and diabetes burnout can exacerbate feelings of burden surrounding diabetes management [15]. Socially, teens may feel self-conscious about managing their diabetes at school or in front of peers [16], and they may feel unsupported by teachers or administrators with relation to completing diabetes management tasks during the school day [17]. Each of these challenges has demonstrated associations with poorer diabetes management and control.
Quality of life (QOL) is a patient-reported outcome that represents one's perception of their mental, physical, and social well-being [18], [19]. Health-related quality of life (HRQOL) is a type of QOL that represents the impact of a disease and its management demands on one's subjective well-being [20], [21]. General QOL and HRQOL are important health outcomes that are increasingly considered in clinical trials and outcomes research [20], [22]. Cross-sectional studies have demonstrated that problems with QOL are related to youth's poorer diabetes management and control [23], [24], [25]. While QOL is typically considered a health outcome, its role as a proxy for general well-being may also function as a predictor of other outcomes, including health behaviors and biologic indices of health status. For example, many of the contributors to the decline in adolescents’ diabetes management and control, such as difficulties in the domains of family, social, academic, and emotional functioning [7], [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], are encompassed within the definition of QOL [19], [20]. Problems in these areas would likely be captured in reports of poor QOL, and thus reductions in QOL scores may predict subsequent reductions in diabetes management and control. Prospective associations between QOL and subsequent health outcomes, including health care costs, hospitalizations, morbidity, and mortality, have been demonstrated in pediatric [26], [27] and in adult chronic disease populations [28], [29]. However, the literature in pediatric type 1 diabetes has primarily examined cross-sectional relations among these constructs.
The overarching purpose of this study was to examine whether problems in QOL are associated with diabetes management behaviors and glycemic control over one year. We hypothesized that lower QOL would predict less frequent engagement in diabetes management behaviors, which would subsequently predict poorer glycemic control.
Section snippets
Participants
Adolescents between the ages of 13 and 18 with type 1 diabetes (mean age = 15.5 ± 1.4 years) and one parent per teen were the study participants. Of the 166 families approached to participate in the study, 150 (90%) consented/assented and provided baseline data. Data were available from 147 pairs of adolescents and parents at 6 months (98% retention rate) and 145 at 12 months (97% retention rate). Missing data were primarily due to inability to make contact at follow-up and were handled
Latent variable measurement
To facilitate our examination of QOL in this patient population, we first constructed a latent variable using the 12 adolescent- and parent-reported subscale scores from the PedsQL™ (Table 2). The parent-reported diabetes worry scale score exhibited a low factor loading and was thus removed, resulting in 11 scores contributing to the latent variable. The remaining scores loaded significantly onto the latent variable (range = 0.34–0.90; p < 0.001). Between 11% and 80% (R2 range = 0.11–0.80) of the
Discussion
Deficits in adolescents’ general QOL and HRQOL predict less frequent BGM and poorer glycemic control over one year. Problems in QOL may set the stage for engaging in less frequent BGM, a known contributor to subsequent deteriorations in glycemic control [34]. Results from the path model, including a relatively high level of explained variance for the indirect relation through BGM frequency, suggest that the prospective associations between lower QOL and suboptimal glycemic control may be
Acknowledgement
This research was supported by a career development award from the National Institutes of Health to K.K.H. (K23, DK077340).
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