Shared decision-making in the realm of uncertainty: The example of coronary artery disease through an EBM and complexity science lens

Patients look to their clinicians for explanations and treatments that achieve predictable cures with certainty. Clinicians usually respond accordingly. Acknowledging uncertainty, while necessary, is difficult, anxiety-provoking and at times overwhelming for patients and clinicians alike. We here present three case studies to illustrate the uncertainties of managing patients with potentially life-threatening illnesses. Research aims to provide answers to clinical problems. But, conducting research almost inevitably entails a reduction of real-world complexities. Research ultimately can only provide ‘partial or in general answers’ mostly revealing new questions. Due to the complexity of clinical care, research cannot really achieve certainty and predictability for an individual within his specific living context and values. In an unavoidably uncertain environment, instead of oversimplifying, clinicians like patients—as far as possible—ought to better embrace a complexity thinking frame. This provides a deeper understanding how living bodies function as-a-whole within their living contexts. Uncertainty and unpredictability, being inherent elements of complexity thinking, cannot be overcome. However, it may be made easier to cope with uncertainty by at least adopting the thinking in probabilities for benefits and harms of patient related outcomes as introduced in Sackett's Evidence-Based Medicine framework. Through the lenses of evidence-based medicine and complexity sciences this paper critically explores the clinical management of three patients diagnosed as having coronary artery disease. They all received the same treatment even though they presented with very different clinical complaints arising from different disease manifestations. Looking at these case studies the authors reflect on the reasons behind this astonishing, but widely seen medical behaviour of ‘one size fits all’. They critically reflect the importance of research and evidence in view of a person-centred solution.     

A codesigned integrated kidney and diabetes model of care improves patient activation among patients from culturally and linguistically diverse backgrounds

Background

Little is known about the relationship between patients' cultural and linguistic backgrounds and patient activation, especially in people with diabetes and chronic kidney disease (CKD). We examined the association between culturally and linguistically diverse (CALD) background and patient activation and evaluated the impact of a codesigned integrated kidney and diabetes model of care on patient activation by CALD status in people with diabetes and CKD.

Methods

This longitudinal study recruited adults with diabetes and CKD (Stage 3a or worse) who attended a new diabetes and kidney disease service at a tertiary hospital. All completed the patient activation measure at baseline and after 12 months and had demographic and clinical data collected. Patients from CALD backgrounds included individuals who spoke a language other than English at home, while those from non-CALD backgrounds spoke English only as their primary language. Paired t-tests compared baseline and 12-month patient activation scores by CALD status.

Results

Patients from CALD backgrounds had lower activation scores (52.1 ± 17.6) compared to those from non-CALD backgrounds (58.5 ± 14.6) at baseline. Within-group comparisons showed that patient activation scores for patients from CALD backgrounds significantly improved by 7 points from baseline to 12 months follow-up (52.1 ± 17.6–59.4 ± 14.7), and no significant change was observed for those from non-CALD backgrounds (58.5 ± 14.6–58.8 ± 13.6).

Conclusions

Among patients with diabetes and CKD, those from CALD backgrounds report worse activation scores. Interventions that support people from CALD backgrounds with comorbid diabetes and CKD, such as the integrated kidney and diabetes model of care, may address racial and ethnic disparities that exist in patient activation and thus improve clinical outcomes.

Patient or Public Contribution

Patients, caregivers and national consumer advocacy organisations (Diabetes Australia and Kidney Health Australia) codesigned a new model of care in partnership with healthcare professionals and researchers. The development of the model of care was informed by focus groups of patients and healthcare professionals and semi-structured interviews of caregivers and healthcare professionals. Patients and caregivers also provided a rigorous evaluation of the new model of care, highlighting its strengths and weaknesses.