Adolescence (12-20 years) is a psychologically vulnerable period that is particularly challenging in the face of type 1 diabetes. Contributing challenges include the need to experience and seek autonomy (with associated risk taking behaviours), not wanting to be different from peers and the impact of hormonal changes (puberty) that can seriously disrupt glycaemic control and induce frustration.
Clinically relevant depressive symptoms are elevated in adolescents with type 1 diabetes and estimated to present in 15-25% of the young patients . These symptoms are burdensome in itself and associated with poor adherence, suboptimal glycaemic control, and recurrent diabetic ketoacidosis. Other emotional problems (anxiety, anger, distress) appear also highly prevalent, so in addition to increased risk for depressive symptoms, adolescents with type 1 diabetes are at increased risk for poor coping and problem-solving skills, poor self-care  and negative diabetes-specific health outcomes such as suboptimal glycaemic control and recurrent diabetic ketoacidosis . There are gender differences, with adolescent girls reporting higher levels of depressive symptoms than boys across all ethnic groups . There are also indications that disturbed eating behaviours are more prevalent in girls with type 1 diabetes compared to healthy controls .
Periodic monitoring of adolescents’ Quality of Life (QoL) is recommended for all patients using well validated and reliable measures such as the multidimensional MY-Q . This enables detection and discussion of psychosocial issues, including low mood in the context of diabetes management. When psychosocial problems are identified, screening for depression is advised as a second step (case-finding). For known high-risk patients (e,g, those with previous episodes of depression or high distress, eating problems, problematic families, DKA’s etc.) a pro-active approach is advised, with more frequent monitoring of mood agreed and scheduled with the patient and parents.
Screening for Depression
The major diabetes organizations around the world, including the International Society for Pediatric and Adolescent Diabetes (ISPAD) and the American Diabetes Association (ADA), have advocated for screening for depression in pediatric patients . The World Health Organization (WHO) depression definition is: ‘a common mental disorder that presents with depressed mood, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, low energy, and poor concentration’ .
There are two options for screening for depression: asking a serious of questions or administering a brief questionnaire, for example:
|Screening Questions Used to Open a Clinical Discussion about Depression|
|“During the past month have you often been bothered by feeling down, depressed or hopeless?”|
|“During the past month have you often been bothered by little interest or pleasure in doing things?”|
Although these two questions have been well-validated in adults, their validity in children and young people has not yet been strongly established. A more systematic approach is administering a validated self-report questionnaire. There are two that are used often. They are the Children’s Depression Inventory (CDI) and the Center for Epidemiologic Studies – Depression (CES-D) scale. The Beck Depression Inventory – II (BDI-II) can also be used for young people 13 and above.
The CDI is a self-report questionnaire for children age 7-17 years consisting of 27 items rated from 0 (no symptom) to 2 (distinct symptom) . Items on the CDI address symptoms (e.g., sadness, low self-esteem) and functional areas (e.g., not having friends, schoolwork isn’t as good as it was before, and arguing with others). The child or young person is asked to endorse one of three responses for each of the 27 items.
CDI scores can range from 0 to 54 with a clinical cutoff score of 13 or higher indicative of elevated depressive symptoms and suggestive of further evaluation. The CDI is copyrighted, has a cost, and is published by Multi-Health Systems Inc. in the United States. Caregivers can also provide a proxy report of the child’s depressive symptoms on the 17-item parent version (CDI:P). A score of 17 and higher is indicative of significant child depressive symptomatology.
|Sample CDI items|
|0) I am sad once in a while|
|1) I am sad many times|
|2) I am sad all the time|
|0) My school work is all right|
|1) My school work is not as good as before|
|2) I do very badly in subjects I used to be good in|
The 20-item CES-D  is widely used and clinical cut-off scores for children (≥ 16 and ≥24 depending on circumstance) are available . Respondents endorse items on a scale from 0 (not experiencing that symptom) to 3 (experiencing that symptom all the time) over the past week. The CES-D is free and accessible on the internet (search by name of measure, not just CES-D). It has been translated in to multiple languages.
|Sample CES-D items|
|“During the past week I was bothered by things that usually don’t bother me?”|
|“During the past week I had restless sleep”|
|“During the past week I talked less than usual”|
Subclinical depression is when an individual presents with depressive symptoms but does not meet the criteria for a diagnosis of clinical depression. Rather than receiving treatment for depression, however, such individuals often have to cope with their symptoms alone. The natural course of depression is to worsen , thus close follow-up and possible prevention efforts are warranted.
There is a 3rd group of individuals who are not depressed and do not report depressive symptomatology, yet still feel unable to cope with their diabetes. It has been suggested that these people are experiencing diabetes-related distress or are ‘burned out’ by their diabetes. Diabetes burnout occurs when a person feels ‘overwhelmed by diabetes and by the frustrating burden of diabetes self-care’. These emotions may be different to feelings of depression, but because of their diabetes-specific nature, they are often just as destructive and have implications for diabetes care.
Screening for Diabetes Distress
It is important to assess for the following symptoms of diabetes burnout during routine visits:
- Feeling overwhelmed and defeated by diabetes
- Feeling angry about diabetes, frustrated by the self-care regimen and/or having other strong negative feelings about diabetes
- Feeling that diabetes is controlling their life
- Worrying about not taking care of diabetes well enough yet unable, unmotivated or unwilling to change
- Avoiding any/all diabetes related tasks that might give feedback about consequences of poor control
- Feeling alone and isolated with diabetes
There are several measures that can be used to examine diabetes burnout, although most are adapted from use in adult populations. They include the Diabetes Distress Scale (DDS) and the Problem Areas in Diabetes (PAID) scale . There is a downward extension of the PAID for teens that was recently validated . This measure contains 26 items and is completed on a 6-point Likert scale. It has strong reliability and validity and provides a snapshot of the areas about diabetes that are most distressing to teens.
|Sample Items from the PAID for Teens|
|Feeling "burned-out" by the constant effort to manage diabetes|
|Feeling that I am not checking my blood sugars often enough|
|Feeling that my friends or family act like "diabetes police" (e.g. nag about eating properly, checking blood sugars, not trying hard enough)|
|Feeling I must be perfect in my diabetes management|
|Fitting my diabetes regiment into my day when I'm away from home (e.g. school, work, etc.)|
Likewise, the Blood Glucose Monitoring and Communication (BGMC) survey can be used to specifically assess frustration and anger with blood glucose monitoring . This is just an 8-item measure and can be completed by the child as well as the parent. It is depicted below.
|The Blood Glucose Monitoring and Communication Survey|
|1. When my blood sugar is high, I get upset thinking that I will be blamed for something I ate.|
|2. When my blood sugar is high, I feel scared.|
|3. When my blood sugar is high, I feel frustrated.|
|4. I am upset when I have high blood sugar.|
|5. I feel angry when my blood sugar is high.|
|6. I feel frustrated when I have low blood sugar.|
|7. When my blood sugar is high, I feel guilty.|
|8. When my blood sugar is low, I feel scared.|
Items on the BGCM are similar to the PAID items for teens, but focus on the parental perception of the role diabetes plays in daily activities and quality of life. Most of these measures are accessible and free by contacting the corresponding authors of the cited articles.
Screening for Aspects of Psychological Functioning: Anxiety
Several studies show that worries about diabetes and negative affect (e.g., state and trait anxiety) negatively impact on disease management and glycemic control in children and young people . Interestingly, depression and anxiety are often co-morbid conditions in children and young people . There is the potential that the symptoms of these two conditions may act in opposite directions with regard to diabetes management and control. Thus, we recommend assessing anxiety and doing so separately from depression.
Screening for Anxiety
The nature of anxiety and its symptomatology suggests that surveying pediatric patients for the following may be clinically informative:
- Constant worries or fears that intrude on the patient’s ability to focus or concentrate
- Frequent worries or fears about developing diabetes complications, separate from diabetes burnout or distress
- Hyper-vigilance on “perfect” diabetes control or an overly perfectionist attitude in general
Screening for anxiety in children and young people with diabetes can include the use of the State-Trait Anxiety Inventory (STAI) for children . While especially constructed to measure anxiety in nine- to twelve-year old children, the STAI-C may also be used with younger children with average or above reading ability and with older children who are below average in ability.
The STAI has 40 items with 20 each devoted to either state or trait anxiety. The State items use “I feel” as the stem and then each of the 20 items has three options.
|Sample Items from the STAI State Scale|
|I feel VERY CALM, CALM, or NOT CALM|
|I feel VERY WORRIED, WORRIED, or NOT WORRIED|
|I feel VERY NICE, NICE, or NOT NICE|
|I feel VERY RELAXED, RELAXED, or NOT RELAXED|
|I feel VERY CHEERFUL, CHEERFUL, or NOT CHEERFUL|
The STAI Trait items are responded to as “hardly ever”, “sometimes”, or “often.” For example, “I feel like crying” or “I am shy” would have to be endorsed as hardly ever, sometimes, or often.
Fear of Hypoglycaemia
Given the aversive nature of hypoglycemic episodes and the associated risk for harm, children with Type 1 diabetes as well as their parents can develop a significant fear of hypoglycaemia (FoH) that can negatively impact quality of life, emotional wellbeing, diabetes management and glycaemic control .
For further information, please view the page on: Fear of hypoglycaemia
The adult Hypoglycemia Fear Survey has been adapted for use with children and their parents. The HFS for Parents (PHFS) and the HFS for Children (CHFS) have the same subscale structure as the adult version, comprised of both a behavior (B) subscale and a worry (W) subscale. The CHFS can be completed by children age 6 and over and has ten items on the CHFS-B subscale (e.g., ‘keep blood sugars a little high to be on the safe side’) and 15 items on the CHFS-W subscale (e.g., ‘getting in trouble at school because of something that happens when my sugar is low’) . The PHFS has ten items on the PHFS-B subscale (e.g., ‘avoid having my child being alone when his/her sugar is likely to be low’) and 15 items on the PHFS-W subscale (e.g., ‘child not having food, fruit or juice with him/her’). Responses are made on a 5-point Likert scale where 0 = Never and 4 = Always.
Children and young people with diabetes must manage a disease that is chronic, unrelenting, and at times disruptive to daily life. The emotional and behavioral health of the patients with diabetes is critical to experience optimal health and quality of life outcomes. The diabetes clinician now has a broader set of validated tools to screen for those potentially disruptive emotional and behavioral problems. The critical first step is identification through screening and this ideally raises the chances of better access to and more effectiveness of these evidence-based programs.
This article is crossed linked with the Type 1 DM>Clinical management of T1D>Psychological aspects> Screening for emotional problems in adolescents article
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