A substantial research base developed over the past four decades provides evidence for the significant role of psychosocial factors in the management of type 1 diabetes in children and adolescents (1–6). This chapter reviews the main findings from the studies of psychological adjustment, psychiatric disorders, neurocognitive and educational functioning, family dynamics, social support, stress and coping, quality of life, and behavioral interventions in children and adolescents with type 1 diabetes. Based on these research findings, recommendations for optimal psychological care are offered.
The research base for the psychological care of young people with type 2 diabetes is sparse. Therefore, this chapter does not address type 2 diabetes specifically.
The International Society of Pediatric and Adolescent Diabetes (ISPAD) Consensus Guidelines 2000 stated that “Psychosocial factors are the most important influences affecting the care and management of diabetes” and went on to make the following three general recommendations (7):
- (i)
Social workers and psychologists should be part of the interdisciplinary health care team;
- (ii)
Overt psychological problems in young persons or family members should receive support from the diabetes care team and expert attention from mental health professionals;
- (iii)
The diabetes care team should receive training in the recognition, identification, and provision of information and counseling on psychosocial problems related to diabetes.
These general recommendations remain appropriate and are amplified below with more specific recommendations for psychological care.
Psychological adjustment and psychiatric disorders
Research findings indicate that children with type 1 diabetes are at risk for adjustment problems during the initial period of adaptation after diagnosis (8, 9) (B). When adjustment problems exist, children are at higher risk for continued adjustment difficulties (9–11) (B). There is growing evidence, particularly from North America, that young people with diabetes appear to have a greater incidence of psychiatric disorders (12–14) (B). In a 10-yr prospective study from diagnosis of type 1 diabetes, adolescents were at high risk for various psychiatric diagnoses; females were more likely than males to receive a diagnosis, and half of those with a history of poor glycemic control had a psychiatric diagnosis (14) (B). Children with recurrent diabetic ketacidosis (DKA) are more likely to have psychiatric disorders than children in good metabolic control (15) (B). Depression has been associated with poor glycemic control and increased hospitalizations (16–19) (B); although, more study of this issue is needed. Studies also indicate that behavioral problems are associated with poor glycemic control (20, 21) (B). While a recent longitudinal study of young adolescents did not reveal group differences in psychosocial adjustment, social difficulties and eating disturbance among youth with type 1 diabetes emerged over time (22) (B).
There is also evidence that adolescents with diabetes, especially girls, have a higher incidence of eating disorders, and that eating disorders are associated with poor glycemic control (23–25) (B). It is estimated that 10% of adolescent girls with type 1 diabetes may meet diagnostic criteria for an eating disorder, a rate twice as common as in girls without diabetes (24) (B). Without intervention, disordered eating and insulin manipulation may worsen over time and increase the risk of serious health complications (26) (B). Even at subclinical levels, glycemic control has been observed to worsen with increasing symptoms of eating disorder (27, 28) (B). However, in one recent study, although eating disorders were common in young girls with type 1 diabetes, there was no relationship observed between eating disturbance and glycemic control (29) (B).
Poor metabolic control has been associated with a number of other psychosocial problems including anxiety and poor self-esteem (30) (C). When psychological adjustment problems persist into late adolescence, there is evidence indicating greater risk for poor diabetes management during early adulthood (31, 32) (B).
Neurocognitive and school functioning
Studies of neurocognitive functioning indicate that young people with diabetes are at increased risk for information processing weaknesses and learning problems, especially with early diabetes onset (33, 34) (B) and history of severe hypoglycemia (35–37) (B). Research also indicates that diabetic youths are more likely to have learning problems, with such problems more frequent among boys than girls (38, 39) (B). Academic achievement and school performance are lower in children with poor metabolic control (40) (C).
Prospective studies of newly diagnosed children have demonstrated mild neuropsychological deficits 2 yr after diagnosis, with reduced speed of information processing and decrements in conceptual reasoning and acquisition of new knowledge (41) (B). Such problems were predicted by early onset of diabetes (prior to the age of 4 yr), which was related to poorer visuospatial functioning, and both recurrent severe hypoglycemia and hyperglycemia, which was related to decreased memory and learning capacity (42) (B). Study of neuropsychological functioning 6 yr after diagnosis found that children with diabetes performed more poorly on measures of intelligence, attention, processing speed, and long-term memory than the control children. Children with early diabetes onset (before the age of 4 yr) showed weaknesses in attention, processing speed, and executive functioning, while those with recurrent severe hypoglycemia had lower overall intellectual abilities (43) (B).
A recent study examining school experiences of students with diabetes found better glycemic control and quality of life when school personnel and friends had received some training in diabetes and its management (44) (C).
Family functioning
The research literature has consistently demonstrated that family factors are integral to the management of diabetes in children. The findings from a number of cross-sectional and prospective studies have shown that high levels of family cohesion, agreement about diabetes management responsibilities, and supportive behaviors are associated with better regimen adherence and glycemic control, while conflict, diffusion of responsibilities and regimen-related conflict have been associated with worse regimen adherence and glycemic control (30, 45–52) (B, C). Significant family dysfunction for the majority of families has been observed in clinical studies of adolescents with recurrent DKA [(15) (B), (53, 54) (C)].
Studies have also shown that socio-demographic factors such as single parenthood (55–57) (B) and lower income and ethnic minority status in the USA (58–61) (B) are associated with greater risk for poor control of diabetes.
It is important to note that many parents have psychological problems after the diagnosis of type 1 diabetes in their children. Mothers appear to be at risk for psychological adjustment problems after their child’s diagnosis, with clinically significant depression noted in approximately one-third of mothers. However, most of these adjustment problems are resolved within the first year after the child’s diagnosis (62) (C). Fewer studies have addressed psychological functioning in fathers. One study found that 24% of mothers and 22% of fathers met criteria for a diagnosis of posttraumatic stress disorder 6 wk after their child had been diagnosed (63) (C). Another study found that psychological maladjustment of fathers predicted poor glycemic control in children 5 yr after diagnosis (64) (C).
Social support
Social support from parents and other family members is especially important for children and adolescents with type 1 diabetes. Research has shown that family members who provide high levels of support for diabetes care have youngsters who adhere better to their diabetes regimen (50, 65) (C). It was also noted that levels of diabetes-specific family support were inversely related to youngsters’ age (older children and adolescents report significantly less family support for diabetes). Youths may receive instrumental support from their families and also considerable emotional support from their friends (50) (C). When youth attribute negative peer reactions to their self-care, they are more likely to have adherence difficulties and increased diabetes stress, which in turn worsens glycemic control (66) (B).
Stress and coping
Studies have shown that children with high life stress tend to have worse glycemic control (49, 67, 68) (C). Diabetes-specific stress has also been linked to poor glycemic control (66) (B). Research examining attributional and coping styles has indicated that youths in poor metabolic control are more likely to use the learned helplessness style (69) (C) and engage in avoidance and wishful thinking in response to stress (70, 71) (C), while youths in good glycemic control have high levels of self-efficacy (72) (C) and engage in active coping (71) (C). Maladaptive coping has also been associated with poor regimen adherence (73) (C).
The health belief model has been studied in adolescents. Findings indicate that beliefs related to the seriousness of diabetes, personal vulnerability to complications, costs of regimen adherence, and beliefs in the efficacy of treatment have been associated with both regimen adherence and glycemic control (74–76) (B, C). Studies have also shown that their personal models of illness belief for diabetes were associated with psychological adjustment and regimen adherence: greater impact of diabetes was related to increased anxiety, while beliefs about the effectiveness of treatment predicted better dietary self-care (77) (B). Personal model beliefs about diabetes were also shown to mediate the relationship between personality variables (emotional stability and conscientiousness) and self-care behaviors (78) (B). Studies of health risks associated with diabetes indicate that youth underestimate their own risks while acknowledging greater risks of diabetes attributed to other youths (79) (C).
Quality of life
Some research findings indicate that the quality of life is lower among youths with diabetes compared with healthy children (80, 81) (B), particularly when parents rate their child’s quality of life (81–83) (B). There is also some evidence that quality of life is lower in girls and youths with shorter disease duration (84) (C) and in those with diabetes-related family conflict (85) (B). Less favorable quality of life also appears to be related with youths’ perceptions that diabetes is upsetting, difficult to manage, and stressful and is related to higher levels of depression (86) (C). Another study found lower quality of life was associated with depression and lower socioeconomic status (87) (C). There is some evidence that better quality of life is associated with better glycemic control, but the relationship between glycemic control and quality of life appears modest (87–91) (B, C). Quality of life does not appear to be adversely affected by use of the insulin pump (92) (B). In general, when diabetic youth rate their own quality of life, they tend not to rate themselves very differently from their healthy peers (81–83, 85, 91, 93) (B, C).
Psychosocial and behavioral interventions
Systematic reviews of the literature indicate that a number of controlled studies have shown the efficacy of psychosocial and behavioral interventions for children and adolescents with diabetes (1–4, 94) (A); although, this literature is not without some methodological limitations (95, 96) (A). Most of these interventions have included the family as an integral part of treatment.
The results of these studies indicate that family-based, behavioral procedures such as goal setting, self-monitoring, positive reinforcement, behavioral contracts, supportive parental communications, and appropriately shared responsibility for diabetes management have improved regimen adherence and glycemic control (97, 98) (A). In addition, these interventions have improved the parent–adolescent relationship (97, 99–101) (A) and improved regimen adherence (101) (A). Recent studies of behavioral family systems therapy with diabetes-specific tailoring have shown improvements in family conflict and regimen adherence (102) (A) as well as improved glycemic control over 18 months (103) (A).
Given the crisis that diagnosis presents for children and families, the period just after diagnosis presents opportunities for intervention. Interdisciplinary intervention programs have been described and reported to improve outcomes (104, 105) (C). Psychoeducational interventions with children and their families that promote problem-solving skills and increase parental support early in the disease course have been shown to improve long-term glycemic control of children (106) (A). Other trials involving psychosocial intervention after diagnosis showed improved family functioning without improved glycemic control (107, 108) (A).
Research has shown that when parents allow older children and adolescents to have self-care autonomy without sufficient cognitive and social maturity, youths are more likely to have problems with diabetes management (109) (B). Thus, a critical aspect of behavioral family management of diabetes is finding ways for parents and family members to remain involved and supportive, but not intrusive, in their youngsters’ daily care.
An intervention based on family-focused teamwork increased family involvement without causing family conflict or adversely affecting youth quality of life and helped prevent worsening of glycemic control (110) (A). A psychoeducational intervention delivered by a ‘care ambassador’ at regular outpatient visits was shown to improve the frequency of outpatient visits and reduced acute adverse outcomes such as hypoglycemia and emergency department visits (111) (A).
Another approach utilized intensive home-based multi-systemic therapy with inner city adolescents in chronically poor metabolic control, a patient population that has not received much attention in the intervention literature. Initial studies of this approach suggested that it had potential to improve outcomes (112) (C). The results of a recent larger trial indicated that this approach improved frequency of blood glucose monitoring, reduced inpatient admissions, improved glycemic control, and reduced medical costs (113, 114) (A).
Peer group interventions have also been evaluated and indicate that peer group support and problem solving can improve short-term glycemic control (115, 116) (A). Group coping skills training improved glycemic control and quality of life for adolescents involved in intensive insulin regimens (117–119) (A). Stress management, problem-solving and coping skills training delivered in small groups of youths has reduced diabetes-related stress (120, 121) (A), improved social interaction (122) (A), and increased glucose monitoring and improved glycemic control (123) (A).
It is crucial to maintain consistent contact with families as research findings indicate that children who have infrequent and irregular visits with the health care team are more likely to have significant problems with metabolic control (124, 125) (B). It is also important to note that early adolescence represents a high-risk time for diabetes management, with worsening of adherence observed over time (126, 127) (B), which may be because of decreased parental involvement.
Motivational interviewing appears to be a promising approach for adolescents, with initial studies showing improved glycemic control (128, 129) (C). A recent multicenter randomized trial demonstrated that motivational interviewing with adolescents improved long-term glycemic control and quality of life (130) (A).
In summary, the results of controlled intervention research have shown that family-based interventions utilizing positive reinforcement and behavioral contracts, communication skills training, negotiation of diabetes management goals, and problem-solving skills training have led not only to improved regimen behaviors and glycemic control but also to improved family relationships (A). Group interventions for young people with diabetes targeting coping skills have also shown positive effects on regimen adherence, glycemic control, and quality of life (A). Individual interventions with adolescents have shown motivational interviewing to improve long-term glycemic control and psychosocial outcomes (A).
Recommendations
The following recommendations build upon the ISPAD 2000 Guidelines (7) and are consistent with recent statements and guidelines issued by the American Diabetes Association (131), Australia (Australasian Paediatric Endocrine Group Clinical Practice Guidelines, www.nhmrc.gov.au/publications), Canada (www.diabetes.ca/cpg2003), and the UK (www.nice.org.uk/pdf/type1diabetes).
These mental health specialists should include psychologists and social workers.
- (i)
Mental health professionals should be available to interact not only with patients and families at clinic visits to conduct screening and more complete assessments of psychosocial functioning but also to support the diabetes team in the recognition and management of mental health and behavior problems (A, E).
- (ii)
There should be easy access to consult psychiatrists for cases involving severe psychopathology and the potential need for psychotropic medications (E).
- (iii)
All mental and behavioral health specialists should have training in diabetes and its management (E).
- (iv)
The interdisciplinary diabetes health care team should strive to maintain regular, consistent, and uninterrupted contact with patients and their families. When clinic visits are missed or not frequent, other modes of contact should be made available such as by phone or by email (B, E).
- (v)
Assessment of developmental progress in all domains of quality of life (i.e., physical, intellectual, academic, emotional, and social development) should be conducted on a routine basis (B, E). Quality of life can be reliably measured with good clinical utility (132) (A). It is especially important to monitor the school performance of children who developed diabetes before the age of 5 yr and with a history of significant hypoglycemic episodes at early ages (B). These children, as well as all children experiencing learning difficulties at school, should be referred for a psychoeducational or neuropsychological evaluation in order to determine if learning disabilities are present (B). Specific diabetes care plans should be formulated for the school setting and training conducted with school staff concerning diabetes management (B, E).
- (vi)
Routine assessment should be made of developmental adjustment to and understanding of diabetes management, including diabetes-related knowledge, insulin adjustment skills, goal setting, problem-solving abilities, regimen adherence, and self-care autonomy and competence. This is especially important during late childhood and prior to adolescence when in many families, the child may take on diabetes management responsibilities without adequate maturity for effective self-care (B).
- (vii)
Identification of psychosocial adjustment problems, depression, eating disorders, and other psychiatric disorders should be conducted at planned intervals by mental health professionals (B, E). These assessments are particularly important in young people not achieving treatment goals or who exhibit chronically poor metabolic control (high hemoglobin A1c and recurrent DKA) (B, E).
- (viii)
The interdisciplinary team should aim to provide preventive interventions for patients and families (include training parents in effective behavior management skills) at key developmental times, particularly after diagnosis and prior to adolescence (A, E). These interventions should emphasize appropriate family involvement and support (i.e., teamwork) in diabetes management, effective problem-solving and self-management skills, and realistic expectations about glycemic control (A, E).
- (ix)
The interdisciplinary team should aim to provide an assessment of general family functioning (conflict, cohesion, adaptability, and parental psychopathology) and diabetes-related functioning (communication, parental involvement and support, and roles and responsibilities for self-care behaviors) especially when there is evidence of cultural, language, or family problems or difficulties in adjustment to diabetes (B, E).
- (x)
Evidence-based psychosocial, behavioral, or psychiatric interventions should be made available for patients or families exhibiting conflict, disordered communication, behavioral or psychiatric difficulties, or adherence problems affecting glycemic control (A, B, and E).
- (xi)
In counseling young people and parents regarding advances in diabetes management and encouraging the intensification of insulin regimens, motivational interviewing may be useful (A). This may help in clarifying patient and parental goals and resolve ambivalence about regimen intensification. Patients should not be denied access to regimen intensification based on perceptions of limited competence as even youth with low self-management competence have been shown to improve with intensive insulin therapy (133) (A).
- (xii)
Adolescents should be encouraged to assume increasing responsibility for diabetes management tasks but with continuing, mutually agreed parental involvement and support (A, E). The transition to adult diabetes care should be discussed, negotiated and carefully planned between adolescents, their parents, and the adult diabetes team well in advance of the actual transfer to adult care (E) (see Guideline on Adolescence).
References
- 1
Delamater AM.
Psychological issues in children and adolescents with type 1 diabetes mellitus. In: R Menon,
M Sperling, eds. Pediatric Diabetes. Kluwer Academic Publishers, Norwell, MA, 2003.
- 2
Delamater AM,
Jacobson AM,
Anderson B et al. Psychosocial therapies in diabetes: report of the psychosocial therapies working group.
Diabetes Care
2001: 24: 1286–1292.
- 3
Hampson SE,
Skinner RC,
Hart J et al. Behavioral interventions for adolescents with type 1 diabetes: how effective are they?
Diabetes Care
2000: 23: 1416–1422.
- 4
Winkley K,
Landau S,
Eisler I,
Ismail K.
Psychological interventions to improve glycaemic control in patients with type 1 diabetes: systematic review and meta-analysis of randomised controlled trials.
BMJ
2006: 333: 65–68.
- 5
Z Laron., ed. Psychological Aspects of Balance of Diabetes in Juveniles, Pediatric Adolescent Endocrinology. S. Karger, Basel, 1977: 3: 1–120.
- 6
Z Laron,
A Galatzer., eds. Psychological Aspects of Diabetes in Children and Adolescents, Pediatric and Adolescent Endocrinology, S. Karger, Basel, 1982: 10: 1–247.
- 7
ISPAD.
Consensus Guidelines for the Management of Type 1 Diabetes Mellitus in Children and Adolescents
2000 (available from
http://www.diabetesguidelines.com/health/dkw/pro/guidelines/ispad/ispad/asp).
- 8
Kovacs M,
Feinberg TL,
Paulauskas S,
Finkelstein R,
Pollock M,
Crouse-Novak M.
Initial coping responses and psychosocial characteristics of children with insulin-dependent diabetes mellitus.
J Pediatr
1985: 106: 827–834.
- 9
Grey M,
Cameron M,
Lipman T,
Thurber F.
Psychosocial status of children with diabetes in the first 2 years after diagnosis.
Diabetes Care
1995: 18: 1330–1336.
- 10
Jacobson AM,
Hauser ST,
Lavori P et al. Family environment and glycemic control: a four-year prospective study of children and adolescents with insulin-dependent diabetes mellitus.
Psychosom Med
1994: 56: 401–409.
- 11
Kovacs M,
Ho V,
Pollock MH.
Criterion and predictive validity of the diagnosis of adjustment disorder: a prospective study of youths with new-onset insulin-dependent diabetes mellitus.
Am J Psychiatry
1995: 152: 523–528.
- 12
Blanz B,
Rensch-Riemann B,
Fritz-Sigmund D,
Schmidt M.
IDDM is a risk factor for adolescent psychiatric disorders.
Diabetes Care
1993: 16: 1579–1587.
- 13
Kovacs M,
Goldston D,
Obrosky D,
Bonar L.
Psychiatric disorders in youths with IDDM: rates and risk factors.
Diabetes Care
1997: 20: 36–44.
- 14
Northam EA,
Matthews LK,
Anderson PJ,
Cameron FJ,
Werther GA.
Psychiatric morbidity and health outcome in type 1 diabetes—perspectives from a prospective longitudinal study.
Diabet Med
2004: 22: 152–157.
- 15
Liss D,
Waller D,
Kennard B,
McIntire D,
Capra P,
Stephens J.
Psychiatric illness and family support in children and adolescents with diabetic ketoacidosis: a controlled study.
J Am Acad Child Adolesc Psychiatry
1998: 37: 536–544.
- 16
La Greca AM,
Swales T,
Klemp S,
Madigan S,
Skyler J.
Adolescents with diabetes: gender differences in psychosocial functioning and glycemic control.
Child Health Care
1995: 24: 61–78.
- 17
Hood K,
Huestis S,
Maher A,
Butler D,
Volkening L,
Laffel L.
Depressive symptoms in children and adolescents with type 1 diabetes.
Diabetes Care
2006: 29: 1389–1391.
- 18
Stewart S,
Rao U,
Emslie G,
Klein D,
White P.
Depressive symptoms predict hospitalization for adolescents with type 1 diabetes mellitus.
Pediatrics
2005: 115: 1315–1319.
- 19
Lawrence J,
Standiford D,
Loots B et al. for the
SEARCH for Diabetes in Youth Study. Prevalence and correlates of depressed mood among youth with diabetes: the SEARCH for diabetes in youth study.
Pediatrics
2006: 117: 1348–1358.
- 20
Naar-King S,
Idalkski A,
Ellis D et al. Gender differences in adherence and metabolic control in urban youth with poorly controlled type 1 diabetes: the mediating role of mental health symptoms.
J Pediatr Psychol
2006: 31: 793–802.
- 21
Holmes C,
Chen R,
Streisand R et al. Predictors of youth diabetes care behaviors and metabolic control: a structural equation modeling approach.
J Pediatr Psychol
2006: 31: 770–784.
- 22
Helgeson VS,
Snyder PR,
Escobar O,
Siminerio L,
Becker D.
Comparison of adolescents with and without diabetes on indices of psychosocial functioning for three year.
J Pediatr Psychol
2007: 32: 794–806.
- 23
Daneman D,
Olmsted M,
Rydall A,
Maharaj S,
Rodin G.
Eating disorders in young women with type 1 diabetes: prevalence, problems and prevention.
Horm Res
1998: 50(Suppl. 1): 79–86.
- 24
Jones JM,
Lawson ML,
Daneman D,
Olmsted MP,
Rodin G.
Eating disorders in adolescent females with and without type 1 diabetes: cross sectional study.
Br Med J
2000: 320: 1563–1566.
- 25
Neumark-Sztainer D,
Patterson J,
Mellin A et al. Weight control practices and disordered eating behaviors among adolescent females and males with type 1 diabetes: associations with sociodemographics, weight concerns, familial factors, and metabolic outcomes.
Diabetes Care
2002: 25: 1289–1296.
- 26
Rydall AC,
Rodin GM,
Olmsted MP,
Devenyi RG,
Daneman D.
Disordered eating behavior and microvascular complications in young women with insulin-dependent diabetes mellitus.
N Engl J Med
1997: 336: 1849–1854.
- 27
Bryden KS,
Neil A,
Mayou RA,
Peveler RC,
Fairburn CG,
Dunger DB.
Eating habits, body weight, and insulin misuse: a longitudinal study of teenagers and young adults with type 1 diabetes.
Diabetes Care
1999: 22: 1956–1960.
- 28
Meltzer LJ,
Johnson SB,
Prine JM,
Banks RA,
Desrosiers PM,
Silverstein JH.
Disordered eating, body mass, and glycemic control in adolescents with type 1 diabetes.
Diabetes Care
2001: 24: 678–682.
- 29
Colton P,
Olmsted M,
Daneman D,
Rydall A,
Rodin G.
Disturbed eating behavior and eating disorders in preteen and early teenage girls with type 1 diabetes.
Diabetes Care
2004: 27: 1654–1659.
- 30
Anderson BJ,
Miller JP,
Auslander WF,
Santiago JV.
Family characteristics of diabetic adolescents: relationship to metabolic control.
Diabetes Care
1981: 4: 586–594.
- 31
Bryden KS,
Peveler RC,
Stein A,
Neil A,
Mayou RA,
Dunger DB.
Clinical and psychological course of diabetes from adolescence to young adulthood: a longitudinal cohort study.
Diabetes Care
2001: 24: 1536–1540.
- 32
Wysocki T,
Hough BS,
Ward KM,
Green LB.
Diabetes mellitus in the transition to adulthood: adjustment, self-care, and health status.
J Dev Behav Pediatr
1992: 13: 194–201.
- 33
Holmes C,
Richman L.
Cognitive profiles of children with insulin-dependent diabetes.
J Dev Behav Pediatr
1985: 6: 323–326.
- 34
Ryan C,
Vega A,
Longstreet C,
Drash A.
Neuropsychological changes in adolescents with insulin-dependent diabetes.
J Consult Clin Psychol
1984: 52: 335–342.
- 35
Ryan C,
Vega A,
Drash A.
Cognitive deficits in adolescents who developed diabetes early in life.
Pediatrics
1985: 75: 921–927.
- 36
Rovet J,
Alvarez M.
Attentional functioning in children and adolescents with IDDM.
Diabetes Care
1997: 20: 803–810.
- 37
Rovet J,
Ehrlich R,
Hoppe M.
Specific intellectual deficits associated with the early onset of insulin-dependent diabetes mellitus in children.
Child Dev
1988: 59: 226–234.
- 38
Holmes C,
Dunlap W,
Chen R,
Cornwell J.
Gender differences in the learning status of diabetic children.
J Consult Clin Psychol
1992: 60: 698–704.
- 39
Schoenle EJ,
Schoenle D,
Molinari L,
Largo RH.
Impaired intellectual development in children with type 1 diabetes: association with HbA1c, age of diagnosis and sex.
Diabetologia
2002: 45: 108–114.
- 40
McCarthy AM,
Kindgren S,
Mengeling M,
Tsalikian E,
Engvall J.
Factors associated with academic achievement in children with type 1 diabetes.
Diabetes Care
2003: 26: 112–117.
- 41
Northam E,
Anderson P,
Werther G,
Warne G,
Adler R,
Andrewes D.
Neuropsychological complications of IDDM in children 2 years after disease onset.
Diabetes Care
1998: 21: 379–384.
- 42
Northam E,
Anderson P,
Werther G,
Warne G,
Adler R,
Andrewes D.
Predictors of change in the neuropsychological profiles of children with type 1 diabetes 2 years after disease onset.
Diabetes Care
1999: 22: 1438–1444.
- 43
Northam EA,
Anderson PJ,
Jacobs R,
Hughes M,
Warne GL,
Werther GA.
Neuropsychological profiles of children with type 1 diabetes 6 years after disease onset.
Diabetes Care
2001: 24: 1541–1546.
- 44
Wagner J,
Heapy A,
James A,
Abbott G.
Glycemic control, quality of life, and school experiences among students with diabetes.
J Pediatr Psychol
2006: 31: 764–769.
- 45
Anderson BJ,
Auslander WF,
Jung KC,
Miller JP,
Santiago JV.
Assessing family sharing of diabetes responsibility.
J Pediatr Psychol
1990: 15: 477–492.
- 46
Anderson BJ,
Ho J,
Brackett J,
Finkelstein D,
Laffel L.
Parental involvement in diabetes management tasks: relationships to blood glucose monitoring adherence and metabolic control in young adolescents with insulin-dependent diabetes mellitus.
J Pediatr
1997: 130: 257–265.
- 47
Bobrow ES,
AvRuskin TW,
Siller J.
Mother-daughter interaction and adherence to diabetes regimens.
Diabetes Care
1985: 8: 146–151.
- 48
Davis CL,
Delamater AM,
Shaw KH et al. Parenting styles, regimen adherence, and glycemic control in 4- to 10-year-old children with diabetes.
J Pediatr Psychol
2001: 26: 123–129.
- 49
Hanson CL,
Henggeler SW,
Burghen GA.
Model of associations between psychosocial variables and health-outcome measures of adolescents with IDDM.
Diabetes Care
1987: 10: 752–758.
- 50
La Greca AM,
Auslander WF,
Greco P,
Spetter D,
Fisher EB,
Santiago JV.
I get by with a little help from my family and friends: adolescents’ support for diabetes care.
J Pediatr Psychol
1995: 20: 449–476.
- 51
Miller-Johnson S,
Emery R,
Marvin R,
Clarke W,
Lovinger R,
Martin M.
Parent-child relationships and the management of insulin-dependent diabetes mellitus.
J Consult Clin Psychol
1994: 62: 603–610.
- 52
Wysocki T.
Associations among teen-parent relationships, metabolic control, and adjustment to diabetes in adolescents.
J Pediatr Psychol
1993: 18: 441–452.
- 53
Orr D,
Golden MP,
Myers G,
Marrero DG.
Characteristics of adolescents with poorly controlled diabetes referred to a tertiary care center.
Diabetes Care
1983: 6: 170–175.
- 54
White K,
Kolman M,
Wexler P,
Polin G,
Winter RJ.
Unstable diabetes and unstable families: a psychosocial evaluation of diabetic children with recurrent ketoacidosis.
Pediatrics
1984: 73: 749–755.
- 55
Forsander GA,
Sundelin J,
Persson B.
Influence of the initial management regimen and family social situation on glycemic control and medical care in children with type 1 diabetes mellitus.
Acta Paediatr
2000: 89: 1462–1468.
- 56
Overstreet S,
Goins J,
Chen RS et al. Family environment and the interrelation of family structure, child behavior, and metabolic control for children with diabetes.
J Pediatr Psychol
1995: 20: 435–447.
- 57
Thompson SJ,
Auslander WF,
White NH.
Comparison of single-mother and two-parent families on metabolic control of children with diabetes.
Diabetes Care
2001: 24: 234–238.
- 58
Auslander WF,
Thompson S,
Dreitzer D,
White NH,
Santiago JV.
Disparity in glycemic control and adherence between African-American and Caucasian youths with diabetes: family and community contexts.
Diabetes Care
1997: 20: 1569–1575.
- 59
Delamater AM,
Albrecht DR,
Postellon DC,
Gutai JP.
Racial differences in metabolic control of children and adolescents with type I diabetes mellitus.
Diabetes Care
1991: 14: 20–25.
- 60
Delamater AM,
Shaw K,
Applegate B et al. Risk for metabolic control problems in minority youth with diabetes.
Diabetes Care
1999: 22: 700–705.
- 61
Gallegos-Macias A,
Macias S,
Kaufman E,
Skipper B,
Kalishman N.
Relationship between glycemic control, ethnicity and socioeconomic status in Hispanic and white non-Hispanic youths with type 1 diabetes mellitus.
Pediatr Diabetes
2003: 4: 19–23.
- 62
Kovacs M,
Finkelstein R,
Feinberg TL,
Crouse-Novak M,
Paulauskas S,
Pollock M.
Initial psychologic responses of parents to the diagnosis of insulin dependent diabetes mellitus in their children.
Diabetes Care
1985: 8: 568–575.
- 63
Landolt MA,
Ribi K,
Laimbacher J,
Vollrath M,
Gnehm HE,
Sennhauser FH.
Posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes.
J Pediatr Psychol
2002: 27: 647–652.
- 64
Forsander GA,
Persson B,
Sundelin J,
Berglund E,
Snellman K,
Hellstrom R.
Metabolic control in children with insulin-dependent diabetes mellitus 5 y after diagnosis: early detection of patients at risk for poor metabolic control.
Acta Paediatr
1998: 87: 857–864.
- 65
La Greca AM,
Bearman KJ.
The diabetes social support questionnaire – family version: evaluating adolescents’ diabetes-specific support from family members.
J Pediatr Psychol
2002: 27: 665–676.
- 66
Hains A,
Berlin KS,
Davies WH,
Smothers MK,
Sato AF,
Alemzadeh R.
Attributions of adolescents with type 1 diabetes related to performing diabetes care around friends and peers: the moderating role of friend support.
J Pediatr Psychol
2007: 32: 561–570.
- 67
Hanson SL,
Pichert JW.
Perceived stress and diabetes control in adolescents.
Health Psychol
1986: 5: 439–452.
- 68
Worrall-Davies A,
Holland P,
Berg I,
Goodyer I.
The effect of adverse life events on glycemic control in children with insulin dependent diabetes mellitus.
Eur Child Adolesc Psychiatry
1999: 8: 1–6.
- 69
Kuttner MJ,
Delamater AM,
Santiago JV.
Learned helplessness in diabetic youths.
J Pediatr Psychol
1990: 15: 581–594.
- 70
Delamater AM,
Kurtz SM,
Bubb J,
White NH,
Santiago JV.
Stress and coping in relation to metabolic control of adolescents with type I diabetes.
J Dev Behav Pediatr
1987: 8: 136–140.
- 71
Graue M,
Wentzel-Larsen T,
Bru E,
Hanestad B,
Sovir O.
The coping styles of adolescents with type 1 diabetes are associated with degree of metabolic control.
Diabetes Care
2004: 27: 1313–1317.
- 72
Grossman HY,
Brink S,
Hauser ST.
Self-efficacy in adolescent girls and boys with insulin-dependent diabetes mellitus.
Diabetes Care
1987: 10: 324–329.
- 73
Hanson CL,
Cigrant JA,
Harris M,
Carle DL,
Relyea G,
Burghen GA.
Coping styles in youths with insulin-dependent diabetes mellitus.
J Consult Clin Psychol
1989: 57: 644–651.
- 74
Bond GG,
Aiken LS,
Somerville SC.
The health belief model and adolescents with insulin-dependent diabetes mellitus.
Health Psychol
1992: 11: 190–198.
- 75
Brownlee-Duffeck M,
Peterson L,
Simonds JF,
Goldstein D,
Kilo C,
Hoette S.
The role of health beliefs in the regimen adherence and metabolic control of adolescents and adults with diabetes mellitus.
J Consult Clin Psychol
1987: 55: 139–144.
- 76
Palardy N,
Greening L,
Ott J,
Holderby A,
Atchison J.
Adolescents’ health attitudes and adherence to treatment for insulin-dependent diabetes mellitus.
Dev Behav Pediatr
1998: 19: 31–37.
- 77
Skinner TC,
Hampson SE.
Personal models of diabetes in relation to self-care, well-being, and glycemic control: a prospective study in adolescence.
Diabetes Care
2001: 24: 828–833.
- 78
Skinner TC,
Hampson SE,
Fife-Schaw C.
Personality, personal model beliefs, and self-care in adolescents and young adults with type 1 diabetes.
Health Psychol
2002: 21: 61–70.
- 79
Patino AM,
Sanchez J,
Eidson M,
Delamater AM.
Health beliefs and regimen adherence in minority adolescents with type 1 diabetes.
J Pediatr Psychol
2005: 30: 503–512.
- 80
Varni J,
Burwinkle T,
Jacobs J,
Gotschalk M,
Kaufman F,
Jones K.
The PedsQL in type 1 and type 2 diabetes.
Diabetes Care
2003: 26: 631–637.
- 81
Upton P,
Eiser C,
Cheung I et al. Measurement properties of the UK-English version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales.
Health Qual Life Outcomes
2005: 3: 22.
- 82
Hesketh KD,
Wake MA,
Cameron FJ.
Health-related quality of life and metabolic control in children with type 1 diabetes: a prospective cohort study.
Diabetes Care
2004: 27: 415–420.
- 83
Wake M,
Hesketh K,
Cameron F.
The child health questionnaire in children with diabetes: cross-sectional survey of parent and adolescent-reported functional health status.
Diabet Med
2000: 17: 700–707.
- 84
Ingersoll GM,
Marrero DG.
A modified quality-of-life measure for youths: psychometric properties.
Diabetes Educ
1991: 17: 114–120.
- 85
Laffel L,
Connell A,
Vangsness L,
Goebel-Fabbri A,
Mansfield A,
Anderson BJ.
General quality of life in youth with type 1 diabetes: relationship to patient management and diabetes-specific family conflict.
Diabetes Care
2003: 26: 3067–3073.
- 86
Grey M,
Boland EA,
Yu C,
Sullivan-Bolyai S,
Tamborlane WV.
Personal and family factors associated with quality of life in adolescents with diabetes.
Diabetes Care
1998: 21: 909–914.
- 87
Hassan K,
Loar R,
Anderson BJ,
Heptulla R.
The role of socioeconomic status, depression, quality of life, and glycemic control in type 1 diabetes mellitus.
J Pediatr
2006: 149: 526–531.
- 88
Guttmann-Bauman I,
Flaherty BP,
Strugger M,
McEvoy RC.
Metabolic control and quality-of-life self-assessment in adolescents with IDDM.
Diabetes Care
1998: 21: 915–918.
- 89
Hoey H,
Aanstoot H,
Chiarelli F et al., for the
Hvidore Study Group on Childhood Diabetes. Good metabolic control is associated with better quality of life in 2101 adolescents with type 1 diabetes.
Diabetes Care
2001: 24: 1923–1928.
- 90
Hesketh K,
Wake M,
Cameron FJ.
Health-related quality of life and metabolic control in children with type 1 diabetes.
Diabetes Care
2004: 27: 415–420.
- 91
Wagner VM,
Muller-Godeffroy E,
Von Sengbusch S,
Hager S,
Thyen U.
Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes mellitus.
Eur J Pediatr
2005: 164: 491–496.
- 92
Valenzuela J,
Patino AM,
Mccullough J et al. Insulin pump therapy and health-related quality of life in children and adolescents with type 1 diabetes.
J Pediatr Psychol
2006: 31: 650–660.
- 93
De Wit M,
Delemarre-vander Waal HA,
Gemke RJBJ,
Snoek FJ.
Monitoring Health Related Quality of Life (HRQoL) in adolescents. Baseline data from a randomised controlled cross-over multi-centre study (RCT: ISRCTN65138334).
Pediatr Diabetes
2006: 7: 18–57.
- 94
Hampson SE,
Skinner TC,
Hart J et al. Effects of educational and psychosocial interventions for adolescents with diabetes mellitus: a systematic review.
Health Technol Assess
2001: 5: 1–79.
- 95
Northam EA,
Todd S,
Cameron FJ.
Interventions to promote optimal health outcomes in children with type 1 diabetes—are they effective?
Diabet Med
2005: 23: 113–121.
- 96
Murphy H,
Rayman G,
Skinner TC.
Psycho-educational interventions for children and young people with type 1 diabetes.
Diabet Med
2006: 23: 935–943.
- 97
Anderson BJ,
Brackett J,
Ho J,
Laffel L.
An office-based intervention to maintain parent-adolescent teamwork in diabetes management: impact on parent involvement, family conflict, and subsequent glycemic control.
Diabetes Care
1999: 22: 713–721.
- 98
Satin W,
La Greca A,
Zigo M,
Skyler J.
Diabetes in adolescence: effects of multifamily group intervention and parent simulation of diabetes.
J Pediatr Psychol
1989: 14: 259–276.
- 99
Wysocki T,
Miller K,
Greco P et al. Behavior therapy for families of adolescents with diabetes: effects on directly observed family interactions.
Behav Ther
1999: 30: 507–525.
- 100
Wysocki T,
Harris MA,
Greco P et al. Randomized, controlled trial of behavior therapy for families of adolescents with insulin-dependent diabetes mellitus.
J Pediatr Psychol
2000: 25: 23–33.
- 101
Wysocki T,
Greco P,
Harris MA,
Bubb J,
White NH.
Behavior therapy for families of adolescents with diabetes: maintenance of treatment effects.
Diabetes Care
2001: 24: 441–446.
- 102
Wysocki T,
Harris M,
Buckloh L et al. Effects of behavioral family systems therapy for diabetes on adolescents’ family relationships, treatment adherence, and metabolic control.
J Pediatr Psychol
2006: 31: 928–938.
- 103
Wysocki T,
Harris M,
Buckloh L et al. Randomized trial of behavioral family systems therapy for diabetes: maintenance of effects on diabetes outcomes in adolescents.
Diabetes Care
2007: 30: 555–560.
- 104
Laron Z,
Galatzer A,
Amir S,
Gil R,
Karp M,
Mimouni M.
A multidisciplinary comprehensive ambulatory treatment scheme for diabetes mellitus in children.
Diabetes Care
1979: 2: 342–348.
- 105
Galatzer A,
Amir S,
Gil R,
Karp M,
Laron Z.
Crisis intervention program in newly diagnosed diabetic children.
Diabetes Care
1982: 5: 414–419.
- 106
Delamater AM,
Bubb J,
Davis S et al. Randomized, prospective study of self-management training with newly diagnosed diabetic children.
Diabetes Care
1990: 13: 492–498.
- 107
Sundelin J,
Forsander GA,
Mattson SE.
Family-oriented support at the onset of diabetes mellitus: a comparison of two group conditions during 2 years following diagnosis.
Acta Paediatr
1996: 85: 49–55.
- 108
Sullivan-Bolyai S,
Grey M,
Deatrick J et al. Helping other mothers effectively work at raising young children with type 1 diabetes.
Diabetes Educ
2004: 30: 476–484.
- 109
Wysocki T,
Taylor A,
Hough B,
Linscheid T,
Yeates K,
Naglieri J.
Deviation from developmentally appropriate self-care autonomy: association with diabetes outcomes.
Diabetes Care
1996: 19: 119–125.
- 110
Laffel L,
Vangsness L,
Connell A,
Goebel-Fabbri A,
Butler D,
Anderson BJ.
Impact of ambulatory, family-focused teamwork intervention on glycemic control in youth with type 1 diabetes.
J Pediatr
2003: 142: 409–416.
- 111
Svoren B,
Butler D,
Levine B,
Anderson BJ,
Laffel L.
Reducing acute adverse outcomes in youths with type 1 diabetes: a randomized, controlled trial.
Pediatrics
2003: 112: 914–922.
- 112
Harris MA,
Mertlich D.
Piloting home-based behavioral family systems therapy for adolescents with poorly controlled diabetes.
Child Health Care
2003: 32: 65–79.
- 113
Ellis D,
Frey M,
Naar-King S,
Templin T,
Cunningham P,
Cakan N.
Use of multisystemic therapy to improve regimen adherence among adolescents with type 1 diabetes in chronic poor metabolic control.
Diabetes Care
2005: 28: 1604–1610.
- 114
Ellis D,
Naar-King S,
Frey M,
Templin T,
Rowland M,
Cakan N.
Multisystemic treatment of poorly controlled type 1 diabetes: effects on medical resource utilization.
J Pediatr Psychol
2005: 30: 656–666.
- 115
Anderson BJ,
Wolf RM,
Burkhart MT,
Cornell RG,
Bacon GE.
Effects of peer-group intervention on metabolic control of adolescents with IDDM: randomized outpatient study.
Diabetes Care
1989: 12: 179–183.
- 116
Kaplan RM,
Chadwick MW,
Schimmel LE.
Social learning intervention to promote metabolic control in type I diabetes mellitus: pilot experimental results.
Diabetes Care
1985: 8: 152–155.
- 117
Boland EA,
Grey M,
Oesterle Al,
Fredrickson L,
Tamborlane WV.
Continuous subcutaneous insulin infusion: a new way to lower risk of severe hypoglycemia, improve metabolic control, and enhance coping in adolescents with type 1 diabetes.
Diabetes Care
1999: 22: 1779–1784.
- 118
Grey M,
Boland EA,
Davidson M,
Yu C,
Sullivan-Bolyai S,
Tamborlane WV.
Short-term effects of coping skills training as adjunct to intensive therapy in adolescents.
Diabetes Care
1998: 21: 902–908.
- 119
Grey M,
Boland E,
Davidson M,
Yu C,
Tamborlane WV.
Coping skills training for youth on intensive therapy has long-lasting effects on metabolic control and quality of life.
J Pediatr
2000: 137: 107–113.
- 120
Boardway RH,
Delamater AM,
Tomakowsky J,
Gutai JP.
Stress management training for adolescents with diabetes.
J Pediatr Psychol
1993: 18: 29–45.
- 121
Hains AA,
Davies WH,
Parton E,
Totka J,
Amoroso-Camarata J.
A stress management intervention for adolescents with type 1 diabetes.
Diabetes Educ
2000: 26: 417–424.
- 122
Mendez F,
Belendez M.
Effects of a behavioral intervention on treatment adherence and stress management in adolescents with IDDM.
Diabetes Care
1997: 20: 1370–1375.
- 123
Cook S,
Herold K,
Edidin DV,
Briars R.
Increasing problem solving in adolescents with type 1 diabetes: the choices diabetes program.
Diabetes Educ
2002: 28: 115–124.
- 124
Jacobson AM,
Hauser ST,
Willett J,
Wolfsdor J,
Herman L.
Consequences of irregular versus continuous medical follow-up in children and adolescents with insulin-dependent diabetes mellitus.
J Pediatr
1997: 131: 727–733.
- 125
Kaufman FR,
Halvorson M,
Carpenter S.
Association between diabetes control and visits to a multidisciplinary pediatric diabetes clinic.
Pediatrics
1999: 103: 948–951.
- 126
Jacobson AM,
Hauser ST,
Lavori P et al. Adherence among children and adolescents with insulin-dependent diabetes mellitus over a four-year longitudinal follow-up: I. The influence of patient coping and adjustment.
J Pediatr Psychol
1990: 15: 511–526.
- 127
Johnson SB,
Kelly M,
Henretta JC,
Cunningham WR,
Tomer A,
Silverstein JH.
A longitudinal analysis of adherence and health status in childhood diabetes.
J Pediatr Psychol
1992: 17: 537–553.
- 128
Viner R,
Christie D,
Taylor V,
Hey S.
Motivational/solution-focused intervention improves HbA1c in adolescents with type 1 diabetes: a pilot study.
Diabet Med
2003: 20: 739–742.
- 129
Channon S,
Smith VJ,
Gregory JW.
A pilot study of motivational interviewing in adolescents with diabetes.
Arch Dis Child
2003: 88: 680–683.
- 130
Channon SJ,
Huws-Thomas MV,
Rollnick S et al. A multicenter randomized controlled trial of motivational interviewing in teenagers with diabetes.
Diabetes Care
2007: 30: 1390–1395.
- 131
Silverstein J,
Klingensmith G,
Copeland K et al. Care of children and adolescents with type 1 diabetes: a statement of the American Diabetes Association.
Diabetes Care
2005: 28: 186–212.
- 132
De Wit M,
Delemarre-vander Waal HA,
Pouwer F,
Gemke RJBJ,
Snoek FJ.
Monitoring health-related-quality-of-life in adolescents with diabetes: a review of measures.
Arch Dis Child
2007: 92: 434–439.
- 133
Wysocki T,
Harris M,
Wilkinson K,
Sadler M,
Mauras N,
White NH.
Self-management competence as a predictor of outcomes of intensive therapy or usual care in youth with type 1 diabetes.
Diabetes Care
2003: 26: 2043–2047.