Prevalence and predictors of diabetes-related distress in adults with type 1 diabetes | Scientific Reports – Nature.com

We found that more than one-third of our study sample suffered from substantial diabetes-related distress. Previous studies showed that elevated diabetes-related distress affects 2030% of people with T1DM, with the range difference recorded in prevalence across different populations and healthcare systems from 8 to 65%5. Our results are concordant with the study in the USA which reported prevalence of diabetes-related distress in T1DM of 42.1%20. The same study showed that, among those with elevated diabetes-related distress at baseline, 71% report similarly high levels at nine month follow-up. Interestingly, we found that the duration of the disease did not predict diabetes-related distress. Several explanations are possible. For example, the source of distress could have changed over time, as in the example where duration is strongly associated with both complications and hypoglycemia risk. Alternatively, it may indicate that adaptation to distress in persons with T1DM is not a matter of time, as a passive process, but that it requires the person to actively cope with the illness and accept the changes in life that are associated with the occurrence of DM. For example, to accept their own fears of the complications instead of denying it and not adhering to the diet, new healthy lifestyle etc. This may indirectly indicate that a psychosocial intervention may be needed to help the person cope with diabetes-related distress. This may be especially important for those with prolonged distress, as it can predispose to problematic self-care behavior7. Indeed, severe diabetes-related distress increases the chances of poor treatment outcomes and the risk of diabetes-related complications21. Of course, other factors such as general coping abilities and life circumstances (for example poor socioeconomic status) not assessed in this study that relate to diabetes distress may explain these results.

The mean PAID total score in our study was 31.92 (21.14)and is comparable to the results of SAGE study22.

The results of our study indicate that the presence of elevated HbA1c levels is a significant predictor of diabetes distress. This is concordant with the results of the T1 Exchange Clinic Registry in which HbA1c was one of the strongest predictors significantly associated with diabetes-related stress when adjusting for all other variables15.

It is possible that uncontrolled diabetes, defined by high HbA1c levels, elevates the distress in patients, as patients may be worried about the consequences of diabetes and the lack of success in the treatment, especially over a course of time. However, it is also possible that other features, such as anxiety or overwhelming distress in life, may confer to both the increase of stress related to diabetes and to elevated levels of HbA1c.

Concordant with our finding which indicates that the presence of elevated HbA1c levels is a significant predictor for diabetes distress, we also found that the presence of microvascular complications is also a significant predictor. First, we may assume that those with higher levels of HbA1c will also have a higher probability to develop microvascular complications23, indicating that (psychological) factors contributing to elevated HbA1c may result in contributing to microvascular complications over time. Secondly, it is also possible that acquiring microvascular complications lead to impairment of organ functioning that the patient feels through loss or impaired functioning or limitation in everyday life, and thus the fear of disease and potential impact on ability in the future as well distress increase. No other significant predictors for higher diabetes-related distress among sociodemographic and disease characteristics were found. While associations between diabetes-related distress and gender, decreased age, and diabetes duration were demonstrated elsewhere15, our study findings yield no difference in the level of diabetes-related distress among genders and age groups. A possible explanation could be the higher mean age of our study sample which was 48.11 (15.53) vs 37.64 (16.33) in T1 Exchange Clinic Registry. The second possibility is the different method of calculation, which in our study was binary logistic regression with the main variable being categorized as either above cut-off score or below, while the mentioned study used the original continuous PAID score variable. Interestingly, most of our study participants were worried about complications, (e.g., neuropathy, retinopathy, and nephropathy) and hypoglycemia, which are described as the most prevalent diabetes-specific fears in people with diabetes24, so intervention in patient education is justified.

In our study we found that some individual items in the PAID questionnaire were highly scored by majority of studied population, pointing to moderate or severe distress regarding a particular topic25. Worrying about the future and chronic complications and feeling guilty when off-track with diabetes management were the most prominent concerns, and these findings are comparable with the results of a previous study of diabetes-related distress made in Croatian population with both type 1 and type 2 diabetes participants26. Interestingly, feeling guilty when off-track with management was the most prominent description of feelings associated with distress, followed by feeling burnt-out by the constant effort needed to manage diabetes and feeling scared and depressed when thinking about living with diabetes, coping with complications and blood sugar levels, which may indicate the formation of the vicious cycle in which the patients with DM are caught in, by trying and failing to control their illness and future of it27. For example, their constant worrying about the complication of diabetes due to non-optimal glycemia levels and the negative predictions about the future of their illness increasing their level of fear/anxiety may result in the patients feeling burnt by the constant effort needed to manage diabetes (to control their illness glycemia levels) leading to increased depression and fear due to living with diabetes, which then increases the negative perceptions of the future forming the vicious cycle28. Alternatively, constant worrying about the complications and negative predictions about the future of their illness, fear and depression may also lead to denial of the potential effects of chronic diabetes mellitus, which results in them failing to adhere to diet/medication and leading to non-optimal glycemia and ultimately increasing the possibility of complications of DM, followed by feelings of guilt when off-track with diabetes management29. This will again increase their worrying about complications closing the vicious cycle. The way how diabetes-related distress manifests in the two different populations may be contextually different due to differences in age, predisposing conditions, treatment outcomes, and type of treatment. Our findings on commonly perceived distress items solely in T1DM population could be a signal to the clinicians on what to address in clinical consultation.

The importance of psychosocial care and a call for improved psychosocial outcomes are recognized by the American Diabetes Association which issued recommendations to integrate psychosocial care within patient-centered medical care, stressing that such care should be provided to all diabetic patients30. Furthermore, the recent Consensus Report on the management of T1DM acknowledged ongoing psychosocial support as a relevant component of T1DM management, as treatment outcomes are highly dependent on a persons ongoing self-care behavior9. Notably, our findings suggest that social support availability is perceived as highly relevant by our study participants as more than 80% of participants reported scores<3 to the associated item 18. Thus, psychosocial support could be a protective factor from diabetes related distress and perceived problems with self-management in adults with diabetes31. Screening and monitoring for psychosocial problems using patient-appropriate standardized and validated tools are recommended at the initial visit, and periodically thereafter if glycemic targets are not met and/or at the onset of diabetes complications. While the treatment of psychological aspects related to T1DM may be as important as the medical management in improving living with diabetes32, the method of delivering it is still unclear33.

The screening should be used to detect the overall levels of diabetes-related distress, at the very beginning of the treatment. Depending on the PAID scores, several interventions should be offered, in addition to the standard treatment, including education. For those with low to moderate levels of diabetes-related distress, education should be provided in an empathic form by the health care team treating diabetes, seeing as 67% of participants expressed satisfaction with their diabetes physician. For highly distressed adults with T1DM, having poor glycemic control, diabetes-related distress can be successfully addressed using both educational and emotion-focused approaches34. In addition, psychological or psychiatric liaison consultations should be available.

Considerable strengths of the study are the inclusion of a representative sample of T1DM patients treated at secondary and tertiary centers in Croatia and the usage of standardized, diabetes-specific measure that allows for replication of the study findings. Our results made solely in T1DM patients give greater clarity of understanding this condition in specific patients. Lastly, according to our knowledge, this is the first study of this kind in Croatia.

Limitations of this study include a cross-sectional design which implies interpretation and clinical recommendations should be made with caution. The sample size is likely too small to confirm the lack of association among many of the variables. Other comorbidities or life events that could influence distress levels were not assessed and evaluated in this study.

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Prevalence and predictors of diabetes-related distress in adults with type 1 diabetes | Scientific Reports - Nature.com