Care and Quality of Life in the Dying Phase: The contribution of the Liverpool Care Pathway for the Dying Patient

This thesis concerns the professional care and the quality of life for dying patients and their relatives in the hospital, the nursing home and the primary care setting. The effect of introducing the Liverpool Care Pathway for the Dying Patient (LCP) on the content of care and the quality of life of the dying patient was studied. The Liverpool Care Pathway for the Dying Patient (LCP) provides care goals to ensure that dying patients and their family receive the best possible comfort care. The LCP has been developed and used in the Marie Curie Hospice, Liverpool since the early 90ties. We applied a pre- and post intervention study in which patient and care characteristics were compared before and after implementation of the LCP. Data were collected after the death of patients. For each deceased patient we asked a nurse, a physician and a bereaved relative to fill in a questionnaire. The patients’ physical symptoms, the content of care to patients and families, as well as some subjective aspects, such as the patients’ psychological symptoms, and spirituality were assessed. Besides, relatives reported on aspects of their own bereavement. The questionnaires were partly based upon existing questionnaires, namely the EORTC QLQ-C30, the Views Of Informal Carers Evaluation of Services questionnaire (VOICES), the Palliative Outcome Scale (POS), and the Leiden Detachment Scale (LDS). Additional questions were developed based upon insights that were gained from former research concerning medical care and decision making in the last phase of life. The research questions concerned the effect of LCP use on 1. the quality of life of patients in the last three days of life, 2. the content of care for patients in the last three days of life, 3. the communication in the last three days of life and the level of bereavement of relatives

Daily activities, participation, satisfaction, and functional mobility of adults with cerebral palsy more than 25 years after selective dorsal rhizotomy: a long-term follow-up during adulthood

CITATION: Berendina E. et al. 2021. Daily activities, participation, satisfaction, and functional mobility of adults with cerebral palsy more than 25 years after selective dorsal rhizotomy: a long-term follow-up during adulthood. Disability and Rehabilitation, 43(15):2191-2199, doi:10.1080/09638288.2019.1695001The original publication is available at http://www.tandfonline.com/toc/idre20/currentPurpose: To determine changes in level of accomplishment and satisfaction in daily activities and social participation, and functional mobility in adults with cerebral palsy (CP) more than 25 years after selective dorsal rhizotomy (SDR). Materials and methods: This long-term observational nine-year follow-up study included 26 adults (median age 35 years) with CP and spastic diplegia, and 26 matched typically developing adults. Assessment tools used were the Life-Habits questionnaire and the Functional Mobility Scale. Results: Most of the adults with CP were independent and satisfied with accomplishing life habits and no changes were determined, except for a small change in the Housing accomplishment level. Compared to typically developing adults, the CP cohort was more dependent in accomplishing Mobility and Recreation. However, the level of satisfaction was similar for most life habits except for Mobility. Functional mobility did not change, but correlated with Life-Habits results. Conclusions: Adults with CP showed high and stable levels of accomplishment and satisfaction in daily activities and social participation more than 25 years after SDR. This is in contrast with the literature, where functional decline was shown for individuals with CP as they age. The relation with functional mobility highlights the importance to focus the rehabilitation on maintaining walking ability in order to enable high level of daily activities and social participation in adults with CP. Implications for rehabilitation: Selective dorsal rhizotomy (SDR) is a valuable treatment option for a selective group of children with cerebral palsy (CP) in order to reduce spasticity. The long-term outcomes of SDR on level of accomplishment and satisfaction in daily activities and social participation as well functional mobility in adults with CP are not clear. More than 25 years after SDR adults with CP experienced stable and lasting high levels of functioning regarding daily activities and social participation and were satisfied with the way they accomplished life habits. Functional mobility was correlated to level of accomplishment and satisfaction in daily activities and social participation, which highlights the importance to focus rehabilitation programs on maintaining functional mobility in order to enable daily activities and social participation in adults with CP.https://www.tandfonline.com/doi/full/10.1080/09638288.2019.1695001Publishers versio

Case Series of a Knowledge Translation Intervention to Increase Upper Limb Exercise in Stroke Rehabilitation

Background and Purpose. Current approaches to upper limb rehabilitation are not sufficient to drive neural reorganization and maximize recovery after stroke. To address this evidence-practice gap, a knowledge translation intervention using the Behaviour Change Wheel was developed. The intervention involves collaboratively working with stroke therapy teams to change their practice and increase therapy intensity by therapists prescribing supplementary self-directed arm exercise. The purposes of this case series are: (1) to provide an illustrative example of how a research-informed process changed clinical practice and (2) to report on staff members’ and patients’ perceptions of the utility of the developed intervention. Case Descriptions. A participatory action research approach was used in 3 stroke rehabilitation units in the United Kingdom. The intervention aimed to change 4 therapist-level behaviors: (1) screening patients for suitability for supplementary self-directed arm exercise, (2) provision of exercises, (3) involving family and caregivers in assisting with exercises, and (4) monitoring and progressing exercises. Data on changes in practice were collected by therapy teams using a bespoke audit tool. Utility of the intervention was explored in qualitative interviews with patients and staff. Outcomes. Components of the intervention were successfully embedded in 2 of the 3 stroke units. At these sites, almost all admitted patients were screened for suitability for supplementary self-directed exercise. Exercises were provided to 77%, 70%, and 88% of suitable patients across the 3 sites. Involving family and care givers and monitoring and progressing exercises were not performed consistently. Conclusions. This case report is an example of how a rigorous research-informed knowledge translation process resulted in practice change. Research is needed to demonstrate that these changes can translate into increased intensity of upper limb exercise and affect patient outcome

The effectiveness of the Liverpool care pathway in improving end of life care for dying cancer patients in hospital. A cluster randomised trial

<p>Abstract</p> <p>Background</p> <p>Most cancer patients still die in hospital, mainly in medical wards. Many studies in different countries have shown the poor quality of end-of-life care delivery in hospitals. The Program "Liverpool Care Pathway for the dying patient" (LCP), developed in the UK to transfer the hospice model of care into hospitals and other care settings, is a complex intervention to improve the quality of end-of-life care. The results from qualitative and quantitative studies suggest that the LCP Program can improve significantly the quality of end-of-life care delivery in hospitals, but no randomised trial has been conducted till now.</p> <p>Methods and design</p> <p>This is a randomized cluster trial, stratified by regions and matched for assessment period. Pairs of eligible medical wards from different hospitals will be randomized to receive the LCP-I Program or no intervention until the end of the trial. The LCP-I Program will be implemented by a Palliative Care Unit.</p> <p>The assessment of the end-points will be performed for all cancer deaths occurred in the six months after the end of the LCP-I implementation in the experimental wards and, in the same period of time, in the matched control wards. The primary end-point is the overall quality of end-of-life care provided on the ward to dying cancer patients and their families, assessed using the Global Scale of the Italian version of the Toolkit <it>"After-death Bereaved Family Member Interview</it>".</p> <p>Discussion</p> <p>This study can be interpreted as a Phase III trial according to the Medical Research Council Framework. In this study, the effectiveness of a fully defined intervention is assessed by comparing the distribution of the endpoints in the experimental and in the control arm.</p> <p>Research ID</p> <p>RFPS-2006-6-341619</p> <p>Trial registration</p> <p>ClinicalTrials.gov Identifier: <a href="http://www.clinicaltrials.gov/ct2/show/NCT01081899">NCT01081899</a></p

Design of the ExCersion-VCI study: The effect of aerobic exercise on cerebral perfusion in patients with vascular cognitive impairment

There is evidence for a beneficial effect of aerobic exercise on cognition, but underlying mechanisms are unclear. In this study, we test the hypothesis that aerobic exercise increases cerebral blood flow (CBF) in patients with vascular cognitive impairment (VCI). This study is a multicenter single-blind randomized controlled trial among 80 patients with VCI. Most important inclusion criteria are a diagnosis of VCI with Mini-Mental State Examination ≥22 and Clinical Dementia Rating ≤0.5. Participants are randomized into an aerobic exercise group or a control group. The aerobic exercise program aims to improve cardiorespiratory fitness and takes 14 weeks, with a frequency of three times a week. Participants are provided with a bicycle ergometer at home. The control group receives two information meetings. Primary outcome measure is change in CBF. We expect this study to provide insight into the potential mechanism by which aerobic exercise improves hemodynamic status

Implementing biomarkers to predict motor recovery after stroke

BACKGROUND: There is growing interest in using biomarkers to predict motor recovery and outcomes after stroke. The PREP2 algorithm combines clinical assessment with biomarkers in an algorithm, to predict upper limb functional outcomes for individual patients. To date, PREP2 is the first algorithm to be tested in clinical practice, and other biomarker-based algorithms are likely to follow. PURPOSE: This review considers how algorithms to predict motor recovery and outcomes after stroke might be implemented in clinical practice. FINDINGS: There are two tasks: first the prediction information needs to be obtained, and then it needs to be used. The barriers and facilitators of implementation are likely to differ for these tasks. We identify specific elements of the Consolidated Framework for Implementation Research that are relevant to each of these two tasks, using the PREP2 algorithm as an example. These include the characteristics of the predictors and algorithm, the clinical setting and its staff, and the healthcare environment. CONCLUSIONS: Active, theoretically underpinned implementation strategies are needed to ensure that biomarkers are successfully used in clinical practice for predicting motor outcomes after stroke, and should be considered in parallel with biomarker developmen

Design of the ExCersion-VCI study: The effect of aerobic exercise on cerebral perfusion in patients with vascular cognitive impairment

There is evidence for a beneficial effect of aerobic exercise on cognition, but underlying mechanisms are unclear. In this study, we test the hypothesis that aerobic exercise increases cerebral blood flow (CBF) in patients with vascular cognitive impairment (VCI). This study is a multicenter single-blind randomized controlled trial among 80 patients with VCI. Most important inclusion criteria are a diagnosis of VCI with Mini-Mental State Examination ≥22 and Clinical Dementia Rating ≤0.5. Participants are randomized into an aerobic exercise group or a control group. The aerobic exercise program aims to improve cardiorespiratory fitness and takes 14 weeks, with a frequency of three times a week. Participants are provided with a bicycle ergometer at home. The control group receives two information meetings. Primary outcome measure is change in CBF. We expect this study to provide insight into the potential mechanism by which aerobic exercise improves hemodynamic status