Cited by 208Diabetes Management and EducationDiabetes Management and ResearchCancer survivorship and care

Diabetes distress in adults with type 1 diabetes: prevalence, incidence and change over time

Open access
Fisher, Lawrence, Hessler, Danielle, Polonsky, William, Strycker, Lisa, Masharani, Umesh, Peters, Anne·2016·Journal of Diabetes and its Complications

Abstract

Aims To document the prevalence and 9-month incidence of elevated diabetes distress (DD) and the stability of DD over time using both single threshold and minimal clinically important differences (MCID) approaches.Methods Adults with type 1 diabetes (T1D) (N=224) completed the 28-item T1-Diabetes Distress Scale (T1-DDS) at baseline and 9months. A T1-DDS threshold was identified with spline analysis and MCID was calculated from the standard error of measurement.Results Analyses supported a cut-point of ≥2.0 for elevated DD. The prevalence and 9-month incidence of elevated DD was 42.1% and 54.4%, respectively. MCID was ±0.19 but varied by subscale (.26 to .50). Elevated DD was stable: only 20% crossed 2.0 over 9months. MCID analyses showed that change also occurred among those who remained either below or above 2.0 over time. Change varied by source of distress, with Powerlessness the most prevalent and stable. Using MCID, only participant age, gender and number of complications predicted change.Conclusions The prevalence, 9-month incidence and stability of elevated DD are high among adults with T1D, with change based on source of DD. We propose a combined cut-point/MCID framework for measuring change in DD, since each approach reflects unique characteristics of change over time.

Integrity signals

Registry

Crossref · 10.1016/j.jdiacomp.2016.03.032

Cites

17 of 17 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

0 of 13 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    Spline regression identified a knot at a T1-DDS score of 2.081 (R2 = .053).

    “Results of spline regression procedures, specifying a linear relationship between T1-DDS and A1C along the full T1-DDS range, indicated a knot at the T1-DDS score of 2.081 (R2 = .053), with a positive linear coefficient for the slope in the first phase and a negative adjustment for the second phase (Figure 1).”
    Quote in the paperNot a substantial claim
  • Findingown data

    MCIDs for the T1-DDS subscales varied from 0.26 to 0.50.

    “MCIDs for the subscales varied from 0.26 to 0.50: smaller values than for the total scale were expected, given that MCID was based in part on the number of scale items and alpha.”
    Quote in the paperNot a substantial claim
  • Findingreasoning

    Between 20% and 30% of participants became distressed or were no longer distressed over 9 months.

    “Thus, elevated DD, when it occurred, was persistent over time, and between 20% and 30% of participants became distressed or were no longer distressed over 9 months.”
    Quote in the paperSubstantial claim
  • Findingown data

    The proportion of participants who were distressed at both baseline and 9 months differed across the seven T1-DDS subscales (Cochran's Q: χ2 = 320.79, p < .0001).

    “However, the proportion of participants who were distressed at both at baseline and 9-months differed across the seven T1-DDS subscales (Cochran’s Q: χ2 = 320.79, p < .0001).”
    Quote in the paperSubstantial claim
  • Findingown data

    There was considerable variability in stability and change in MCID over time across the T1-DDS subscales (Cochran's Q: χ2(7) = 90.64, p < .0001).

    “There was considerable variability in stability and change in MCID over time across the T1-DDS subscales (Cochran’s Q: χ2(7) = 90.64, p < .0001).”
    Quote in the paperNot a substantial claim
  • May combine two claims. 25
  • Classified as probably not a substantial claim. 11
  • May combine two claims.

    Findingown data

    In piecewise regression, T1-DDS has a significant positive linear relationship with A1C below the 2.0 cut-point (B = .83, SE = .37, p = .02) but not above it (B = −.31, SE = .28, p = .26).

    “In piecewise regression models using this cut-point, a significant linear relationship was found between T1-DDS and A1C below the cut-point (B = .83 [SE = .37], Beta = .05, t = 2.27, p = .02) but not above the cut-point (B = −.31 [SE = .28], Beta = −.02, t = −1.14, p = .26).”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    Among participants, 79.0% remained within one MCID over time on Physician Distress, whereas only 50.0% did so on Hypoglycemia Distress.

    “For example, 79.0% of individuals remained within one MCID over time on Physician Distress, whereas only 50.0% did so on Hypoglycemia Distress.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    The cut-point estimated in spline analyses was rounded to 2.0 and used to define two groups: T1-DDS < 2 and T1-DDS ≥ 2.

    “The cut-point estimated in spline analyses, rounded to 2.0, was used to establish two patient groups: those with T1-DDS < 2 and those with T1-DDS ≥ 2.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingreasoning

    More than twice as many individuals demonstrated a change of at least one MCID compared to a change across the single T1-DDS threshold of ≥ 2.0: 125 vs. 52, respectively (Cochran's Q: χ2(1) = 65.79, p < .0001).

    “Because MCID is based on change along the entire scale distribution and not just on a single score cut-point, more than twice as many individuals demonstrated a change of at least one MCID compared to a change across the single T1-DDS threshold of ≥ 2.0: 125 vs. 52, respectively (Cochran’s Q: χ2(1) = 65.79, p < .0001).”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    In MCID analyses, 27.7% of the sample increased by one or more MCIDs and 28.1% decreased, whereas 10.7% increased and 12.5% decreased across the 2.0 threshold.

    “For example, whereas 10.7% of individuals display increases and 12.5% display decreases in DD across the 2.0 threshold, in MCID analyses 27.7% of the sample increased by one or more MCIDs and 28.1% decreased.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    A similar pattern of change occurred for patients who scored below 2.0 at both time points: some displayed significant reductions in DD, whereas others displayed significant increases.

    “A similar pattern of change occurred for patients who scored below 2.0 at both time points: some displayed significant reductions in DD, whereas others displayed significant increases.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    Change varied by source of distress, with Powerlessness the most prevalent and stable.

    “Change varied by source of distress, with Powerlessness the most prevalent and stable.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    Elevated DD was stable: only 20% crossed 2.0 over 9 months.

    “Elevated DD was stable: only 20% crossed 2.0 over 9 months.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Findingown data

    Using MCID, females (p < .03), younger adults (p < .07), and those with more complications (p < .03) displayed a higher probability of reduced DD ≥ 1 MCID over time than males, older adults, and those with fewer complications.

    “Age, gender and number of complications either approached or reached statistical significance: females (p < .03), younger adults (p < .07) and those with more complications (p < .03) displayed a higher probability of reduced DD ≥ 1 MCID over time than males, older adults, and those with fewer complications.”
    Quote in the paperNot a substantial claim
  • May combine two claims.

    Findingown data

    Of patients who scored above the 2.0 threshold at both time points (31% of the total sample), 32.9% demonstrated a reduction in DD of at least one MCID but stayed within the elevated range (≥ 2.0); 25.7% demonstrated an increase in DD of at least one MCID.

    “For example, of the patients who scored above the 2.0 threshold at both time points (31% of the total sample), 32.9% demonstrated a reduction in DD of at least one MCID but stayed within the elevated range (≥ 2.0); and 25.7% demonstrated an increase in DD of at least one MCID.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Interpretationown data

    The analyses support a T1-DDS total scale cut-point of 2.0 to identify elevated diabetes distress, because the relationship between T1-DDS and A1C is significantly linear until 2.0 and not significant after.

    “Analyses supported a cut-point of ≥2.0 for elevated DD.”
    • Also stated in: § 3.2 T1-DDS Scale Cut-Point · hedged
      “These analyses suggested the viability of a T1-DDS total scale cut-point of 2.0 to identify elevated DD, since the relationship between T1-DDS and A1C was significantly linear until 2.0, after which no significant relationship occurred.”
    • Also stated in: § 4.0 DISCUSSION · plain
      “In summary, we find that a score of 2.0 serves as a useful cut-point to indicate elevated DD among adults with T1D.”
    Quote in the paperSubstantial claim
  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    The variability in MCID among the T1-DDS subscales might in part be accounted for by the underlying statistical robustness of the subscale itself.

    “Fourth, the variability in MCID among the T1-DDS subscales might in part be accounted for by the underlying statistical robustness of the sub scale itself.”
    Quote in the paperNot a substantial claim
  • Classified as probably not a substantial claim. May combine two claims.

    Premisecitation

    The T1-DDS is a reliable and valid 28-item self-report instrument developed to identify specific sources of DD for adults with T1D and to provide an index of overall diabetes-related emotional distress.

    “The Type 1 Diabetes Distress Scale (T1-DDS) is a reliable and valid 28-item self-report instrument developed to identify the specific sources of DD for adults with T1D and to provide an index of overall diabetes-related emotional distress for use in clinical and research settings [9].”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [9] source

      Not checked in the free run.

  • May combine two claims.

    Interpretationreasoning

    The cut-point and MCID approaches each reflect unique characteristics of change over time.

    “We propose a combined cut-point/MCID framework for measuring change in DD, since each approach reflects unique characteristics of change over time.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Interpretationown data

    The prevalence, incidence and stability of DD over time vary significantly by the source of DD.

    “The prevalence, incidence and stability of DD over time vary significantly by the source of DD.”
    Quote in the paperSubstantial claim
  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    Among type 2 adults, elevated DD is highly stable over time and the point prevalence of elevated DD is approximately 46%.

    “Recent studies have indicated that among type 2 adults (T2D) elevated DD is highly stable over time and that the point prevalence of elevated DD is approximately 46%, suggesting a widespread clinical problem in this population [7].”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [7] source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Interpretationreasoning

    The scale response options indicate that significant DD occurs when respondents report even a "slight problem" on average across all 28 items.

    “The scale response options indicate that significant DD occurs when respondents report even a “slight problem” on average across all 28 items.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Interpretationcitation

    The prevalence/incidence of elevated DD in adults with T1D is substantially higher than the reported prevalence/incidence of clinical depression or elevated depression symptoms in this population.

    “They are also substantially higher than the reported prevalence/incidence of clinical depression or elevated depression symptoms in this population [18, 19].”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites [18] source

      Not checked in the free run.

    • cites [19] source

      Not checked in the free run.

  • Classified as probably not a substantial claim.

    Interpretationreasoning

    MCID provides a yardstick for observing change even among patients who remain above or below the threshold over time.

    “MCID, therefore, provides an yardstick for observing change even among patients who remain above or below the threshold over time.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Interpretationreasoning

    Individuals with initially low DD (< 2.0) may increase one or more MCIDs over time but still fail to cross the threshold for elevated DD; individuals with initially high DD (≥ 2.0) may demonstrate a reduction of at least one MCID and still not cross the threshold.

    “Individuals with initially low levels of DD (< 2.0) may increase one or more MCIDs over time but still fail to cross the threshold for elevated DD; and individuals with initially high levels of DD (≥ 2.0) may demonstrate a reduction of at least one MCID and still not cross the threshold.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Study design and conductnone given

    The study included a diverse, community sample of adults with T1D, permitted a careful comparison of different approaches to change, included assessment of several potential predictors of change, and allowed for a sufficiently long time interval to detect meaningful change.

    “This study has several strengths: it included a diverse, community sample of adults with T1D, permitted a careful comparison of different approaches to change, included assessment of several potential predictors of change, and allowed for a sufficiently long time interval to detect meaningful change.”
    Quote in the paperSubstantial claim
  • Classified as probably not a substantial claim.

    Interpretationreasoning

    The cut-point and MCID approaches each make a unique contribution to documenting change in DD over time.

    “We suggest a two-stage approach that includes both methods, since each makes a unique contribution to the documentation of change.”
    Quote in the paperSubstantial claim
  • May combine two claims.

    Interpretationown data

    Unlike depression, elevated DD does not appear to be episodic, ebbing and flowing over time; instead, when it occurs, without intervention it is generally persistent and continuous.

    “Thus, unlike depression [7], elevated DD does not appear to be episodic, ebbing and flowing over time; instead, when it occurs, without intervention it is generally persistent and continuous.”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites [7] source

      Not checked in the free run.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductreasoning

    The study included a 9-month time frame with only two assessments; patterns of stability and change may vary based on the time intervals and multiple assessments.

    “Second, the study included a 9-month time frame with only two assessments. Patterns of stability and change may vary based on the time intervals and multiple assessments.”
    Quote in the paperNot a substantial claim
  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductreasoning

    The study was observational and no intervention was included to stimulate change, thus reducing the opportunity to identify important predictors of change.

    “Third, the study was observational and no intervention was included to stimulate change, thus reducing the opportunity to identify important predictors of change.”
    Quote in the paperNot a substantial claim
  • May combine two claims.

    Interpretationown data

    The prevalence, 9-month incidence and stability of elevated DD is high among adults with T1D, with change based on source of DD.

    “The prevalence, 9-month incidence and stability of elevated DD is high among adults with T1D, with change based on source of DD.”
    Quote in the paperSubstantial claim
  • Classified as probably not a substantial claim.

    Study design and conductreasoning

    SEM was selected to calculate MCID because it is a property of the scale and not a property of a particular sample's T1-DDS score distribution.

    “SEM was selected to calculate MCID because it is a property of the scale and not a property of a particular sample’s T1-DDS score distribution.”
    Quote in the paperSubstantial claim
  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    DD is directly linked with poor glycemic control and problematic self-care behaviors, unlike depression.

    “Although often confused with depression, unlike depression DD is directly linked with poor glycemic control and problematic self-care behaviors [2–6].”
    Quote in the paperNot a substantial claim0 of 5 sources checked
    • cites [2] source

      Not checked in the free run.

    • cites [3]

      Not checked in the free run.

    • cites [4] source

      Not checked in the free run.

    • cites [5] source

      Not checked in the free run.

    • cites [6] source

      Not checked in the free run.

  • May combine two claims.

    Study design and conductown data

    Of 348 eligible individuals, 305 completed the baseline survey (87.0%) and 224 completed the follow-up assessment 9 months later (73%).

    “Of 348 eligible individuals identified from the four clinics, 305 completed the baseline survey (87.0%) and 224 completed the follow-up assessment 9 months later (73%).”
    Quote in the paperNot a substantial claim
  • Classified as probably not a substantial claim. May combine two claims.

    Interpretationreasoning

    The MCID findings indicate that a full explication of change requires additional, more fine-grained analyses; otherwise, important aspects of change among those who score consistently high or consistently low over time will be missed and an increase in the risk of type 1 error will occur.

    “Second, the MCID findings indicate that a full explication of change requires additional, more fine-grained analyses; otherwise, important aspects of change among those who score consistently high or consistently low over time will be missed and an increase in the risk of type 1 error will occur - not documenting a significant change when in fact one occurred.”
    Quote in the paperSubstantial claim
30 of 30
  • The paper relies on this without support.

    No systematic analysis of the prevalence, incidence, and stability of diabetes distress over time among adults with type 1 diabetes had been conducted before this study.

    “To date, however, no systematic analysis of the prevalence, incidence and stability of DD over time among adults with type 1 diabetes (T1D) has occurred.”
  • The paper relies on this without support.

    Diabetes distress is important with respect to quality of life and disease management.

    “Given the importance of DD with respect to quality of life and disease management, one important but often neglected question is: How much change in DD among adults with T1D over time should be considered meaningful?”
2 of 2

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Statistics recomputed

Every reported test result, recomputed from its test statistic and degrees of freedom. A result shows as not adding up only once an independent check has confirmed it.

  • Consistentχ²(1) = 65.79reported p < .0001 · recomputed p < .001

    “χ2(1) = 65.79, p < .0001”

  • Consistentχ²(7) = 90.64reported p < .0001 · recomputed p < .001

    “χ2(7) = 90.64, p < .0001”

2 of 2

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

Each contradiction between two passages listed here was confirmed by an independent check.

  • Summary adds BG testing to the MCID predictors

    Major

    The abstract says only age, gender, and complications predicted MCID change, whereas the final summary also lists BG testing.

  • Subscale MCIDs are described as smaller than the total-scale MCID

    Minor

    Every value in the stated subscale range exceeds the reported total-scale MCID of 0.19, contrary to the description that the subscale values are smaller.

2 of 2

Cites

Flagged first, then by citations

Research works printed but not linked: 1

  1. ADA, 2015, Clinical practice recommendations: Glycemic targets, Diabetes Care, 38S, S33

Cited by

Sorted by citations

Authors
Fisher, L., Hessler, D., Polonsky, W., Strycker, L., Masharani, U., & Peters, A.
Affiliations
  • University of California, San Francisco (US)
  • University of California San Diego (US)
  • Oregon Research Institute (US)
  • University of Southern California (US)
Corresponding author
Fisher, Lawrence
Venue
Journal of Diabetes and its Complications
Publisher
Elsevier BV
Published
2016-08
Volume
30
Issue
6
Pages
1123-1128
ISSN
  • 0891-6632 (ISSN-L)
  • 1056-8727
OpenAlex
W2324027622
Cited by
208
References
17
Citations by year
2026: 27 · 2025: 29 · 2024: 25 · 2023: 20 · 2022: 28 · 2021: 24 · 2020: 19 · 2019: 13 · 2018: 12 · 2017: 10 · 2016: 1
FWCI
12.04
Type
journal article
Language
en
Open access
Locations
  • Journal of Diabetes and its Complications (publishedVersion)
  • PubMed (publishedVersion)
  • Europe PMC (PubMed Central) (acceptedVersion)
  • PubMed Central (acceptedVersion)
  • eScholarship (California Digital Library) (submittedVersion)
Funders
  • Ministerul Cercetării, Inovării şi Digitalizării
  • National Institute of Diabetes and Digestive and Kidney Diseases (R01DK094863)
Topics
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Research
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
Keywords
diabetes distress, type 1 diabetes, adults, prevalence, incidence, minimal clinically important difference, cut points, powerlessness, temporal stability, diabetes complications
MeSH terms
Adult, Diabetes Mellitus, Type 1, Emotions, Female, Humans, Male, Middle Aged, Stress, Psychological, Incidence, Prevalence

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