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
