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Research to identify the potential benefits of preventing, identifying and managing diabetes distress in routine diabetes care pathways

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Published: 26 September 2022

Version: 2.0 - October 2022

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Summary

Programme Grants for Applied Research (PGfAR) is partnering with Diabetes UK. In Competition 40, launching in October 2022, co-funding is available for programmes of applied research which aim to better prevent and/or support people with diabetes distress. These may be new interventions, implementation of proven interventions, or other approaches that complement existing programmes in order to optimise engagement or effectiveness.

Background

In 2019, Diabetes UK organised a 2-day international research workshop, bringing together researchers, healthcare professionals, and people affected by diabetes to identify key gaps in the research evidence base that could help to improve the emotional and mental wellbeing of people with diabetes. The workshop highlighted a need to identify the potential benefits of preventing, identifying and managing diabetes distress in routine diabetes care pathways.1

Diabetes distress is the emotional response to living with diabetes, including the demands of self-management, the threat of complications,2 the social impact of stigma and discrimination,3 and the financial costs of treatment.4 This response can fluctuate over time and may peak during challenging periods such as soon after diagnosis, during major changes in treatment, during the development or worsening of long-term complications, or during stressors unrelated to diabetes.5

A meta-analysis of over 50 studies found that 1 in 4 people with type 1 diabetes and 1 in 5 people with type 2 diabetes have a level of diabetes distress which is likely to negatively impact their outcomes,6 including sub-optimal self-management,7-9 elevated HbA1c,10-12 more frequent severe hypoglycaemia,7,13 and impaired quality of life.8,14

The cause of diabetes distress is likely to be multifactorial: for example, linked to being given a diabetes diagnosis, concerns about management, fear of hypoglycaemia, and fear of future complications. However, distress might also be inadvertently enhanced by social interactions with family and friends and by negative interactions with health professionals. Whilst services or pathways which could help to improve the emotional and mental wellbeing of people with diabetes distress exist in some areas of the UK,15 consistent and effective services have yet to be implemented across the UK. There is a need both for evaluation of approaches and interventions to prevent and reduce diabetes distress, including ascertaining which components of a psycho-social intervention are most helpful, as well as determining how to configure existing services to ensure they reach those who are most at risk and who might benefit most. Furthermore, there is still a need for quantitative and qualitative longitudinal studies to provide robust evidence to underpin the development of the most effective approaches for preventing and treating diabetes distress. This knowledge would inform and enable the national rollout of effective therapies to support people with diabetes distress in the future.

Scope

NIHR Programme Grants for Applied Research (PGfAR) and Diabetes UK are inviting applications for collaborative, multidisciplinary and multiagency programmes of applied research which aim to improve the understanding, prevention and management of diabetes distress. Examples of potential programmes of research are given below, but this list is not exhaustive and other programmes linked to this overall research priority will be welcomed.

Examples:

  • What is the biopsychosocial impact of diabetes distress on patients, carers, and families?
  • What groups are at highest risk of experiencing diabetes distress in terms of age, ethnicity, complications, and co-morbidities?
  • What should we do when individuals express high levels of distress? E.g., should management differ if there is comorbid depression; how can we positively impact social interactions; what is the most helpful language for health care professionals to use; how can we ensure ‘attentive listening’?
  • How can we effectively and acceptably implement existing international programmes for diabetes distress within a UK context, across both primary and secondary care, and for all types of diabetes? E.g., how can we equip healthcare professionals with the competencies to address diabetes distress in routine practice; explore the role of digital technologies
  • What are the barriers to implementing and accessing these programmes?

Applications should fall within the remit of the PGfAR programme, and clearly identify the research context in terms of recent and currently funded UK/international research, together with the potential impact of the proposed research for patients/service users, carers, communities, the NHS and social care settings.

The inclusion of clear plans for real world implementation, knowledge mobilisation and dissemination of accrued outcomes and benefits should be considered. Outcomes should be relevant to patients, the public and/or carers, focused on health and wellbeing of diabetes distress, rather than being process specific. Applications demonstrating collaboration between research groups and between health and social care researchers will be particularly welcomed (see below).

The experiences of people with diabetes distress and their carers should be integral to the research: applications must involve people with lived experience of diabetes distress in the development of their proposal and be inclusive and seek to involve underrepresented groups to meet the needs of all groups of people with diabetes. NIHR has developed guidance on improving inclusion of under-served groups in clinical research: INCLUDE and INCLUDE website.

Expected collaborative approach for applicants

Our expectation is that research groups will collaborate to develop and submit proposals and avoid similar competing bids, and we strongly encourage you to actively reach out beyond your usual networks. Please note, the Health and Social Care Delivery Research Programme also has a funding call currently open in partnership with Diabetes UK for research which aims to improve services for people living with Diabetes. Applicants may also wish to consider the suitability of their research proposal to this NIHR funding call.

How to apply

In addition to this brief, you will need to carefully review the Guidance for Stage 1 applicants and the Supporting information for Stage 1 and Stage 2 applicants.

Applications must be submitted through the NIHR Research Management System. We supply a template application form for stage 1 (.DOCX - Word) and a template application form for stage 2 (.DOCX - Word) to help researchers prepare their proposal ahead of submission.

Please see our Competition 40 key dates for key information and dates.

Contact information

Further assistance can be obtained by contacting NIHR or Diabetes UK:

PGfAR: programme.grants@nihr.ac.uk

Diabetes UK: research@diabetes.org.uk

References

  1. Wylie TAF, Shah C, et al. Transforming mental well-being for people with diabetes: research recommendations from Diabetes UK’s 2019 Diabetes and Mental Well-Being Workshop. Diabetic Medicine. 2019;36(12):1532-1538.
  2. Gonzalez JS, Fisher L, et al. Depression in diabetes: have we been missing something important? Diabetes Care. 2011;34(11):2488.
  3. Polonsky WH, Fisher L, et al. Assessing psychosocial distress in diabetes development of the Diabetes Distress Scale. Diabetes Care. 2005;28(3):626-31.
  4. Fisher L, Gonzalez JS, et al. The confusing tale of depression and distress in patients with diabetes: a call for greater clarity and precision. Diabetic Medicine. 2014;31(7):764-72.
  5. Hendrieckx C, Halliday JA, Beeney LJ, Speight J. Diabetes and emotional health: a practical guide for healthcare professionals supporting adults with Type 1 and Type 2 diabetes. London: Diabetes UK, 2019, 2nd Edition (UK)
  6. Sturt J, Dennick K, Hessler D, Purssell E, Hunter B, Oliver J, Fisher L. High rates of elevated diabetes distress in research populations: A systematic review and meta-analysis. International Diabetes Nursing. 2016 Jul 21:1-5.
  7. Snoek FJ, Pouwer F, et al. Diabetes-related emotional distress in Dutch and US diabetic patients: cross-cultural validity of the problem areas in diabetes scale. Diabetes Care. 2000;23(9): 1305-9.
  8. Fisher L, Mullan JT, et al. Predicting diabetes distress in patients with type 2 diabetes: a longitudinal study. Diabetic Medicine. 2009;26(6):622-7.
  9. Ting RZ, Nan H, et al. Diabetes-related distress and physical and psychological health in Chinese type 2 diabetic patients. Diabetes Care. 2011;34(5):1094-6
  10. Weinger K, Jacobson AM. Psychosocial and quality of life correlates of glycemic control during intensive treatment of type 1 diabetes. Patient Education and Counseling. 2001;42(2):123-31.
  11. van der Ven NC, Lubach CH, et al. Cognitive behavioural group training (CBGT) for patients with type 1 diabetes in persistent poor glycaemic control: who do we reach? Patient Education and Counseling. 2005;56(3):313-22.
  12. Fisher L, Mullan JT, et al. Diabetes distress but not clinical depression or depressive symptoms is associated with glycemic control in both cross-sectional and longitudinal analyses. Diabetes Care. 2010;33(1):23-8.
  13. Hendrieckx C, Halliday JA, et al. Severe hypoglycaemia and its association with psychological well-being in Australian adults with type 1 diabetes attending specialist tertiary clinics. Diabetes Research and Clinical Practice. 2014;103(3):430-6
  14. Balfe M, Doyle F, et al. What’s distressing about having type 1 diabetes? A qualitative study of young adults’ perspectives. BMC Endocrine Disorders. 2013;13(1):25.
  15. Todd PJ, Edwards F, Spratling L, Patel NH, Amiel SA, Sturt Jet al. Evaluating the relationships of hypoglycaemia and HbA1c with screening-detected diabetes distress in type 1 diabetes. Endocrinol Diabetes Metab. 2017;1: e00003.