“I hear there is a new medicine that means I don’t need to take so many pills?”

HIV ◽  
2020 ◽  
pp. 21-28
Author(s):  
Gretchen Snoeyenbos Newman ◽  
Brian R. Wood
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Antiretroviral Therapy ◽  
Side Effects ◽  
Hepatitis B ◽  
Clinical Medicine ◽  
Shared Decision ◽  
Potential Drug ◽  
Potential Benefits

Judging potential benefits versus risks of an antiretroviral therapy (ART) regimen switch or update has become a mainstay of HIV clinical medicine. A regimen switch for a person with HIV who has long-standing viral suppression may minimize toxicity and maximize quality of life but requires shared decision-making and a careful preswitch evaluation. All regimen changes should be preceded by a review of the complete ART history and resistance profile, evaluation for hepatitis B co-infection, and potential drug-drug interactions or drug-food requirements, as well as contingency planning in case of unforeseen side effects or logistical issues. These steps ensure a successful ART regimen switch.

Alignment and discordances in perceptions and experiences of shared decision making (SDM) among bladder cancer (BC) patients and their care team.

2021 ◽  
Vol 39 (6_suppl) ◽  
pp. 420-420
Author(s):  
Karim Chamie ◽  
Sarah P. Psutka ◽  
Taral Patel ◽  
Manojkumar Bupathi ◽  
Breanne Y Farris ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Bladder Cancer ◽  
Side Effects ◽  
Treatment Options ◽  
Healthcare Providers ◽  
Shared Decision ◽  
Life Changes ◽  
Patient Goals

420 Background: To align BC treatment with patient goals, it is vital that healthcare providers (HCPs) engage their patients (pts) in SDM for treatment planning. We assessed alignment and discordances on aspects of SDM among BC pts and their urology and oncology teams. Methods: Between 05/2020 and 06/2020, surveys were administered to 53 pts with BC (48% female, mean age 68 years) and 23 HCPs, as part of in-clinic and virtual collaborative patient education sessions across 5 US-based practices. Surveys were designed to assess perceptions, preferences, and experiences with regard to SDM during BC care. Results: Survey findings indicated key alignments and discordances in pts’ reported experience and HCPs’ perceptions of the use of SDM in BC care. HCPs and pts identified the same top 2 patient goals for BC care: 1) preventing progression/recurrence (61% pts, 48% HCPs) and 2) maintaining quality of life (35% pts, 78% HCPs). When asked to identify patient’s top challenges for pts in BC care, both pts and HCPs indicated post-treatment aspects as the top challenge, though pts indicated managing side effects/serious worry about side effects from treatment as the top challenge (22%); whereas, HCPs were split evenly between managing side effects from treatment (26%) and managing life changes as a result of urinary diversion (26%). HCPs overestimated the effect that fatigue and worry had on pts capacity for SDM: only 9% of pts indicated worry or fatigue as a barrier to SDM, but 65% of HCPs indicated this as a likely barrier. Furthermore, the patient experience of SDM differed from HCP perception of SDM (Table); for some aspects of SDM, such as explaining different treatment options, explaining pros/cons of treatment options, and overall involvement in treatment decisions, fewer HCPs indicated that these aspects of SDM always or usually occurred as compared to pts. Conclusions: These findings reveal important alignments and discordances between pts and HCPs with regard to BC care and SDM, which may inform future bladder cancer and SDM initiatives. [Table: see text]

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.

scholarly journals Biopsychosocial and clinical characteristics in patients with resected breast and colon cancer at the beginning and end of adjuvant treatment

BMC Cancer ◽  
2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Teresa García-García ◽  
Alberto Carmona-Bayonas ◽  
Paula Jimenez-Fonseca ◽  
Carlos Jara ◽  
Carmen Beato ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Decision Making ◽  
Colon Cancer ◽  
Cancer Patients ◽  
Adjuvant Treatment ◽  
Perceived Social Support ◽  
Shared Decision ◽  
Breast Cancer Patients

Abstract Background The aim of this study was to analyze biopsychosocial factors affecting how patients cope with cancer and adjuvant treatment and to appraise psychological distress, coping, perceived social support, quality of life and SDM before and after adjuvant treatment in breast cancer patients compared to colon cancer patients. Methods NEOcoping is a national, multicenter, cross-sectional, prospective study. The sample comprised 266 patients with colon cancer and 231 with breast cancer. The instruments used were the Brief Symptom Inventory (BSI), Mini-Mental Adjustment to Cancer (Mini-MAC), Multidimensional Scale of Perceived Social Support (MSPSS), Shared Decision-Making Questionnaire-Patient (SDM-Q-9) and Physician’s (SDM-Q-Doc), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ). Results Breast cancer patients reacted worse to the diagnosis of cancer with more symptoms of anxiety, depression, and somatization, and were less satisfied with their involvement than those with colon cancer (p = 0.003). Participants with colon cancer were older and had more physical symptoms and functional limitations at the beginning of adjuvant treatment, while there were scarcely any differences between the two groups at the end of adjuvancy, at which time both groups suffered greater psychological and physical effects and scored lower on coping strategies, except for anxious preoccupation. Conclusions Breast cancer patients need more information and involvement of the oncologist in shared decision-making, as well as and more medical and psychological support when beginning adjuvant treatment. Both breast and colon cancer patients may require additional psychological care at the end of adjuvancy.

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 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.

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

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