Shared decision making after severe stroke—How can we improve patient and family involvement in treatment decisions?

The respect of a patient’s autonomous rights within the model of patient-centred care has led to shared decision-making, rather than more paternalistic care. Understanding patient needs, preferences, and lifestyle choices are central to developing shared treatment decisions. Patients can be prepared through the use of question prompt sheets and other decision aids. Audio-recording of informative consultations further helps. A variety of factors like the patient’s age, tumour type and stage of disease, an available range of similar treatment options, and their risk-benefit ratios will impact on the use of shared decision-making. Modifiable barriers to shared decision-making can be identified. Teaching shared decision-making includes the practice of agenda setting, use of partnership statements, clarification of patient preferences, varied approaches to explaining potential treatment benefits and risks, review of patient values and lifestyle factors, and checking patient understanding–this sequence helps both clinicians and patients to optimally reach a shared treatment decision.

Download Full-text

P002 IBD PARTNERSHIPS: UNDERSTANDING PATIENTS VS. CLINICIANS PERSPECTIVES OF IBD TREATMENT OPTIONS TO IMPROVE SHARED DECISION-MAKING

Inflammatory Bowel Diseases ◽

10.1093/ibd/zaa010.130 ◽

2020 ◽

Vol 26 (Supplement_1) ◽

pp. S51-S51

Author(s):

Sandra Zelinsky ◽

Catherine Finlayson

Keyword(s):

Quality Of Life ◽

Decision Making ◽

Focus Groups ◽

Shared Decision Making ◽

Healthcare Providers ◽

Treatment Decisions ◽

Research Approach ◽

Shared Decision ◽

Rural And Urban

Abstract Background The patient is the only constant in the care journey, the person who experiences both processes and the outcomes of care. There is an international shift towards including patients as equal partners in research. Co-producing research with Inflammatory Bowel Disease (IBD) patients to understand their values, needs and priorities when making treatment decisions will potentially improve shared decision-making between IBD patients and their Healthcare Providers (HCPs). To facilitate this process patients and HCPs must have a common understanding of expected medication benefits, risks and the potential impact on quality of life. The information available to facilitate this conversation must be aligned and reflect the priorities that IBD Patients and Healthcare Providers consider when making treatment decisions. Both parties can then share information and work towards an agreement to what treatment plan should be implemented. Aims To understand what matters most to IBD patients when making treatment decisions by conducting a qualitative patient-led peer to peer study which will inform the development of an IBD patient and HCP survey. Methods IBD patients (≥ 18 years of age) were recruited through the IBD clinic at the University of Calgary and via social media. Focus groups were held in three separate provinces (British Columbia, Alberta and Ontario) in both rural and urban locations. The focus groups were facilitated by a Patient Engagement Researcher to alleviate any potential power dynamics and to create a safe space for IBD patients to share their perspectives. A participatory action research approach was used to encourage co-production with participants throughout the focus groups. The focus groups were audio recorded. Flip charts and sticky notes were used for brainstorming and prioritization exercises. All audio and written data were transcribed. Thematic analysis was used to identify emerging themes and patient priorities. Results A total of 21 participants attended the focus groups from both rural and urban locations. Participant diversity ranged in ethnicity and age. Most of the participants were female (18 females and 3 males) of which 4 were biologic naïve and 17 were biologic exposed. The Top 5 IBD Patient Priorities when making treatment decisions are 1) Risks(more serious/long term) 2) Education(Support/Evidence Based Information/Resources) 3) Side Effects(short term/less serious) 4) Efficacy 5) Impact(Quality of Life/ Lifestyle/Logistics). Conclusions Co-producing research ‘with’ and ‘by’ IBD patients helped to generate priorities that matter most to patients when making treatment decisions. The patient priorities will help in the development of an IBD Patient and HCP survey. The results from the two surveys will be compared to understand patient vs. HCP perspectives.

Download Full-text