Resilience and patient-reported outcomes discussed at PSAD 2018

Highlights of the 23rd Spring Scientific meeting of the PsychoSocial Aspects of Diabetes (PSAD) Study Group (Verona, Italy). 

Prof Jackie Sturt

PSAD 2018 was energised early on with discussions on resilience as a positive diabetes mental health attribute. This is so refreshing given that much of our work, specialising in the psychological aspects of diabetes, is focussed on depression and distress.  Resilience was initially introduced by Dr Andrea Lukacs from Hungary in her presentation on ‘health-related quality of life of adolescents with type 1 diabetes (T1D) in the context of resilience’. Dr Lukacs and colleagues found resilience to be associated with higher levels of physical activity, better sleep and achievement of goals in young adults and suggested that resilience may be amenable to change. The concept of resilience exercised us in considering whether it is a state or a trait. Prof Jörg Huber discussed psychosocial resilience and its contribution to glycaemia in people with T1D, proposing that resilience is neither state nor trait but more of an umbrella term under which lies self-efficacy, social cohesiveness and self-regulation. Prof Huber presented data to show that resilience levels of people with T1D are associated with in-target HbA1c, independent of C-peptide and other covariates. He also proposed that C-peptide level has a role in supporting or undermining self-management efforts, which impacts upon resilience. He, therefore, proposed interventional efforts to support resilience need to be underpinned by social learning theory and social identity theory.

Psychological outcomes (known as ‘patient-reported outcomes or PROs) also had a strong representation at the meeting.  Prof Molly Byrne presented her work on developing an international consensus on core PROs for use in research with emerging adults with T1D. It is widely acknowledged, internationally, that young adults face significant health care burdens and simultaneously, that we (researchers and clinicians) find it hard to engage young adults with diabetes in research studies. The understanding we can draw from those studies, which have successfully engaged young adults, is hampered by the use of various clinical, organisational and PROs. This means it is difficult to use the evidence to inform health policy and clinical practice. Driven by these challenges, and supported Dr Ingrid Willaing and Dr Dan Grabowski from Steno Diabetes Centre, Prof Byrne proposed establishing a PSAD special interest group focussing on  research with children, adolescents and emerging adults. The PSAD Group agreed to move forward with this proposal. Any PSAD member wishing to contribute to this work should contact Ingrid or Molly (using the hyperlinks above).

Returning to the topic of PROs specifically, Prof Kath Barnard and Soren Skovlund called for a second PSAD special interest group on diabetes PROs. They were keen for the PSAD to develop international leadership to establish a core set of diabetes PROs, which could inform the policy work and research commissioning at the highest levels in all parts of the world. PSAD members interested in contributing to the PRO special interest group should contact Kath or Soren (using the hyperlinks above).

To conclude one of the meeting’s many discussions on PROs, Prof Tim Skinner challenged us all, by suggesting that we were perpetuating the wrong narrative. He asserted that as long as we continue to talk about outcomes we are being professional focussed; while, if we really want to lead the narrative in the direction of improving the lived experience of people with diabetes, we need to be talking about patient-reported ‘inputs’ rather than ‘outcomes’. Our outcomes focus risks us not being prepared to change the input that we provide to better support people with diabetes.

During the PSAD meeting, we congratulated Dr Mette Due-Christensen on winning this year’s PSAD Scientific Award for early career researchers (sponsored by Prof Kath Barnard) for her published peer-reviewed paper on the potential positive impact of group-based diabetes dialogue meetings on diabetes distress and glucose control in people with type 1 diabetes.