ReviewDiabetes-related emotional distress instruments: A systematic review of measurement properties
Introduction
Diabetes has become a global health problem. About 387 million people have diabetes worldwide, and the number is estimated to rise to 593 million by 2035 (International Diabetes Federation, 2014). Many of those with diabetes must perform complex self-management (diet, exercise, foot care, and medication adherence) to maintain adequate metabolic control and to prevent or treat the potential associated long-term complications (American Diabetes Association, 2014). Patients with diabetes experience emotional burdens associated with their disease such as concerns about food, guilt regarding uncontrolled blood glucose, and worry about developing complications (Power, 2009). These negative emotional responses to the demands of diabetes and its treatment are referred to as diabetes-related emotional distress (Polonsky et al., 1995), and they are considered to be distinct from depression and a far broader affective experience than major depressive disorder (Fisher et al., 2008b, Polonsky et al., 1995); they reflect the worries, concerns, and fears of individuals struggling with this demanding disease (Fisher et al., 2010).
The diabetes literature contains far more information about depression, depressive symptoms, and anxiety than about diabetes-related emotional distress. However, this distress has been reported to occur in 18–45% of diabetes patients (American Diabetes Association, 2014, Fisher et al., 2015, Pouwer et al., 2013), and it is associated with poor self-care activities, low health-related quality of life (Aikens, 2012, Fisher et al., 2013, Graue et al., 2012), and poor glycemic control, but not with clinical depression or anxiety (Fisher et al., 2008b, Fisher et al., 2010). It is therefore crucial that health-care providers assess diabetes-related emotional distress in clinical practice. The American Diabetes Association (2014) recommends routine screening of psychological problems among patients with diabetes, such as diabetes-related emotional distress.
Certain issues need to be considered when measuring diabetes-related emotional distress in practice or research. This distress is experienced within the context of diabetes and its management, and so it is not appropriate to use instruments measuring general (i.e., nonspecific) emotional responses to an external demand (Fisher et al., 2014). Furthermore, distress is a subjective concept (Ridner, 2004), which makes a patient-reported outcome (PRO) instrument more appropriate than a proxy instrument. However, many clinical professionals lack knowledge about PRO instruments (Beverly et al., 2012), including their reliability, validity, and responsiveness (see the Supplementary content A). Especially, a short-PRO instrument would be preferred in busy practices, whereas more detailed measures of the diabetes-related emotional distress would be helpful for research purposes. However, both short and long instruments need to demonstrate satisfactory validity, reliability, and responsiveness (United States Food and Drug Administration, 2009). A systematic review performed with these considerations in mind will help clinicians and researchers to select the most suitable instrument for use in practice and research.
The aims of this systematic review were to identify currently available instruments that can be used for measuring diabetes-related emotional distress and to evaluate the evidence for their measurement properties. This systematic review adhered to the PRISMA statement (PRISMA, 2009) for its reporting.
Section snippets
Literature search
The following electronic databases were searched from their inception up to July 31, 2014 for articles on instruments for measuring diabetes-related emotional distress: PubMed, Embase, CINAHL, and PsycINFO. In accordance with the guidelines of de Vet et al. (2011), a searching strategy was determined by establishing the search terms for the following aspects: the construct of interest (“emotional distress” and its synonyms), the target population (e.g., “diabetes,” “mellitus,” and “diabetic”),
Identified instruments
Of the 2345 references yielded by the electronic database search, 532 were found to be duplicates and thus excluded. A further 1732 were excluded after reviewing the Abstracts.
The full texts of the remaining 81 articles were reviewed. One additional reference was identified by a manual search of the references in these articles. Ultimately, 19 full-text articles (Table 1) met the inclusion criteria, although the total number of psychometric studies was 22, since 2 instruments were tested
Instruments and their evidence syntheses
This systematic review identified and analyzed six instruments measuring diabetes-related emotional distress. The PAID was the most frequently studied and was found to be the best-validated instrument. However, given that the other instruments were studied less frequently than the PAID, this finding should be interpreted with caution.
The items included in the PAID were derived from 10 health-care providers (diabetes nurse specialists, and dietitians) and patient interviews, and these items were
Authors’ contributions
EHL conceived the study. CJK and JL extracted articles from the databases. All authors were involved in assessments of the methodological quality of each study and of the quality of the measurement properties, and in the evaluation of evidence synthesis. All authors were involved in the writing of this manuscript and approved the final version.
Acknowledgement
This research was supported by the Basic Science Research Program through the National Research Foundation of Korea (NRF) funded by the Ministry of Education, Science, and Technology (grant no. 2012R1A1B5000978). The funder did not play any role in the conduct or publication of the study.
Conflict of interest: The authors declare that they have no conflicts of interest.
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