Aim: To characterize the need for and access to psychological care and self-care support for People With Diabetes (PWD) and Caregivers (CG) in Denmark.
Methods: The national diabetes survey (Life with Diabetes 2019) was designed by the Danish Diabetes Association, Steno Diabetes Center North, and Aalborg University with PWD and CG to benchmark Impact/daily life, Access to care, technology and services and understand key wishes and priorities. The study used pre-validated, national PRO diabetes and purpose-built Likert items/scales, as well as open-ended items for mixed-methods research. E-mail invites were sent to 38.820 members of the Danish Diabetes Association. Statistics were done with (STATA/SPSS 26) and coding and thematic analysis with (NVIVO12).
Results: 9.108 PWD and 761 CG completed the survey: 71% had T2 and 26% T1 diabetes. 51% were women. All Danish regions were represented: Capital (n=2.753), South (n=2365), Central (n=2.126), Zealand (n=1.490) and North (n=1.082). Age/gender was similar to the general population. Impact: 19% of PWD felt distress (diabetes taking up “too much of daily life”). Access: 18% of PWD (24% women vs. 12% men) needed a referral for a psychologist, but had not been offered one. 36% of PWD/21% of CG did not get the support they needed to deal with diabetes related emotions. Wishes: 19% reported a major need for system wide improvement in psychosocial support and analyses of 1.100 free text responses identified detailed problem/improvement areas, notably within: 1) access to new technology, 2) quality of care in primary practice 3) Whole-person care beyond medicine (exercise, diet, mental health).
Conclusions: This is the largest nationwide Danish survey to date to quantify as well as qualitatively characterize a major need for better access to psychological and other non-medical diabetes care in Denmark.
S.E. Skovlund: None. K.A. Nielsen: None. N. Ejskjaer: None.
Danish Diabetes Association