Improving communication and shared decision making after major stroke: a mixed methods study
Item statusRestricted Access
Embargo end date30/11/2021
Introduction Patients may be significantly disabled after a major stroke but two patients in the same disability level according to outcome scales such as the modified Rankin scale (mRs) can vary with respect to their specific abilities (e.g. ability to walk, talk and eat) and therefore may have different views on their quality of life. Treatment decisions after major stroke are often made based on predictions of survival and independence. Many treatments can prolong the survival of patients who may be significantly disabled. Knowledge of patient abilities and preferences for such treatments are needed to make treatment decisions in keeping with their wishes. However, shared decision-making after major stroke can be challenging. Aims First, to understand how patients may vary with regards to their specific abilities and reported quality of life after major stroke. Second, to understand the experiences, preferences, needs and involvement in decision-making regarding treatments by patients (who retained mental capacity) and family members (where the patient lacked capacity) in the early period after major stroke and their feelings six months later. Third, to develop ways to communicate diagnosis and prognosis after major stroke better. Methods I used a range of clinical research methodologies: i) A prospective cohort study (n=403) to investigate the progress and outcomes of patients admitted with a major stroke with respect to several domains (disability, quality of life and specific abilities e.g. walking, talking, eating.) ii) Qualitative interviews to explore the experiences, views, needs (information and support) and shared decision-making approaches of patients admitted with a major stroke who retained mental capacity (n=15) and family members where the patient lacked capacity (n=24). iii) Questionnaires to evaluate communication between doctors (n=9) and participants (n=24). iv) Statistical modelling to develop (n=13,117) and externally validate (n=403) models predicting specific abilities after stroke. Results Patients varied with respect to their specific abilities even though they may be in the same disability level according to global outcome scales (e.g. mRs). In the early period after major stroke, patients looked for hope and were not ready to participate in shared decision-making. However, six months later they wished they had been better prepared for the impact of major stroke by having been given realistic information and psychological support. Family members who were involved in decision-making considered the patient’s state of health and preferences before stroke. Some found communication of specific abilities after major stroke useful to decision-making. Based on our expert judgement, longitudinal cohort and qualitative interviews, we developed and externally validated prognostic models to predict six specific abilities after stroke. These models have limitations and need further evaluation. In the future, they may be useful for doctors as a sense check of their judgement of the patients’ prognosis, and to provide hope or information to understand impact of major stroke and/or make treatment decisions. This thesis details the challenges of communicating prognosis and involving patients and families in shared decision-making after major stroke and will inform a future intervention to deliver tailored information.