At the present time, there are six self-report tools that are commonly used to assess diabetes distress (DD). Five of them are copyrighted by the Behavioral Diabetes Institute and are available on this website. The sixth tool is the PAID; it is owned by the Joslin Diabetes Center (further information regarding the PAID can be obtained by contacting Susan Sjostrum at Susan.Sjostrom@joslin.harvard.edu). Each of these instruments has their strengths and weaknesses, each has been standardized with different populations, and each targets different individuals with diabetes or their family members. Below is a rough guide to help you select which instruments to use in different situations.

When assessing DD among T2D adults, the three main choices are the PAID, the original 17-item DDS, and the new T2-DDAS. Though we have had a key role in the development of all of these measures, we are not neutral when it comes to which makes the most sense to use in most situations. 

The PAID and the DDS have long histories, have been used in large numbers of studies around the world, have been proven to be responsive to change, and are available in many languages. Both scales were developed many years ago (PAID in the mid-1990’s, DDS in the early 2000’s), so they do not necessarily reflect contemporary diabetes issues. While the PAID yields only a single, total score, the DDS yields a total score plus four subscale scores, each one identifying common sources of distress (regimen, emotional burden, friends/family, physician or health care DD) that can be used to initiate and focus a clinical conversation, and to target intervention. Both measures were standardized with a mixture of adults with type 1 or type 2 diabetes, so neither necessarily addresses the specific issues associated with type 2 diabetes. 

The T2-DDAS, available only in English and Spanish, was developed in 2021 and its standardization sample included only insulin-using and non-insulin-using adults with type 2 diabetes. It is the only DD assessment scale that was developed, validated and standardized specifically for T2D adults. Also, the T2-DDAS conforms more directly with the underlying theoretical premise of DD as a core emotional experience than either of the other two DD measures currently available. The T2-DDAS has two parts, which can be used independently based on specific clinical or research needs: the Core scale and the Sources scale. The Core scale contains 8 items and assesses the central, unalloyed element of DD as an emotional experience of diabetes-related distress. The Sources scale is 21 items, and it evaluates the relative impact of 7 common sources of DD that may be driving the distress. Source scale scores and profiles can be used to start a clinical conversation and to help identify important areas for intervention. Consequently, in our view, the T2-DDAS provides for a more contemporary, flexible and comprehensive assessment of DD in adults with type 2 diabetes than either of the other two existing measures.

About questionnaire length: The PAID is 20 items (though briefer versions, such as the PAID-5, have been developed) and the DDS is 17 items (although studies often choose to use a limited number of DDS Source scales). As noted, the T2-DDAS Core scale is only 8 items, though this expands to 29 items when the Sources scale is included.  

For clinical and research purposes, we recommend the T2-DDAS. For a fully comprehensive assessment, we suggest giving BOTH of the T2-DDAS scales, starting with the CORE scale. However, clinicians can choose to administer the Core scale only, then– if DD is elevated—ask the participant to complete the Sources scale to help decide where intervention might be needed. For researchers, using the Core scale alone may be a reasonable choice, especially when time and space are limited, and a pure measure of DD in a selected population is the goal. 

The major limitation of the T2-DDAS is its newness, with only one publication to date. Therefore, there will be circumstances—especially in research investigations– where the PAID or DDS might be a better choice: for example, when the sample is a mixed group of T1D and T2D participants, when languages other than English or Spanish are required, or when comparisons with the findings from previous DD studies using these scales are required. 

When assessing DD among T1D adults, the three main choices are the PAID, the original 17-item DDS, and the T1-DDS. Once again, though we have had a key role in the development of all of these measures, we are not neutral regarding which might be the best to use. 

As described above, the PAID and the DDS have long histories, have been used in large numbers of studies around the world, have been proven to be responsive to change, and are available in many languages. Both scales were developed many years ago (PAID in the mid-1990’s, DDS in the early 2000’s), so they do not necessarily reflect contemporary diabetes issues. While the PAID yields only a single, total score, the DDS yields a total score plus four subscale scores, each one identifying common sources of distress (regimen, emotional burden, friends/family, physician or health care DD) that can be used to initiate and focus a clinical conversation. Both measures were standardized with a mixture of adults with type 1 or type 2 diabetes, so neither necessarily address the specific issues associated with type 1 diabetes. 

The T1-DDS, published in 2015, is the only DD assessment scale that has been developed, validated and standardized specifically for T1D adults. In addition to a total scale score, it evaluates the relative impact of 7 common sources of DD that may be driving the distress. Subscale scores can be used to start a clinical conversation and to help identify important areas for intervention. In our view, the T1-DDS provides a more accurate and comprehensive assessment of distress in adults with type 1 diabetes than either of the other two existing measures.

About questionnaire length: The PAID is 20 items (though briefer versions specifically for T1D adults, such as the PAID-11, have been developed) and the DDS is 17 items (though studies often choose to use a limited number of DDS subscales). The T1-DDS is 28 items, though—like the DDS—some studies have chosen to use only a selected few of the subscales.  

For clinical and research purposes, we recommend the T1-DDS. Though it is somewhat longer than either of the other options, it is the newest of the three available scales, it reflects somewhat more contemporary T1D issues, and it remains the only one that was developed specifically for adults with type 1 diabetes. 

The major limitations of the T1-DDS are that it has been used in far fewer studies than the PAID or DDS and is available in only a handful of languages. Therefore, there will be circumstances when the PAID or DDS might be a better choice: for example, when the study sample is a mixed group of T1D and T2D participants, when a wide range of languages are required, or when comparisons with the findings from previous DD studies are needed. 

The DDS is a 17-item scale that captures four critical dimensions of
distress: emotional burden, regimen distress, interpersonal distress and physician distress. First published
in 2005, it has been used widely around the world as a clinical instrument for opening conversation with one’s
patients as well as a critical outcome measures in numerous studies.

 

This copyrighted scale is available free of charge to non-profit institutions
for use in clinical care and research. However, payment of a per use licensing fee is required for all for-profit
companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to
for-profit organizations, please contact us at info@behavioraldiabetes.org.

 

A caution regarding subscale scoring: It has come to our attention that
several of the translated versions have changed the order and some content of the DDS items. This may make the
order and content of the subscales unreliable. We caution anyone who is using translated versions and who wishes
to make use of the subscales to make certain that the order and content of the items match the original English
version.

 

The DDS can now be completed and scored online at diabetesdistress.org. On
this site, respondents can receive instant graphical feedback regarding their scores (both total and subscale
scores), with additional information for both patients and healthcare professionals about diabetes distress and
how it can be addressed.

 

Authors: Polonsky WH, Fisher L, Earles J, Dudl RJ, Lees J, Mullan J, Jackson

Title: Development of a brief diabetes distress
screening
instrument
Date:  2008
Authors:  Fisher L, Glasgow RE, Mullan JT, Skaff MM, Polonsky WH

Title: When is diabetes distress clinically
meaningful? Establishing
cutpoints for the Diabetes Distress Scale
Date:  2012
Authors:  Fisher L, Hessler D, Polonsky W, Mullan J

PDF versions available below:
*translation certificate is available

 

The T1-DDS is a 28-item self-report scale that highlights seven critical dimensions of distress: powerlessness, management distress, hypoglycemia distress, negative social perceptions, eating distress, physician distress, and friends/family distress.

First published in 2015, it is quickly been adopted as a clinical instrument for opening conversations with one’s T1D patients as well as an important outcome measures in upcoming studies.

This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.

However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

The T1-DDS can now be completed and scored online at diabetesdistress.org. On this site, respondents can receive instant graphical feedback regarding their scores (both total and subscale scores), with additional information for both patients and healthcare professionals about diabetes distress and how it can be addressed.

At this time, the T1-DDS is available in English, French (Canada), German, Portuguese (Brazil) and Spanish.

The key T1-DDS publication is:

Title:  Understanding the sources of diabetes distress in adults with type 1 diabetes

Date: 2015

Authors: Fisher L, Polonsky WH, Hessler DM. Masharani U, Blumer I, Peters AL, Strycker LA, Bowyer V

PDF versions available below:
*translation certificate is available

The Parent-DDS is a 20-item self-report scale that highlights four critical dimensions of parent-related distress: personal distress, teen management distress, parent/teen relationship distress and healthcare team distress.
First published in 2016, it is recommended for use as a clinical instrument for opening conversations with parents as well as a potentially important outcome measure in appropriate studies.
This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.
However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.
At this time, the Parent-DDS is only available in English.
The key Parent-DDS publication is:

Title: Understanding the Areas and Correlates of Diabetes-Related Distress in Parents of Teens with Type 1 Diabetes

Date: 2016

Authors: Hessler D, Fisher L, Polonsky W, Johnson N

The Partner-DDS is a 21-item self-report scale that highlights four critical dimensions of partner-related distress: “my partner’s diabetes management”, “how best to help”, “diabetes and me”, and hypoglycemia.
First published in 2016, it is recommended for use as a clinical instrument for opening conversations with spouses and partners as well as a potentially important outcome measure in appropriate studies.
This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.
However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

At this time, the Partner-DDS is only available in English and French.

The key Partner-DDS publication is:

Title: Emotional distress in the partners of type 1 diabetes adults: Worries about hypoglycemia and other key concerns

Date:2016

Authors: Polonsky, WH., Fisher, L., Hessler D., Johnson N.

The GMSS is a 15-item self-report scale, with separate versions for subjects with type 1 diabetes (T1D) and type 2 diabetes (T2D). The T1D version includes 4 subscales, which capture the following key dimensions: openness, emotional burden, behavioral burden and trust. The T2D version also includes 4 subscales: openness, emotional burden, behavioral burden and worthwhileness.

First published in 2015, it is already been selected as an important outcome measures in upcoming studies.

This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.

However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

At this time, the T2D and T1D versions of the GMSS are available in Danish, Norwegian, Swedish, Dutch and English. The T2D version is also available in German/Germany and German/Austria and Indonesian.

The key GMSS publication is:

Title: Development of a New Measure for Assessing Glucose Monitoring Device-Related Treatment Satisfaction and Quality of Life

Date: 2015

Authors: Polonsky WH, Fisher L, Hessler D, Edelman SV.

The IDSS is a self-report scale with two versions, a 14-item version for subjects with type 1 diabetes (T1D) and a 12-item version for subjects with type 2 diabetes (T2D). The T1D version includes 3 subscales, which capture the following key dimensions: effectiveness, burdensomeness and inconvenience. The T2D version also includes 3 subscales: difficulty, usefulness and freeing.

First published in 2015, it is already been selected as an important outcome measures in upcoming studies.

This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.

However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

At this time, the two IDSS versions are only available in English and Turkish.

The key IDSS publication is:

Title: Development of a new measure for assessing insulin delivery device satisfaction in patients with type 1 and type 2 diabetes.

Date:2015

Authors: Polonsky WH, Fisher L, Hessler D, Edelman SV.

The HABS is a 14-item self-report scale that highlights two critical dimensions of hypoglycemia-related concerns (anxiety and avoidance) and one positive dimension (confidence). It has only been validated for use in adults with type 1 diabetes and type 2 diabetes.
First published in 2015, it is recommended for use as a clinical instrument for opening conversations with patients about their hypoglycemic concerns as well as a potentially important outcome measure in appropriate studies.

At this time, the HABS available in English, Bulgarian, Czech, Croatian, French (France), French (Switzerland), Greek, Arabic (Israel), Russian (Israel), Italian (Italy), Italian (Switzerland), Romanian, Slovak, Serbian, Slovenian, Swedish, German (Switzerland), Spanish (United States) and Turkish.

The key HABS publication for type 2 diabetes is:

Title: Identifying the worries and concerns about hypoglycemia in adults with type 2 diabetes

Date: 2015

Authors: Polonsky WH, Fisher L, Hessler D, Edelman SV

The key HABS publication for type 1 diabetes is:

Title: Worries and concerns about hypoglycemia in adults with type 1 diabetes: An examination of the reliability and validity of the Hypoglycemic Attitudes and Behavior Scale (HABS)

Date: 2020

Authors: Polonsky WH, Fisher L, Hessler D, Liu J, Fan L, McAuliffe-Fogarty AH

 

The HCS is a 9-item self-report scale that examines the degree to which people with diabetes feel able, secure, and comfortable regarding their ability to stay safe from hypoglycemic-related problems. It has been validated for use in adults with type 1 diabetes and insulin-using type 2 diabetes.First published in 2017, it is already been selected as an important outcome measures in upcoming studies.

This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

The key HCS publication is:

Title: Investigating Hypoglycemic Confidence in Type 1 and Type 2 Diabetes

Date: 2017

Authors: Polonsky WH, Fisher L, Hessler D, Edelman SV

At this time, the HCS is only available in English and Turkish.

The Partner HCS is a 12-item self-report scale that examines the degree to which partners of adults with type 1 diabetes (T1D) feel able, secure, and comfortable regarding their ability to help their T1D partner stay safe from hypoglycemic-related problems.

This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research.However, payment of a per use licensing fee is required for all for-profit companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

The key HCS publication is:

Title: Hypoglycemic Confidence in the Partners of Adults with Type 1 Diabetes

Date: 2020

Authors: Polonsky WH, Fortmann AL, Johnson KE, Nguyen A, Beebe C

At this time, the HCS is only available in English.

The Motivation and Attitudes towards changing health (MATCH) scale is an internally consistent
and valid 9-item scale that provides a profile of factors influencing motivation that can be used
in clinical and research settings. The scale identifies three areas of motivation: (1) willingness to
make changes (3 items), (2) perceived ability to make or maintain changes (3 items), and (3)
and feeling changes are worthwhile.

The key MATCH publication is:
Title: Motivation and attitudes toward changing health (MATCH): A new patient-reported measure to inform clinical conversations
Date: April 20, 2018.
Authors: Hessler DM, Fisher L, Polonsky WH, Bowyer V, Potter M

 

The Type 2 Diabetes Distress Assessment System (T2-DDAS) is the only DD assessment scale that was developed, validated and standardized specifically for T2D adults. The T2-DDAS has two parts, which can be used independently based on specific clinical or research needs: the Core scale and the Sources scale. The Core scale contains 8 items and assesses the central, unalloyed element of DD as an emotional experience of diabetes-related distress. The Sources scale is 21 items, and it evaluates the relative impact of 7 common sources of DD that may be driving the distress.

This copyrighted scale is available free of charge to non-profit institutions for use in clinical care and research. However, payment of a per use licensing fee is required for all for-profit
companies and other for-profit institutions. To find out more about licensing procedures and fees in regards to for-profit organizations, please contact us at info@behavioraldiabetes.org.

The key T2-DDAS publication is:
Title: Toward a more comprehensive understanding of the emotional side of type 2 diabetes: A re-envisioning of the assessment of diabetes distress
Date: 2021
Authors: Polonsky WH, Fisher L, Hessler D, Desai U, King SB, Perez-Nieves M