Improving communication and shared decision making after major stroke: a mixed methods study

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

Predicting specific abilities after disabling stroke:Development and validation of prognostic models

BACKGROUND: Predicting specific abilities (e.g. walk and talk) to provide a functional profile six months after disabling stroke could help patients/families prepare for the consequences of stroke and facilitate involvement in treatment decision-making. AIM: To develop new statistical models to predict specific abilities six months after stroke and test their performance in an independent cohort of patients with disabling stroke. METHODS: We developed models to predict six specific abilities (to be independent, walk, talk, eat normally, live without major anxiety/depression, and to live at home) using data from seven large multicenter stroke trials with multivariable logistic regression. We included 13,117 participants recruited within three days of hospital admission. We assessed model discrimination and derived optimal cut-off values using four statistical methods. We validated the models in an independent single-center cohort of patients (n = 403) with disabling stroke. We assessed model discrimination and calibration and reported the performance of our models at the statistically derived cut-off values. RESULTS: All six models had good discrimination in external validation (AUC 0.78–0.84). Four models (predicting to walk, eat normally, live without major anxiety/depression, live at home) calibrated well. Models had sensitivities between 45.0 and 97.9% and specificities between 21.6 and 96.5%. CONCLUSIONS: We have developed statistical models to predict specific abilities and demonstrated that these models perform reasonably well in an independent cohort of disabling stroke patients. To aid decision-making regarding treatments, further evaluation of our models is required

Maintaining hope after a disabling stroke: A longitudinal qualitative study of patients’ experiences, views, information needs and approaches towards making treatment decisions

BackgroundSome treatments after a disabling stroke increase the likelihood patients will survive longer but with significant disability. Patients and doctors should make collaborative decisions regarding these treatments. However, this can be challenging. To better understand treatment decision-making in acute disabling stroke, we explored the experiences, views and needs of stroke survivors in hospital and six months later.MethodsFifteen patients who had a disabling stroke were interviewed within a week of their diagnosis; eleven were re-interviewed six months later. Data were analysed thematically and longitudinally.ResultsPatients' functional abilities prior to their stroke and need for hope of functional recovery appeared to impact on their involvement in decision-making. In the early period post stroke, patients who were functionally independent pre- stroke described being emotionally devastated and ill-prepared for the consequences of stroke. They appeared unaware that treatments offered might extend their life but with significant disability and took all treatments in the hope of functional recovery. Those who were dependent pre-stroke appeared to be more stoic, had considered treatment implications and decided against such treatments. At follow-up, all patients had varying unmet psychological needs which appeared to contribute to poor quality of life. In the early period post stroke, patients looked for various ways to cultivate and maintain hope of functional recovery. While patients continued to look for hope at six months, they also reported wishing they had been given realistic information in the early period after stroke in order to prepare for the consequences.ConclusionStroke survivors may benefit from psychological support. A collaborative approach towards treatment decision-making may not be realistic in all patients especially when they may be emotionally distressed and looking to maintain a positive outlook. Communication strategies to balance maintaining hope without providing false hope may be appropriate. Patients' information needs may need reassessed at different time points

Core outcome measures for palliative and end-of-life research after severe stroke: mixed-method Delphi study

Background and Purpose: Stroke is the second commonest cause of death worldwide and a leading cause of severe disability, yet there are no published trials of palliative care in stroke. To design and evaluate palliative care interventions for people with stroke, researchers need to know what measurable outcomes matter most to patients and families, stroke professionals, and other service providers. Methods: A multidisciplinary steering group of professionals and laypeople managed the study. We synthesized recommendations from respected United Kingdom and international consensus documents to generate a list of outcome domains and then performed a rapid scoping literature review to identify potential outcome measures for use in future trials of palliative care after stroke. We then completed a 3-round, online Delphi survey of professionals, and service users to build consensus about outcome domains and outcome measures. Finally, we held a stakeholder workshop to review and finalize this consensus. Results: We generated a list of 36 different outcome domains from 4 key policy documents. The rapid scoping review identified 43 potential outcome measures that were used to create a shortlist of 16 measures. The 36 outcome domains and 16 measures were presented to a Delphi panel of diverse healthcare professionals and lay service users. Of 48 panelists invited to take part, 28 completed all 3 rounds. Shared decision-making and quality of life were selected as the most important outcome domains for future trials of palliative care in stroke. Additional comments highlighted the need for outcomes to be feasible, measurable, and relevant beyond the initial, acute phase of stroke. The stakeholder workshop endorsed these results. Conclusions: Future trials of palliative care after stroke should include pragmatic outcome measures, applicable to the evolving patient and family experiences after stroke and be inclusive of shared decision-making and quality of life