SCALES AND MEASURES
Diabetes Distress
Documentation: T1-DDAS, T2-DDAS, DDS-17, T1-DDS, Partner-DDS, Parent-DDS
At the present time, there are seven self-report tools that are commonly used to assess diabetes distress (DD). Six of them are copyrighted by the Behavioral Diabetes Institute and are available on this website. The seventh tool is the PAID (Polonsky et al, 1995); it is owned by the Joslin Diabetes Center (further information regarding the PAID can be obtained by contacting the Joslin Diabetes Center directly). Each of these instruments has their strengths and weaknesses, each has been standardized with different populations, and each targets different groups of individuals.
Note that two of the seven instruments target significant others– in one case, partners of adults with T1D (Polonsky et al, 2016); in the other case, parents of teens with T1D (Hessler et al, 2016). Of the five scales remaining, all of which target adult populations directly, we present 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 (Polonsky et al, 2005), and the new T2-DDAS (Fisher et al, 2023). 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 the common, contemporary diabetes issues raised by adults with T2D. While the PAID yields only a single, total score, the DDS yields a total score plus four subscale scores, each one identifying a common source 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 in English and Spanish on this website, was developed in 2021 and its standardization sample included 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 is unique in that it conforms more directly with the underlying theoretical premise of DD as a core emotional experience than either of the other two T2D 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 contains 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, screening versions, such as the PAID-5, have been developed) and the DDS is 17 items (although studies often choose to use only 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 the emotional impact of DD in a selected population is the goal. The major limitation of the T2-DDAS is its newness, with only two publications to date.
Therefore, there will be circumstances—especially in research investigations– where the PAID or DDS might be a better choice: for example, 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 four main choices are the PAID, the original 17-item DDS, the T1-DDS (Fisher et al, 2015), and the new T1-DDAS (Fisher et al, 2023). 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 the common, contemporary concerns of adults with T1D. 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, was the first DD assessment scale 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. The total score is the average of the 7 subscales. In our view, the T1-DDS provides a more accurate and comprehensive assessment of distress in adults with type 1 diabetes than either the PAID or DDS.
The T1-DDAS, available only in English and Spanish, was developed in 2023 and, like the T2-DDAS, conforms more directly with the underlying theoretical premise of DD as a core emotional experience. Also, like the T2-DDAS, it has two parts, and they 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 22 items, and it evaluates the relative impact of ten 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 T1-DDAS provides for a more contemporary, flexible and comprehensive assessment of DD in adults with type 1 diabetes than any of the other existing measures.
About questionnaire length: The PAID is 20 items (though briefer, screening 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 only 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. Finally, the T1-DDAS Core scale is only 8 items, though this expands to 30 items when the Sources scale is added.
For clinical and research purposes, we recommend the T1-DDAS. For a fully comprehensive assessment that reflects contemporary concerns, we suggest giving BOTH of the T1-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 T1-DDAS is its newness. Therefore, there will be circumstances—especially in research investigations– where the PAID or DDS might be a better choice: for example, 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 in a mixed sample of T1D and T2D adults, the PAID and the original 17-item DDS would each be fine to use. However, especially in studies where item burden is a concern, please note that T1-DDAS Core scale and T2-DDAS Core scale are identical; therefore, we recommend using the “T1/T2 Core”, especially since this measure more precisely taps the central emotional experience that represents DD.
REFERENCES
- Polonsky WH, Anderson BJ, Lohrer PA, Welch G, Jacobson AM, Schwartz C (1995). Assessment of diabetes-specific distress. Diabetes Care, 18, 754-760.
- Polonsky, WH, Fisher, L, Hessler D, Johnson N (2016). Emotional distress in the partners of type 1 diabetes adults: worries about hypoglycemia and other key concerns. Diabetes Technol Ther, 18, 291-297.
- Hessler D, Fisher L, Polonsky W, Johnson N (2016). Understanding the areas and correlates of diabetes-related distress in parents of teens with type 1 diabetes. J Pediatr Psychol, 41, 750–758.
- Polonsky WH, Fisher L, Earles J, Dudl RJ, Lees J, Mullan J, Jackson RA (2005). Assessing psychosocial distress in diabetes: development of the Diabetes Distress Scale. Diabetes Care, 28, 626-631.
- Polonsky WH, Fisher L, Hessler D, Desai U, King SB, Perez-Nieves M (2022). Toward a more comprehensive understanding of the emotional side of type 2 diabetes: a re-envisioning of the assessment of diabetes distress. J Diabetes Complications, doi: 10.1016/j.jdiacomp.2021.108103.
- Fisher L, Polonsky WH, Hessler DM, Masharani U, Blumer I, Peters AL, Strycker LA, Bowyer V (2015). Understanding the sources of diabetes distress in adults with type 1 diabetes.
- J Diabetes Complications, 29, 572-577.
- Fisher L, Polonsky W, Naranjo D, Strycker L, Hessler D (2024). A novel approach to
understanding and assessing the emotional side of type 1 diabetes: The Type 1-Diabetes Distress Assessment System. Diabet Med, doi: 10.1111/dme.15282.
© 4.16.24 Behavioral Diabetes Institute
The Type 1 Diabetes Distress Assessment System (T1-DDAS) is new scale that was developed, validated and standardized specifically for T1D adults. The T1-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 22 items, and it evaluates the relative impact of 10 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 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 publications are:
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
Title: A new perspective on diabetes distress using the type 2 diabetes distress
assessment system (T2-DDAS): Prevalence and change over time
Date: 2022
Authors: L. Fisher,*, W.H. Polonsky, M. Perez-Nieves, U. Desai, L. Strycker, D. Hessler
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.
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.
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.
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.
Title: Assessing psychosocial distress in diabetes:
Development of the Diabetes DistressScale
Date: 2005
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, Dutch, French (Canada and France), 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 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:
Date:2016
Authors: Polonsky, WH., Fisher, L., Hessler D., Johnson N.
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 and Turkish.
The key Parent-DDS publication is:
Date: 2016
Authors: Hessler D, Fisher L, Polonsky W, Johnson N
Hypoglycemia Concerns
Documentation: HABS,HCS, Partner-HCS
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:
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, Japanese, Spanish 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.
Device Satisfaction
Documentation: GMSS, IDSS
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:
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:
Date:2015
Authors: Polonsky WH, Fisher L, Hessler D, Edelman SV.
Miscellaneous
Documentation: MATCH
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