Abstract
Little is known about mental load in people with diabetes and associations with demographic, clinical, and treatment characteristics, such as the use of diabetes technologies. To explore perceived mental load, 503 adults with diabetes answered the one-item survey “How much time (in minutes) would you spontaneously estimate that you spend each day thinking about your diabetes?” Mental load estimations varied widely within the sample and between subgroups. Perceived mental load was higher in type 1 diabetes than in type 2 diabetes, higher in women than in men and increased with treatment intensity (ie, insulin therapy, technology use) and the number of mental disorders. Further research may explore associations with diabetes-related distress and determine whether (perceived) mental load has relevance in technology use.
Background
Self-managing diabetes is a 24/7 task. People with diabetes need to perform multiple self-management activities each day, consider the potential impact on glucose levels, and plan their daily lives accordingly. 1 Diabetes technologies are designed to improve diabetes self-management and are even expected to reduce the “mental load” of self-managing a chronic disease.2-5 The mental load associated with diabetes management has been referred to as the cognitive burden that people experience while managing their condition, ie, monitoring glucose levels, administering insulin, taking medications, planning meals, finding time to be physically active, and so on. 5 Theoretically, diabetes mental load is thought to be distinct from the actual time spent on diabetes self-management and diabetes-related distress. 5 However, it is assumed that a high mental load associated with diabetes self-management, along with insufficient resources (eg, resilience, coping strategies), can result in experiencing diabetes-related distress, anxiety, and depression. 5
There is a paucity of data on the (perceived) diabetes mental load, which likely reflects an experience of time burden. Understanding the impact of demographic, clinical, and treatment characteristics, such as technology use, on the cognitive burden of diabetes management is therefore relevant. We aimed to preliminary quantify the perceived daily diabetes mental load and explore any associations with new technologies and mental comorbidities.
To estimate mental load, adults with type 1 or type 2 diabetes were asked to answer the question “How much time (in minutes) would you spontaneously estimate that you spend each day actively thinking about your diabetes?” by entering a number between 0 and 1440 minutes per day (equivalent to 0-24 hours). Participants were recruited from the German online panel dia·link (dialink-diabetes.de), a free diabetes research platform. People with diabetes, their family members, and caregivers (age ≥ 18 years) can register with dia·link and voluntarily participate in online studies. dia·link members do not receive financial compensation for their participation but have access to survey results and receive a monthly newsletter. The panel has received a positive ethics vote from the German Psychological Society (ID: HermannsNorbert2020-12-18VA). An e-mail invitation was sent to 908 dia·link members with type 1 or type 2 diabetes who could access the one-item survey between October 13 and 31, 2022.
The following demographic and clinical characteristics from the dia·link core data were used (obtained at registration): sex, age, diabetes type, diabetes duration, diabetes therapy, technology use, self-reported (late) complications (retinopathy, cardiac disease, stroke, nephropathy, neuropathy, diabetic foot ulcerations, hypertension, dyslipidemia), and self-reported mental health diagnosis made by physician or therapist (depression, anxiety, eating disorders).
Univariate comparisons between median time estimates by demographic, clinical, and treatment characteristics were performed using nonparametric Kruskal-Wallis tests. Multivariate analysis was performed using robust regression on mental load, with age, sex, diabetes therapy (ie, no insulin, conventional insulin therapy [CT; mainly basal-supported oral therapy], multiple daily insulin injections [MDI], continuous subcutaneous insulin infusion [CSII] use, automated insulin delivery [AID] use), number of (late) complications, and number of mental disorders as predictors.
Perceived Diabetes Mental Load
The survey was accessed by 582 (64.1%) of the invited dia·link members and answered by 503 participants (55.4% response rate). The mean age was 55.9 (standard deviation [SD] = 13.8, range = 20-86) years, 45.5% were women, and 75.1% had type 1 diabetes. Most participants were taking insulin (91.8%) and using continuous glucose monitoring (CGM) (85.3%), with 17.3% using AID. Table 1 shows demographic and clinical details.
Demographics and Clinical Characteristics.
Data reported as n (%) unless otherwise indicated.
Abbreviations: AID, automated insulin delivery; CGM, continuous glucose monitoring; CSII, continuous subcutaneous insulin infusion; CT, conventional insulin therapy; MDI, multiple daily injection; SD, standard deviation.
Overall, participants estimated that they spend a mean of 77.1 minutes (SD = 115.1, median = 45.0, 25th percentile = 20.0, 75th percentile = 90.0) per day thinking about their diabetes. The estimations varied widely within the sample and subgroups.
Univariate comparisons are presented in Figures 1 and 2. Continuous glucose monitoring users estimated a higher mental load than non-CGM users (median = 45 vs 30 minutes, P = .004, η2 = 0.018; Figure 1). Interestingly, AID users estimated significantly more minutes per day compared with MDI (P = .008, η2 = 0.026), CT (P < .001, η2 = 0.122) and no insulin (P < .001, η2 = 0.167), but their perceived mental load did not differ from CSII users (P = .771, Figure 1). Univariate analysis also showed that women estimated to spend significantly more minutes per day thinking about their diabetes than men (median = 60 vs 30 minutes, P < .001, η2 = 0.097; Figure 2). Daily perceived diabetes mental load was markedly higher in type 1 diabetes vs type 2 diabetes (median = 60 vs 25 minutes, P < .001, η2 = 0.078; Figure 2). Participants with one or more mental health disorders estimated to spend more minutes per day thinking about their diabetes than those without (median = 60 vs 37.5 minutes, P = .018, η2 = 0.011; Figure 2). People with depression (median = 60 vs 40 minutes, P = .018, η2 = 0.011) or anxiety (median = 60 vs 40 minutes, P = .049, η2 = 0.008) reported a significantly higher mental load than those without the respective disorder, whereas people with an eating disorder showed a marginally significant higher perceived mental load (median = 60 vs 40, P = 0.056). Mental load estimations did not differ based on having (late) complications.
Mental load in minutes by CGM use, insulin regimen, and delivery method.
Mental load in minutes by sex, diabetes type, presence of (late) complications, and mental disorder(s).
Multivariate analyses corroborated that perceived mental load was higher in women than in men and grew with therapy intensity (Table 2): compared with no insulin, perceived mental load increased by 18.6 minutes with MDI, by 26.9 minutes with CSII, and by 27.2 minutes with AID. An additional mental disorder increased perceived mental load by 6.8 minutes. The number of (late) complications reduced perceived mental load, but the predictor was not significant.
Demographic, Therapy, and Clinical Characteristics Associated With Mental Load.
Dependent variable = mental load.
Abbreviations: SE, standard error; df, degree of freedom; AID, automated insulin delivery; CSII, continuous subcutaneous insulin infusion; CT, conventional insulin therapy; MDI, multiple daily injection.
Discussion and Conclusions
We sought to approximate the perceived mental load of living with diabetes. The mental load estimates varied widely and differed between the subgroups in our sample. Perceived mental load, that likely reflects the an experience of time burden, was higher in type 1 diabetes than in type 2 diabetes, higher in women than in men, and increased with treatment intensity (ie, insulin therapy, technology use) and the number of mental disorders.
Although research on mental load in people with diabetes is scarce, we found one other study that examined the estimated amount of time people spend thinking about their diabetes: Messer et al 6 found that adolescents and young adults aged 14-26 years with type 1 diabetes estimated that they spent a median of 30 minutes per day thinking about their diabetes. This lower estimate could be due to the younger age (shared responsibilities with parents) and the high frequency of mental disorders (23.7%) reported in our sample.
Other studies have focused solely on the amount of time people with diabetes spent on self-management activities, but not perceived mental load. In studies by Kamble et al 7 in people with type 1 diabetes and Icks et al 8 in people with type 2 diabetes, time spent on diabetes self-care activities increased with intensification of diabetes therapy, including the use of technologies. Kamble et al 7 found that participants using sensor-augmented pump therapy reported spending an additional hour per week on self-management compared with participants using MDI, an average of 4.4 vs 3.4 hours per week. Icks et al 8 reported that people taking insulin and antihyperglycemic drugs spent substantially more minutes per week on self-management than those without, a mean of 269 vs 66 minutes per week. Assuming a connection between perceived mental load estimates and time spent with self-management activities, these differences might be reflected in an increase of perceived mental load with diabetes regimen intensification (Figure 1) in our study: people using AID spent more minutes per day thinking about their diabetes than those using MDI, CT, or no insulin (small to medium effects). However, mental load was the same for AID and CSII users. Automated insulin delivery systems are expected to reduce the mental load of diabetes management.2-5 Our results suggest that people using AID spend more time per day thinking about their diabetes than those using MDI and CT and that there is no reduction in perceived mental load compared with CSII. Importantly, our survey asked neutrally about the estimated time without any inclusion of measures for (negative) affect or diabetes-related distress. Thus, AID may be able to reduce worry and diabetes-related distress, while the actual time spent thinking about diabetes, ie, overall time burden, may remain the same. It is also plausible, of course, that the use of new technologies that may require more user engagement may be associated with a higher (perceived) mental load, but that their use may still have a positive effect on diabetes self-management by further improving glucose results and reducing diabetes-related distress or fear of hypoglycemia.
Continuous glucose monitoring users reported a higher perceived mental load than nonusers, but the difference was a small effect. Although there is an overlap with the intensity of diabetes treatment (ie, people taking insulin are more likely to use CGM), the higher perceived mental load may also be due to the plethora of information and CGM alarms, an association also observed by Messer et al 6 who found a relationship between mental load and the percentage of hyperglycemia alarms their participants responded to.
Women reported higher diabetes mental load than men. Female sex has been shown to be associated with diabetes-related distress and worry.9-11 Assuming that diabetes-related distress and worry also increase the perceived amount of time people estimate to spend actively thinking about their diabetes, this may explain the effect of sex in our sample.
Participants with depression, anxiety, and/or an eating disorder perceived a higher mental load that those without a mental health diagnosis. Diabetes-related worries such as fear of hypoglycemia, feelings of guilt and shame, and less effective self-management are common in people with diabetes and depression and/or anxiety,11-14 may increasing the perceived burden, including mental occupation. Disordered eating in diabetes can manifest as body dissatisfaction, fear of weight gain, insulin omission, and restricted or disinhibited eating, and is associated with adverse acute and long-term diabetes outcomes and reduced quality of life. 15 These symptoms may lead to higher perceived mental occupation with diabetes and its management, as the trend in our data suggests.
Several limitations must be considered. The time estimates are derived from a one-time, single-item survey and are likely to be influenced by participants’ current well-being as well as by recall bias. Self-selection bias among the online research platform members is likely, and the sample is not representative of the population of people with type 1 and type 2 diabetes, particularly with regard to the high percentage of insulin use among participants with type 2 diabetes and the high percentage of technology use in the total sample. In Germany, a key criterion for CSII and AID eligibility for coverage by health insurance is the inability to achieve adequate glycemic control with MDI. These participants could be more susceptible to diabetes-related distress and thus may overestimate mental load. In addition, all clinical information was self-reported. Finally, the survey does not allow for differentiation of different (positive and negative) feelings and distress. Taken together, the results should be read in an exploratory manner.
Our results may provide a rough estimate of the perceived amount of time people spend thinking about their diabetes each day and how perceived mental load is associated with demographic, clinical, and treatment characteristics. Further research could explore the potential role of (perceived) mental load in the use of new diabetes technologies by examining how mental load relates to distress and the actual time spent on self-management tasks. If diabetes mental load is found to be relevant, it would be worth exploring the extent to which people with diabetes find it acceptable to trade off higher mental load for better glycemic outcomes and changes in diabetes-related distress.
Footnotes
Acknowledgements
The authors thank the dia·link members who took part in our survey.
Abbreviations
AID, automated insulin delivery; CGM, continuous glucose monitoring; CSII, continuous subcutaneous insulin infusion; CT, conventional insulin therapy; MDI, multiple daily injections
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
