scholarly journals Core Outcome Measures for Palliative and End-of-Life Research After Severe Stroke: Mixed-Method Delphi Study

Stroke ◽  
2021 ◽  
Author(s):  
Bruce Mason ◽  
Kirsty Boyd ◽  
Fergus Doubal ◽  
Mark Barber ◽  
Marian Brady ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Palliative Care ◽  
Shared Decision Making ◽  
Outcome Measures ◽  
Service Users ◽  
Shared Decision ◽  
Potential Outcome ◽  
Stakeholder Workshop

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.

Improving the Perception of Patient-Centered Wellness in a Virtual Population During the COVID-19 Pandemic

2021 ◽  
pp. JDNP-D-20-00078
Author(s):  
Sybilla Myers ◽  
Christopher Kennedy
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Shared Decision Making ◽  
Cognitive Theory ◽  
Well Being ◽  
Mobile App ◽  
Shared Decision ◽  
Patient Centered ◽  
The Social

BackgroundPerceived health-related quality of life (HRQOL) is fundamental to well-being and is a meaningful way to measure physical and mental health.Local ProblemNo standard method exists for measuring perceived HRQOL during the COVID-19 pandemic in participants as they attempt to improve their self-determined wellness goals. An implementation plan that considers the social distancing limitations imposed can be used to predict an individual’s likelihood of long-term success.MethodsDuring the four, 2-week plan-do-study-act (PDSA) cycles, the Social Cognitive Theory model informed the implementation of the four core interventions. To guide iterative changes, the data was analyzed through Excel and run charts.InterventionsThe four core interventions were the shared decision-making tool (SDMT), health mobile app tool (HMAT), wellness tracker tool (WTT), and the team engagement plan.ResultsAmong 28 participants, perceived quality of life increased by 70%, engagement in shared decision-making increased to 82%, app use and confidence increased to 85%, and goal attainment reached 81%.ConclusionsThe SDMT, health app, and wellness tracker created a methodical plan of accountability for increasing participant wellness. The contextual barrier of the COVID-19 pandemic added a negative wellness burden which was mitigated by creating a patient-centered culture of wellness.

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

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.

scholarly journals Optimization of Upper Extremity Rehabilitation by Combining Telerehabilitation With an Exergame in People With Chronic Stroke: Protocol for a Mixed Methods Study

10.2196/14629 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e14629
Author(s):  
Dorra Rakia Allegue ◽  
Dahlia Kairy ◽  
Johanne Higgins ◽  
Philippe Archambault ◽  
Francois Michaud ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Mixed Methods ◽  
Upper Extremity ◽  
Shared Decision Making ◽  
Stroke Rehabilitation ◽  
Mixed Methods Study ◽  
Decision Making Process ◽  
Shared Decision

Background Exergames have the potential to provide an accessible, remote approach for poststroke upper extremity (UE) rehabilitation. However, the use of exergames without any follow-up by a health professional could lead to compensatory movements during the exercises, inadequate choice of difficulty level, exercises not being completed, and lack of motivation to pursue exercise programs, thereby decreasing their benefits. Combining telerehabilitation with exergames could allow continuous adjustment of the exercises and monitoring of the participant’s completion and adherence. At present, there is limited evidence regarding the feasibility or efficacy of combining telerehabilitation and exergames for stroke rehabilitation. Objective This study aims to (1) determine the preliminary efficacy of using telerehabilitation combined with exergames on UE motor recovery, function, quality of life, and motivation in participants with chronic stroke, compared with conventional therapy (the graded repetitive arm supplementary program; GRASP); (2) examine the feasibility of using the technology with participants diagnosed with stroke at home; and (3) identify the obstacles and facilitators for its use by participants diagnosed with stroke and stroke therapists and understand the shared decision-making process. Methods A mixed methods study protocol is proposed, including a randomized, blinded feasibility trial with an embedded multiple case study. The intervention consists of the provision of a remote rehabilitation program, during which participants will use the Jintronix exergame for UE training and the Reacts Application to conduct videoconferenced sessions with the therapists (physical or occupational therapists). We plan to recruit 52 participants diagnosed with stroke, randomly assigned to a control group (n=26; 2-month on-paper home exercise program: the GRASP with no supervision) and an experimental group (n=26; 2-month home program using the technology). The primary outcome is the Fugl-Meyer UE Assessment, a performance-based measure of UE impairment. The secondary outcomes are self-reported questionnaires and include the Motor Activity Log-28 (quality and frequency of use of the UE), Stroke Impact Scale-16 (the quality of life), and Treatment Self-Regulation Questionnaire (motivation). Feasibility data include process, resources, management, and scientific outcomes. Qualitative data will be collected by interviews with both participants and therapists. Results At present, data collection was ongoing with one participant who had completed the exergame- telerehabilitation based intervention. We expect to collect preliminary efficacy data of this technology on the functional and motor recovery of the UE, following a stroke; collect feasibility data with users at home (adherence, safety, and technical difficulties); and identify the obstacles and facilitators for the technology use and understand the shared decision-making process. Conclusions This paper describes the protocol underlying the study of a telerehabilitation-exergame technology to contribute to understanding its feasibility and preliminary efficacy for UE stroke rehabilitation. Trial Registration ClinicalTrials.gov NCT03759106; http://clinicaltrials.gov/show/NCT03759106. International Registered Report Identifier (IRRID) DERR1-10.2196/14629

Does providing autonomy for older adults through shared decision making improve quality of life?

2022 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Janelle Whitt ◽  
John Duke ◽  
Livia Maruoka Nishi ◽  
Molly Martin
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Decision Making ◽  
Shared Decision Making ◽  
Shared Decision ◽  
Improve Quality

scholarly journals Impact of shared decision making on asthma quality of life and asthma control among children

2017 ◽  
Vol 55 (6) ◽  
pp. 675-683 ◽  
Author(s):  
Yhenneko J. Taylor ◽  
Hazel Tapp ◽  
Lindsay E. Shade ◽  
Tsai-Ling Liu ◽  
Jessica Lauren Mowrer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Shared Decision Making ◽  
Asthma Control ◽  
Shared Decision

scholarly journals Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial

PLoS Medicine ◽  
2020 ◽  
Vol 17 (11) ◽  
pp. e1003422
Author(s):  
Ida J. Korfage ◽  
Giulia Carreras ◽  
Caroline M. Arnfeldt Christensen ◽  
Pascalle Billekens ◽  
Louise Bramley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Care Planning ◽  
Shared Decision ◽  
Specialist Palliative Care ◽  
Cluster Randomised ◽  
Advance Care

Background Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. Methods and findings To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015–2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0–3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients’ age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients’ quality of life did not differ between intervention and control groups (T-score −1.8 versus −0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. Conclusions Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. Trial registration ISRCTN registry ISRCTN63110516.

scholarly journals Optimization of Upper Extremity Rehabilitation by Combining Telerehabilitation With an Exergame in People With Chronic Stroke: Protocol for a Mixed Methods Study (Preprint)

2019 ◽  
Author(s):  
Dorra Rakia Allegue ◽  
Dahlia Kairy ◽  
Johanne Higgins ◽  
Philippe Archambault ◽  
Francois Michaud ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Mixed Methods ◽  
Upper Extremity ◽  
Shared Decision Making ◽  
Stroke Rehabilitation ◽  
Mixed Methods Study ◽  
Decision Making Process ◽  
Shared Decision

BACKGROUND Exergames have the potential to provide an accessible, remote approach for poststroke upper extremity (UE) rehabilitation. However, the use of exergames without any follow-up by a health professional could lead to compensatory movements during the exercises, inadequate choice of difficulty level, exercises not being completed, and lack of motivation to pursue exercise programs, thereby decreasing their benefits. Combining telerehabilitation with exergames could allow continuous adjustment of the exercises and monitoring of the participant’s completion and adherence. At present, there is limited evidence regarding the feasibility or efficacy of combining telerehabilitation and exergames for stroke rehabilitation. OBJECTIVE This study aims to (1) determine the preliminary efficacy of using telerehabilitation combined with exergames on UE motor recovery, function, quality of life, and motivation in participants with chronic stroke, compared with conventional therapy (the graded repetitive arm supplementary program; GRASP); (2) examine the feasibility of using the technology with participants diagnosed with stroke at home; and (3) identify the obstacles and facilitators for its use by participants diagnosed with stroke and stroke therapists and understand the shared decision-making process. METHODS A mixed methods study protocol is proposed, including a randomized, blinded feasibility trial with an embedded multiple case study. The intervention consists of the provision of a remote rehabilitation program, during which participants will use the Jintronix exergame for UE training and the Reacts Application to conduct videoconferenced sessions with the therapists (physical or occupational therapists). We plan to recruit 52 participants diagnosed with stroke, randomly assigned to a control group (n=26; 2-month on-paper home exercise program: the GRASP with no supervision) and an experimental group (n=26; 2-month home program using the technology). The primary outcome is the Fugl-Meyer UE Assessment, a performance-based measure of UE impairment. The secondary outcomes are self-reported questionnaires and include the Motor Activity Log-28 (quality and frequency of use of the UE), Stroke Impact Scale-16 (the quality of life), and Treatment Self-Regulation Questionnaire (motivation). Feasibility data include process, resources, management, and scientific outcomes. Qualitative data will be collected by interviews with both participants and therapists. RESULTS At present, data collection was ongoing with one participant who had completed the exergame- telerehabilitation based intervention. We expect to collect preliminary efficacy data of this technology on the functional and motor recovery of the UE, following a stroke; collect feasibility data with users at home (adherence, safety, and technical difficulties); and identify the obstacles and facilitators for the technology use and understand the shared decision-making process. CONCLUSIONS This paper describes the protocol underlying the study of a telerehabilitation-exergame technology to contribute to understanding its feasibility and preliminary efficacy for UE stroke rehabilitation. CLINICALTRIAL ClinicalTrials.gov NCT03759106; http://clinicaltrials.gov/show/NCT03759106. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/14629

scholarly journals Examining Interventions Designed to Support Shared Decision Making and Subsequent Patient Outcomes in Palliative Care: A Systematic Review of the Literature

2018 ◽  
Vol 36 (1) ◽  
pp. 76-88 ◽  
Author(s):  
Dawon Baik ◽  
Hwayoung Cho ◽  
Ruth M. Masterson Creber
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Shared Decision Making ◽  
Patient Outcomes ◽  
Medical Decision ◽  
Cochrane Library ◽  
Shared Decision ◽  
Patient Centered

Background: Shared decision making (SDM) is a key attribute of patient-centered care, which empowers palliative care patients to be able to make optimal medical decisions about end-of-life treatments based on their own values and preferences. Aim: The aim of this systematic literature review is to detail and compare interventions supporting SDM over the last 10 years (January 2008 to December 2017) and to analyze patient/caregiver outcomes at the end of life. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, Embase, and Cochrane Library were searched with key search terms: SDM, decision aid, decision support, palliative care, and hospice care. The Mixed Methods Appraisal Tool was used to assess the quality of the included studies. Results: The initial search yielded 2705 articles, and 12 studies were included in the final review. The quality of the studies was modest and technology-enabled delivery modes (e.g., video, DVD, web-based tool) were most commonly used. Patient/caregiver knowledge of end-of-life care was the most common primary outcome across studies. The strength of the association between the SDM interventions and patient/caregiver outcomes varied. Conclusion: The findings from the studies that examined the effects of the SDM intervention on patient outcomes were inconsistent, highlighting the need for further SDM intervention studies among diverse patient populations using consistent measures. Given the availability of health technologies, future studies should focus on developing individual-tailored, technology-enabled interventions to support patient-centered medical decision making.

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