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Accepted Manuscript Type 1 diabetes, quality of life, occupational status and education level a comparative population-based study Helena B. Nielsen, Louise L. Ovesen, Laust H. Mortensen, Cathrine J. Lau,
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Accepted Manuscript Type 1 diabetes, quality of life, occupational status and education level a comparative population-based study Helena B. Nielsen, Louise L. Ovesen, Laust H. Mortensen, Cathrine J. Lau, Lene E. Joensen PII: S (16) DOI: Reference: DIAB 6737 To appear in: Diabetes Research and Clinical Practice Received Date: 17 April 2016 Revised Date: 17 August 2016 Accepted Date: 31 August 2016 Please cite this article as: H.B. Nielsen, L.L. Ovesen, L.H. Mortensen, C.J. Lau, L.E. Joensen, Type 1 diabetes, quality of life, occupational status and education level a comparative population-based study, Diabetes Research and Clinical Practice (2016), doi: This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Type 1 diabetes, quality of life, occupational status and education level a comparative populationbased study Helena B. Nielsen, a,b Louise L. Ovesen, a,b Laust, H. Mortensen, c,d Cathrine J. Lau, e Lene E. Joensen a * a Steno Diabetes Center, Gentofte, Denmark b University of Copenhagen, Copenhagen, Denmark c Section of Social Medicine, University of Copenhagen, Copenhagen, Denmark d Analysis and Methods, Statistics Denmark, Copenhagen, Denmark e Research Centre for Prevention and Health, Capital Region of Denmark, Glostrup, Denmark * Corresponding author: Lene E. Joensen, Steno Diabetes Center, Gentofte, Denmark, telephone: Sources of support None 1 ABSTRACT Aim: Type 1 diabetes requires extensive self-management to avoid complications and may have negative effects on the everyday life of people with the disease. The aim of this study was to compare adults with type 1 diabetes to the general population in terms of health-related quality of life, occupational status (level of employment, working hours and sick leave) and education level. Methods: 2,415 adults (aged years) with type 1 diabetes were compared to 48,511 adults (aged years) from the general population. Data were obtained from two cross-sectional surveys conducted in 2010 and 2011 of adults living or treated in the Capital Region in Denmark. Differences between adults with type 1 diabetes and the general population were standardised for age and sex and analysed using linear probability models and negative binomial regression. Differences were further analysed in subgroups. Results: Compared to the general population, adults with type 1 diabetes experienced lower healthrelated quality of life, were more frequently unemployed, had more sick leave per year and were slightly better educated. Differences in health-related quality of life and employment increased with age and were larger among women, as compared to men. No significant differences were found with regard to working hours. Conclusion: Our findings suggest that type 1 diabetes is associated with lower health-related quality of life, higher unemployment and additional sick leave. The negative association with type 1 diabetes is more pronounced in women and older adults. Keywords: type 1 diabetes mellitus, health-related quality of life, occupational status, education level. 2 1 INTRODUCTION Type 1 diabetes requires extensive daily self-management, including measuring blood glucose several times a day, injecting insulin and eating a healthy diet (1). Successful selfmanagement is critical in achieving a normal blood glucose level and preventing or delaying shortand long-term diabetes complications (1). The extensive self-management and the risk of severe complications are likely to have negative effects on the everyday life of people with type 1 diabetes and affect their health-related quality of life, occupational status and level of education. Knowledge about the effect of type 1 diabetes on quality of life, occupational status and education level is limited, and many previous studies are based on data collected before 2005 (2-11). Furthermore, only few previous studies have examined people over the age of 60 (5,12), and several studies do not clearly distinguish between type 1 and type 2 diabetes (2,3,5,6,8 9,11 13) or include only a small number of participants (2 4, 6,9,10,14). Previous studies on health-related quality of life are inconclusive about whether adults with type 1 diabetes experience a similar or a lower level of health-related quality of life in different dimensions, as compared to the general population (5,8 10,12 14). The findings of previous studies are also inconsistent in terms of differences in occupational status (2 7,11,15,16) and education level (2 7,9,11,15,16). To the best of our knowledge, only one previous study has investigated all three variables of interest here: quality of life, occupational status and education level (5). The aim of this study was to examine how adults with type 1 diabetes differ from the general population in terms of health-related quality of life, occupational status and education level. 3 2. MATERIAL AND METHODS 2.1 Design and population Data from two cross-sectional surveys were compared. One health survey of the general population called The Danish Capital Region Health Survey as part of the Danish National Health Survey (named How are you? ) and a survey conducted at Steno Diabetes Center. Steno Diabetes Center is a specialist diabetes clinic located in the Capital Region of Denmark, and is part of the Danish healthcare system (17). Steno Diabetes Center provides treatment for the greater majority of people with type 1 diabetes in the capital region, and more than 3,500 people diagnosed with type 1 diabetes are in treatment at Steno Diabetes Center (18). People with type 1 diabetes that receive care at Steno Diabetes Center are representative of the general Danish population of people with type 1 diabetes with regards to age and glycemic control and there are only small differences with regards to diabetes duration and gender distribution (19). Respondents to both surveys comprised adults affiliated with the Capital Region of Denmark, and both surveys included questions with identical wording. We included all adults ( 18 years old) from both surveys in this study. In February 2010, an invitation to complete the regional health survey How are you? was mailed to a random sample of the Danish population in the Capital Region obtained from the Central Persons Register (20). The survey could be answered by mail or online and had a response rate of 52% (20). A total of 48,511 adults from the general population between years old was included in this study. In October 2011, Steno Diabetes Center conducted a cross-sectional survey that was sent by mail to all adults with type 1 diabetes affiliated with Steno Diabetes Center (18). 2,415 adults between years old with type 1 diabetes participated in the survey, which corresponds to a response rate of 67% (18). The execution of the survey is described in detail elsewhere (18). Thirteen percent of the 4 participants from Steno Diabetes Center did not live in the Capital Region and differed slightly from those residing in the Capital Region by being older and having a lower employment rate. All participants were included in the analysis. However, a sensitivity analysis was conducted to assess the impact of including individuals not living in the Capital Region. A small number of participants (116 people) completed both surveys. Since the overlap was relatively small, we did not exclude these individuals from our analysis. However, we performed a sensitivity analysis to examine if the inclusion impacted on our results. 2.2 Measured variables Data on age, sex, diabetes duration and complications were obtained from the electronic patient record for the type 1 diabetes population (18) and from national registers for the general population (20). Type 1 diabetes was identified based on diagnosis by physicians (ICD-10 classification system). Information on diabetes complications and diabetes duration was obtained from. Health-related quality of life was assessed using the generic instrument SF-12, which contains 12 questions on self-reported physical and mental health in eight domains (physical functioning, role-physical, bodily pain, general health, vitality, social functioning, role-emotional and mental health); scores for each domain ranged from 0 (worst possible health) to 100 (best possible health) (21). We studied each domain separately. Level of employment was measured by a single question on professional position, and all responses were grouped into one of four categories: employed, unemployed, student and retired. Only adults categorised as employed or unemployed, the focus of this study, were included in the analysis of employment. Working hours was measured by selfreported number of hours at work per week. We restricted the analysis to people who had reported that they were employed and divided the responses into part-time ( 37 hours/week) and full time ( 37 hours/week), in accordance with employment regulations in Denmark. Sick leave, expressed as number of days per year, was also limited to people who had reported they were 5 employed. Education level was obtained by combining two questions on level of school completed and additional education. In the analysis, we categorised responses as primary education, secondary education and higher education. 2.3 Statistical analysis Linear regression models were used to calculate differences between adults with type 1 diabetes and the general population in absolute risk (mean difference [MD] and risk difference [RD]) with regard to health-related quality of life, occupational status and level of education. We used negative binomial regression to measure the differences in incidence rate ratio (IRR) of sick leave per year. Analyses were standardised for sex and age in five-year intervals, using the distribution in the general population. Furthermore, we tested for interactions by sex and age and analysed differences between adults with type 1 diabetes and the general population in age subgroups (18-29, 30-39, 40-49, and 60) and in males and females. 6 3. RESULTS Compared with the general population, the population of individuals with type 1 diabetes consisted of more males and more individuals over the age of 40 years and fewer people living with a partner or with children living at home (Table 1). In the type 1 diabetes population the median diabetes duration was 26 years (5-percentile of 4 years and a 95-percentile of 52 years). Sixty-two percent of the type 1 diabetes population experienced diabetes complications. 3.1 Health-related quality of life Adults with type 1 diabetes scored significantly lower, on average, in all dimensions of health-related quality of life, compared to the general population (Table 2). The differences remained significant after adjusting for sex and age. The largest difference between the two populations was found in the role-physical dimension (MD -7.5; 95% CI: -8.6, -6.5), while the smallest differences occurred in the dimensions of bodily pain (MD -3.5; 95% CI: -4.6, -2.4) and social functioning (MD -3.4; 95% CI: -4.4, -2.5). We found interactions with sex in all healthrelated dimensions except vitality, which implied that the difference between adults with type 1 diabetes and in the general population depended on sex. In the sex-stratified analysis, significantly larger differences were found in health-related quality of life between woman with type 1 diabetes and in the general population than between men in the two populations (Table 3). Further analysis showed interactions with age groups and increasing differences with increasing age between adults with type 1 diabetes and the general population in five dimensions: physical functioning, rolephysical, bodily pain, general health and role-emotional (Table 4). 3.2 Occupational status The two populations included equal proportions of retired (p = 0.112) and almost equal shares of students (p = 0.031). Adults with type 1 diabetes were less likely to be employed, 7 compared to the general population, in the unadjusted analysis and after adjustment for sex and age differences in the populations. Differences in employment between adults with type 1 diabetes and the general population depended on sex (p = 0.002) (Table 3) and age (p = 0.049) (Table 4). In particular, women and people aged 50 years and older with type 1 diabetes were less frequently employed than the same groups in the general population (Table 3 and Table 4). In terms of working hours per week, no significant differences were found between the populations and no interactions were observed with sex (p = 0.06) (Table 3) or age (p = 0.83) (Table 4). However, adults with type 1 diabetes had 12% more sick leave per year compared to the general population, when adjusted for sex and age (Table 2). The subgroup analysis indicated no differences in sick leave within sex (p = 0.98) and age (p = 0.33) groups. 3.3 Education level In terms of level of education, our results suggest that adults with type 1 diabetes were better educated than the general population (Table 2). When adjusted for sex and age, more adults with type 1 diabetes had a secondary (RD 3.8; 95%CI: 1.6, 5.9) or higher education (RD 4.1; 95%CI: 1.8, 6.4), compared to the general population. Further analyses of subgroups showed no significant differences in terms of education level within sex and age groups (Table 3 and Table 4). However, educational differences were more pronounced in women (Table 3). When stratified by age, younger adults (18-29 years old) with type 1 diabetes had more often a secondary education, compared to the general population (RD 7.3; 95%CI:1.7, 12;9), and more adults aged 60 with type 1 diabetes had a higher education, compared to adults in the same age group in the general population (RD 7.2; 95%CI: 2.8, 11.5) (Table 4). Sensitivity analyses indicated that neither excluding individuals in the general population living outside of the Capital Region nor including participants who completed both surveys affected the findings significantly (data not shown). 8 4. DISCUSSION Our findings suggest that adults with type 1 diabetes have lower health-related quality of life, lower levels of employment, more sick leave per year and a higher education level, as compared to the general population. Differences in health-related quality of life and employment increased with age and were greater for women than for men, although no differences were found in the proportion of men or women with full-time employment. All differences were relatively small. Our findings confirm previous studies, which found that adults with type 1 diabetes rate their health lower in at least one dimension, compared to the general population (5,8,9,12 14). However, some of the previous studies also suggested no differences between adults with type 1 diabetes and the general population in certain dimensions (5,8,10,13,14). Hart et al. (2005) showed that health-related quality of life decreased over time among patients with type 1 diabetes (22). Furthermore, health-related quality of life is associated with the presence of complications (23,24). Future studies on differences in self-rated health between adults with type 1 diabetes and the general population may benefit from including comorbidities as well as severity and type of diabetes complications as explanatory factors. Diabetes duration and consequent complications might help explain our findings of lower health-related quality of life among elderly with type 1 diabetes. Previous studies have shown that in general women have lower self-rated health compared to men (25,26). In line with these studies, our results show that type 1 diabetes might affect women s quality of life even more than men s. Our findings of larger differences between women with type 1 diabetes and in the general population compared to differences among men might be related to other previous findings, that complications and distress are more prevalent among women than men with type 1 diabetes (24, 27). Moreover, previous research has shown that men with 9 diabetes experienced a higher treatment satisfaction and a lower diabetes burden compared to women with diabetes (24). Previous studies of occupational differences between adults with type 1 diabetes and the general population are sparse and inconsistent. Our results are generally in line with the most recent studies among large populations and European samples (7,15,16). These studies suggest that the employment rate of adults with type 1 diabetes is lower than the employment rate of the general population (15,16). However, previous studies concerning sick leave and working hours are ambiguous (3,5,6,11,16). In relation to sick leave, medical check-ups and complications may cause additional sick leave for adults with type 1 diabetes. Qualitative studies have suggested that the integration of self-management in work life can be difficult (28,29) and might result in refraining from work or downscaling working hours (28). We found no differences in working hours but a lower employment rate among adults with type 1 diabetes. This might suggest that only the healthiest adults with type 1 diabetes are employed. The lower employment rate among women and adults aged 50 years and older with type 1 diabetes may be explained by increased diabetes distress in women (24) and complications in elderly. Diabetes distress and complications might obstruct one s ability to carry out a normal job and lead to unemployment. Furthermore, previous research has shown, that men miss less work as a result of their diabetes, than women (24), which also supports our findings. Previous studies on education level are inconsistent. Two recent Swedish studies found that adults with type 1 diabetes have a lower education level compared to the general population (15,16). However, other studies have suggested no differences between adults with type 1 diabetes and the general population (2 6,11). We found no confirmation of our findings in recent literature; in fact, our results suggest the opposite of the findings from Sweden. Moreover, differences between adults with type 1 diabetes and the general population are relatively small in 10 our study. A review of type 1 diabetes and school attendance found that children with type 1 diabetes missed more school days and had slightly lower school achievements than their peers (30). However, most of the reviewed studies were conducted decades ago, and advances in diabetes care might have led to better glycaemic control and, hence, educational progress. This may explain the inconsistent previous results and suggest no differences in education level between adults with type 1 diabetes and the general population. Further research on education level and adults with type 1 diabetes is needed. A strength of this study is the relatively large study population compared to previous studies, containing 2,415 adults with type 1 diabetes and 48,511 adults from the general population. Moreover, the diagnostic criteria for type 1 diabetes ensure an accurate case population, in contrast to the case populations in some previous studies which might have inadvertently included adults with type 2 diabetes. Furthermore, our study has a wide age range ( years old), and approximately one third of the study population is over the age of 60, an age group that only a few previous studies have investigated. Moreover, participants with and without type 1 diabetes came from the same geographic area and answered identical questions within a relatively short time period. This increases the validity of the comp
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