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DIABETICMedicine

DOI: 10.1111/dme.13448

Systematic Review or Meta-analysis


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

N. E. Perrin1 , M. J. Davies1 , N. Robertson2, F. J. Snoek3 and K. Khunti1


1
Diabetes Research Centre, 2School of Psychology, College of Medicine, Biological Sciences and Psychology, University of Leicester, Leicester, UK and
3
Department of Medical Psychology, VU University Medical Centre, Academic Medical Centre Amsterdam, the Netherlands

Accepted 8 August 2017

Abstract
Aims Psychological comorbidity, such as depression and/or diabetes-specific emotional distress (diabetes distress), is
widespread in people with Type 2 diabetes and is associated with poorer treatment outcomes. Although extensive
research into the prevalence of depression has been conducted, the same attention has not been given to diabetes distress.
The aim of this systematic review was to determine the overall prevalence of diabetes distress in people with Type 2
diabetes.
Methods Seven databases were searched to identify potentially relevant studies; eligible studies (adult population
aged > 18 years with Type 2 diabetes and an outcome measure of diabetes distress) were selected and appraised
independently by two reviewers. Multiple fixed- and random-effects meta-analyses were performed to synthesize the
data; with primary analyses to determine the overall prevalence of diabetes distress in people with Type 2 diabetes, and
secondary meta-analyses and meta-regression to explore the prevalence across different variables.
Results Fifty-five studies (n = 36 998) were included in the meta-analysis and demonstrated an overall prevalence of
36% for diabetes distress in people with Type 2 diabetes. Prevalence of diabetes distress was significantly higher in
samples with a higher prevalence of comorbid depressive symptoms and a female sample majority.
Conclusions Diabetes distress is a prominent issue in people with Type 2 diabetes that is associated with female gender
and comorbid depressive symptoms. It is important to consider the relationship between diabetes distress and depression,
and the significant overlap between conditions. Further work is needed to explore psychological comorbidity in Type 2
diabetes to better understand how best to identify and appropriately treat individuals.
Diabet. Med. 34, 1508–1520 (2017)

demands of self-management required through adherence to


Introduction
diet, exercise and medication prescriptions. People with Type
Psychological comorbidity is high in people with Type 2 2 diabetes may worry and ruminate about existing or future
diabetes with extensive research demonstrating that ~ 30% complications, hold concerns about existing comorbidities,
of patients experience depressive affect [1–3]. More recently be fearful of hypoglycaemia and harbour feelings of guilt or
linked to Type 2 diabetes is diabetes-specific emotional shame, notably in relation to obesity or lifestyle [8,9].
distress (diabetes distress), which encapsulates a much wider Both depression and diabetes distress have been shown to
affective experience than depression, constituting distinctive impact negatively in Type 2 diabetes through poor adherence
emotional concerns within the ‘spectrum of patient experi- and reduced self-care [10–12]. Although depression and
ence’ for those living with a progressive and chronic diabetes distress are correlated conditions, research has
condition [4–7]. Diabetes distress refers to psychological drawn a distinction between the two conditions suggesting
distress specific to living with diabetes and can encompass a that diabetes distress is more widespread than depression
wide range of emotions, such as feeling overwhelmed by the [13]. In addition, the literature suggests that diabetes distress
has a greater impact upon, and is more closely associated
Correspondence to: Nicola E. Perrin. E-mail: n.e.perrin@gmail.com with, diabetes self-management and diabetes-related

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Systematic Review or Meta-analysis DIABETICMedicine

behavioural and biomedical outcomes than depression. Most added to the search. The finalized search (Fig. S1) for this
notably, there appears to be an effect of diabetes distress on review was conducted on 5 November 2016.
HbA1c, whereas the impact of depression appears to be The inclusion and exclusion criteria for this review were
equivocal [9,14–18]. A study by Fisher et al. [19] looking developed alongside the review question using the PICOS
specifically at the relationships between depression, diabetes (participants, interventions, comparisons, outcomes, and
distress and HbA1c demonstrated that only diabetes distress, study design) approach [24]. The criteria were deliberately
and not major depressive disorder or depressive symptoms, broad, focusing only on ‘participants’ and ‘outcome’, to
held cross-sectional and time-varying longitudinal relation- capture as many studies as possible within the diabetes
ships to HbA1c, highlighting the importance of exploring the distress literature since this is a relatively new field of study
concept of diabetes distress in this patient population. and data were limited. Studies were selected, regardless of
A large proportion of research combines Type 1 and Type methods, if they reported a baseline outcome measure of
2 diabetes populations when exploring diabetes distress, diabetes distress within an adult population (≥ 18 years)
however, this can be problematic because the way in which with Type 2 diabetes. For studies in which both Type 1 and
diabetes distress manifests in the two populations may be Type 2 diabetes populations were present, studies with a
contextually different; such as fear of hypoglycaemia being a majority of Type 2 diabetes (≥ 70%) were included. To
more prominent fear in patients with Type 1 diabetes, or ensure external validity, experimental studies were included
feelings of guilt/shame being more prominent in patients with if samples were from varied populations and platforms and
Type 2 diabetes. The two validated scales used to assess adopted broad inclusion criteria (Type 2 diabetes and adult
diabetes distress are the Problem Areas in Diabetes (PAID) age). Studies were excluded if they were not reported in the
scale [20] and the Diabetes Distress Scale (DDS) [21]. The English language.
PAID can be used for both Type 1 and Type 2 diabetes, Two reviewers (NP, SB) independently assessed abstracts
whereas the DDS offers a more comprehensive assessment, to and titles for eligibility and retrieved potentially relevant
overcome psychometric limitations of the PAID, and is articles using a shared paper-selection form developed
specifically for people with Type 2 diabetes. It has previously specifically for purpose to facilitate mutual understanding
been emphasized that the information collected from patients (Fig. S2). The reviewers then met to discuss any differences in
with Type 1 diabetes using the PAID scale would likely differ opinion, which were resolved through discussion; there were
from that found in people with Type 2 diabetes or a mixed few instances where this occurred (< 5%) and no require-
Type 1/Type 2 diabetes population [22], with leading authors ment for a third reviewer.
recently developing a separate DDS scale for people with
Type 1 diabetes, the T1-DDS [23].
Data extraction
To date, there has been no systematic review and meta-
analysis looking specifically at the prevalence of diabetes The main outcome measure to be extracted was a measure of
distress in people with Type 2 diabetes only. The current diabetes distress, taken as the number and percentage of the
review sought to address this gap in the literature and overall population scoring over the threshold for significant
provide novel data on the prevalence of diabetes distress in distress, dependent on the measure used. For studies report-
people with Type 2 diabetes, acknowledging the need to ing the PAID scale as their outcome measure, the cut-off
assess this separately from individuals with Type 1 diabetes point was set at 40 as this is deemed high and has
to be able to give greater clarity of understanding and discriminative validity [25,26]. For studies reporting the
extrapolation of findings to further research and clinical PAID-5, a short-form version of the PAID, the cut-off was
practice. ≥ 8 [27]. For studies using the DDS, where the total is taken
as an average, rather than cumulatively, with moderate
distress considered as 2.0–2.9, the cut-off was ≥ 2 for the
Methods
purposes of this review [28]. Further data extracted included:
study design, outcome measure used, study location and
Search strategy and selection
year, sample size, distribution, population demographics,
Bibliographic databases were searched using a combination biomedical outcomes such as HbA1c and BMI, and comorbid
of free-text and medical subject heading (MeSH)/Thesaurus depression scores. Data was extracted by one reviewer (NP)
terms, including EMBASE (1974 to 2016 week 44), MED- using a standardized form in Microsoft Excel (version
LINE (1946 to 2016 week 44), PSYCINFO (1954 to 2016), 14.2.3) (Fig. S3). Where the primary outcome (diabetes
CINAHL (1993 to 2016), The Cochrane Library, the distress) data were missing, incomplete or unclear, study
Applied Social Sciences Index and Abstracts (ASSIA) (all authors were contacted for additional data and/or clarifica-
dates) and SCOPUS (all years to present). The search strategy tion. If authors were unreachable due to out of date contact
was circulated to members of the project team (KK, FS, NR, information or did not respond then studies were excluded
MD) to advise on any further potential terms and these were from the final analyses.

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DIABETICMedicine Prevalence of diabetic-specific emotional distress in Type 2 diabetes  N. E. Perrin et al.

comorbidities (10–19, 20–29, 30–39, 40–49, 50–59, 60–69,


Study quality
70–79, 80–89, 90–99); and comorbid depressive symptoms
Study quality was assessed using previously established (0–9%, 10–19%, 20–29%, 30–39%, 40–49%, 50–59%, 60–
guidelines for the critical appraisal and scoring of health 69%). All available data were extracted and meta-regression
research literature for the prevalence or incidence of a health variables were determined a posteriori once sufficient avail-
problem and adapting these specifically to the prevalence of able data were determined.
diabetes distress [29] (Table S1). The guidelines propose Owing to varied reporting of complications and/or comor-
three broad areas of exploration to determine the validity of bidities across studies, careful consideration was given to
the study methods, the interpretation of the results and the data inclusion within the analysis. Twenty-nine studies
applicability of the results. Each study was appraised to reported data for complications and/or comorbidities, with
examine the appropriateness of design and sampling, terms used interchangeably across studies. The current
whether the sample size was adequate (n ≥ 300), whether reporting of ‘comorbidities and/or complications’ is defined
the measures were standardized and recorded without bias, if as physical conditions only. Studies that did not state
adequate response rates were seen (≥ 70%), if prevalence whether their data pertained to physical or psychological
scores were reported with confidence intervals, and whether conditions were excluded from the analysis. Where possible,
the study subjects and setting were representative of the meta-regression analyses were performed for individual
current research question. A maximum score of eight was comorbid conditions, with sufficient data available for
available with study strength margins defined as ‘poor’ hypertension, dyslipidaemia, retinopathy, heart disease,
(scores of 1 or 2), ‘moderate–poor’ (scores of 2 or 4), neuropathy, nephropathy and foot ulcers. Study location
‘moderate–strong’ (scores of 5 or 6) and ‘strong’ (scores of 7 regions were grouped into the six regions articulated by the
or 8). World Health Organization [34]: Americas, Eastern Mediter-
ranean, Western Pacific, Southeast Asia, European, Africa.
Regarding culture, populations were split into either Eastern
Meta-analyses
or Western cultures; Western cultures were defined as those
The primary outcome was the total number of participants developing from Europe and their historic expansion into the
and number of participants demonstrating significant levels Americas and Australasia.
of diabetes distress, which we analysed using ‘metaprop’, a
statistical program implemented to perform meta-analyses of
Results
proportions [30] in STATA (version 14.1). Metaprop deliv-
ers both fixed and random effects pooled estimates and we Figure 1 demonstrates the study selection process. Searches
used the Freeman–Tukey double arcsine transformation to generated 6048 citations, of which 3105 titles and abstracts
stabilize the variances [31]. Heterogeneity was assessed using were screened for eligibility once duplicates were removed.
an I2 statistic to establish whether variations between studies Of these, 283 potentially relevant studies were selected for
included in the meta-analyses were due to chance. The value full text retrieval, of which 159 were eligible for the review,
is expressed as a percentage of the total variation across and 55 were eligible and provided sufficient data to be
studies that is attributed to heterogeneity rather than chance, included within the meta-analyses (Refs e1–e54, Doc. S1).
which was quantified as low (25%), moderate (50%) and One paper (Ref. e8, Doc. S1) reported data for two separate
high (75%) using tentative cut-off points suggested by studies and these were separated for the analyses.
previous authors [32]. Publication bias was assessed using Studies included in the meta-analyses are summarized in
Egger’s test [33] and a funnel plot. Table 1. Diabetes distress was measured using either the
Secondary random-effects meta-analyses were conducted PAID (n = 25), the PAID-5 short-form version (n = 9) or the
to determine and compare the prevalence of diabetes distress DDS (n = 21).
and to identify potential sources of heterogeneity using meta- Studies were conducted within the last 16 years, with data
regression analyses across the following variables: diabetes collected from the USA (n = 20), Canada (n = 7), the
distress scale used (DDS, PAID and PAID-5); study location Netherlands (n = 5), Australia (n = 6), China (n = 3), Sin-
(region); population culture (eastern, western); mean age of gapore (n = 2), France (n = 1), Germany (n = 1), Italy
participants (30–39, 40–49, 50–59, 60–69, 70–79 years); (n = 1), India (n = 1), Iran (n = 1), Japan (n = 1), Malaysia
gender majority (≥ 50% female, ≥ 50% male); ethnicity (n = 1), Norway (n = 1) Serbia (n = 1), Slovenia (n = 1) and
majority (≥ 50% white, ≥ 50% non-white); mean BMI South Africa (n = 1); there was one multinational study.
(≤ 30, ≥ 30); mean HbA1c [53.0–62.8 mmol/mol (7.0– Most studies in this review adopted an observational
7.9%), 63.9–73.8 mmol/mol (8.0–8.9%), 74.9–84.7 mmol/ design (n = 43), with 12 experimental studies. Samples sizes
mol (9.0–9.9%), 107.7–117.5 mmol/mol (12.0–12.9%)]; within the studies ranged from 21 to 8596. The average age
mean years since diagnosis of Type 2 diabetes (2.0–3.9, of participants in the studies was 57.4 years (range: 32.3–
4.0–5.9, 6.0–7.9, 8.0–9.9, 10.0–11.9, 12.0–13.9, 14.0–15.9); 70.0 years), with an even split of gender (51% men). The
percentage of diabetes-related complications and/or minority of people (38%) were of white ethnicity.

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Systematic Review or Meta-analysis DIABETICMedicine

FIGURE 1 Consort flow-diagram demonstrating the study selection process in a systematic review and meta-analyses to determine the prevalence of
diabetes-specific emotional distress in people with Type 2 diabetes.

Participants had been diagnosed with Type 2 diabetes for an interval (95% CI) 0.308, 0.413], fixed-pooled ES 0.356
average of 9.7 years (range: 2.9–15.6 years) and had an (95% CI 0.351, 0.361). Heterogeneity was shown to be very
average HbA1c of 67.2 mmol/mol (8.3%) (range: 53.0 to high with I2 = 99.03, with meta-regression analyses identi-
107.7 mmol/mol; 7.0–12.0%). The average BMI in partic- fying potential confounders in gender distribution
ipants was 31.7 kg/m2 (range 26.5–36.8 kg/m2). (P = 0.011) and comorbid depressive symptoms
Study quality assessment (Table S1) demonstrated a mean (P = 0.009); finding prevalence to be increased in studies
score of 5.2 of 8, with the majority of studies (n = 36, with a female sample majority and in samples with comorbid
64.2%) scoring ‘moderate–strong’. The remaining studies depressive symptoms (Table 2). Eggers test (P = 0.119)
consisted of three scoring as ‘poor’ (5.4%), nine scoring as suggested that publication bias was absent. The funnel plot,
‘poor–moderate’ (16.1%) and eight scoring as ‘strong’ however, demonstrated asymmetry, with a greater represen-
(14.3%). tation of studies where higher diabetes distress proportions
Fifty-five studies, with a total of 36 998 participants, were seen, indicating potential for bias (Fig. S4).
reported the number/percentage of participants demonstrat-
ing significant diabetes distress and were included in fixed-
Discussion
and random-effects meta-analyses to determine the overall
prevalence of diabetes distress in people with Type 2 diabetes
Key findings
(Fig. 2).
The overall prevalence of diabetes distress was 36%; This comprehensive meta-analysis of 55 studies showed that
random-pooled effect size (ES) 0.360 [95% confidence the overall prevalence of diabetes distress using established

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Table 1 Overview of studies included in the meta-analyses to determine the prevalence of diabetes-specific emotional distress in people with Type 2 diabetes

1512
Mean Mean
Mean age Ethnicity Gender HbA1c HbA1c Mean Mean
Study* Location Design N (years) (% C) (% male) (mmol/mol) (%) % DD (SD) DD Measure % DS (SD) DS Measure
DIABETICMedicine

Aikens et al., USA Cross-sectional/ 303 66.60 92.90 97.00 NR NR 4.00 31.20 (13.10) PAID 30.20 2.50 (2.37) CES-D
2014 [e1] longitudinal
Aikens 2012, [e2] USA Observational 253 57.30 45.00 50.00 59.6 7.60 21.00 22.10 (19.00) PAID 50.00 05.60 (4.70) PHQ-9
Ang Co et al., Singa-pore Longitudinal 213 45.00 0 63.40 67.2 8.30 31.92 29.03 (21.91) PAID NR NR NR
2015 [e3]
Baek et al., 2014 USA Cross-sectional 119 56.30 25.40 36.10 62.8 7.90 27.70 2.30 (1.20) DDS NR NR NR
[e4]
Baradaran et al., Iran Cross-sectional 185 56.06 0 48.00 64.3 8.03 35.00 NR PAID 43.20 NR C.I.
2013 [e5]
Baumeister et al., Ger-many RCT 145 57.30 NR 63.10 NR NR 10.15 NR PAID 41.50 NR PHQ-9
2014 [e6]
Beverly et al., USA RCT 134 59.10 71.60 48.50 68.3 8.40 27.23 34.10 (21.70) PAID NR 49.70 (10.40) BSI
2013 [e7]
Browne et al., Australia RCT 125 56.00 NR 68.00 76.3 9.13 24.00 27.18 (20.04) PAID NR NR NR
2016 [e8]
Browne et al., Australia Cross-sectional 78 63.00 NR 47.00 64.7 8.07 24.00 25.41 (19.84) PAID NR NR NR
2016 [e8]
Browne et al., Australia Cross-sectional 149 32.33 NR 38.20 NR NR 63.00 9.41 (4.85) PAID-5 NR NR NR
2012 [e9]
Burns et al., 2016 Canada Cross-sectional/ 1742 60.51 93.00 50.90 NR NR 22.40 NR DDS 5.90 NR PHQ-9
[e10] propspective
Carper et al., USA Cross-sectional 146 56.01 82.00 57.50 66.7 8.25 79.5 2.87 (1.09) DDS 56.80 DDS C.I.
2012 [e11]
Chen et al., 2013 China Uncontrolled 1200 NR 0 100.0 NR NR 65.50 NR PAID 28.00 NR CES-D
[e12] case-series
Chesla et al., USA Uncontrolled 178 64.45 0 41.00 54.9 7.17 71.60 2.59 (2.38) DDS 48.00 18.06 (11.79) CES-D
2013 [e13] case-series
Chew et al., 2015 Malaysia Cross-sectional 262 NR NR NR NR NR 09.20 NR DDS NR NR NR
[e14]
Delahanty et al., USA Cohort 815 NR 85.33 51.00 NR NR 15.43 18.70 (20.40) PAID NR NR NR
2007 [e15]
Fisher et al., 2010 USA Cross-sectional 463 58.80 72.00 48.50 65.0 8.10 51.30 NR DDS 15.30 NR PHQ-8
[e16]
Gariepy et al., Canada Cross-sectional 600 58.10 NR 46.30 NR NR 23.00 1.60 (0.70) DDS NR NR NR
2013 [e17]
Holmes-Truscott Australia Cross-sectional 261 62.00 NR 60.50 74.9 9.00 15.00 19.70 (18.20) PAID 15.00 4.50 (4.90) PHQ-9
et al., 2016 [e18]
Holmes-Truscott Australia Cross-sectional 313 57.00 NR 57.00 NR NR 29.00 1.80 (1.00) DDS 24.00 6.00 (5.60) PHQ-9
et al., 2016 [e19]
Ikeda et al., 2014 Japan Cross-sectional 199 60.45 21.71 58.50 59.6 7.60 33.00 28.57 (19.95) PAID NR NR NR
[e20]
Jansen et al., Nether-lands Prospective 65 60.00 95.00 64.00 73.8 8.90 73.85 10.00 (1.40) PAID NR NR NR
2014 [e21] observational
Johnson et al., Canada Cross-sectional 2040 64.40 90.80 54.80 NR NR 07.90 NR PAID-5 3.00 NR PHQ-8
2016 [e22]
Prevalence of diabetic-specific emotional distress in Type 2 diabetes  N. E. Perrin et al.

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Table 1 (Continued)

Mean Mean
Mean age Ethnicity Gender HbA1c HbA1c Mean Mean
Study* Location Design N (years) (% C) (% male) (mmol/mol) (%) % DD (SD) DD Measure % DS (SD) DS Measure

ª 2017 Diabetes UK
Karlsen et al., Norway Cross-sectional 378 58.10 100 54.20 54.1 7.10 22.00 26.00 (18.00) PAID NR NR NR
2012 [e23]
LeBron et al., USA Cross-sectional 157 52.60 0 29.30 NR NR 23.31 25.00 (1.76) PAID 13.41 5.07 (5.12) PHQ-9
2014 [e24]
McEwen et al., USA Uncontrolled 21 53.71 NR 19.00 61.6 7.79 19.00 2.14 (1.70) DDS NR NR NR
2010 [e25] case-series
Nichols et al., USA Cross-sectional 924 35.10 NR NR 63.4 7.95 35.17 NR PAID NR NR NR
Systematic Review or Meta-analysis

2000 [e26]
Nicolucci et al., Multi-national Cross-sectional 8596 57.00 NR 52.60 NR NR 44.60 35.20 (24.20) PAID 25.50 NR WHO-5
2013 [e27]
Park et al., 2015 USA Cross-sectional 155 55.70 40.60 28.40 57.4 7.40 54.19 2.33 (1.04) DDS 24.50 NR Self-report
[e28]
Pintaudi et al., Italy Cross-sectional 2374 65.00 NR 59.90 60.7 7.70 60.20 NR PAID-5 NR NR NR
2015 [e29]
Primozic et al., Slovenia Cross-sectional 98 63.74 NR 49.00 56.3 7.30 13.20 15.09 (12.78) PAID NR 10.48 (7.87) HDI
2012 [e30]
Ramkisson et al., South Africa Cross-sectional 401 53.70 06.00 39.40 107.9 12.02 44.00 2.10 (1.10) DDS NR NR NR
2016 [e31]
Reach et al., 2015 France Cross-sectional 500 NR NR 55.00 NR NR 44.00 NR PAID-5 28.00 NR WHO-5
[e32]
Rogvi et al., 2012 Nether-lands Cross-sectional 2045 64.30 NR 65.00 59.6 7.60 29.05 NR PAID-5 NR NR NR
[e33]
Schiøtz et al., Nether-lands Cross-sectional 2572 60.50 NR 66.00 58.5 7.50 26.00 NR PAID-5 NR NR NR
2011 [e34]
Sekhar et al., India Cross-sectional 546 55.44 0 56.00 NR NR 53.00 NR DDS NR NR NR
2013 [e35]
Sidhu and Tang, Canada Cross-sectional 41 67.00 0 27.00 NR NR 42.50 NR DDS 15.00 NR PHQ-9
2016 [e36]
Sinclair et al., USA RCT 65 53.83 0 37.50 84.3 9.86 67.10 28.10 (27.11) PAID NR NR NR
2013 [e37]
Smith et al., 2013 USA Cross-sectional 1787 60.55 NR 48.50 NR NR 22.50 NR DDS 13.38 NR NR
[e38]
Spencer et al., USA Cross-sectional 180 56.63 0 25.55 74.1 8.93 25.10 23.93 (21.81) PAID NR NR NR
2006 [e39]
Stankoviv et al., Serbia Cross-sectional 90 55.75 NR 34.65 73.8 8.90 67.80 47.97 (15.83) PAID 51.10 10.54 (7.86) PHQ-9
2011 [e40]
Stoop et al., 2014 Nether-lands Cross-sectional 1300 65.00 94.00 55.00 53.3 7.03 10.00 14.06 (17.45) PAID NR NR NR
[e41]
Tang et al., 2015 USA RCT 106 56.30 0 35.00 62.8 7.90 39.40 5.35 (1.49) DDS NR NR NR
[e42]
Thom et al., 2013 USA RCT 299 55.79 10.75 47.80 85.7 9.99 60.96 2.41 (0.97) DDS NR NR NR
[e43]
Vallis et al., 2016 Canada Cross-sectional 500 54.00 NR 52.00 NR NR 29.20 28.18 (23.84) PAID-5 12.80 58.17 (22.57) WHO-5
[e44]

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Table 1 (Continued)

Mean Mean
Mean age Ethnicity Gender HbA1c HbA1c Mean Mean
Study* Location Design N (years) (% C) (% male) (mmol/mol) (%) % DD (SD) DD Measure % DS (SD) DS Measure

Van Vugt et al., Nether-lands Pre–post test 297 NR 96.90 51.50 53.0 7.00 13.20 NR PAID-5 NR NR NR
2016 [e45] observational
Venkataraman Singa-pore Cross-sectional 203 45.00 0 64.00 67.2 8.30 32.00 28.80 (21.90) PAID NR NR NR
et al., 2016 [e46]
Wardian and Sun, USA Cross-sectional 267 57.97 56.00 44.00 NR NR 59.93 2.40 (0.99) DDS NR NR NR
2014 [e47]
Welch et al., 2015 USA RCT 399 55.00 0 40.10 74.3 8.95 56.70 55.44 (31.58) PAID-5 36.95 NR PHQ-9
[e48]
Welch et al., 2011 USA RCT 46 55.82 NR 35.05 72.3 8.77 50.85 49.68 (23.82) PAID 66.10 NR PHQ-9
[e49]
Wong et al., 2015 Canada Cross-sectional 148 NR NR NR NR NR 39.00 NR DDS 12.00 NR PHQ-9
[e50]
Wycherley et al., Australia RCT 84 56.10 NR 58.30 57.7 7.43 36.80 31.90 (19.30) PAID NR NR NR
2014 [e51]
Zhang et al., China Cross-sectional 200 59.60 0 48.00 NR NR 64.00 NR DDS NR NR NR
2013 [e52]
Zhu et al., 2016 China Cross-sectional 397 56.33 58.90 58.90 82.7 9.72 33.80 NR DDS NR NR NR
[e53]
Zulman et al., USA Cross-sectional 1834 70.00 76.00 48.00 NR NR 62.00 NR PAID 19.00 NR CES-D
2012 [e54]

*
References are given in Supporting Information Doc. S1. C, Caucasian; CES-D, Center for Epidemiological Studies Depression Scale; DS, depressive symptoms; DD, diabetes-specific emotional
distress; DDS, Diabetes Distress Scale, HADS, Hospital Anxiety and Depression Scale; NR, not reported.
Prevalence of diabetic-specific emotional distress in Type 2 diabetes  N. E. Perrin et al.

ª 2017 Diabetes UK
Systematic Review or Meta-analysis DIABETICMedicine

FIGURE 2 Forest-plot demonstrating the findings of the primary meta-analyses to determine overall prevalence of diabetes-specific emotional distress
in people with Type 2 diabetes. CI, confidence interval; References are given in Supporting Information Doc. S1.

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DIABETICMedicine Prevalence of diabetic-specific emotional distress in Type 2 diabetes  N. E. Perrin et al.

Table 2 Results of sub-group meta-analyses and meta-regression to explore the prevalence of diabetes-specific distress across different variables

Meta-analyses Meta-regression

Prevalence Weight
Variables NS (%) ES 95% CI % Co-efficient SE P-value 95% CI

Outcome measure DDS 21 42 0.420 0.343 0.498 37.97


PAID 25 33 0.332 0.246 0.417 45.36 –0.040 0.038 0.298 –0.115 0.036
PAID-5 9 37 0.365 0.225 0.504 16.67
Study year 2015–2016 21 34 0.338 0.245 0.431 38.28
2013–2014 19 40 0.395 0.297 0.492 34.62 –0.004 0.009 0.651 –0.023 0.015
2011–2012 10 43 0.432 0.309 0.554 18.14
2010 and earlier 5 30 0.296 0.154 0.439 8.97
Study location Americas 27 38 0.383 0.304 0.463 48.77
Eastern Mediterranean 1 35 0.350 0.285 0.421 1.82
Western Pacific 13 36 0.355 0.228 0.482 23.66
Southeast Asia 1 53 0.530 0.488 0.572 1.85 0.018 0.023 0.441 –0.028 0.064
Europea 11 33 0.332 0.215 0.449 20.19
Africa 1 44 0.440 0.392 0.489 1.84
NA - Multinational 1 45 0.446 0.345 0.457 1.87
Study location Western 46 36 0.357 0.301 0.414 83.47
culture Eastern 8 44 0.436 0.321 0.552 14.66 –0.055 0.069 0.433 –0.194 0.845
NA - Multinational 1 45 0.446 0.345 0.457 1.87
Age (years) 30–39 2 39 0.390 0.361 0.418 3.95
40–49 2 32 0.320 0.275 0.364 3.94
50–59 30 40 0.401 0.348 0.454 58.41 –0.005 0.004 0.202 –0.013 0.003
60–69 16 28 0.283 0.200 0.365 31.68
70–79 1 62 0.620 0.598 0.642 2.02
Gender Female 24 45 0.447 0.366 0.528 45.51
majority (%) Male 28 32 0.317 0.244 0.389 54.49 –0.139 0.053 0.011 –0.245 –0.033
Ethnicity White 13 34 0.342 0.230 0.455 39.71
majority (%) Black and 20 44 0.441 0.366 0.516 60.29 –0.108 0.074 0.154 –0.259 0.043
minority ethnic
BMI < 30 8 32 0.318 0.181 0.454 26.41
> 30 23 43 0.425 0.352 0.498 73.59 –0.015 0.011 0.189 0.008 0.038
HbA1c 53.0–62.8 (7.0–7.9) 15 32 0.315 0.199 0.431 45.56
mmol/mol (%) 63.8–73.8 (8.0–8.9) 11 48 0.481 0.373 0.590 33.18
74.9–84.7 (9.0–9.9) 6 37 0.373 0.208 0.537 18.17 0.059 0.033 0.082 –0.008 0.125
107.7–117.5 (12.0–12.9) 1 44 0.440 0.392 0.489 3.08
Years diagnosed 2.00–3.99 1 63 0.630 0.550 0.703 2.74
with Type 2 4.00–5.99 2 26 0.261 0.243 0.280 5.69
diabetes 6.00–7.99 6 41 0.441 0.307 0.576 16.33
8.00–9.99 13 35 0.354 0.255 0.454 36.21 –0.008 0.011 0.464 –0.032 0.015
10.00–11.99 5 42 0.420 0.264 0.577 13.75
12.00–13.99 5 39 0.389 0.135 0.644 13.86
14.00–15.99 4 35 0.346 0.158 0.533 11.42
Comorbidities/ 10–19 1 74 0.738 0.621 0.830 3.97
complications
Overall (%) 20–29 1 21 0.210 0.164 0.264 4.18
30–39 3 48 0.475 0.307 0.644 12.62
40–49 4 25 0.253 0.109 0.398 16.74
50–59 2 23 0.232 0.195 0.269 8.29 –0.001 0.002 0.973 –0.005 0.005
60–69 3 41 0.411 0.052 0.770 12.51
70–79 7 39 0.396 0.230 0.561 29.30
80–89 2 23 0.227 0.209 0.246 8.38
90–100 1 68 0.678 0.576 0.466 4.01
Condition specific Hypertension 7 –0.002 0.005 0.663 –0.017 0.012
Dyslipidaemia 5 –0.000 0.005 0.994 –0.020 0.020
Retinopathy 11 0.008 0.006 0.225 –0.006 0.023
Heart disease 12 0.002 0.003 0.515 –0.004 0.008
Nephropathy 10 0.019 0.013 0.199 –0.013 0.050
Neuropathy 12 0.004 0.003 0.247 –0.003 0.011
Foot ulcers 4 0.059 0.007 0.075 –0.029 0.146
Sexual dysfunction 4 0.009 0.012 0.619 –0.150 0.167
Comorbid 0–9 2 17 0.117 0.107 0.127 9.30
depressive 10–19 8 32 0.319 0.165 0.473 36.37
symptoms (%) 20–29 4 48 0.477 0.362 0.591 18.29
30–39 2 13 0.130 0.110 0.150 9.24 0.007 0.002 0.009 0.002 0.012

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Table 2 (Continued)

Meta-analyses Meta-regression

Prevalence Weight
Variables NS (%) ES 95% CI % Co-efficient SE P-value 95% CI

40–49 2 54 0.540 0.492 0.587 9.08


50–59 3 56 0.560 0.153 0.967 13.56
60–69 1 50 0.509 0.369 0.647 4.16

CI, confidence interval; DDS, Diabetes Distress Scale; ES, effect size; PAID, Problem Areas in Diabetes Scale; SE, standard error.

cut-off scores in people with Type 2 diabetes was 36%, with reporting of response rates or details of assessors. Further
secondary analyses identifying gender (P = 0.010) and points were lost due to 43.6% of studies having inadequate
comorbid depressive symptoms (P = 0.008) as significant sample sizes. The most prominent loss of points came from
factors affecting prevalence. prevalence rates not being reported with confidence intervals,
with the vast majority of studies either reporting diabetes
distress as n (%) or mean (SD). Nearly all studies clearly
Strengths and limitations
specified and defined their eligibility criteria and recruited
This is the first known systematic review and meta-analyses from either a randomized or a whole population sample of
of the existing literature to determine the prevalence of the same/similar populations. Having appraised each study,
diabetes distress in a solely Type 2 diabetes population. As we feel that for the purposes of the current findings, the
such, it provides novel information for a gap in the literature. samples were representative of the target population and
The methods used to carry out this review were robust, while heterogeneity was high, this offered useful exploration
adopting strategies to gain all relevant outcome data avail- within our analyses.
able, even when not reported. Analyses to determine if publication bias was evident
Although it is a potential strength that this review is the offered inconsistent results. While the funnel plot shows
first of its kind, it meant that the data available were limited, asymmetry, Egger’s test deemed that publication bias was
because the field of diabetes distress is a relatively new one. not present. It is possible that the distribution within the
This was further hindered by the vast majority of papers not funnel plot, namely an excess of studies to the right of the
reporting the data required for the analyses, and despite plot, could suggest a bias in that studies with higher results of
extensive efforts to contact authors for any missing data or to diabetes distress are more likely to be published.
clarify any discrepancies, this often proved unsuccessful,
either due to contact details no longer being valid and/or
Surrounding evidence and implications
receiving no reply.
There was high heterogeneity between studies, with Elevated levels of diabetes distress appear to be widespread
particular concern lying in the reporting of diabetes distress with estimates given by leading authors varying between
and the scales used. A number of studies that reported DDS 18% and 35% [7,28] in combined Type 1 diabetes and Type
scores conveyed the score as a cumulative rather than an 2 diabetes populations, with a recent systematic review and
average, meaning that their results were dramatically higher meta-analysis looking into the prevalence of diabetes distress
than the majority of studies. As such, if authors did not in research populations demonstrating a prevalence of 22%
respond to requests for an average score, these studies needed [35]. A study by Fisher et al. in 2008 explored the longitu-
to be excluded so as not to bias the results. Similarly, the dinal rates of affective disorders, including diabetes distress,
reporting of comorbid depressive symptoms/depression was demonstrating an approximate point prevalence of 46% in
highly varied with 10 different scales reported, two studies people with Type 2 diabetes [16]. The current findings
reporting diagnoses by clinical diagnostic interview and one demonstrated a 36% prevalence of diabetes distress in people
study merely stating the percentage that has ‘regular MD’ with Type 2 diabetes, which is higher than the research
(major depression). Although further heterogeneity between combining Type 1 diabetes and Type 2 diabetes populations
studies was evident in terms of study location and population and could be indicative of a difference between how diabetes
demographics, this was useful in terms of understanding the distress manifests and presents in these populations.
prevalence of diabetes distress across variables. Although research has shown that rates are similar when
Overall study quality demonstrated a moderate risk of appropriate type-specific scales are used, with a 42.1% point
bias, with the majority of studies scoring as ‘moderate– prevalence and 54.4% incidence of diabetes distress in
strong’. We observed a large proportion of negative counts people with Type 1 diabetes, and 46.2% and 54.3% in
resulting from a lack of reporting, such as insufficient people with Type 2 diabetes respectively [23]. The current

ª 2017 Diabetes UK 1517


DIABETICMedicine Prevalence of diabetic-specific emotional distress in Type 2 diabetes  N. E. Perrin et al.

study is the first systematic review and meta-analysis of DDS and PAID acknowledged that although both scales are
diabetes distress in Type 2 diabetes and highlights the excellent psychometric self-report measures, they bear fun-
importance of understanding how diabetes distress manifests damental differences in terms of the domains they address
in this population specifically. [50]. For example, the authors noted that the PAID scale
The results demonstrated that diabetes distress was encapsulates a broader range of emotional concerns than the
significantly higher in samples with a majority of women DDS, the latter encompassing factors more closely linked to
compared with samples with a majority of men. Previous diabetes self-management. This could explain the differences
studies have recognized a link between female gender and in prevalence between the measures found in the present
diabetes distress, as well as depression and anxiety, with findings, because the scales themselves explore fundamen-
greater risk in women compared with men [13,16]. This tally different aspects of diabetes distress. This also elucidates
increased presence of expressed emotional difficulties in concerns about the disparity in defining and assessing
women with Type 2 diabetes may be attributable to diabetes distress; because there is no one-single definition
differing social conventions regarding gender: men appear or diagnostic criterion for diabetes distress, this leaves open
less likely to seek help and/or admit distress due to a need further obstacles in properly identifying, and thus treating,
to appear capable or for fear of being emasculated by people with Type 2 diabetes who present with comorbid
showing weakness [36]. A further argument could be that psychological difficulties. This issue is further clouded when
men may try to fulfil ‘masculine’ gender identities, such as considering the grouping of Type 1 diabetes and Type 2
problem solving, which could encourage them to privilege diabetes together when exploring the notion of diabetes
treatment advice to overcome their condition [37]. distress. Although there is evidence to suggest that there are
Although such stereotypes may be less prevalent in no fundamental differences in reported diabetes-related
younger cohorts, amongst older generations, who are stressors between the two condition types using the PAID
over-represented in the studies reviewed, these gender scale [26], using specific scales developed for Type 1 and
identities may pertain and partially explain why emotional Type 2 diabetes, such as the T1-DDS and T2-DDS, may
difficulties appear less common in men. This reiterates a foster better understanding of the experience and care needs
need to take account of an individual’s personal presen- of these individuals.
tation and circumstance when approaching assessment of
well-being both psychologically and in terms of physiolog-
Conclusion
ical diabetes-related issues, to ensure the best identification
of issues to treat and offer appropriate management of The findings of this review demonstrate that diabetes distress
these. is a prominent issue in people with Type 2 diabetes, and that
Our findings also demonstrated a significant difference in it is greater in groups with a female gender majority and with
diabetes distress rates when accounting for the prevalence higher prevalence of comorbid depressive symptoms. Depres-
of comorbid depression in the samples, with significantly sion and diabetes distress are highly related and both appear
lower prevalence of diabetes distress in samples with low to be under-recognized and inadequately treated in Type 2
to no prevalence of comorbid depression. This supports diabetes. The findings of this review highlight the importance
existing research highlighting that diabetes distress and of the identification and subsequent management of diabetes
depression are highly correlated constructs [38–43]. distress and/or depression in people with Type 2 diabetes,
Research has emphasized concerns with poor recognition with particular priority given to the use of appropriate scales
in both depression [44–48] and diabetes distress [43,49], and the interpretation of findings to allow for patient-centred
with a substantial overlap between symptoms and presen- and suitably tailored care. Further work is required to
tation of both conditions. It is important to consider when explore psychological comorbidity in people with Type 2
assessing psychological status in people with Type 2 diabetes and gain better understanding of how best to
diabetes that these are different constructs that can either support them.
coexist, occur in isolation, or present distinct from one
another.
Funding sources
Prevalence of diabetes distress appeared higher in studies
reporting the DDS compared with the PAID and the PAID-5 We acknowledge support from the National Institute for
scales, although this difference was non-significant. It would Health Research Collaboration for Leadership in Applied
be advantageous for future research to explore this further to Health Research and Care – Leicestershire, Northampton-
see whether the increased prevalence scores seen with the shire and Rutland (NIHR CLAHRC – LNR), the Leicester
DDS vs. the PAID scale might be due to varying stringency in Clinical Trials Unit and the NIHR Leicester-Loughborough
their opposing criteria (40% vs. 20% thresholds), with our Diet, Lifestyle and Physical Activity Biomedical Research
findings corroborated by higher reported diabetes distress in Unit which is a partnership between University Hospitals of
the USA, where the DDS is more predominantly used, Leicester NHS Trust, Loughborough University and the
compared with Europe [26]. A recent study comparing the University of Leicester.

1518 ª 2017 Diabetes UK


Systematic Review or Meta-analysis DIABETICMedicine

17 Lustman PJ, Anderson RJ, Freedland KE, De Groot M, Carney


Competing interests RM, Clouse RE. Depression and poor glycemic control: a meta-
analytic review of the literature. Diabetes Care 2000; 23: 934–942.
None declared.
18 Van Bastelaar KMP, Pouwer F, Geelhoed-Duijvestijn PHLM, Tack
CJ, Bazelmans E, Beekman AT et al. Diabetes-specific emotional
distress mediates the association between depressive symptoms and
Acknowledgements
glycaemic control in Type 1 and Type 2 diabetes. Diabet Med
We acknowledge Shaun Barber for his support as second 2010; 27: 798–803.
19 Fisher L, Mullan JT, Arean P, Glasgow RE, Hessler D, Masharani U.
reviewer.
Diabetes distress but not clinical depression or depressive symptoms
is associated with glycemic control in both cross-sectional and
longitudinal analyses. Diabetes Care 2010; 33: 23–28.
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