T1-DDAS: The Type 1 Diabetes Distress Assessment System

THE CORE DISTRESS SCALE

At the heart of diabetes distress is its emotional component, and that's what CORE DISTRESS SCALE measures; that is, how much overall emotional distress due to diabetes the respondent is experiencing. The CORE DISTRESS SCORE is simply the average of the 8 items of the CORE SCALE, with each item rated on a 1 to 5 scale:

  • Mean score < 2.0 indicate little or no distress.

  • Mean score between 2.0 and 2.9 indicate moderate distress.

  • Mean score > 3.0 indicate high distress

Any score > 2.0 is considered clinically significant.

THE SOURCES SCALE

Whether the CORE DISTRESS is high or low, it is helpful to identify those aspects of living with diabetes that are contributing to the individual’s diabetes distress. The Sources Scale portion of the T1-DDAS measures ten common, specific SOURCES of distress (22 items in total). Each SOURCES scale is described below:

Management Difficulties . Disappointment and discouragement with one’s own self-care efforts (e.g., “I get angry at myself at not managing diabetes better”).

Hypoglycemia Concerns . Worry and concern about severe hypoglycemic events (e.g., “I feel so scared of going low that I avoid things in my life”).

Interpersonal Challenges . Disappointment that one is not getting the right type or amount of support from family and friends about diabetes (e.g., “I feel angry when others tell me what I should do to manage my diabetes”).

Healthcare Quality . Frustration and disappointment about the medical care that one is receiving (e.g., “When it comes to medical care, it upsets me that I am mostly on my own with diabetes”).

Shame . Concerns about the reactions of others to knowledge that they have diabetes (e.g., “I often feel ashamed or embarrassed when other people know about my diabetes”).

Worries About Complications . Concerns about the potential harm that diabetes many cause over time (e.g., “I worry that my life will be cut short by diabetes”).

Financial Worries . Concerns about the affordability of diabetes supplies (e.g., “It upsets me that I have to pay so much for my diabetes care, medicines and supplies”).

Lack Of Diabetes Resources . Concerns about difficulties accessing adequate diabetes care (e.g., “I worry about how hard it is to get to my healthcare appointments or pharmacy”).

Technology Challenges . Worry and burden about managing their diabetes equipment (e.g., “I am overwhelmed by all the information I get from my diabetes devices”).

Burden To Others . Concerns about how diabetes may place a burden on others (e.g., “I feel like I am a burden to others because of my diabetes”).

Each of the distress SOURCES is simply the average of the items in each of the scales, with each item rated on a 1 to 5 scale:

  • Mean score < 2.0 indicate little or no distress.

  • Mean score between 2.0 and 2.9 indicate moderate distress.

  • Mean score > 3.0 indicate high distress

Any subscale score > 2.0 is considered clinically significant.

How to Use the T1-DDAS

Use the T1-DDAS to identify three levels of specificity of diabetes distress information for use in clinical care:

  1. Use the CORE score as a way to begin a conversation about a patient's overall level of diabetes distress and current general feelings about living with diabetes.

  2. Review each of the 10 SOURCE scores to identify the highest reported source or cause of distress. Use this subscale to begin a conversation about more focused areas of concern.

  3. Identify the highest rated of the 30 T1-DDAS items. Use these specific items to begin a conversation about particular sources of diabetes distress.

How to use the T1-DDAS on This Website

You can download a copy of the T1-DDAS in English or Spanish, along with scoring instructions.

You may also ask patients to complete the T1-DDAS in English or Spanish online. Online administration will produce a single CORE score, 10 SOURCES scores, and all item scores, which will be computed automatically. All scores will then be summarized in an accompanying report, available for download or printing.

CAUTIONS

The resulting T1-DDAS report can be copied and pasted into an electronic health record.

If the patient completes the T1-DDAS on a phone or tablet, however, the report cannot be copied and pasted directly into another device. Please email the report from a phone or tablet to a desk or laptop to complete the copy-paste function.

TO PROTECT PATIENT CONFIDENTIALITY, PLEASE NOTE THAT NO T1-DDAS ITEM OR SUMMARY REPORT DATA WILL BE RETAINED OR STORED ONCE THE RESPONDENT LEAVES THE WEBSITE!