PAID-11: A brief measure of diabetes distress validated in adults with type 1 diabetes

https://doi.org/10.1016/j.diabres.2019.01.026Get rights and content

Abstract

Objective

The Problem Areas In Diabetes (PAID) questionnaire is widely used to assess emotional distress related to living with diabetes, although it is lengthy for routine clinical use. Our aim was to determine whether the original 20-item PAID questionnaire can be abbreviated, whilst maintaining its reliability, validity and utility.

Methods

We analysed data from the UK DAFNE (Dose Adjustment For Normal Eating) education programme for adults with Type 1 diabetes. Data were analysed at baseline (n = 1547) and 1-year post intervention (n = 846). Exploratory factor analysis (EFA) with principal axis factoring method was used to examine PAID responses within a random half of the baseline data (n = 746). Then, two confirmatory factor analyses (CFA) were conducted using the remaining baseline (n = 801) and 1-year data. Reliability, predictive validity, convergent validity and responsiveness were also examined.

Results

Based on the EFA results, which were corroborated by CFA, an 11-item PAID questionnaire was identified with a cut-off score of 18 indicating severe diabetes distress. In the current sample, this brief version had high internal consistency (Cronbach’s α = 0.93). Predictive validity was demonstrated with the PAID-11 identifying severe diabetes distress from the original 20-item measure, with 95% sensitivity and 96% specificity. Convergent validity was demonstrated by strong positive correlations with HADS anxiety and depressive symptoms (average r = 0.65 and r = 0.55, respectively), while divergent validity was shown with weaker correlations with EQ5D health status (average r = 0.37).

Conclusions

Based on present results, PAID-11 appears to be a valid and reliable measure, which seems suitable for use as a brief tool for the detection of diabetes distress in adults with type 1 diabetes. Importantly, this tool may reduce participant burden in multi-measure studies. However, further studies are urgently needed to determine the validity and utility of PAID-11 beyond the UK DAFNE population.

Introduction

Type 1 diabetes is a complex condition involving a considerable burden of self-management with the risk of both acute and chronic complications [1]. The psychological impact can be profound. Emotional reactions, such as anger, guilt, shame, depression or anxiety are commonly experienced by individuals with diabetes [2]. Emotional factors contribute to the high burden of the condition, and increased risk of premature mortality [3]. Specifically, the emotional impact of living with diabetes has been termed diabetes distress [4]. Elevated or severe diabetes distress is experienced by around one quarter of adults with diabetes living in the UK, at any one time [5]. Similar, but also higher, rates of diabetes distress have been shown around the world [6], [7].

High levels of diabetes distress, such as feeling overwhelmed by the demands of living with diabetes can lead to sub-optimal self-management (e.g., [8]). Both high HbA1c and severe hypoglycaemia are also associated with increased diabetes distress (e.g., [9]). Further, diabetes distress (but not depression or depressive symptoms) is associated with higher HbA1c (e.g., [10]), hence it is critical to have appropriate tools available to identify diabetes distress and enable early intervention.

Routine screening for distress in individuals with diabetes is increasingly recommended by professional bodies; for example, the most recent guidelines of the American Diabetes Association [11] and the UK National Institute for Clinical Excellence [1].

Six measures have been identified that capture the broad spectrum of diabetes distress [12]. The most widely used is the 20-item Problem Areas in Diabetes scale (PAID), developed by Polonsky et al. [4]. The psychometric characteristics of the PAID, together with its ability to detect change due to an intervention, have been supported in multiple studies, not only in clinical and research populations (e.g., [13], [14], [15], [16]), but also to assess the effectiveness of interventions, including the DAFNE (Dose Adjustment For Normal Eating) structured type 1 diabetes education programme [17], [18], [19].

Despite the research pedigree of the PAID, its utility in a routine clinical setting may be limited due to its length and the time required to complete the questionnaire. It is possible that a version with fewer items but similar psychometric characteristics may prove equally reliable, particularly if applied to a selected population, such as those with type 1 diabetes only. Indeed, previous studies have noted that the 20-item PAID has high internal consistency reliability (Cronbach’s α ≥ 0.95) (e.g., [20], [21]), suggesting there may be some item redundancy in the scale [22]. Attempts have been made to develop 5-item and single-item versions of the PAID questionnaire [23]. However, these scale reductions have been conducted using datasets from mixed populations of adults with type 1 diabetes and type 2 diabetes. There may be limitations with regards to the applicability of these findings to the type 1 diabetes population. Moreover, while the reduction in length might be suitable for initial screening, the PAID-5 and PAID-1 will potentially offer little clinical utility for understanding the sources of distress, as they are likely to have reduced content validity.

Our aim was to investigate: (a) whether it is possible to construct a short-form of PAID with satisfactory psychometric properties using data from a large sample of adults with type 1 diabetes, and (b) the reproducibility of the short-form, and its responsiveness to an educational intervention, using one-year follow-up data.

Section snippets

DAFNE research database

The data used in this study were taken from the DAFNE Research Database (DB031). DAFNE (Dose Adjustment For Normal Eating) is a 5-day group structured education programme, which trains adults with type 1 diabetes in the skills required for self-management of flexible, intensive insulin therapy. DAFNE education provides adults with type 1 diabetes with the knowledge and self-management skills required for using optimal insulin dosing based on carbohydrate counting. DAFNE has been shown to

Participants’ characteristics

The characteristics of those participants with PAID data at both baseline and follow-up are detailed in Table 1. The 644 participants (43% female; p < .02) who had complete PAID baseline data but did not complete one-year follow-up were, at baseline, significantly younger (42.36 (13.50) years, p < .001), had higher HbAlc (9.11% (1.78), 76.01 mmol/mol (19.41), p < .001), and significantly higher scores on PAID-20 (31.18 (20.99), p < .001), HADS anxiety symptoms (6.77 (4.46), p = .025) and

Discussion

This study indicates that a brief version of the PAID questionnaire requiring just 11 responses is valid and reliable for assessing diabetes distress in adults with type 1 diabetes. The PAID-11 questionnaire has high predictive validity (95% sensitivity and 96% specificity) and a suggested cut-off point of ≥ 18 is recommended for identifying those experiencing severe diabetes distress.

Using data from a large UK sample of adults with type 1 diabetes, we demonstrated that the original 20-item

‘Research in context’ summary

What is already known about this subject?

  • Elevated or severe diabetes distress is experienced by around one quarter of adults with diabetes living in the UK, at any one time.

  • The Problem Areas In Diabetes (PAID) questionnaire is widely used to assess emotional distress related to living with diabetes, although it is lengthy for routine clinical use.

  • Providing more time-efficient measures of diabetes distress can improve care for people with diabetes.

What is the key question?

  • Can we identify a

Acknowledgements

The authors wish to thank the National Institute for Health Research (NIHR) Dose Adjustment for Normal Eating (DAFNE) Study Group for access to the data (DAFNE Research Database: DB031/16HB), the participants who took part in the original study and Dr Andrea Venn for assistance with the data analysis plan. This study was partially supported by grant funding held by PM at Nottingham University Hospitals NHS Trust (13EN003). JS is supported by core funding to the Australian Centre for Behavioural

Author contributions

NS, HB, PM, DC and DH developed the study concept. Data preparation, analysis and interpretation were performed by NS under supervision of HB. NS drafted the manuscript and is guarantor for the article contents. All authors provided critical revisions and approved the final version of the manuscript.

Declaration of interests

The authors confirm that there is no conflict of interest.

This study was presented at the 53rd Annual Meeting of the European Association for the Study of Diabetes as a poster presentation. Details below.

PM, NS, DH, DC, HB. Validation of a shortened 11-item version of the Problem Areas in Diabetes scale to measure distress in adults with type 1 diabetes. 53rd Annual Meeting of the European Association for the Study of Diabetes. 11-15th September 2017, Lisbon, Portugal.

References (44)

  • K. Dennick et al.

    High rates of elevated diabetes distress in research populations: a systematic review and meta-analysis

    Int Diabetes Nurs

    (2016)
  • N.E. Perrin et al.

    The prevalence of diabetes-specific emotional distress in people with type 2 diabetes: a systematic review and meta-analysis

    Diabet Med

    (2017)
  • Speight J, Browne JL, Holmes-Truscott E, Hendrieckx C, Pouwer F. Diabetes MILES–Australia 2011 survey report [article...
  • A. Ogbera et al.

    Emotional distress is associated with poor self care in type 2 diabetes mellitus

    J Diabetes

    (2011)
  • L. Fisher et al.

    Diabetes distress but not clinical depression or depressive symptoms is associated with glycemic control in both cross-sectional and longitudinal analyses

    Diabetes Care

    (2010)
  • American Diabetes Association

    Standards of medical care in diabetes—2017

    Diabetes Care

    (2017)
  • C.A. Eigenmann et al.

    Are current psychometric tools suitable for measuring outcomes of diabetes education?

    Diabet Med

    (2009)
  • F.J. Snoek et al.

    Diabetes-related emotional distress in Dutch and U.S. diabetic patients: cross-cultural validity of the Problem Areas In Diabetes scale

    Diabetes Care

    (2000)
  • G. Welch et al.

    The Problem Areas in Diabetes Scale: an evaluation of its clinical utility

    Diabetes Care

    (1997)
  • E.K. Fenwick et al.

    What is the best measure for assessing diabetes distress? A comparison of the Problem Areas in Diabetes and Diabetes Distress Scale: Results from Diabetes MILES-Australia

    J Health Psychol

    (2018)
  • D. Gunn et al.

    Glycaemic control and weight 7 years after Dose Adjustment For Normal Eating (DAFNE) structured education in type 1 diabetes

    Diabet Med

    (2012)
  • D. Hopkins et al.

    Improved biomedical and psychological outcomes 1 year after structured education in flexible insulin therapy for people with type 1 diabetes. The U.K. DAFNE experience

    Diabetes Care

    (2012)
  • Cited by (0)

    View full text