Scales and Measures

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.

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