Predictors of Diabetes-related Quality of Life after Transitioning to the Insulin Pump

Type 1 diabetes has been associated with poor health-related quality of life (QOL) in children and adolescents (Cameron, Northam, Ambler, & Daneman, 2007). Health-related QOL is a measure of an individual's well-being with respect to the role health plays in his/her daily life. It may encompass several elements, including satisfaction with the current status and treatment of the illness, the impact of the illness on everyday functioning, and how much one worries about or is bothered by his/her illness (Ingersoll & Marrero, 1991). A child's diabetes-related QOL is important, not only to overall psychological adaptation, but also to health status, as it is associated with diabetes management, including medical regimen adherence, metabolic control (as measured by HbA1C), and risk for long-term complications (Cameron et al., 2007; Guttman-Bauman, Flaherty, Strugger, & McEvoy, 1998; Hoey et al., 2001). Substantial research has identified relationships between behavior, psychological adjustment, depression, anxiety, parenting, family environment, regimen adherence, and glycemic control (Auslander, Anderson, Bubb, Jung, & Santiago, 1990; Cohen, Lumley, Naar-King, Partridge, & Cakan, 2004; Hanson, Henggeler, & Burghen, 1987; Lernmark, Persson, Fisher, & Rydelius, 1999), but studies have only begun to identify factors related specifically to children's health-related QOL (Graue, Wentzel-Larsen, Hanestad, & Sovik, 2005; Grey, Boland, Yu, Sullivan-Bolyai, & Tamborlane, 1998; Grey, Davidson, Boland, & Tamborlane, 2001; Valenzuela et al., 2006; Wiebe et al., 2005). Individual psychosocial and family variables (e.g., family conflict, child behavior problems, and parental distress) have demonstrated links to youth's health-related QOL (Valenzuela et al., 2006). Consistent with a transactional family systems framework (Kazak, 1989), caring for a child with a chronic illness may impact the family environment (i.e., conflict, cohesion, and communication; Northam, Anderson, Adler, Werther, & Warne, 1996), which may in turn impact the child's well-being. General family conflict and cohesion, parental involvement, youth depressive and anxiety symptoms, and metabolic control consistently emerge as factors in children's diabetes-specific QOL (Graue et al., 2005; Grey et al., 1998, 2001; Valenzuela et al., 2006; Wiebe et al., 2005). Age may also be relevant to health-related QOL; older adolescents may report poorer diabetes-specific QOL than younger adolescents (Graue et al., 2005), although some studies find no differences (Valenzuela et al., 2006; Wiebe et al., 2005). Younger youth seem to rate family as more important to health-related QOL than friends, while the pattern is reversed for older youth (Wagner, Abbott, & Lett, 2004). A child's diabetes regimen may be associated with health and health-related QOL as well (Boland, Grey, Oesterle, Frederickson, & Tamborlane, 1999). Results from the Diabetes Complications and Control Trial (DCCT) indicated that intensive regimens (i.e., ≥4 injections/day, continuous subcutaneous insulin infusion or CSII) may help delay or prevent the onset of complications (The Diabetes Control and Complications Trial Research Group, 1993), and such regimens are now being prescribed to an increasing number of children (Pickup & Keen, 2002). CSII, commonly known as the insulin pump, is one type of intensive regimen that likely allows for a more physiologically precise delivery of insulin and a more flexible lifestyle than other regimens (Hoogma et al., 2005). The pump has been associated with both medical and psychosocial benefits as compared to conventional or other intensive regimens, including better metabolic control and diabetes-related QOL, and lesser impact of diabetes on daily life (Cameron et al., 2007; Hoogma et al., 2005; Weissberg-Benchell, Antisdel-Lomaglio, & Seshdari, 2003). Examination of changes over time during the transition to an intensive regimen consistently demonstrate maintenance of or improvement in metabolic control and QOL, and a decreased risk for hypoglycemia after transitioning to the pump (Cogen, Henderson, Hansen, & Streisand, 2007; Fox, Buckloh, Smith, Wysocki, & Mauras, 2005; Juliusson, Graue, Wentzel-Larsen, & Sovik, 2006; McMahon et al., 2004). This pattern may be particularly salient for those with poorer control prior to pump initiation (Rodrigues, Reid, Ismail, & Amiel, 2005). Children may transition to the pump with the goal of obtaining these benefits, which they might expect will contribute to or improve their health-related QOL. Previous studies have found that individual and family environment characteristics have links to children's health-related QOL (Grey et al., 1998; Valenzuela et al., 2006). Most comparisons of QOL between regimens have compared values before and after initiating pump use with t-tests or analyses of variance and have not considered trajectories of change during the transition or factors contributing to the changes that were found (Cogen et al., 2007; Juliusson et al., 2006; McMahon et al., 2004), leaving much unknown about youths’ and families’ experiences over this period. This is potentially an important period for investigation of QOL, given the changes in daily management tasks and the lifestyle improvements individuals may hope for the insulin pump regimen to bring. This study attempts to fill gaps left by the existing research by examining within-person changes in QOL during the time of pump transition in order to identify common family, psychological, medical, and demographic factors that may contribute to improved health-related QOL during this period. This study draws on previous research that has identified the factors associated with diabetes-related health, general psychological well-being, and QOL, and examines them in relation to change in health-related QOL during a time of medical transition. Specifically, this study's hypotheses were (a) children's report of better health-related QOL prior to pump transition would be associated with less family conflict, more family cohesion, better psychosocial functioning, and better metabolic control; (b) children's health-related QOL would improve over the transition to the pump; and (c) the amount of change in children's health-related QOL would be predicted by less family conflict, more family cohesion, better psychosocial functioning, and poorer metabolic control. Analyses of associations between QOL and demographic variables and analyses of change in metabolic control were exploratory.