Pediatric Annals

Quality of Life, Family Behavior, and Health Outcomes in Children With Type 2 Diabetes

Barbara J Anderson, PhD; Karen Cullen, DrPH; Siripoom McKay, MD

Abstract

Quality of life for children and adolescents1 and disease-specific family behavior2 both have been shown to be important in the study of health outcomes across a broad range of chronic physical conditions of childhood. While there is a growing literature focused on these two constructs in pediatric type 1 diabetes, very few studies have addressed quality of life, the family's role in diabetes management, and health outcomes in children and adolescents with type 2 diabetes.

In this article, we review the few empirical studies of these two areas relevant to children and adolescents with type 2 diabetes. First, we review existing data on quality of life in pediatric type 2 diabetes, with attention to the related comorbidities of obesity and depression. Next, we present preliminary findings on an instrument designed to assess parent involvement in the management of type 2 diabetes. Finally, based on the literature reviewed and our pilot data, we suggest priorities for future research on quality of life and family behavior in pediatric type 2 diabetes.

RESEARCH

There is increasing recognition of the importance of health-related quality of life (HRQOL) as an essential health outcome parameter in clinical trials and healthcare.3 Pediatric HRQOL refers to the "child's and family members' perceptions of the benefits of ... children's sense of well-being ... and a more comprehensive assessment of the response to medical treatment, prediction of outcome, and evaluation of illness course than can be obtained by assessment of medical outcomes alone."1 Pediatric HRQOL encompasses physical functioning, social and emotional functioning, and age-appropriate developmental milestones such as school functioning.

We were able to identify only one published report of HRQOL in children and adolescents with Type 2 diabetes. The lack of research on HRQOL in pediatric type 2 diabetes primarily is due to the relatively recent appearance of this chronic disease in pediatric populations in large enough numbers of children for study. Varai and colleagues3 used the Pediatric Quality of Life Inventory to compare healthy children, children with type 1 diabetes, and children with type 2 diabetes. They found that children with type 2 diabetes reported significantly lower HRQOL than healthy children for all scales except physical functioning. Children with type 2 diabetes also reported significantly lower HRQOL than children with type 1 diabetes for the total scale score, as well as for psychosocial and for school functioning. These authors appropriately point out that ethnic and socioeconomic differences between children with type 1 diabetes and Type 2 diabetes may have contributed to these findings.

Ethnic and socioeconomic differences are noteworthy because, while type 1 diabetes in the United States is primarily a disease in children of EuropeanAmerican background, the diagnosis of type 2 diabetes is escalating, especially in children and adolescents from ethnic minority backgrounds.4 This "epidemic" of type 2 diabetes in youth is due in part to the dramatic rise in childhood obesity, especially among minority children, as obesity is a primary risk factor for the diagnosis of Type 2 diabetes.5 Furthermore, adding to this ethnic relationship is the strong correlation in the United States between minority ethnic group membership and lower socioeconomic status.

However, for children with type 2 diabetes, there is much less adjustment of medication doses and less need for intense monitoring of blood sugar levels. Therefore, it makes sense that parental involvement in diabetes tasks at home may be more closely associated with glycémie control in children and adolescents with type 1 diabetes than in children and adolescents with type 2 diabetes.

It also is important to remember that the factor analyses of the DFRQ for type 1 diabetes and for type 2 diabetes…

Quality of life for children and adolescents1 and disease-specific family behavior2 both have been shown to be important in the study of health outcomes across a broad range of chronic physical conditions of childhood. While there is a growing literature focused on these two constructs in pediatric type 1 diabetes, very few studies have addressed quality of life, the family's role in diabetes management, and health outcomes in children and adolescents with type 2 diabetes.

In this article, we review the few empirical studies of these two areas relevant to children and adolescents with type 2 diabetes. First, we review existing data on quality of life in pediatric type 2 diabetes, with attention to the related comorbidities of obesity and depression. Next, we present preliminary findings on an instrument designed to assess parent involvement in the management of type 2 diabetes. Finally, based on the literature reviewed and our pilot data, we suggest priorities for future research on quality of life and family behavior in pediatric type 2 diabetes.

RESEARCH

There is increasing recognition of the importance of health-related quality of life (HRQOL) as an essential health outcome parameter in clinical trials and healthcare.3 Pediatric HRQOL refers to the "child's and family members' perceptions of the benefits of ... children's sense of well-being ... and a more comprehensive assessment of the response to medical treatment, prediction of outcome, and evaluation of illness course than can be obtained by assessment of medical outcomes alone."1 Pediatric HRQOL encompasses physical functioning, social and emotional functioning, and age-appropriate developmental milestones such as school functioning.

We were able to identify only one published report of HRQOL in children and adolescents with Type 2 diabetes. The lack of research on HRQOL in pediatric type 2 diabetes primarily is due to the relatively recent appearance of this chronic disease in pediatric populations in large enough numbers of children for study. Varai and colleagues3 used the Pediatric Quality of Life Inventory to compare healthy children, children with type 1 diabetes, and children with type 2 diabetes. They found that children with type 2 diabetes reported significantly lower HRQOL than healthy children for all scales except physical functioning. Children with type 2 diabetes also reported significantly lower HRQOL than children with type 1 diabetes for the total scale score, as well as for psychosocial and for school functioning. These authors appropriately point out that ethnic and socioeconomic differences between children with type 1 diabetes and Type 2 diabetes may have contributed to these findings.

Ethnic and socioeconomic differences are noteworthy because, while type 1 diabetes in the United States is primarily a disease in children of EuropeanAmerican background, the diagnosis of type 2 diabetes is escalating, especially in children and adolescents from ethnic minority backgrounds.4 This "epidemic" of type 2 diabetes in youth is due in part to the dramatic rise in childhood obesity, especially among minority children, as obesity is a primary risk factor for the diagnosis of Type 2 diabetes.5 Furthermore, adding to this ethnic relationship is the strong correlation in the United States between minority ethnic group membership and lower socioeconomic status.

Table

TABLE 1.Demographic Characteristics of Children in the Pilot Study

TABLE 1.

Demographic Characteristics of Children in the Pilot Study

HRQOL IN OBESE CHILDREN AND ADOLESCENTS

HRQOL has been studied more frequently in overweight and obese children than in children with type 2 diabetes. Because many children with type 2 diabetes also cope with obesity, some attention to this literature is appropriate. The physical and mental health risks associated with pediatric obesity and the risk for continued obesity into adulthood have been reported.6 A recent large population study found that children's weight was negatively related to scholastic achievement.7 Children who are overweight, compared with children who are not, have been shown to have both low confidence in their school performance and negative views of their social acceptance.8,9

It is clear that the health and psychosocial risks of being overweight escalate during the adolescent period. A recent study in the Journal of the American Medical Assocation by Schwimmer and colleagues10 reported that obese adolescents have significantly impaired HRQOL, including impaired physical functioning and impaired psychosocial functioning. In fact, the authors documented that obese children and adolescents reported poorer health-related quality of life than did those with cancer who were undergoing active treatment.

Table

TABLE 2.Clinical Characteristics of Children in the Pilot Study

TABLE 2.

Clinical Characteristics of Children in the Pilot Study

DEPRESSION, OBESITY, AND TYPE 2 DIABETES

In the literature on pediatric obesity, depression is reported frequently as a comorbid condition.11"13 Moreover, there is a well-documented increased incidence of depression in adults with type 2 diabetes. 14

Because of small sample sizes and differing methodologies, however, it is impossible to disentangle the effects of type 2 diabetes, poor HRQOL, depression, lower socioeconomic status, and ethnic minority group membership. Clearly, type 2 diabetes in children and adolescents, with its frequent comorbidities of obesity and depression, makes this group vulnerable to poor health-related quality of life.

A PILOT STUDY

During the past decade, empirical research about children and adolescents with type 1 diabetes consistently has documented that developmentally appropriate parent involvement in the tasks of managing diabetes at home is related to better glycémie control, improved adherence to treatment, and less diabetesspecific family conflict.15"17 As parent involvement has been so clearly linked to improved health outcomes in children and adolescents with type 1 diabetes, as well as in pediatric weight loss interventions for obese children and adolescents,18 it is appropriate to ask whether parent involvement in the management of type 2 diabetes is related to health outcomes in children and adolescents with type 2 diabetes.

Although the earliest publications on type 2 diabetes in youth called it a "family disease,"19 this referred to the high heritability of type 2 diabetes and the contribution of family lifestyle behavior to the development of the disease in children. We could identify no published studies of disease management behavior of families with respect to health outcomes in type 2 diabetes.

In contrast to children with type 1 diabetes, children with type 2 diabetes often are diagnosed at puberty and generally require multiple oral medications or insulin injections. There is less immediate physiological feedback from these medications, and blood glucose levels are monitored less frequently than in type 1 diabetes. There are fewer acute emergencies and episodes of hypoglycemia in children with type 2 diabetes, but they often have other cardiovascular and endocrine comorbidities, such as elevated blood pressure, elevated blood lipids, and irregular menses with polycystic ovarian syndrom, and may require medications to control these conditions.

The treatment priority in pediatric type 2 diabetes is optimal blood glucose control through weight loss and lifestyle change. However, as mentioned in the earlier section on quality of life, children and adolescents with type 2 diabetes are frequently come from families of minority ethnic background and lower socioeconomic status. It is also very common that other family members, especially parents, are obese and have type 2 diabetes and physical complications from type 2 diabetes. Therefore, from a broader perspective, parents of children and adolescents with type 2 diabetes have multiple stressors in addition to their child's diabetes and experience very real barriers with respect to improving the family's physical activity and healthy eating. Many are low-income families who struggle to access economic resources, healthcare, transportation, housing, and safe neighborhoods. Thus, disease management is but one important priority faced by many parents of children and adolescents with type 2 diabetes.

Assessing Diabetes-Specific Family Behavior in Pediatric Type 2 Diabetes

To examine the relationship between metabolic control in children and adolescents with type 2 diabetes and parental involvement in diabetes management, we adapted the Diabetes Family Responsibility Questionnaire (DFRQ),20 which had been designed and validated for type 1 diabetes, to address treatment issues specific to type 2 diabetes.21 Our research aims were to establish the internal consistency of this new DFRQT2 questionnaire for parents and children, to identify subscales through factor analysis, and to carry out a pilot study with a representative sample of children and adolescents with type 2 diabetes and their parents to examine the relationship between glycémie control and parent involvement in diabetes management tasks.

Table

TABLE 3.Demographic Characteristics of Families in the Pilot Study

TABLE 3.

Demographic Characteristics of Families in the Pilot Study

Subjects

We studied 75 children and adolescents who received their diabetes care at the outpatient Diabetes Care Center at Texas Children's Hospital, Houston, TX, and a parent who accompanied them to clinic. The children had been diagnosed with type 2 diabetes for at least 6 months and were ages 9 to 17; both parent and child spoke English or Spanish as a primary language and could complete a self-report questionnaire in English or Spanish.

In this sample of convenience, eligible patients who were accompanied to clinic by a parent or guardian were approached in the clinic waiting room by a trained research assistant and informed about the study. Interested parents signed informed consent and the children gave written assent to participate. All of the parents in this study were mothers. This study was approved by the Institutional Review Board for the Protection of Human Subjects of Baylor College of Medicine. The parent and child were each given a $50.00 gift card for their time.

Of the sample, 38% were boys and 62% were girls; 42% were black, 45% Hispanic, and 12% Caucasian (Table 1, see page 724). The average age was 14.7. The average duration of diabetes was 2.5 years, and hemoglobin AlC levels ranged from 4.3% to 14%, with a mean level of 8.3% and median of 7.7% (Table 2, see page 724). Average body mass index (BMI) was 34.3, and 95% of the children had a BMI of at least the 85th percentile for age - the CDC threshold for the diagnosis of at risk for overweight. In addition, 88% of the children had a first-degree relative who had type 2 diabetes (Table 3).

Of the the parents participating, 51% had a high school education or less, 30% had some college or technical training, and 18% had graduated from college (Table 3).

Methods

To adapt the DFRQ to be appropriate for type 2 diabetes, a multidisciplinary team of medical, nursing, nutritional, and psychosocial providers experienced in the care of both type 1 diabetes and type 2 diabetes patients reviewed and revised the original 17 items. Two items related to hypoglycemia were omitted from the new DFRQ-T2. The new DFRQ-T2 included 15 items describing a range of diabetes management situations that occur at home and away from home. Parents and children were asked to respond on a 3-point scale and to check the box that best describes the way each diabetes task or situation had been handled in their family during the previous month. A higher score indicated that the parent had less involvement. The response scale was:

* 1 = Parent took responsibility for handling the diabetes most of the time.

* 2 = Parent and child shared responsibility about equally.

* 3 = Child took responsibility most of the time.

Glycémie control was measured by routinely recording the glycosylated hemoglobin AlC level in blood taken from patients at their regular diabetes clinic visits, using the Bayer DCA 2000+ GIycoHemoglobin Analyzer.

Results

The internal consistency of the Total DFRQ-T2 was calculated and yielded acceptable values for parents (alpha = .85) and for children (alpha = .74). A principal components factor analysis with varimax rotation yielded the same two 7-item factors for both children and parents. One item that concerned telling friends about diabetes did not load on either factor for youth or parents, so this item was not included in either subscale. The items on Factor One related to diabetes regimen tasks that were carried out at home, and the items on Factor Two related to a proactive approach to diabetes management and to supporting diabetes care outside of the home. These two factors and their items and alphas are listed in the Sidebar.

To examine the relationship between glycémie control and parent involvement, we divided the children into 2 groups: 39 had acceptable glycémie control (hemoglobin AlC level less than 8%), and 36 had unacceptable glycémie control (hemoglobin AlC level equal to or greater than 8%). We compared the mean DFRQ-T2 total scale score and subscale scores for parents and for children according to the child's glycémie control status using analysis of variance (Tables 4 and 5, see page 727).

For parents, significant differences were found only for the Social and Proactive Diabetes Care Actions Subscale. Parents of children in the unacceptable control group reported the children took more responsibility for the more social and proactive diabetes care actions than did the parents of children in the acceptable control group. There were no significant differences between parents in acceptable versus unacceptable control group for the DFRQ-T2 total scale score or the Managing Regimen Tasks at Home Subscale.

Similarly, comparisons of the mean scores on the subscales and total scale for children according to their glycémie control status indicated significant differences only for the Social and Proactive Diabetes Care Actions Subscale, with those in the unacceptable control group reporting less parent involvement in social and proactive diabetes care actions than did children in the acceptable control group. There were no significant differences between children in acceptable and unacceptable Control for the DFRQT2 Total Scale Score or the Managing Regimen Tasks at Home Subscale.

Summary of Pilot Study

We found that the DFRQ could be adapted to pediatric type 2 diabetes, yielding a reliable total scale and two reliable subscales. In addition, we found that, while parental involvement in the regimen tasks of diabetes management carried out at home were not related to the child's glycémie control, children and mothers in the acceptable control group reported that mothers took significantly more responsibility for Social and Proactive Diabetes Care Activities as compared with those in the unacceptable control group. This pilot study was cross-sectional, and no causal conclusions are warranted.

Whereas there is a well-documented relationship in children with type 1 diabetes between better glycémie control and higher levels of maternal involvement in the tasks of managing diabetes at home, in our sample of children with type 2 diabetes, it was maternal involvement in managing diabetes outside the home that were associated with better glycémie control. This difference may relate to some of the fundamental differenees between these two chronic diseases and their associated treatment strategies, as well as their differential effect on the family system. For example, parents of children with type 1 diabetes often try to be informed about their child's dose of insulin, which fluctuates on a daily basis for children in intensive therapy. Thus, parents may monitor their child's blood sugar level readings closely to assist with insulin dose adjustments.

Table

TABLE 4.Mean of the DFRQ-T2 Total and Subscale Scores of Parents in the Pilot Study by Child's Glycemic Control Status

TABLE 4.

Mean of the DFRQ-T2 Total and Subscale Scores of Parents in the Pilot Study by Child's Glycemic Control Status

Table

TABLES.Mean of the DFRQ-T2 Total and Subscale Scores of Children in the Pilot Study by Glycemic Control Status

TABLES.

Mean of the DFRQ-T2 Total and Subscale Scores of Children in the Pilot Study by Glycemic Control Status

However, for children with type 2 diabetes, there is much less adjustment of medication doses and less need for intense monitoring of blood sugar levels. Therefore, it makes sense that parental involvement in diabetes tasks at home may be more closely associated with glycémie control in children and adolescents with type 1 diabetes than in children and adolescents with type 2 diabetes.

It also is important to remember that the factor analyses of the DFRQ for type 1 diabetes and for type 2 diabetes yielded different factors (subscales), and this may also have accounted for the contrasting findings. In addition, as pointed out earlier, there are significant ethnic and socioeconomic differences between children and families living with type 1 diabetes and type 2 diabetes, which may also have contributed to these results.

In summary, our results are striking in the similar pattern of responses of children and of their parents concerning the relationship between better glycémie control and higher levels of maternal involvement in the proactive diabetes care actions in school, with relatives, and with healthcare providers. It is possible that we were tapping into a general parenting style of increased involvement and proactivity in their children's lives outside of the home; however, no other parenting measures were gathered in this pilot study.

DIRECTIONS FOR FUTURE RESEARCH AND CARE

We are now at a critical crossroads with epidemics of obesity and type 2 diabetes in minority youth and a lack of innovations in behavioral, educational, and medical approaches targeted to this high-risk group of children and families. It is well documented that, in youngsters with chronic physical diseases, the family environment is the foundation on which effective self-care behaviors are built.22,23 We also know that during childhood, dietary and physical activity patterns develop within the context of the family.24 Therefore, given the strong evidence for genetic and environmental influences on the weight status of children, future research in pediatric type 2 diabetes must target both the child and the family. Mindful of the many economic barriers and social challenges facing the families of children and adolescents with type 2 diabetes as they manage this disease, it will be important for future research to identify realistic and "potentially modifiable" parent and family behavior that effect positive health outcomes in children.

Research about children with type 2 diabetes and their families must consider the common comorbidity of depression both in children and their parents who live with diabetes and obesity. We need to understand more completely how depression interacts with adherence to diabetes treatment and weight loss attempts.

Our pilot study demonstrated the successful adaptation to patients with type 2 diabetes of a tool originally developed for children with type 1 diabetes. However, many of the challenges of lifestyle behavior change were not assessed in this adapted tool. Other new measures need to be developed for this specific chronic childhood disease that are more tailored to the disease management realities of children with type 2 diabetes and their families.

Finally, from a public health perspective, these minority children who are incurring the diagnosis of type 2 diabetes during adolescence are at heightened risk of developing the debüitating microvascular and macrovascular complications of poorly controlled type 2 diabetes during their early adult years,25 at great personal (eg, quality of life, disability and loss of income) and societal (eg, increased health care dollars) costs. Therefore, with our current rampant rise of obesity and type 2 diabetes in minority children, there is a critical need for innovative interventions and practical clinical research, which then can be tailored to the needs of this group of patients and their families, and which have the potential to improve biological and behavioral outcomes in this high-risk group.

REFERENCES

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2. Routh DK. The family as a frontier in child health psychology. In: Johnson J, Johnson SB, eds. Advances in Child Health Psychology. Gainesville FL: University of Florida Press; 1991:223-331.

3. Varni JW, Burwinkle TM, Jacobs JR, et al. The PedsQL in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Type 1 Diabetes Module. Diabetes Care. 2003;26(3):63 1-637.

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7. Dwyer T, Salus JF, Blizzard L, Lazarus R, Dean K. Relation of academic performance to physical activity and fitness in children. Pediatric Exercise Science. 2001;13:225-237.

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9. Hill AJ, Iissau A. Psychosocial factors. In: Burniat W, Cole TJ, Lassau I, Poskitt EME, eds. Child and Adolescent Obesity. Cambridge, England: Cambridge University Press; 2002:109-127.

10. Schwimmer JB, Burwinkle TM, Varni JW. Health-related quality of life of severely obese children and adolescents. JAMA. 2003; 289(14): 1813-1819.

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13. Swallen KC, Reither EN, Haas SA, Meier AM. Overweight, obesity, and health-related quality of life among adolescents: the National Longitudinal Study of Adolescent Health. Pediatrics. 2005;115(2):340-347.

14. Anderson RJ, Clouse RE, Freedland KE, Lustman PJ. The prevalence of comorbid depression in adults with diabetes: a meta-analysis. Diabetes Care. 2001;24(6):1069-1078.

15. Anderson BJ, Brackett J, Ho J, Laffel L. An office-based intervention to maintain parentadolescent teamwork in diabetes management. Impact on parent involvement, family, conflict and subsequent glycémie control. Diabetes Care. 1999;22(5):713-721.

16. Weissberg-Benchell J, Glasgow A, Tynan W, et al. Adolescent diabetes management and mismanagement. Diabetes Care. 1995;18(1):7782.

17. Wysocki T, Taylor A, Hough BS, et al. Deviation from developmentally appropriate selfcare autonomy. Association with diabetes outcomes. Diabetes Care. 1996;19(2):1 19-125.

18. Wrotniak BH, Epstein LK, Paluch RA, Roemmich JN. Parent weight change as a predictor of child weight change in family-based behavioral obesity treatment. Arch Pediatr Adolesc Med. 2004;158(4):342-347.

19. Pinhas-Hamiel O, Standiford D, Hamiel D, et al. The type 2 family: a setting for the development and treatment of adolescent type 2 diabetes mellitus. Arch Pediatr Adolesc Med. 1999; 153(10): 1063- 1067.

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TABLE 1.

Demographic Characteristics of Children in the Pilot Study

TABLE 2.

Clinical Characteristics of Children in the Pilot Study

TABLE 3.

Demographic Characteristics of Families in the Pilot Study

TABLE 4.

Mean of the DFRQ-T2 Total and Subscale Scores of Parents in the Pilot Study by Child's Glycemic Control Status

TABLES.

Mean of the DFRQ-T2 Total and Subscale Scores of Children in the Pilot Study by Glycemic Control Status

10.3928/0090-4481-20050901-12

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