OPEN Research Support

Steffan Holst Hansen
Research Unit of General Practice

Projekt styring
Projekt status    Open
Data indsamlingsdatoer
Start 02.05.2022  
Slut 31.12.2024  

Can diabetes distress be reduced by improving entry to care for people with type 2 diabetes mellitus?: A cluster randomized trial

Short summary

In Denmark, general practice is the primary healthcare provider for most patients with type 2 diabetes mellitus. Cross-sectoral collaboration is often reported inadequate by the patients, thus, leading to a lower perceived quality of care and increase the risk of the development of severe levels of diabetes distress. Therefore, this study aims to strengthen the cross-sectoral collaboration between sectors, thus lowering diabetes distress levels among patients.


People diagnosed with T2DM often face numerous challenges regarding emotional reactions to the diagnosis, acquiring new knowledge to better comprehend, manage, and accept a life with a chronic disease. Patients are faced with immense changes such as disease management, altering of diet, fear of complication, and potentially disrupted relationships with family and friends. A qualitative study that included Danish T2DM patients described that several activities shortly after diagnosis were important elements to include when entering a life with T2DM and that these provided patients with a feeling of satisfaction with the trajectory. Whereas, unsatisfactory trajectories were characterised by a lack of appointments and information, absence of referral to patient education programs, and those patients felt isolated and alone with their disease.

In Denmark, the general practitioner is the primary health care provider for most patients with T2DM. However, patients have continuous contact with different healthcare providers across the different healthcare sectors, which highlights the importance of a functioning cross-sectoral collaboration and coordination. The current care management recommendations for patients recently diagnosed with T2DM are defined in the clinical guidelines for the treatment of T2DM and the cross-sectoral disease management program for T2DM in the Southern Region of Denmark. The latter suggests that about three appointments with the GP are adequate to provide the patient with initial information about the disease, disease management, and treatment. Moreover, patients are recommended to be referred for health-education programs, lifestyle interventions, and complication screenings.

A Danish diabetes survey from 2019 reported, that a large proportion of patients wanted to, but had not been referred to relevant patient education programs and lifestyle interventions in the municipalities within the last five years, thus exacerbating the unsatisfactory trajectories. Moreover, a recent qualitative study, reported a lack of continuity of care with patients requesting an increased involvement within the treatment, needing a more patient-centered approach. Consequently, if those needs are not met, psychological or psychosocial complications might develop within the patients. In fact, diabetes distress (DD) is the most prevalent complication in T2DM patients with 36% of people with diabetes reporting high levels of DD. DD refers directly to the negative emotional experiences resulting from receiving the disease and the challenges of living with diabetes and is anchored with day-to-day activities. Thus, diabetes-related distress is defined as the: emotional burden and worry; interpersonal issues; distress associated with the burden of self-care, relationships with healthcare professionals and GP.

Increased levels of DD have been reported in patients that are younger and with shorter durations of the disease, women, and patients with poor social networks.

Further, low levels of DD are associated with better glycaemic control and greater self-care, thus, reducing the risk of complications following increased levels of HbA1c. Additionally, new research does point to an association between high levels of distress and increased mortality rate among both men and adults. However, these results are yet to be confirmed by longitudinal cohort studies that have included DD as the main outcome. Thus, it is of immense importance to address DD in time to prevent or reduce further exacerbating, which underpins the importance of addressing these issues from the time the patient is diagnosed with T2DM.

So, to provide patients with a feeling of continuity of care and satisfaction with trajectories, it is important that patients are referred for different activities, such as diabetes education, lifestyle interventions, and screening for complications. Additionally, it is important that health professionals have a patient-centered approach and increase patient involvement in the treatment. Neglecting these areas could potentially develop psychosocial complications within the patients. But how does one implement such changes in the Danish healthcare sector?

Addressing barriers to high-quality diabetes care across healthcare sectors: Successful development and implementation of cross-sectoral care pathways is challenging and includes a variety of complex processes. Thus, in the development of the present intervention, it was essential that the care pathways add value to both patients as well as health professionals in all sectors by improving the cross-sectoral collaboration, supporting, or improving professional skills and delivering more patient-centered and coordinated pathways. To explore this, initial research was conducted by SDCO aimed at mapping indicators for high quality care for people recently diagnosed with T2DM and identifying barriers and possibilities for implementing these cross-sectoral pathways. The main conclusions from the initial work showed that patients and health professionals agreed on quality standards for high-quality diabetes care and that these defined standards were in line with existing recommendations and clinical guidelines. However, patients did express that the experienced quality of diabetes care felt was inadequate and large barriers were found to ensuring implementation of those recommendations which include the following: The GPs have few patients diagnosed with T2DM yearly, making the development of routine care difficult. Moreover, adequate prioritization of T2DM patients is challenged by the fact that GPs receive a fixed fee regardless of the number of consultations they have with each patient, while at the same time dealing with an increase in patient pressure. The efforts within the initiative thus had to be realistic and consider this financial incentive structure. GPs also reported difficulties remaining updated and informed about available health care services provided by the municipalities. This was a significant barrier as some GPs did not refer patients as they felt the information, they had was inadequate, moreover, some GPs misinformed patients about the healthcare services offered by the municipalities, which then lead to unsatisfactory trajectories and pathways. Both patients and health professionals requested a well-defined and more self-acting pathway ensuring that patients receive the needed information and support from the appropriate health professional. In addition, no written patient information targeting persons recently diagnosed with T2DM was supplied. To accommodate this, patient guidelines and checklists were in cocreation with health professionals and patients added to the initiative. These findings are the core foundation and the main elements of the intervention to be evaluated within this research project.

Regarding the implementation of integrated care pathways, the initial research identified several factors that were required to allow local adaptation, while taking existing practice and organization into account. In addition, implementation of the initiative had to be achievable without adding additional services which might conflict with existing regional agreements regarding budget frames and expectations. One exception which adds substantial value is the inclusion of the "One-stop-shop", an initiative within SDCO, where patients from GP are offered their complication screening and blood samplings within the same appointment at the local hospital.

The Link between the developed intervention and the expected outcome(s):

The literature suggests that to successfully decrease levels of DD it is essential to create interventions that directly target DD. These interventions include health professionals who, 1. provide a safe environment for communication, 2. motivate and empower the patients, and 3. provide emotional support through listening and acknowledgement. In addition, retrospective data reports that supporting patients' needs at diagnosis, along with clear guidelines throughout the first months of the disease, results in better self-care in the 1-5 years following the diagnosis, thus reducing levels of DD. However, few interventions exist, that have explicitly addressed the effect of integrated care pathways for people recently diagnosed with T2DM or has been designed to reduce DD, and few reported best practices for implementation. Furthermore, many of these interventions lack a patient-centered approach failing to develop a user-driven intervention taking the patients' needs and situations into account. This highlights a need for developing interventions targeting diabetes distress by improving the patient-health professional relationship and communication and the cross sectoral collaboration.

The above-mentioned themes do explain the need for a healthcare sector that is able to knowledge-share and increase the cross-sectoral collaboration to provide the highest quality of care for patients recently diagnosed with T2DM. As of now, it is inadequate, thus affecting both the overall treatment for patients with diabetes and even more for people recently diagnosed with T2DM who just recently entered care. It is hypothesised that by increasing the cross-sectoral collaboration, several patient-reported outcomes such as the continuity of care felt by patients and levels of DD will be improved, and, in turn, reduce the risk of additional complications typically associated with T2DM. Furthermore, this increase in cross-sectoral collaboration might decrease already existing inequality between patients and thus secure the overall treatment of diabetes to the extent that variations in inequality are not substantial.

Therefore, this project seeks to evaluate the initiative created by SDCO directed at these issues, in its ability to strengthen the cross-sectoral collaboration between healthcare sectors within the Region of Southern Denmark, improve the perceived continuity of care felt by the patients, thus decreasing the levels of diabetes distress among patients.

Description of the cohort

Patients included for participation are recently diagnosed type 2 diabetes patients

Data and biological material

Data collected are the following:

Patient reported outcomes will be distributed through e-Boks at 14 days, 4 months, and 12 months post diagnosis. - Diabetes Distress Scale - The summary of diabetes self-care activity measures - SF12v2 - Major depression inventory - Perceived Stress Scale - The Conner-Davidson Resilience Scale - Lubben Social Network Scale - Patient Activation Measure - Pittsburgh Sleep Quality Index - Own questions

Clinical measures will be collected through patient journals and EPJ Syd. - Weight - HbA1c - Blood pressure - Blood lipids - EKG

Sociodemographic data will be collected though Danmarks Statistik.

Collaborating researchers and departments

Steno Diabetes Center Odense

  • Gitte Stentebjerg Petersen