Improving quality of life and combatting diabetes stigma
Recently published report looked at psychological and social wellbeing factors in managing diabetes.
The following article is an extract from a report in Diabetic Medicine led by Professor Katharine Barnard-Kelly.
Introduction
Given the central role that self-care plays in diabetes management, it is essential to utilise person-reported outcomes measures (PROMs) in both research and clinical care. Such PROMs have been designed to assess key elements in understanding the lived experience of people with diabetes that can impact the effectiveness of therapy. However, despite clinical recommendations, routine use of PROMs is rare in clinical care, and these instruments are also often lacking as outcomes in clinical trials. This deficit contributes to the lack of truly person-centred care often observed by National Voices, a leading coalition of health and social care charities.
This is surprising given the numerous regulatory bodies globally citing PROMs as key outcomes in healthcare delivery, for example, the FDA, NICE and EMA. Despite the World Health Organisation Charter (in 1948) defining health as the presence of complete physical, mental and social well-being and not merely the absence of disease, healthcare systems globally have also struggled to structure chronic condition healthcare along these constructs.
Large, randomised trials in people with type 1 diabetes and type 2 diabetes have demonstrated the importance of achieving glucose lowering to minimise the risk of microvascular and macrovascular complications.
In this context, the assessment of the effectiveness of diabetes management has centred on surrogate and physical outcomes (e.g., cardiovascular disease, chronic kidney disease, hypoglycaemia and death) that can be quantified and measured by the health system and ignored person-reported outcomes.
More recently, data in youth with type 2 diabetes have highlighted the rapid progression of diabetes complications within a few years of suboptimal glycaemia.
This relationship between glycaemia and serious health outcomes explains why glycaemic metrics are being used to define treatment success. Basing treatment success solely on glycaemic metrics, however, fails to recognise the complexity of diabetes as a chronic medical condition that has a strong behavioural interaction with prescribed therapies and technologies that impact quality of life. Thus, recent decades have seen a shift to better understand treatment satisfaction and other emotional and psychological factors, as well as social stigma, judgement and paternalism, balancing glycaemic outcomes with the burdens of treatment.
Depression
Systematic reviews show elevated depression scores and diagnosed depression are important co-morbid mental health problems in adults with diabetes, affecting an estimated 19%–22% of individuals.
Depression in diabetes is not only associated with substantially lower quality of life, but also with reduced self-care activities, and higher healthcare costs.
Functional health status, wellbeing and social functioning
Functional health status, well-being and social functioning are related and partially overlapping concepts.
Functional health status refers to a person's ability to perform daily activities and participate in social roles and responsibilities.
Sexual health
Sexual activity is bi-directionally associated with multiple health benefits such as improved quality of life, quality in intimate relationships, and mental well-being.
Sexual dysfunctions, however, are common amongst adults with type 1 diabetes or type 2 diabetes.
Diabetes distress
The demands and frustrations of diabetes self-management often serve as a significant emotional and physical burden for individuals with type 1 diabetes or type 2 diabetes. This burden is referred to as ‘diabetes-specific emotional distress’, or diabetes distress, which encapsulates the emotional reactions to the ongoing challenges and efforts that self-management demands, the perceived threats and potential despair regarding long-term complications, concerns about access to needed treatments, social stigma, and a host of other fears, worries and concerns.
Fear of hypoglycaemia
Fear of hypoglycaemia is widespread and affects around one in seven people with type 1 diabetes or type 2 diabetes using insulin. It is associated with heightened and often prolonged anxiety and is negatively associated with sub-optimal glycaemia. Fear of hypoglycaemia can exhibit in any person with diabetes; however, it is most common amongst those who experience recurrent hypoglycaemia.
Treatment satisfaction
The experience that people with diabetes have with their medical treatments, devices, digital services, healthcare, self-management education, and psychosocial support is an important part of assessing outcomes that matter. In turn, these factors can impact treatment use, medication taking and persistence.
Sleep quality and quantity
Sleep is an essential part of life and can affect every aspect of physical, mental and emotional health across the lifespan. Although the impact of sleep disturbances on health and QoL applies to all people, research suggests that sleep interacts with diabetes in numerous and unique ways. In type 2 diabetes, research has repeatedly found that insomnia, obstructive sleep apnoea, and restless leg syndrome are all significantly more prevalent, along with the negative effects on health outcomes and quality of life.
Impact of diabetes devices and technologies
PROMs use in research offer a layer of understanding of the impact of devices and technologies that goes beyond common glycaemic outcomes such as HbA1c and time in range. They are important because uptake of devices is closely tied to human factors including usability, safety, and reliability.
Conclusion
Effective assessment of PROMs routinely in clinical research is crucial to understanding the true impact of any intervention. There are a number of measures and methodologies that are reliable for this purpose. Selecting appropriate measures, relevant to the specific factors of PROs important in the research study will provide valuable data alongside physical health data. PROs should be included in parity with physical health outcomes in all research involving or impacting human beings.
It is crucial that PROs are thoroughly considered in terms of the domains and impact on the lived experience of participants. There is a lot to consider and, not to do this well, does a dis-service to research participants and the broader population of people with diabetes.
The Consensus Statement is endorsed by DRWF and other organisations, including: American Diabetes Association; European Association for the Study of Diabetes; Juvenile Diabetes Research Foundation; International Society for Pediatric and Adolescent Diabetes; Diabetes UK; Association of Diabetes Care & Education Specialists; Diabetes Technology Society; Advanced Technologies & Treatments for Diabetes; Children with Diabetes; and Diabetes Leadership Council.
Read the report in Diabetic Medicine
Professor Barnard-Kelly is co-author of the DRWF leaflets on Sexual and diabetes for men and women.
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