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Type 1 Diabetes Among Adolescents
Reduced Diabetes Self-Care Caused by Social Fear and Fear of Hypoglycemia
Purpose The aim of this study was to examine the association between social anxiety and adherence to diabetes self-care and quality of life and to determine the effects of fear of hypoglycemia on these associations in adolescents with type 1 diabetes. It is hypothesized that (1) social anxiety will be negatively associated with adherence and quality of life and (2) that fear of hypoglycemia will mediate this relationship. It is also hypothesized that (3) girls will have higher social anxiety than boys.
Methods Adolescents with type 1 diabetes were recruited during clinic visits at 2 international centers. Participants answered a survey containing questionnaires on social anxiety, behavioral adherence to the diabetes self-care regimen, quality of life, fear of hypoglycemia, and last hemoglobin A1C results.
Results Seventy-six adolescents (33 boys, 43 girls), mean age 15.9 (1.44) years, participated. Social anxiety levels are not statistically different between genders. In boys, social anxiety is associated with worse diet and insulin injection adherence; no associations are found in girls. Social anxiety is positively correlated with poor quality of life in both genders. Fear of hypoglycemia mediates the
Di Battista et al
Ashley M. Di Battista, MA Trevor A. Hart, PhD Laurie Greco, PhD Jan Gloizer, RN From University of Melbourne, Department of Psychology, Melborne, Australia (Ms Di Battista); Ryerson University, Toronto, Ontario, Canada (Dr Hart), University of Missouri—Saint Louis, Department of Psychology, Saint Louis, Missouri (Dr Greco); and North York General Hospital, Diabetes Education Centre, Branson Site, Toronto, Ontario, Canada (Ms Gloizer).
Correspondence to Ashley M. Di Battista, MA, Department of Psychology, School of Behavioural Science, 12th Floor, Redmond Barry Building. The University of Melbourne, Victoria 3010, Australia (e-mail:
[email protected]). DOI: 10.1177/0145721709333492 © 2009 The Author(s)
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relationship between social anxiety and insulin adherence in boys.
Conclusions Findings suggest that social anxiety, which is common in general populations of adolescents, may interfere with behavioral adherence and quality of life among adolescents with type 1 diabetes. Screening and treatment of social anxiety may result in better adherence and increased quality of life.
D
espite the necessity for adherence to medical self-care regimens among patients with type 1 diabetes, adherence to the multifaceted self-care regimen is estimated to be only 45% during the adolescent years.1 Low adherence levels and habits in adolescence often continue into young adulthood,2 suggesting the potential for benefit in promoting adherence earlier in adolescents with type 1 diabetes. Many elements contribute to the poor adherence rates in adolescents, including but not limited to pubertal hormonal changes, emotional distress, increasing need for autonomy, and, in some cases, onset of eating disorders and insulin omission aimed at weight control.3-6 In addition to these adherence limiting factors, the social implications of diabetes (both its medical management and symptoms) may affect adherence. Social concerns are of particular relevance in this age group given the emphasis on fitting in with same-aged peers during adolescence.7 Recent literature suggests that perceptions of peer reactions are important in predicting child and adolescent adherence to type 1 diabetes regimens.8-11 Specifically, perceptions of disapproval from peers in social situations may be important in predicting problems with self-care regimen adherence among adolescents with type 1 diabetes.11-13 Many adolescents with diabetes worry about negative peer reactions to glucose-testing and diet limitations, including avoidance of forbidden foods that contain high concentrations of sugar.11 Low adherence rates have also been linked to fear of hypoglycemic episodes.14 Fear of hypoglycemia (FoH) involves both fear of the negative acute health conse quences of an episode (ie, loss of consciousness, nausea,
shaking) and fear of social reprisal for behavioral, motor, and cognitive changes that occur during an episode.14 FoH has been reported in patients with frequent hypoglycemia, with linkages to anxiety and phobia about future hypoglycemic events.14,15 FoH has important implications for adherence, because patients may engage in preventive attempts to control hypoglycemia that include maintaining hyperglycemia or engaging in excessive overtreatment of low blood glucose.16 The social concerns that can limit adherence, because of general fear of negative peer reactions to adherence itself or specifically to the negative effects of a hypoglycemic episode, are consistent with components of a psychological state called social anxiety.17,18 Social anxiety involves a fear and avoidance of social situations as well as self-critical evaluations while in the presence of others.18-21 Not surprisingly, social anxiety is prevalent during adolescence, a period marked by social pressures and the desire to belong to a social group.7 Social anxiety has been documented in otherwise healthy children and adolescents17,18,22,23 as well as in those with health conditions, including those diagnosed with epilepsy, attention deficit hyperactivity disorder, anorexia nervosa, bulimia nervosa, and endocrine disorders.24-28 Social concerns have been reported in youth with type 1 diabetes.11-13 To date, no studies have examined the potential for social anxiety to negatively affect adherence to the self-care regimen in adolescents with diabetes despite the fact that self-care regimens require engaging in observably different-than-normal behavior (eg, glucose testing, dietary restrictions, insulin injection). The potential for social anxiety to influence adherence in adolescents with type 1 diabetes is high, given that they are still subject to social pressures to conform to peer norms but are required to engage in observably different behaviors to adhere to their self-care regimen. The effect of social anxiety on adherence therefore warrants proper investiga tion in this group, as it has been associated with reduced quality of life and impaired social development among adolescents in normative samples.29 Given previous findings regarding social concerns about being negatively evaluated in this population,11-13 this study hypothesizes that a relationship exists between social anxiety and adherence in adolescents with type 1 diabetes. Specifically, it is hypothesized (1) that social anxiety would be negatively associated with diabetes adherence behaviors and quality of life and (2) that fear of hypoglycemia would mediate the relationship between
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social anxiety and diabetes adherence behaviors. Given that girls experience higher social anxiety than boys in normative samples of adolescents,17,30,31 a secondary hypothesis was (3) that girls would have higher social anxiety than boys.
Methods Participants
Participant recruitment was ongoing from May 2004 to April 2007. Participants were recruited from 2 pediatric outpatient diabetes clinics, the Vanderbilt University Medical Center’s Pediatric Diabetes Clinic in Nashville, Tennessee, and the North York General Hospital Diabetes Education Centre in Toronto, Ontario, Canada. Research was approved by the Human Participants Research Committee at York University, the Research Ethics Board at the North York General Hospital, and the Institutional Research Board at Vanderbilt University. Eligibility criteria required that participants were between 13 and 18 years of age, competent in English, and diagnosed with type 1 diabetes more than 6 months from the date of participation. Participants received $10 in US or Canadian dollars, depending on the study site, as an incentive for involvement in this study. Informed consent was required from all participants aged 16 and over, and informed assent was required from participants younger than 16 in addition to parental/legal consent. Procedure
Adolescents and their parents were approached in person at both institutions by trained research staff, who followed the same verbal script and emphasized anonymity of responses. Interested participants signed letters of consent (participants 50 are indicative of clinically significant social anxiety in adolescents. Total scores 36 or lower represent low social anxiety. The SAS-A was developed for use in adolescents and has been used in both clinical (cancer, anxiety disorders, neurofibromatosis) and nonclinical samples.17,30,33-37 The SAS-A subscales demonstrate acceptable to good internal consistency (range of α = .76-.91)32 and adequate test–retest reliability at 2 months (.72-.78) and at 6 months (.47 -.75).32 Diabetes Quality of Life. The Diabetes Quality of Life Measure (DQoL)38 was specifically designed for use in diabetes populations to assess feelings about diabetes care and its treatment from the patient’s perspective. The measure includes 4 subscales, which assess satisfaction with treatment (Satisfaction subscale), the impact of diabetes treatment on one’s life (Impact subscale), worry about future complications and effects of diabetes (Diabetes Worry subscale), and worry about how diabetes impacts social situations (Social Worry subscale). Adolescence specific questions are available and were added to the assessment, resulting in 60 self-report questions. The DQoL has been validated for use in adults and adolescents with type 1 diabetes.39,40 All of the items are rated along a 5-point Likert scale. Items are reverse scored, so that higher scores indicate worse quality of life. Internal consistency ranges from Cronbach’s α = .66 to .92 on the subscales and total score.41 Test–retest reliability after 1 week ranges from 0.88 to 0.92 across subscales and total quality of life.41 Construct validity ranges from r = 0.36 to 0.81 (total score of the DQoL) with other established measures of quality of life in adolescents with diabetes, including the Symptom Checklist 90-R, the Bradburn Affect Balance Scale, and the Psychosocial Adjustment to Illness Scale.41,42
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Adherence to the Diabetes Self-Care Regimen. Adherence to the diabetes self-care regimen was assessed by the Summary of Diabetes Self-Care Activities (SDSCA) questionnaire.43 The SDSCA is a 12-item selfreport scale using a 4-point Likert-type response set. The SDSCA was specifically designed to assess frequency of engaging in diabetes self-care regimen requirements, including adherence to diet, exercise, glucose testing, and insulin injection. Raw scores for each question within a regimen domain (ie, insulin administration) are converted into standard scores (mean = 0 and standard deviation = 1), and then standardized scores are averaged to generate a composite score for each regimen behavior (thus all scales have equal weighting). Higher scores for each aspect of diabetes self-care reflect greater performance in engaging in those diabetes self-care behaviors. The SDSCA demonstrates reasonable test–retest reliability at 6 months, with results ranging between 0.43 and 0.58.43 The internal consistency of the measure is a = 0.47, which was assessed by average interitem correlations.44 The SDSCA has been used in adolescent samples.45 Fear of Hypoglycemia. The Hypoglycemia Fear Survey46 is a 23-item self-report scale that was specifically designed for use in diabetic samples to assess individual fear of having a hypoglycemic episode among people with diabetes. The HFS contains 2 subscales that assess worry and fear about having hypoglycemic episodes (Worry/Fear subscale) and the behavioral (maladaptive and adaptive) management of hypoglycemia (Behavior/Avoidance subscale). The 2 subscales are summed in order to determine an overall index of fear of hypoglycemia (HFS total score). Each of the 23-items is rated on a 5-point Likert-type scale. The HFS demonstrates high internal consistency (α = .87) and moderate to high test–retest reliability for the Behavior subscale (range, 0.59-0.68) and 0.64 to 0.76 for the Worry subscale.47 The HFS has been used with adolescents48 and has demonstrated validity as a measure of change instrument via assessment of change in fear of hypoglycemia following hypoglycemia fear and event reductions.49 A systematic review of the measure14 also supports the psychometric properties of the HFS and its usefulness in studies on fear of hypoglycemia. Demographics and Medical Variables. Demographics and most recent hemoglobin A1C result were assessed by self-report. Participants were asked to indicate age, sex,
ethnicity, parental income, school/work status, country of birth, duration of diabetes, and last hemoglobin A1C result. Data Analysis
All data analysis was conducted using SPSS statisti cal software 15.0. Sample characteristics and medical variables were examined according to means, standard deviations, and percentage of total. Results are stratified by sex given data suggesting different patterns of corre lation between social anxiety19 and self-care behaviors in girls versus boys.50 Pearson correlations were computed to test the hypothesis that social anxiety would result in decreased adherence and diabetes related quality of life. Multiple regressions were performed to examine the relationship between social anxiety and self-care adherence and diabetes related quality of life. To test the hypothesis that fear of hypoglycemia would mediate the relationship between social anxiety and adherence behaviors, a multiple regression was performed with social anxiety on step 1 and fear of hypoglycemia on step 2 of the regression. To determine whether girls exhibited more social anxiety than boys, a 2-tailed t test was computed using SAS-A scores.
Results Participants
A total of 101 participants consented to partake in the study (n = 91 from the Vanderbilt University Medical Centre, n = 10 from the Diabetes North York General Hospital Diabetes Education Centre in Toronto). Data from 82 participants (45 female, 37 male) met the inclusion criteria and were eligible for analysis. The majority of participants were recruited from the Vanderbilt University Medical Center’s Pediatric Diabetes Clinic in Nashville, Tennessee (n = 72 versus n = 10 from Toronto, Canada). Six participants were missing a significant amount of responses to their surveys (answered 50). However, girls’ were on average above the cutoff for low social anxiety (SAS-Total mean = 39.37, SD = 11.43). Boys’ average SAS-Total score were in the low socially anxious range (SAS-Total mean = 35.59, SD = 11.88). No statistically significant differences were found between boys and girls for social anxiety (t74 = –1.41,
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P = .16) or adherence variables (insulin injection, t74 = –0.94, P = .35; diet, t74 = –1.64, P = .10; exercise, t74 = 0.30, P = .77; glucose testing, t74 = –0.74, P = .46). Social anxiety was not correlated with duration of diabetes or A1C results in boys or girls. Bivariate Associations Between Social Anxiety, Adherence, and Quality of Life Variables
Social anxiety was associated with adherence behaviors in boys but not girls. Specifically, social anxiety was found to be negatively correlated with insulin (r = –0.39, P < .05) and dietary adherence (r = –0.50, P < .01) among boys. Social anxiety was positively correlated with poorer quality of life among both boys and girls (Tables 3 and 4). Boys did not have significant associations between social anxiety and Satisfaction or Diabetes Worry subscales, whereas girls’ social anxiety was positively correlated with all aspects of diabetes quality of life (satisfaction, r = 0.35, P < .05; impact, r = 0.51, P < .01; social worry, r = 0.57, P
