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Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes
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Contents lists available at ScienceDirect
Primary Care Diabetes journal homepage: http://www.elsevier.com/locate/pcd
Original research
Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes Lene E. Joensen a,∗ , Thomas P. Almdal b , Ingrid Willaing a a b
Steno Health Promotion Research, Steno Diabetes Center, Gentofte, Denmark Gentofte University Hospital, Gentofte, Denmark
a r t i c l e
i n f o
a b s t r a c t
Article history:
Aim: The objective was to investigate associations between emotional burden and a num-
Received 28 October 2014
ber of individual variables: patient characteristics, social relations, diabetes management
Received in revised form
in everyday life, generic quality of life and glycaemic control, including determining to
13 May 2015
what extend these variables explain the differences in emotional burden in a large Danish
Accepted 15 June 2015
population of people with type 1 diabetes.
Available online xxx
Methods: We analysed a cross-sectional survey of 2419 Danish adults with type-1 diabetes mellitus and data from an electronic patient record. Data were analysed using hierarchical
Keywords:
regression of factors of interest with emotional burden of diabetes as the dependent variable.
Type-1 diabetes
Results: High emotional burden of diabetes was associated with being female, younger age,
Adults
other chronic illness, low diabetes-specific support, low generic quality of life, low diabetes
Diabetes distress
empowerment and high Hba1c. Low diabetes empowerment, low generic quality of life
Emotional burden
and low diabetes-specific support were associated with the largest difference in emotional
Social support
burden level.
Generic quality of life
Conclusions: A variety of psychosocial and behavioural factors such as low social support,
Diabetes empowerment
low generic quality of life and difficulties in managing diabetes are associated with high
Self-management
emotional burden in type-1 diabetes. These findings may call for an expansion of the effort
HbA1c
to decrease the emotional burden of diabetes for those who are heavily burdened. Future research should explore the causality of the explored associations as well as potential subgroup differences in order to guide the development of appropriate interventions. © 2015 Primary Care Diabetes Europe. Published by Elsevier Ltd. All rights reserved.
∗
Corresponding author at: Niels Steensens Vej 6 DK-2820, Gentofte, Denmark. Tel.: +45 3968 0800. E-mail address: [email protected] (L.E. Joensen).
http://dx.doi.org/10.1016/j.pcd.2015.06.007 1751-9918/© 2015 Primary Care Diabetes Europe. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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1.
Introduction
The association of diabetes and poor psychological health has been widely explored, predominantly among people with type-2 diabetes and in mixed populations of adults with type1 and type-2 diabetes [1–3]. In particular, the association between diabetes and depression has been a focal point in research of the psychological aspects of diabetes [1]. However, the search for a psychiatric diagnosis often decreases or eliminates attention paid to common emotional responses of living with diabetes [4,5]. Diabetes distress has been found to be distinct from and more prevalent than depression among adults with diabetes [4,6]. Furthermore, a previous study in adults with type-2 diabetes showed that, compared with depression, diabetes distress is independently and more strongly associated with poor diabetes self-management and poor glycaemic control [4]. Diabetes distress is highly prevalent among adults with diabetes (type 1 and type 2) [7–9]. The first international Diabetes Wishes Attitudes and Needs Study (DAWN) showed that diabetes distress was more common in type-1 diabetes than type-2 diabetes and the proportion of adults with type1 diabetes distress ranged internationally from 27 to 52% [7]. However, few studies have explored diabetes distress exclusively in adults with type-1 diabetes [9,10]. Furthermore, although diabetes distress has been recognised as common in people with diabetes, few studies have explored what characterises people living with diabetes distress. In one longitudinal study, people with type-2 diabetes were more likely to have high levels of diabetes distress if they were women, had diabetes complications, had experienced negative life events, had previously been depressed and had eaten unhealthily or been less physically active [15]. Previous cross-sectional research, primarily among people with type-2 diabetes, has found high diabetes distress to be associated with low quality of life and difficulties in managing diabetes in everyday life such as low self-efficacy, low diabetes empowerment, unhealthy diet and less physical activity [4,9,11–14]. Furthermore studies have suggested that high diabetes distress is associated with high levels of HbA1c [9,10,12]. Few studies have suggested a relationship between social relations (social support and social network) and psychological aspects of diabetes [16–18], but the exploration of psychosocial problems in diabetes often does not include possible relationships between psychological and social aspects. Poor social relations are associated with poor mental health in the general population [19–21] and studies have shown good social relations to be associated with reduced psychosocial problems among people with type-2 diabetes [16,22–24]. Social relations are thus likely to be associated with diabetes distress in type-1 diabetes. The interrelationship between psychological health and social relations is also reflected in the constructs of distress in diabetes, which includes feelings about support from family and friends along with the emotional burden of diabetes [11,25]. A Danish cross-sectional survey showed that diabetes distress is highly prevalent among adults with type-1 diabetes mellitus and that emotional burden is the most prevalent type of diabetes distress [9]. The objective of this study was
Table 1 – Emotional Burden items [11]. Feeling that diabetes is taking up too much of my mental and physical energy every day Feeling angry, scared and/or depressed when I think about living with diabetes Feeling that I will end up with serious long-term complications, no matter what I do Feeling that diabetes controls my life Feeling overwhelmed by the demands of living with diabetes
to investigate the association between emotional burden in diabetes and patient characteristics (age, sex, diabetes duration, complication status, other chronic illness, educational and occupational status), social relations (social support and social network), diabetes management in everyday life (diabetes empowerment and self-management), generic quality of life and glycaemic control (HbA1c level). We aimed at determining to what extend these variables explain differences in emotional burden of diabetes in a large Danish population of people with type-1 diabetes.
2.
Methods
2.1.
Study population
We used a cross-sectional survey of 2419 (corresponding to a response rate of 67%) adults with type-1 diabetes mellitus conducted at Steno Diabetes Center, which is a specialised diabetes clinic in greater Copenhagen, Denmark. The survey included data from a validated questionnaire and data from an electronic patient record. Data were collected in October 2011. A questionnaire and prepaid reply envelope were initially mailed to 3605 adult outpatients. Reminders were mailed to non-respondents after 2 and 4 weeks and with inclusion of the questionnaire and a postage-paid envelope. Data collection was terminated after 6 weeks. An email and telephone service, operated by a diabetes nurse, was available for the survey recipients in the data collection period if clarification of survey items was needed. Fourteen persons who had died or reported that they did not have type-1 diabetes were excluded; of the remaining 3591 persons with type-1 diabetes, 2419 completed the questionnaire [18]. We exclusively included the 1872 survey respondents who had answered all items used in the analyses to avoid differences in the results due to different samples and sample sizes. However, analyses investigating the robustness of the findings by including all survey respondents (2419) in each step of the regression models did not produce substantially different results. Missing values on single items in the survey ranged from <1 to 5%, indicating high data quality. All scales had less than 7% missing values.
2.2.
Outcome variable
Emotional burden was measured by the five items on the emotional burden subscale of the Diabetes Distress Scale (DDS17) shown in Table 1 [11]. Possible scores on each item are: 1 (”not a problem”), 2 (”a slight problem”), 3 (”a moderate problem”), 4 (”a somewhat serious problem”), 5 (”a serious problem”) and
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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6 (”a very serious problem”). Emotional burden was calculated as the average of the scores on the individual items [9]. Exclusively survey respondents with answers to all five items were included.
2.3.
Independent Variables
2.3.1.
Patient characteristics
Age, diabetes duration and gender were obtained from the electronic patient record. Complication status was obtained from the electronic patient records (ICD-10 codes) and dichotomised into no complications (E10.9) and complications (E10.0−E10.8). Education. Two items assessed educational level. One item measured years of primary and secondary education and one item measured highest level of education. Responses were grouped into five categories: primary/secondary school (≤10 years of education), upper secondary or vocational school (10−12 years), short higher education (13−14 years), medium higher education (15−16 years) and long higher education (≥17 years).
2.4.
Social Relations
We looked separately at structural and functional aspects of social relations. Social network (structural aspects of social relations) included three dichotomous variables: (1) living without a partner (yes/no), (2) frequency of contact with friends (twice a month or less/more than twice a month) and (3) frequency of contacts with family (twice a month or less/more than twice a month). Social support (functional aspects of social relations) included two dimensions. General social support, a dichotomous variable, was measured as whether or not respondents perceived they could get help in case of severe illness, an item from the Danish Population Health Profile [26]. Diabetes-specific social support was measured by the diabetes-specific social support attitude scale from the Diabetes Care Profile (DCP) [27]. The scale contains six items assessing perceived support from family and friends, e.g. “my family and friends listen to me when I want to talk about my diabetes.” Possible scores on each item range from 1 (“strongly disagree”) to 5 (“strongly agree”), and the scale score was calculated as the average score across items [18].
2.5.
Diabetes management in everyday life
Diabetes empowerment and self-care activities were included as measures of diabetes self-management. Diabetes empowerment was measured by the Diabetes Empowerment Scale-Short Form (DES-SF), which contains eight questions regarding psychosocial self-efficacy. Possible item scores range from 1 (“strongly disagree”) to 5 (“strongly agree”), and the total score was calculated as the average of the scores on individual items [18,28,29]. Survey respondents with answers on all eight items were included. Diabetes self-management was measured by items from the revised version of the Summary of Diabetes Self-Care Activities (SDSCA) scale including how many days during the previous 7 days, respondents had
3
eaten healthily, examined their feet and exercised for at least 30 min [30]. Generic quality of life was measured by the mental component score (MCS) of the 12-item short form (SF12) scale assessing perceived health-related quality of life [31]. Possible component scores range from 0 (poor health) to 100 (good health) [31]. Scale scores were calculated using the scoring module of the SF12. Glycaemic control was measured as the most recent HbA1c level recorded before December 2011in the electronic patient record. The number of months between the most recent HbA1c test and survey completion ranged from 0 to 37.7 with a mean of 1.9 months (SD = 2.9). The majority of respondents (91%) had means ≤ 4 months.
2.6.
Statistical analyses and ethics
We compared respondents with non-respondents in terms of gender, age, diabetes duration, complications and HbA1c level, assessing the statistical significance of differences in proportions for dichotomised variables with the Chi-square test and differences in means for continuous variables with the t-test. We also compared study participants with excluded survey respondents. Associations between independent variables and emotional burden were initially examined by univariate linear regressions. To assure that the associations between outcome (emotional burden) and the factors of interest (social relations, generic quality of life, diabetes management in everyday life and HbA1c) were not driven by patient characteristics, we also performed analyses of these associations with adjustment of patient characteristics. Hierarchical regression modelling was used with emotional burden as the dependent variable. First, patient characteristics (model 1) were included, then social relations (model 2), followed by non-diabetes specific quality of life (model 3), diabetes management in everyday life (model 4) and HbA1c (model 5). Unstandardised correlation coefficients were used (termed B) to assess the correlation between independent variables and emotional burden. The unstandardised correlation coefficients state how much the emotional burden scale score changes when the independent variables change one unit. We also assessed the explained variance with R2 using the F-test to determine whether added variables contributed significantly to the explanation of variance. We considered p < 0.05 as constituting statistical significance. To address multiple testing in the regression models, we also applied revised criteria for significant p-values in accordance with the Holm procedure [32]. Multi-collinearity between independent factors was tested in all models by the Variances Inflation Factor (VIF). All VIF was below 2.0, equal to 1.4 times larger standard errors on the B-values, which we interpreted as low multi-collinearity. All statistical analyses were performed using SAS 9.2. The study was approved by the Danish Data Protection Agency and the methods conformed to the Declaration of Helsinki criteria. The Danish Committee on Health Research Ethics has accepted the study (H-1-2011-FSP-006). Participants gave informed consent by returning the questionnaire. (Table 1)
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Table 2 – Characteristics of study participants including comparison with non-participants. Survey nonrespondents (n = 1172) Female 43.0 43.8 Age, mean (years) 22.1 Diabetes duration, mean (years) 51.1 Complications Other chronic disease 8.6/70 HbA1c, mean (%, mmol/mol) Education Primary school Upper secondary or vocational school Short higher education Medium higher education Long higher education Structural social network Living without a partner or spouse Meet with family ≤ twice a month Meet with friends≤ twice a month Social support Not sure of help in the case of severe illness Very low-to-moderate diabetes-specific social support Moderate-to-high emotional burden (DDS17 subscale) Low diabetes empowerment Poor/fair general health (SF12) Self-management behaviours, mean (days a week) Healthy diet Foot Examination Exercise
Survey respondents (n = 2419)
Survey respondents without responses to all study-specific items (n = 547)
Study participants (n = 1872)
48.0 (p = 0.005a ) 51.6 (p < 0.001a ) 26.8 (p < 0.001a ) 61.6 (p < 0.001a ) 46.6 8.1/65 (p < 0.001a )
49.0 (p = 0.527b ) 53.5 (p < 0.001b ) 28.5 (p = 0.003b ) 65.5 (p = 0.07b ) 46.3 (p = 0.962b ) 8.2/(p < 0.001b )
47.7 51.0 26.3 61.1 46.4 8.1/65
5.7 37.8
8.8 (p = 0.002b ) 39.6 (p = 0.404b )
5.0 37.4
12.3 24.3 19.9
8.5 (p = 0.009b ) 23.9 (p = 0.854b ) 19.2 (p = 0.679b )
13.2 24.4 20.1
30.6
33.3 (p = 0.138b )
30.0
20.8 21.0
25.4 (p = 0.004b ) 22.6 (p = 0.297b )
19.6 20.5
17.9
21.0 (p = 0.038b )
17.0
8.6
11.2 (p = 0.016b )
7.8
25.2
24.6 (p = 0.757b )
25.3
12.3 19.3
15.5 (p = 0.032b ) 24.1 (p = 0.002b )
11.8 18.0
5.8 2.7 4.7
5.8 (p = 0.683b ) 2.7 (p = 0.606b ) 4.8 (p = 0.376b )
5.7 2.6 4.7
Note: All reported values are percentages unless otherwise stated. The p-value of the test of significant differences between groups is shown in brackets. a Test of difference between survey respondents and survey non-respondents. b Test of difference between study participants (survey respondents with response to all studied items) and survey respondents without responses to all items.
3.
Results
3.1.
Characteristics of participants
Table 2 shows the characteristics of respondents, nonrespondents of the survey, excluded survey respondents and study participants (respondents with responses to all items included in the study). Compared with non-respondents, respondents included a significantly larger proportion of women. In addition, respondents were older and had longer duration of disease and a higher rate of complications. HbA1c was lower among respondents compared with nonrespondents. We found statistically significant differences between study participants and excluded survey respondents. Study participants were younger, had shorter diabetes duration, lower rates of complications and lower HbA1c compared with respondents with missing values. Furthermore, there was a significantly smaller proportion of women among study participants compared with excluded survey respondents.
Approximately, one-fourth of study participants indicated moderate-to-high emotional burden of diabetes. Approximately, 30% lived without a partner or spouse, and 20% met with friends and/or family once or twice a month or less. One-fifth indicated low general social support and 8% lowto-moderate diabetes-specific social support. Approximately, 20% indicated fair or poor general health. Twelve percent reported low-to-moderate diabetes empowerment (Table 2).
3.2.
Factors associated with emotional burden
Initial analyses showed significant associations between higher emotional burden and lower age, being female, lower diabetes duration, other chronic illness and lower education (Table 3). Having complications was not significantly associated with higher emotional burden. Lower scores on the diabetes empowerment scale, generic quality of life scale and diabetes-specific support scale were associated with the largest differences in emotional burden scores when taking into account the question and scale characteristics, e.g. one
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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Table 3 – Associations between individual characteristics and emotional burden: Unadjusted and adjusted unstandardised regression correlation coefficients (B) (n = 1872). COVARIATES
Emotional Burden (scores from 1 to 6) Unadjusted B [confidence limits]
Patient characteristics Female Lower age (per 10 years decrease) Lower diabetes Duration (per 10 years decrease) Complications Other chronic illness Education Primary school Upper secondary or vocational school Short higher education Medium higher education Long higher education Social relations Living without a partner Meet with friends < once a month Meet with family < once a month Low diabetes-specific social support Low social support–general General quality of life Low SF12 Mental Component Score Diabetes self-management in everyday life Low diabetes empowerment (DES-SF score) Unhealthy diet (days of week) Less frequently foot examination (days of week) Less frequently physical activity (days of week) HbA1c
p
Adjustment of patient characteristics B [confidence limits] p
0.28 [0.18−0.38] 0.13 [0.10−0.16)] 0.06 [0.04−0.10)] 0.02 [-0.13−0.08] 0.29 [0.19−0.39]
<0.001 <0.001 <0.001 0.665 <0.001
0.18 [-0.07−0.43] 0.31 [0.17−0.45] 0.25 [0.07−0.43] 0.18 [0.03−0.34] Ref
0.167 <0.001 0.007 0.017
0.28 [0.17−0.39] 0.30 [0.17−0.42] 0.12 [0.02−-0.25] 0.74 [0.65−0.80] 0.58 [0.45−0.72]
<0.001 <0.001 0.005 <0.001 <0.001
0.19 [0.08−0.30] 0.38 [0.26−0.50] 0.19 [0.06−0.31] 0.56 [0.44−0.69] 0.68 [0.61−0.75]
<0.001 <0.001 0.003 <0.001 <0.001
0.05 [0.05−0.06]
<0.001
0.05 [0.04−0.07]
<0.001
0.87 [0.80−0.93] 0.13 [0.10−0.16] 0.02 [0.00−0.04] 0.05 [0.03−0.08] 0.18 [0.14−0.23]
<0.001 <0.001 0.023 <0.001 <0.001
0.81 [0.75−0.88] 0.11 [0.08−0.13] 0.01 [0.00−0.03] 0.04 [0.02−0.06] 0.14 [0.10−0.19]
<0.001 <0.001 0.337 <0.001 <0.001
unit change on the empowerment scale from 1 to 5 accounted for a change in the emotional score of 0.74 [0.65−0.80]. When adjusting for patient characteristics, living without a partner, meeting with friends once/twice a month or less, low diabetes-specific social support, low general social support, low generic quality of life, low diabetes empowerment, unhealthy diet, less physical activity and high Hba1c were all significantly associated with high emotional burden (Table 3). Adjusting for patient characteristics decreased the associated differences in emotional burden (B-values). However, only the difference between low diabetes empowerment and emotional burden was significantly decreased, i.e. confidence intervals did not overlap. Patient characteristics explained 7.2% of the variance in emotional burden in the studied population (Table 4). Further inclusion of social relation factors raised the explained proportion from 7.5 to 22.3%. Inclusion of generic quality of life raised the explained proportion from 22.3 to 32.8% of the variance in emotional burden. Of the social relations variables included, only diabetes-specific social support contributed significantly to the explanation of variance in emotional burden after inclusion of generic quality of life. Diabetes management in everyday life raised the explanatory power of the variance in the study population to 40.0%, but only diabetes empowerment contributed significantly to the explanation of the variance in emotional burden, when included with self-care activities. Higher HbA1c was significantly associated with emotional burden when included with the wide range of factors and raised the explanatory power of the variance significantly to 41.1%. The final model showed significant associations between
high emotional burden and being female, younger age, other chronic illness, low diabetes-specific support, low generic quality of life, low diabetes empowerment, high Hba1c.
4.
Discussion
The aim of the study was to investigate associations between a wide range of individual patient factors and emotional burden of diabetes. In other words to study what characterises people experience high emotional burden of diabetes. A large part of the variables investigated in this study are modifiable and therefore relevant in clinical practice. We found that younger age, having another chronic illness, low social support, low quality of life, low diabetes empowerment and having high HbA1c characterises people with higher emotional burden. Furthermore, women with type-1 diabetes experience higher emotional burden of diabetes than men with type-1 diabetes. The explored patient factors explained a substantial amount of the variance in emotional burden in the studied population of adults with type-1 diabetes. Very few studies have looked at the associations between a wide range of psychosocial, behavioural and clinical aspects and emotional burden in type-1diabetes. However, previous studies in type-2 diabetes have found that clinical indicators such as HbA1c and BMI explain less of the variance in diabetes distress than more subjective variables such as coping strategies [33,34], which supports our finding that differences in subjective factors such as social support and diabetes empowerment are associated with larger differences in emotional
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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Table 4 – Differences in emotional burden of diabetes related to patient characteristics, social relations, diabetes management in everyday life and HbA1c (N = 1872). Variable
Model 1 B [confidence limits]
Patient characteristics Female Higher age (pr. 10 year) Higher diabetes duration (pr. 10 year) Complications Other chronic illness
0.22 [0.12−0.32] -0.14 [-0.18-(-0.10)] -0.05 [-0.09−0.00)] 0.15 [0.03−0.28] 0.34 [0.24−0.44]
Education Primary school
0.24 [-0.01−0.49] 0.24 Upper secondary or vocational school [0.10−0.38] Short higher education 0.17 [0.00−0.35] Medium higher education 0.14 [-0.01−0.28] Long higher education Ref Social relations Living without a partner Meet with friends ≤ once a month Meet with family ≤ once a month Low social support–general
Low diabetes-specific social support Non-diabetes-specific quality of life Low SF12 Mental Component Score
Model 2 p <0.001a
<0.001a 0.033 0.014
<0.001a 0.060 0.001a 0.050 0.074
B [confidence limits]
Model 3 p
0.20 [0.11−0.29] -0.14 [-0.18-(-0.11)] -0.02 [-0.01−0.02] 0.12 [-0.01−0.23] 0.24 [0.15−0.34]
<0.001a
0.12 [-0.11−0.35] 0.19 [0.06−0.31] 0.13 [-0.03−0.29] 0.12 [-0.01−0.26] Ref
0.300
0.09 [0.01−0.19] 0.25 [0.14−0.36] 0.02 [-0.01−0.19] 0.18 [0.05−0.31] 0.62 [0.54−0.70]
0.075
<0.001a 0.268 0.035 <0.001a
0.003 a 0.109 0.075
<0.001a 0.696 0.007a <0.001a
B [confidence limits]
Model 4 p
0.12 [0.04−0.22] -0.09 [-0.12-(-0.06)] -0.03 [-0.07−0.00] 0.09 [-0.01−0.19] 0.14 [0.06−0.23]
0.007a
0.01 [-0.20−0.22] 0.13 [0.02−0.25] 0.09 [-0.06−0.23] 0.10 [-0.03−0.18] Ref
0.926
0.01 [-0.01−0.07] 0.12 [0.01−0.23] 0.07 [-0.03−0.18] 0.09 [-0.03−0.22] 0.47 [0.40−0.55]
0.727
0.04 [0.03−0.04]
<0.001a
<0.001a 0.133 0.096 0.001a
0.024 0.266 0.093
0.037 0.171 0.119 <0.001a
B [confidence limits]
Model 5 p
0.12 [0.03−0.20] -0.06 [-0.10-(-0–03)] -0.01 [-0.04−0.03] 0.02 [-0.09−0.11] 0.15 [.0.6−0.23]
0.006 a
-0.05 [-0.25−0.15] 0.05 [-0.06−0.16] 0.03 [-0.11−0.18] 0.05 [-0.07−0.17] Ref
0.636
0.01 [-0.8−0.10] -0.07 [-0.18−0.03] 0.11 [0.01−0.21] 0.03 [-0.08−0.15] 0.33 [0.26−0.40]
0.747
0.03 [0.03−0.03]
<0.001a
0.002 a 0.792 0.685 <0.001a
0.349 0.640 0.412
0.539 0.045 0.576 <0.001a
B [confidence limits]
p
0.12 [0.03−0.20] -0.06 [-0.09-(-0.03)] 0.00 [-0.04−0.03] 0.00 [-0.10−0.10] 0.14 [0.05−0.22]
0.006
-0.08 [-0.29−0.12] 0.03 [-0.07−0.14] 0.03 [-0.18−0.17] 0.04 [-0.08−0.16] Ref
0.427
0.03 [-0.06−0.12] 0.08 [-0.18−0.02] 0.10 [0.02−0.21] 0.03 [-0.10−0.14] 0.33 [0.26−0.41]
0.981
0.02 [0.02−0.03]
<0.001a
0.004a 0.922 0.987 0.001a
0.524 0.676 0.482
0.130 0.052 0.925 <0.001a
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Variable
Model 1
Model 2 p
B [confidence limits]
p
Model 4
B [confidence limits]
Diabetes self-management in everyday life Low diabetes empowerment Unhealthy diet (days of week) Less frequently foot examination (days of week) Less frequently physical activity (days of week) HbA1c R2 Adjusted R2b F-test for significance of added variables
7.7% 7.2%
22.9% 22.3% <0.001
33.3% 32.8% <0.001
p
Model 5
B [confidence limits]
p
0.53 [0.46−0.60] 0.02 [0.02−0.03] 0.01 [0.00−0.03]
<0.001a
0.02 [0.00−0.04]
0.075
0.213 0.149
40.6% 40.0% <0.001
B [confidence limits]
p
0.52 [0.45−0.69] 0.01 [-0.03−0.02] 0.01 [0.00−0.03]
<0.001a
0.02 [0.01−0.03] 0.07 [0.05−0.10]
0.105
0.469 0.252
<0.001a
41.0% 40.4% <0.001
Note: All reported p-values are without correction for multiple testing. Statistically significant after revised criteria for significant p-values in accordance with the Holm procedure. b Penalises an increase in the number of variables. a
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B [confidence limits]
Model 3
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Table 4 – (Continued)
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burden scores compared with differences in HbA1c. High emotional burden seems more strongly associated with lack of social support than with poor social network: the difference in emotional burden score was lower when comparing participants living without a partner vs. living with a partner, than when comparing participants with low vs. high social support. Furthermore, the association between living without a partner and high emotional burden was dependent on the association between living without a partner and generic quality of life. The association between living without a partner turned insignificant and the correlation coefficient was close to zero after inclusion of generic quality of life in the model. Of the social relation measures included in this study, only low diabetes-specific social support was significantly correlated with low emotional burden in the final model. Furthermore, diabetes-specific social support accounted for a larger difference in the emotional burden score throughout the regression modelling compared with other social relation measures. Thus, perceptions and functions of social relations are more strongly associated with emotional burden than is the structure of the social relations. This finding is supported by previous research in people with chronic illness [35–37]. To the best of our knowledge, no studies have looked at the influence of experiences of generic distress on diabetes distress, but previous studies have shown high diabetes distress to be associated with low quality of life. Furthermore, Fisher et al. distinguish between diabetes-related distress and emotional distress in general, where emotional distress in diabetes can be caused by diabetes-related stressors but also by distress unrelated to diabetes [38]. Our results show that low generic quality of life is associated with high emotional burden and generic quality of life explains a relatively large proportion of the variance in emotional burden of diabetes in the studied type-1 population, however, the results also highlight that experiencing emotional burden of diabetes is not equivalent to generic quality of life. Our study furthermore indicates that the association between generic social support and emotional burden is influenced by generic quality of life, as the association between low generic social support and high emotional burden was less strong (B value was halved) and insignificant after inclusion of generic quality of life. Diabetes management in everyday life contributed significantly to the explanation of the variance in emotional burden in the studied population. Differences in diabetes empowerment—the broader construct of diabetes management in everyday life—were associated with larger differences in emotional burden than was self-care activities. Furthermore, only low diabetes empowerment was significantly correlated with high emotional burden when included in the model with self-care activities. However, this may not only reflect that diabetes empowerment more broadly incorporates how people manage their disease [28], but also the specific self-care activities that were measured in the study. It would have been highly relevant to include other activities such as number of blood sugar measurements per day with individual recommendations in mind. Our study highlights that the explanatory power of HbA1c in emotional burden variance in this population to a large degree is explained by the other factors included in the study. HbA1c is, however, a relevant indicator of emotional burden, as it is significantly associated
with high emotional burden also after inclusion of the wide range of other relevant factors. Strengths of our study include the large population, use of validated scales and validation of the questionnaire, the high response rate, use of objective data from an electronic patient record in close temporal proximity to survey completion and the comparison of non-respondents and respondents on data from the electronic patient record [18]. Furthermore, we performed analyses to check the robustness of the results including all respondents and these analyses showed similar results. Limitations of our study included that a large proportion of the variance in emotional burden remained unexplained. The cross-sectional study design precludes inferring causal relationships. Other limitations include missing data for non-respondents on variables such as occupational status and educational level and limited measures of social relations. Future studies could benefit from including a broader range of social relation items, e.g. distinct measures of social support from family and friends. Men, young people, and people with short diabetes duration, no complications, or poor glycaemic control are underrepresented in the full study population. Furthermore, the study participants are not representative of the full study population, as men, younger people with short diabetes duration, no complications, or good glycaemic control are overrepresented. Despite these differences, we believe that the results provide new and valid insights into bio-psycho-social health of adults with type-1 diabetes in general. The initial response rate was high; the population studied was relatively large and varied in terms of age, diabetes duration, complications and HbA1c. However, caution should be exercised when generalising to populations with different characteristics than the one studied here. Especially, the results of the explanatory power of the factors of interests should be interpreted and generalised with the distribution of the explored variables in our population taken into account. Future research could aim to explore potential differences in bio-psycho-social associations in type-1 diabetes, e.g. if associations between social and psychological aspects are different in younger people compared with older, in men compared with women or in people with or without complications. Furthermore, research is needed to shed light on other relevant factors in relation to emotional burden in diabetes, e.g. by inclusion of a broader range of potential associated factors in future studies, e.g. more diverse perspective on social relations or other perspectives on life with type-1 diabetes such as fatigue or work life. Exploring causal relations are also needed, e.g. to what extent social relations effect distress levels when explored in a longitudinal design. Knowledge of causal relationships can guide the development of appropriate interventions. For example, if enhancing diabetes-specific social support decreases the emotional burden of diabetes. An appropriate intervention might be in the format of peer support or family interventions. This study highlights that a variety of factors are associated with emotional burden in diabetes. This perspective is relevant for future research as well as clinical practice. It is in line with conclusions of Fisher et al. who argue that the range of approaches to decrease diabetes distress needs to expand according to the wide range of different causes of emotional distress [38].
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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Conflict of interest L.J. and I.W. are employed by Steno Diabetes Center A/S, a research hospital working in the Danish National Health Service and owned by Novo Nordisk A/S. Steno Diabetes Center receives part of its core funding from unrestricted grants from the Novo Foundation and Novo Nordisk A/S.
Acknowledgements The authors acknowledge Karen Rytter, Diabetes Specialist Nurse at Steno Patient Care Clinic, for the help with data collection, Ina Tapager, Incentive, for statistical guidance and Jennifer Green, Caduceus Strategies, for editorial assistance.
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Contents lists available at ScienceDirect
Primary Care Diabetes journal homepage: http://www.elsevier.com/locate/pcd
Original research
Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes Lene E. Joensen a,∗ , Thomas P. Almdal b , Ingrid Willaing a a b
Steno Health Promotion Research, Steno Diabetes Center, Gentofte, Denmark Gentofte University Hospital, Gentofte, Denmark
a r t i c l e
i n f o
a b s t r a c t
Article history:
Aim: The objective was to investigate associations between emotional burden and a num-
Received 28 October 2014
ber of individual variables: patient characteristics, social relations, diabetes management
Received in revised form
in everyday life, generic quality of life and glycaemic control, including determining to
13 May 2015
what extend these variables explain the differences in emotional burden in a large Danish
Accepted 15 June 2015
population of people with type 1 diabetes.
Available online xxx
Methods: We analysed a cross-sectional survey of 2419 Danish adults with type-1 diabetes mellitus and data from an electronic patient record. Data were analysed using hierarchical
Keywords:
regression of factors of interest with emotional burden of diabetes as the dependent variable.
Type-1 diabetes
Results: High emotional burden of diabetes was associated with being female, younger age,
Adults
other chronic illness, low diabetes-specific support, low generic quality of life, low diabetes
Diabetes distress
empowerment and high Hba1c. Low diabetes empowerment, low generic quality of life
Emotional burden
and low diabetes-specific support were associated with the largest difference in emotional
Social support
burden level.
Generic quality of life
Conclusions: A variety of psychosocial and behavioural factors such as low social support,
Diabetes empowerment
low generic quality of life and difficulties in managing diabetes are associated with high
Self-management
emotional burden in type-1 diabetes. These findings may call for an expansion of the effort
HbA1c
to decrease the emotional burden of diabetes for those who are heavily burdened. Future research should explore the causality of the explored associations as well as potential subgroup differences in order to guide the development of appropriate interventions. © 2015 Primary Care Diabetes Europe. Published by Elsevier Ltd. All rights reserved.
∗
Corresponding author at: Niels Steensens Vej 6 DK-2820, Gentofte, Denmark. Tel.: +45 3968 0800. E-mail address: [email protected] (L.E. Joensen).
http://dx.doi.org/10.1016/j.pcd.2015.06.007 1751-9918/© 2015 Primary Care Diabetes Europe. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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1.
Introduction
The association of diabetes and poor psychological health has been widely explored, predominantly among people with type-2 diabetes and in mixed populations of adults with type1 and type-2 diabetes [1–3]. In particular, the association between diabetes and depression has been a focal point in research of the psychological aspects of diabetes [1]. However, the search for a psychiatric diagnosis often decreases or eliminates attention paid to common emotional responses of living with diabetes [4,5]. Diabetes distress has been found to be distinct from and more prevalent than depression among adults with diabetes [4,6]. Furthermore, a previous study in adults with type-2 diabetes showed that, compared with depression, diabetes distress is independently and more strongly associated with poor diabetes self-management and poor glycaemic control [4]. Diabetes distress is highly prevalent among adults with diabetes (type 1 and type 2) [7–9]. The first international Diabetes Wishes Attitudes and Needs Study (DAWN) showed that diabetes distress was more common in type-1 diabetes than type-2 diabetes and the proportion of adults with type1 diabetes distress ranged internationally from 27 to 52% [7]. However, few studies have explored diabetes distress exclusively in adults with type-1 diabetes [9,10]. Furthermore, although diabetes distress has been recognised as common in people with diabetes, few studies have explored what characterises people living with diabetes distress. In one longitudinal study, people with type-2 diabetes were more likely to have high levels of diabetes distress if they were women, had diabetes complications, had experienced negative life events, had previously been depressed and had eaten unhealthily or been less physically active [15]. Previous cross-sectional research, primarily among people with type-2 diabetes, has found high diabetes distress to be associated with low quality of life and difficulties in managing diabetes in everyday life such as low self-efficacy, low diabetes empowerment, unhealthy diet and less physical activity [4,9,11–14]. Furthermore studies have suggested that high diabetes distress is associated with high levels of HbA1c [9,10,12]. Few studies have suggested a relationship between social relations (social support and social network) and psychological aspects of diabetes [16–18], but the exploration of psychosocial problems in diabetes often does not include possible relationships between psychological and social aspects. Poor social relations are associated with poor mental health in the general population [19–21] and studies have shown good social relations to be associated with reduced psychosocial problems among people with type-2 diabetes [16,22–24]. Social relations are thus likely to be associated with diabetes distress in type-1 diabetes. The interrelationship between psychological health and social relations is also reflected in the constructs of distress in diabetes, which includes feelings about support from family and friends along with the emotional burden of diabetes [11,25]. A Danish cross-sectional survey showed that diabetes distress is highly prevalent among adults with type-1 diabetes mellitus and that emotional burden is the most prevalent type of diabetes distress [9]. The objective of this study was
Table 1 – Emotional Burden items [11]. Feeling that diabetes is taking up too much of my mental and physical energy every day Feeling angry, scared and/or depressed when I think about living with diabetes Feeling that I will end up with serious long-term complications, no matter what I do Feeling that diabetes controls my life Feeling overwhelmed by the demands of living with diabetes
to investigate the association between emotional burden in diabetes and patient characteristics (age, sex, diabetes duration, complication status, other chronic illness, educational and occupational status), social relations (social support and social network), diabetes management in everyday life (diabetes empowerment and self-management), generic quality of life and glycaemic control (HbA1c level). We aimed at determining to what extend these variables explain differences in emotional burden of diabetes in a large Danish population of people with type-1 diabetes.
2.
Methods
2.1.
Study population
We used a cross-sectional survey of 2419 (corresponding to a response rate of 67%) adults with type-1 diabetes mellitus conducted at Steno Diabetes Center, which is a specialised diabetes clinic in greater Copenhagen, Denmark. The survey included data from a validated questionnaire and data from an electronic patient record. Data were collected in October 2011. A questionnaire and prepaid reply envelope were initially mailed to 3605 adult outpatients. Reminders were mailed to non-respondents after 2 and 4 weeks and with inclusion of the questionnaire and a postage-paid envelope. Data collection was terminated after 6 weeks. An email and telephone service, operated by a diabetes nurse, was available for the survey recipients in the data collection period if clarification of survey items was needed. Fourteen persons who had died or reported that they did not have type-1 diabetes were excluded; of the remaining 3591 persons with type-1 diabetes, 2419 completed the questionnaire [18]. We exclusively included the 1872 survey respondents who had answered all items used in the analyses to avoid differences in the results due to different samples and sample sizes. However, analyses investigating the robustness of the findings by including all survey respondents (2419) in each step of the regression models did not produce substantially different results. Missing values on single items in the survey ranged from <1 to 5%, indicating high data quality. All scales had less than 7% missing values.
2.2.
Outcome variable
Emotional burden was measured by the five items on the emotional burden subscale of the Diabetes Distress Scale (DDS17) shown in Table 1 [11]. Possible scores on each item are: 1 (”not a problem”), 2 (”a slight problem”), 3 (”a moderate problem”), 4 (”a somewhat serious problem”), 5 (”a serious problem”) and
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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6 (”a very serious problem”). Emotional burden was calculated as the average of the scores on the individual items [9]. Exclusively survey respondents with answers to all five items were included.
2.3.
Independent Variables
2.3.1.
Patient characteristics
Age, diabetes duration and gender were obtained from the electronic patient record. Complication status was obtained from the electronic patient records (ICD-10 codes) and dichotomised into no complications (E10.9) and complications (E10.0−E10.8). Education. Two items assessed educational level. One item measured years of primary and secondary education and one item measured highest level of education. Responses were grouped into five categories: primary/secondary school (≤10 years of education), upper secondary or vocational school (10−12 years), short higher education (13−14 years), medium higher education (15−16 years) and long higher education (≥17 years).
2.4.
Social Relations
We looked separately at structural and functional aspects of social relations. Social network (structural aspects of social relations) included three dichotomous variables: (1) living without a partner (yes/no), (2) frequency of contact with friends (twice a month or less/more than twice a month) and (3) frequency of contacts with family (twice a month or less/more than twice a month). Social support (functional aspects of social relations) included two dimensions. General social support, a dichotomous variable, was measured as whether or not respondents perceived they could get help in case of severe illness, an item from the Danish Population Health Profile [26]. Diabetes-specific social support was measured by the diabetes-specific social support attitude scale from the Diabetes Care Profile (DCP) [27]. The scale contains six items assessing perceived support from family and friends, e.g. “my family and friends listen to me when I want to talk about my diabetes.” Possible scores on each item range from 1 (“strongly disagree”) to 5 (“strongly agree”), and the scale score was calculated as the average score across items [18].
2.5.
Diabetes management in everyday life
Diabetes empowerment and self-care activities were included as measures of diabetes self-management. Diabetes empowerment was measured by the Diabetes Empowerment Scale-Short Form (DES-SF), which contains eight questions regarding psychosocial self-efficacy. Possible item scores range from 1 (“strongly disagree”) to 5 (“strongly agree”), and the total score was calculated as the average of the scores on individual items [18,28,29]. Survey respondents with answers on all eight items were included. Diabetes self-management was measured by items from the revised version of the Summary of Diabetes Self-Care Activities (SDSCA) scale including how many days during the previous 7 days, respondents had
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eaten healthily, examined their feet and exercised for at least 30 min [30]. Generic quality of life was measured by the mental component score (MCS) of the 12-item short form (SF12) scale assessing perceived health-related quality of life [31]. Possible component scores range from 0 (poor health) to 100 (good health) [31]. Scale scores were calculated using the scoring module of the SF12. Glycaemic control was measured as the most recent HbA1c level recorded before December 2011in the electronic patient record. The number of months between the most recent HbA1c test and survey completion ranged from 0 to 37.7 with a mean of 1.9 months (SD = 2.9). The majority of respondents (91%) had means ≤ 4 months.
2.6.
Statistical analyses and ethics
We compared respondents with non-respondents in terms of gender, age, diabetes duration, complications and HbA1c level, assessing the statistical significance of differences in proportions for dichotomised variables with the Chi-square test and differences in means for continuous variables with the t-test. We also compared study participants with excluded survey respondents. Associations between independent variables and emotional burden were initially examined by univariate linear regressions. To assure that the associations between outcome (emotional burden) and the factors of interest (social relations, generic quality of life, diabetes management in everyday life and HbA1c) were not driven by patient characteristics, we also performed analyses of these associations with adjustment of patient characteristics. Hierarchical regression modelling was used with emotional burden as the dependent variable. First, patient characteristics (model 1) were included, then social relations (model 2), followed by non-diabetes specific quality of life (model 3), diabetes management in everyday life (model 4) and HbA1c (model 5). Unstandardised correlation coefficients were used (termed B) to assess the correlation between independent variables and emotional burden. The unstandardised correlation coefficients state how much the emotional burden scale score changes when the independent variables change one unit. We also assessed the explained variance with R2 using the F-test to determine whether added variables contributed significantly to the explanation of variance. We considered p < 0.05 as constituting statistical significance. To address multiple testing in the regression models, we also applied revised criteria for significant p-values in accordance with the Holm procedure [32]. Multi-collinearity between independent factors was tested in all models by the Variances Inflation Factor (VIF). All VIF was below 2.0, equal to 1.4 times larger standard errors on the B-values, which we interpreted as low multi-collinearity. All statistical analyses were performed using SAS 9.2. The study was approved by the Danish Data Protection Agency and the methods conformed to the Declaration of Helsinki criteria. The Danish Committee on Health Research Ethics has accepted the study (H-1-2011-FSP-006). Participants gave informed consent by returning the questionnaire. (Table 1)
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Table 2 – Characteristics of study participants including comparison with non-participants. Survey nonrespondents (n = 1172) Female 43.0 43.8 Age, mean (years) 22.1 Diabetes duration, mean (years) 51.1 Complications Other chronic disease 8.6/70 HbA1c, mean (%, mmol/mol) Education Primary school Upper secondary or vocational school Short higher education Medium higher education Long higher education Structural social network Living without a partner or spouse Meet with family ≤ twice a month Meet with friends≤ twice a month Social support Not sure of help in the case of severe illness Very low-to-moderate diabetes-specific social support Moderate-to-high emotional burden (DDS17 subscale) Low diabetes empowerment Poor/fair general health (SF12) Self-management behaviours, mean (days a week) Healthy diet Foot Examination Exercise
Survey respondents (n = 2419)
Survey respondents without responses to all study-specific items (n = 547)
Study participants (n = 1872)
48.0 (p = 0.005a ) 51.6 (p < 0.001a ) 26.8 (p < 0.001a ) 61.6 (p < 0.001a ) 46.6 8.1/65 (p < 0.001a )
49.0 (p = 0.527b ) 53.5 (p < 0.001b ) 28.5 (p = 0.003b ) 65.5 (p = 0.07b ) 46.3 (p = 0.962b ) 8.2/(p < 0.001b )
47.7 51.0 26.3 61.1 46.4 8.1/65
5.7 37.8
8.8 (p = 0.002b ) 39.6 (p = 0.404b )
5.0 37.4
12.3 24.3 19.9
8.5 (p = 0.009b ) 23.9 (p = 0.854b ) 19.2 (p = 0.679b )
13.2 24.4 20.1
30.6
33.3 (p = 0.138b )
30.0
20.8 21.0
25.4 (p = 0.004b ) 22.6 (p = 0.297b )
19.6 20.5
17.9
21.0 (p = 0.038b )
17.0
8.6
11.2 (p = 0.016b )
7.8
25.2
24.6 (p = 0.757b )
25.3
12.3 19.3
15.5 (p = 0.032b ) 24.1 (p = 0.002b )
11.8 18.0
5.8 2.7 4.7
5.8 (p = 0.683b ) 2.7 (p = 0.606b ) 4.8 (p = 0.376b )
5.7 2.6 4.7
Note: All reported values are percentages unless otherwise stated. The p-value of the test of significant differences between groups is shown in brackets. a Test of difference between survey respondents and survey non-respondents. b Test of difference between study participants (survey respondents with response to all studied items) and survey respondents without responses to all items.
3.
Results
3.1.
Characteristics of participants
Table 2 shows the characteristics of respondents, nonrespondents of the survey, excluded survey respondents and study participants (respondents with responses to all items included in the study). Compared with non-respondents, respondents included a significantly larger proportion of women. In addition, respondents were older and had longer duration of disease and a higher rate of complications. HbA1c was lower among respondents compared with nonrespondents. We found statistically significant differences between study participants and excluded survey respondents. Study participants were younger, had shorter diabetes duration, lower rates of complications and lower HbA1c compared with respondents with missing values. Furthermore, there was a significantly smaller proportion of women among study participants compared with excluded survey respondents.
Approximately, one-fourth of study participants indicated moderate-to-high emotional burden of diabetes. Approximately, 30% lived without a partner or spouse, and 20% met with friends and/or family once or twice a month or less. One-fifth indicated low general social support and 8% lowto-moderate diabetes-specific social support. Approximately, 20% indicated fair or poor general health. Twelve percent reported low-to-moderate diabetes empowerment (Table 2).
3.2.
Factors associated with emotional burden
Initial analyses showed significant associations between higher emotional burden and lower age, being female, lower diabetes duration, other chronic illness and lower education (Table 3). Having complications was not significantly associated with higher emotional burden. Lower scores on the diabetes empowerment scale, generic quality of life scale and diabetes-specific support scale were associated with the largest differences in emotional burden scores when taking into account the question and scale characteristics, e.g. one
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Table 3 – Associations between individual characteristics and emotional burden: Unadjusted and adjusted unstandardised regression correlation coefficients (B) (n = 1872). COVARIATES
Emotional Burden (scores from 1 to 6) Unadjusted B [confidence limits]
Patient characteristics Female Lower age (per 10 years decrease) Lower diabetes Duration (per 10 years decrease) Complications Other chronic illness Education Primary school Upper secondary or vocational school Short higher education Medium higher education Long higher education Social relations Living without a partner Meet with friends < once a month Meet with family < once a month Low diabetes-specific social support Low social support–general General quality of life Low SF12 Mental Component Score Diabetes self-management in everyday life Low diabetes empowerment (DES-SF score) Unhealthy diet (days of week) Less frequently foot examination (days of week) Less frequently physical activity (days of week) HbA1c
p
Adjustment of patient characteristics B [confidence limits] p
0.28 [0.18−0.38] 0.13 [0.10−0.16)] 0.06 [0.04−0.10)] 0.02 [-0.13−0.08] 0.29 [0.19−0.39]
<0.001 <0.001 <0.001 0.665 <0.001
0.18 [-0.07−0.43] 0.31 [0.17−0.45] 0.25 [0.07−0.43] 0.18 [0.03−0.34] Ref
0.167 <0.001 0.007 0.017
0.28 [0.17−0.39] 0.30 [0.17−0.42] 0.12 [0.02−-0.25] 0.74 [0.65−0.80] 0.58 [0.45−0.72]
<0.001 <0.001 0.005 <0.001 <0.001
0.19 [0.08−0.30] 0.38 [0.26−0.50] 0.19 [0.06−0.31] 0.56 [0.44−0.69] 0.68 [0.61−0.75]
<0.001 <0.001 0.003 <0.001 <0.001
0.05 [0.05−0.06]
<0.001
0.05 [0.04−0.07]
<0.001
0.87 [0.80−0.93] 0.13 [0.10−0.16] 0.02 [0.00−0.04] 0.05 [0.03−0.08] 0.18 [0.14−0.23]
<0.001 <0.001 0.023 <0.001 <0.001
0.81 [0.75−0.88] 0.11 [0.08−0.13] 0.01 [0.00−0.03] 0.04 [0.02−0.06] 0.14 [0.10−0.19]
<0.001 <0.001 0.337 <0.001 <0.001
unit change on the empowerment scale from 1 to 5 accounted for a change in the emotional score of 0.74 [0.65−0.80]. When adjusting for patient characteristics, living without a partner, meeting with friends once/twice a month or less, low diabetes-specific social support, low general social support, low generic quality of life, low diabetes empowerment, unhealthy diet, less physical activity and high Hba1c were all significantly associated with high emotional burden (Table 3). Adjusting for patient characteristics decreased the associated differences in emotional burden (B-values). However, only the difference between low diabetes empowerment and emotional burden was significantly decreased, i.e. confidence intervals did not overlap. Patient characteristics explained 7.2% of the variance in emotional burden in the studied population (Table 4). Further inclusion of social relation factors raised the explained proportion from 7.5 to 22.3%. Inclusion of generic quality of life raised the explained proportion from 22.3 to 32.8% of the variance in emotional burden. Of the social relations variables included, only diabetes-specific social support contributed significantly to the explanation of variance in emotional burden after inclusion of generic quality of life. Diabetes management in everyday life raised the explanatory power of the variance in the study population to 40.0%, but only diabetes empowerment contributed significantly to the explanation of the variance in emotional burden, when included with self-care activities. Higher HbA1c was significantly associated with emotional burden when included with the wide range of factors and raised the explanatory power of the variance significantly to 41.1%. The final model showed significant associations between
high emotional burden and being female, younger age, other chronic illness, low diabetes-specific support, low generic quality of life, low diabetes empowerment, high Hba1c.
4.
Discussion
The aim of the study was to investigate associations between a wide range of individual patient factors and emotional burden of diabetes. In other words to study what characterises people experience high emotional burden of diabetes. A large part of the variables investigated in this study are modifiable and therefore relevant in clinical practice. We found that younger age, having another chronic illness, low social support, low quality of life, low diabetes empowerment and having high HbA1c characterises people with higher emotional burden. Furthermore, women with type-1 diabetes experience higher emotional burden of diabetes than men with type-1 diabetes. The explored patient factors explained a substantial amount of the variance in emotional burden in the studied population of adults with type-1 diabetes. Very few studies have looked at the associations between a wide range of psychosocial, behavioural and clinical aspects and emotional burden in type-1diabetes. However, previous studies in type-2 diabetes have found that clinical indicators such as HbA1c and BMI explain less of the variance in diabetes distress than more subjective variables such as coping strategies [33,34], which supports our finding that differences in subjective factors such as social support and diabetes empowerment are associated with larger differences in emotional
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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Table 4 – Differences in emotional burden of diabetes related to patient characteristics, social relations, diabetes management in everyday life and HbA1c (N = 1872). Variable
Model 1 B [confidence limits]
Patient characteristics Female Higher age (pr. 10 year) Higher diabetes duration (pr. 10 year) Complications Other chronic illness
0.22 [0.12−0.32] -0.14 [-0.18-(-0.10)] -0.05 [-0.09−0.00)] 0.15 [0.03−0.28] 0.34 [0.24−0.44]
Education Primary school
0.24 [-0.01−0.49] 0.24 Upper secondary or vocational school [0.10−0.38] Short higher education 0.17 [0.00−0.35] Medium higher education 0.14 [-0.01−0.28] Long higher education Ref Social relations Living without a partner Meet with friends ≤ once a month Meet with family ≤ once a month Low social support–general
Low diabetes-specific social support Non-diabetes-specific quality of life Low SF12 Mental Component Score
Model 2 p <0.001a
<0.001a 0.033 0.014
<0.001a 0.060 0.001a 0.050 0.074
B [confidence limits]
Model 3 p
0.20 [0.11−0.29] -0.14 [-0.18-(-0.11)] -0.02 [-0.01−0.02] 0.12 [-0.01−0.23] 0.24 [0.15−0.34]
<0.001a
0.12 [-0.11−0.35] 0.19 [0.06−0.31] 0.13 [-0.03−0.29] 0.12 [-0.01−0.26] Ref
0.300
0.09 [0.01−0.19] 0.25 [0.14−0.36] 0.02 [-0.01−0.19] 0.18 [0.05−0.31] 0.62 [0.54−0.70]
0.075
<0.001a 0.268 0.035 <0.001a
0.003 a 0.109 0.075
<0.001a 0.696 0.007a <0.001a
B [confidence limits]
Model 4 p
0.12 [0.04−0.22] -0.09 [-0.12-(-0.06)] -0.03 [-0.07−0.00] 0.09 [-0.01−0.19] 0.14 [0.06−0.23]
0.007a
0.01 [-0.20−0.22] 0.13 [0.02−0.25] 0.09 [-0.06−0.23] 0.10 [-0.03−0.18] Ref
0.926
0.01 [-0.01−0.07] 0.12 [0.01−0.23] 0.07 [-0.03−0.18] 0.09 [-0.03−0.22] 0.47 [0.40−0.55]
0.727
0.04 [0.03−0.04]
<0.001a
<0.001a 0.133 0.096 0.001a
0.024 0.266 0.093
0.037 0.171 0.119 <0.001a
B [confidence limits]
Model 5 p
0.12 [0.03−0.20] -0.06 [-0.10-(-0–03)] -0.01 [-0.04−0.03] 0.02 [-0.09−0.11] 0.15 [.0.6−0.23]
0.006 a
-0.05 [-0.25−0.15] 0.05 [-0.06−0.16] 0.03 [-0.11−0.18] 0.05 [-0.07−0.17] Ref
0.636
0.01 [-0.8−0.10] -0.07 [-0.18−0.03] 0.11 [0.01−0.21] 0.03 [-0.08−0.15] 0.33 [0.26−0.40]
0.747
0.03 [0.03−0.03]
<0.001a
0.002 a 0.792 0.685 <0.001a
0.349 0.640 0.412
0.539 0.045 0.576 <0.001a
B [confidence limits]
p
0.12 [0.03−0.20] -0.06 [-0.09-(-0.03)] 0.00 [-0.04−0.03] 0.00 [-0.10−0.10] 0.14 [0.05−0.22]
0.006
-0.08 [-0.29−0.12] 0.03 [-0.07−0.14] 0.03 [-0.18−0.17] 0.04 [-0.08−0.16] Ref
0.427
0.03 [-0.06−0.12] 0.08 [-0.18−0.02] 0.10 [0.02−0.21] 0.03 [-0.10−0.14] 0.33 [0.26−0.41]
0.981
0.02 [0.02−0.03]
<0.001a
0.004a 0.922 0.987 0.001a
0.524 0.676 0.482
0.130 0.052 0.925 <0.001a
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Variable
Model 1
Model 2 p
B [confidence limits]
p
Model 4
B [confidence limits]
Diabetes self-management in everyday life Low diabetes empowerment Unhealthy diet (days of week) Less frequently foot examination (days of week) Less frequently physical activity (days of week) HbA1c R2 Adjusted R2b F-test for significance of added variables
7.7% 7.2%
22.9% 22.3% <0.001
33.3% 32.8% <0.001
p
Model 5
B [confidence limits]
p
0.53 [0.46−0.60] 0.02 [0.02−0.03] 0.01 [0.00−0.03]
<0.001a
0.02 [0.00−0.04]
0.075
0.213 0.149
40.6% 40.0% <0.001
B [confidence limits]
p
0.52 [0.45−0.69] 0.01 [-0.03−0.02] 0.01 [0.00−0.03]
<0.001a
0.02 [0.01−0.03] 0.07 [0.05−0.10]
0.105
0.469 0.252
<0.001a
41.0% 40.4% <0.001
Note: All reported p-values are without correction for multiple testing. Statistically significant after revised criteria for significant p-values in accordance with the Holm procedure. b Penalises an increase in the number of variables. a
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Model 3
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Table 4 – (Continued)
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burden scores compared with differences in HbA1c. High emotional burden seems more strongly associated with lack of social support than with poor social network: the difference in emotional burden score was lower when comparing participants living without a partner vs. living with a partner, than when comparing participants with low vs. high social support. Furthermore, the association between living without a partner and high emotional burden was dependent on the association between living without a partner and generic quality of life. The association between living without a partner turned insignificant and the correlation coefficient was close to zero after inclusion of generic quality of life in the model. Of the social relation measures included in this study, only low diabetes-specific social support was significantly correlated with low emotional burden in the final model. Furthermore, diabetes-specific social support accounted for a larger difference in the emotional burden score throughout the regression modelling compared with other social relation measures. Thus, perceptions and functions of social relations are more strongly associated with emotional burden than is the structure of the social relations. This finding is supported by previous research in people with chronic illness [35–37]. To the best of our knowledge, no studies have looked at the influence of experiences of generic distress on diabetes distress, but previous studies have shown high diabetes distress to be associated with low quality of life. Furthermore, Fisher et al. distinguish between diabetes-related distress and emotional distress in general, where emotional distress in diabetes can be caused by diabetes-related stressors but also by distress unrelated to diabetes [38]. Our results show that low generic quality of life is associated with high emotional burden and generic quality of life explains a relatively large proportion of the variance in emotional burden of diabetes in the studied type-1 population, however, the results also highlight that experiencing emotional burden of diabetes is not equivalent to generic quality of life. Our study furthermore indicates that the association between generic social support and emotional burden is influenced by generic quality of life, as the association between low generic social support and high emotional burden was less strong (B value was halved) and insignificant after inclusion of generic quality of life. Diabetes management in everyday life contributed significantly to the explanation of the variance in emotional burden in the studied population. Differences in diabetes empowerment—the broader construct of diabetes management in everyday life—were associated with larger differences in emotional burden than was self-care activities. Furthermore, only low diabetes empowerment was significantly correlated with high emotional burden when included in the model with self-care activities. However, this may not only reflect that diabetes empowerment more broadly incorporates how people manage their disease [28], but also the specific self-care activities that were measured in the study. It would have been highly relevant to include other activities such as number of blood sugar measurements per day with individual recommendations in mind. Our study highlights that the explanatory power of HbA1c in emotional burden variance in this population to a large degree is explained by the other factors included in the study. HbA1c is, however, a relevant indicator of emotional burden, as it is significantly associated
with high emotional burden also after inclusion of the wide range of other relevant factors. Strengths of our study include the large population, use of validated scales and validation of the questionnaire, the high response rate, use of objective data from an electronic patient record in close temporal proximity to survey completion and the comparison of non-respondents and respondents on data from the electronic patient record [18]. Furthermore, we performed analyses to check the robustness of the results including all respondents and these analyses showed similar results. Limitations of our study included that a large proportion of the variance in emotional burden remained unexplained. The cross-sectional study design precludes inferring causal relationships. Other limitations include missing data for non-respondents on variables such as occupational status and educational level and limited measures of social relations. Future studies could benefit from including a broader range of social relation items, e.g. distinct measures of social support from family and friends. Men, young people, and people with short diabetes duration, no complications, or poor glycaemic control are underrepresented in the full study population. Furthermore, the study participants are not representative of the full study population, as men, younger people with short diabetes duration, no complications, or good glycaemic control are overrepresented. Despite these differences, we believe that the results provide new and valid insights into bio-psycho-social health of adults with type-1 diabetes in general. The initial response rate was high; the population studied was relatively large and varied in terms of age, diabetes duration, complications and HbA1c. However, caution should be exercised when generalising to populations with different characteristics than the one studied here. Especially, the results of the explanatory power of the factors of interests should be interpreted and generalised with the distribution of the explored variables in our population taken into account. Future research could aim to explore potential differences in bio-psycho-social associations in type-1 diabetes, e.g. if associations between social and psychological aspects are different in younger people compared with older, in men compared with women or in people with or without complications. Furthermore, research is needed to shed light on other relevant factors in relation to emotional burden in diabetes, e.g. by inclusion of a broader range of potential associated factors in future studies, e.g. more diverse perspective on social relations or other perspectives on life with type-1 diabetes such as fatigue or work life. Exploring causal relations are also needed, e.g. to what extent social relations effect distress levels when explored in a longitudinal design. Knowledge of causal relationships can guide the development of appropriate interventions. For example, if enhancing diabetes-specific social support decreases the emotional burden of diabetes. An appropriate intervention might be in the format of peer support or family interventions. This study highlights that a variety of factors are associated with emotional burden in diabetes. This perspective is relevant for future research as well as clinical practice. It is in line with conclusions of Fisher et al. who argue that the range of approaches to decrease diabetes distress needs to expand according to the wide range of different causes of emotional distress [38].
Please cite this article in press as: L.E. Joensen, et al., Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes, Prim. Care Diab. (2015), http://dx.doi.org/10.1016/j.pcd.2015.06.007
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Conflict of interest L.J. and I.W. are employed by Steno Diabetes Center A/S, a research hospital working in the Danish National Health Service and owned by Novo Nordisk A/S. Steno Diabetes Center receives part of its core funding from unrestricted grants from the Novo Foundation and Novo Nordisk A/S.
Acknowledgements The authors acknowledge Karen Rytter, Diabetes Specialist Nurse at Steno Patient Care Clinic, for the help with data collection, Ina Tapager, Incentive, for statistical guidance and Jennifer Green, Caduceus Strategies, for editorial assistance.
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