PAID-11: A brief measure of diabetes distress validated in adults with type 1 diabetes
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?
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Elevated or severe diabetes distress is experienced by around one quarter of adults with diabetes living in the UK, at any one time.
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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.
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Providing more time-efficient measures of diabetes distress can improve care for people with diabetes.
What is the key question?
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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.
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