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"Patient Participation"
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Older Adult Participation in Cancer Clinical Trials: A Systematic Review of Barriers and Interventions
by
Le-Rademacher, Jennifer G
,
Djulbegovic, Benjamin
,
Mohile, Supriya G
in
Cancer
,
Cancer research
,
Clinical trials
2021
Cancer is a disease of aging and, as the world's population ages, the number of older persons with cancer is increasing and will make up a growing share of the oncology population in virtually every country. Despite this, older patients remain vastly underrepresented in research that sets the standards for cancer treatments. Consequently, most of what we know about cancer therapeutics is based on clinical trials conducted in younger, healthier patients, and effective strategies to improve clinical trial participation of older adults with cancer remain sparse. For this systematic review, the authors evaluated published studies regarding barriers to participation and interventions to improve participation of older adults in cancer trials. The quality of the available evidence was low and, despite a literature describing multifaceted barriers, only one intervention study aimed to increase enrollment of older adults in trials. The findings starkly amplify the paucity of evidence-based, effective strategies to improve participation of this underrepresented population in cancer trials. Within these limitations, the authors provide their opinion on how the current cancer research infrastructure must be modified to accommodate the needs of older patients. Several underused solutions are offered to expand clinical trials to include older adults with cancer. However, as currently constructed, these recommendations alone will not solve the evidence gap in geriatric oncology, and efforts are needed to meet older and frail adults where they are by expanding clinical trials designed specifically for this population and leveraging real-world data.
Journal Article
Patient involvement in the development of patient‐reported outcome measures: a scoping review
by
Boer, Dolf
,
Delnoij, Diana
,
Wiering, Bianca
in
Chronic Disease
,
Chronic diseases
,
Chronic fatigue syndrome
2017
Background
Patient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development
Objective
This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time.
Search strategy
Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register.
Inclusion criteria
Studies were included if they described a new PROM development.
Data extraction
Basic information and information regarding patient involvement in development phases was recorded.
Main results
A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time.
Conclusions
Although patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.
Journal Article
Patient-Centered Healthcare
2020,2019
Patient-centered care is a way of thinking and doing things that considers patients partners in the development of a healthcare plan designed to meet their specific needs. It involves knowledge of the individual as a person and integrates that knowledge into their plan of care.
Patient-centered care is central to the discussion of healthcare at the insurance and hospital-level. The quality of the service is evaluated more deeply from all the healthcare components, including insurance payments. It is the start of a new client- and patient-centered healthcare, which is based on a profound respect for patients and the obligation to care for them in partnership with them.
Healthcare has been lacking a strategy to teach patients how to take care of themselves as much as they possibly can. In countries with socialized healthcare, patients don’t go to the emergency room unless it is necessary; they have a physician on call instead. This affords more personalized care and avoids patients getting lost in the hospital system.
This book advocates the critical role of patients in the health system and the need to encourage healthy living. We need to educate patients on how to be more self-aware, giving them the tools to better understand what they need to do to achieve healthy lifestyles, and the protocols and policies to sustain a better life.
Prevention has always been the pinnacle of medical care. It’s time to highlight and share this approach with patients and involve them as active participants in their own healthcare. This is the method on which to build the new healthcare for the next century.
ABOUT THE AUTHOR. INTRODUCTION. SECTION 1: PATIENT FIRST. CHAPTER 1 PATIENT-CENTERED CARE. CHAPTER 2 KEY TO ACCESS HEALTH CARE. CHAPTER 3 ADDRESS PATIENTS QUESTIONS AND NEEDS. CHAPTER 4 SHARING VISION OF CARE. CHAPTER 5 MEETING PATIENTS EXPECTATIONS AND SATISFACTIONS. CHAPTER 6 FEAR AND ANXIETY RELIEF: FAMILY CARE. CHAPTER 7 ENGAGING PATIENTS. SECTION 2: TEAM APPROACH. CHAPTER 8 BUILDING TEAM APPROACH AND COMMUNICATIONS. CHAPTER 9 COMMON GROUND WITH THE PATIENTS. CHAPTER 10 CONFUSION OVER CARE. CHAPTER 11 COORDINATE PATIENTS PARTECIPATION. CHAPTER 12 SCHEDULING. CHAPTER 13 DO PATIENTS WANT TO PARTECIPATE? SECTION 3: THE TRUE NORTH. CHAPTER 14 TRANSPARENCY AND HONESTY. CHAPTER 15 THE TRUE NORTH ALIGNEMENT. CHAPTER 16 QUALITY VALUES. CHAPTER 17 OPTIMIZED HEALTH CARE SERVICES. CHAPTER 18 HEALING RELATIONSHIPS. CHAPTER 19 INFORMATION POWER. CHAPTER 20 THE ROLE OF TECHNOLOGY AND TELEMEDICINE.. SECTION 4: LONG TERM AND CHRONIC CARE. CHAPTER 21 CONTINUITY OF PATIENTS CARE AND ADVANCE DIRECTIVES. CHAPTER 22 INVOLVEMENT OF FAMILY MEMBERS AND CAREGIVERS. CHAPTER 23 LONG TERM FACILITIES. CHAPTER 24 COMFORT LEVEL. CHAPTER 25 CHRONIC CONDITIONS AND PAIN MANAGEMENT. CHAPTER 26 DIGNITY IN DEMENTIA. SECTION 5: BUILDING QUALITY SYSTEMS. CHAPTER 27 PATIENTS FLOW AND PRESS GAINEY SCORE. CHAPTER 28 CLINICAL STAFF AND BETTER PATIENTS EXPERIENCE. CHAPTER 29 FALL PREVENTION: ENGAGING THE FAMILY. CHAPTER 30 HAND HYGIENE. CHAPTER 31 TIME OUT FOR BETTER QUALITY. CHAPTER 32 SET UP STRATEGIES. SECTION 6: HEALTH CARE CHANGE OF THINKING. CHAPTER 33 THE CHANGE OF THINKING. CHAPTER 34 PHYSICAL WELLNESS. CHAPTER 35 CIRCLE OF HEALTH. CHAPTER 36 DIFFICULT PATIENTS. CHAPTER 37 PSYCHOLOGICAL SUPPORT, DEPRESSION, SUICIDE. CHAPTER 38 RESPECT PATIENT CHOICES AND AUTONOMY.
Eldo E. Frezza, MD, MBA, FACS has been a board-certified physician for more than 20 years with 8 years of experience in health administration. He has a strong ability to improve financial, supply chain, quality and patient safety operations. He is a visible, hands-on leader with advisory expertise. He has a progressive understanding of flow and throughput with a reputation for establishing improvements and has a knowledge of utilization management.
He has served as Chief of Service and Chief of Surgery where he provided leadership and direction to successful transition from operating loss, to financial profit while drastically improving emergency and OR throughput. He also served as Director of Surgical Services for a private hospital where he assessed operations and established new metrics for OR; developed and implemented revised supply chain procedures for the OR to improve efficiency and achieve significant cost savings.
He has published books in Business and Ethics in healthcare including, The Business of Surgery, published by Cine-Med, copyright 2007; Professionalism & Ethics in a Surgical Practice published by Cine-Med, copyright 2008; and numerous articles. He received his medical degree Cum Laude from the University of Padua School of Medicine, Italy and his MBA in Health Organization management from Texas Tech Rawls School of Business, Lubbock, TX.
Shared Decision Making: A Model for Clinical Practice
by
Kinnersley, Paul
,
Thomson, Richard
,
Dodd, Carole
in
Biological and medical sciences
,
Clinical trials
,
Cooperative Behavior
2012
The principles of shared decision making are well documented but there is a lack of guidance about how to accomplish the approach in routine clinical practice. Our aim here is to translate existing conceptual descriptions into a three-step model that is practical, easy to remember, and can act as a guide to skill development. Achieving shared decision making depends on building a good relationship in the clinical encounter so that information is shared and patients are supported to deliberate and express their preferences and views during the decision making process. To accomplish these tasks, we propose a model of how to do shared decision making that is based on
choice, option
and
decision talk
. The model has three steps: a) introducing choice, b) describing options, often by integrating the use of patient decision support, and c) helping patients explore preferences and make decisions. This model rests on supporting a process of deliberation, and on understanding that decisions should be influenced by exploring and respecting “what matters most” to patients as individuals, and that this exploration in turn depends on them developing informed preferences.
Journal Article
ACT made simple : an easy-to-read primer on acceptance and commitment therapy
by
Harris, Russ, 1938- author
in
Acceptance and commitment therapy.
,
Cognitive Behavioral Therapy methods.
,
Adaptation, Psychological.
2019
\"Now fully-revised and updated, this second edition of ACT Made Simple includes new information and chapters on self-compassion, flexible perspective taking, working with trauma, and more. Why is it so hard to be happy? Why is life so difficult? Why do humans suffer so much? And what can we realistically do about it? No matter how rewarding your job, as a mental health professional, you may sometimes feel helpless in the face of these questions. You are also well aware of the challenges and frustrations that can present during therapy. If you're looking for ways to optimize your client sessions, consider joining the many thousands of therapists and life coaches worldwide who are learning acceptance and commitment therapy (ACT). With a focus on mindfulness, client values, and a commitment to change, ACT is proven-effective in treating depression, anxiety, stress, addictions, eating disorders, schizophrenia, borderline personality disorder (BPD), and myriad other psychological issues. It's also a revolutionary new way to view the human condition--packed full of exciting new tools, techniques, and strategies for promoting profound behavioral change. A practical primer, ideal for ACT newcomers and experienced ACT professionals alike, ACT Made Simple offers clear explanations of the six ACT processes and a set of real-world tips and solutions for rapidly and effectively implementing them in your practice. This book gives you everything you need to start using ACT with your clients for impressive results. Inside, you'll find: scripts, exercises, metaphors, and worksheets to use with your clients; a session-by-session guide to implementing ACT; transcripts from therapy sessions; guidance for creating your own therapeutic techniques and exercises; and practical tips to overcome \"therapy roadblocks.\" This book aims to take the complex theory and practice of ACT and make it accessible and enjoyable for therapists and clients\"-- Provided by publisher.
Consumer-Based Wearable Activity Trackers Increase Physical Activity Participation: Systematic Review and Meta-Analysis
2019
The range of benefits associated with regular physical activity participation is irrefutable. Despite the well-known benefits, physical inactivity remains one of the major contributing factors to ill-health throughout industrialized countries. Traditional lifestyle interventions such as group education or telephone counseling are effective at increasing physical activity participation; however, physical activity levels tend to decline over time. Consumer-based wearable activity trackers that allow users to objectively monitor activity levels are now widely available and may offer an alternative method for assisting individuals to remain physically active.
This review aimed to determine the effects of interventions utilizing consumer-based wearable activity trackers on physical activity participation and sedentary behavior when compared with interventions that do not utilize activity tracker feedback.
A systematic review was performed searching the following databases for studies that included the use of a consumer-based wearable activity tracker to improve physical activity participation: Cochrane Controlled Register of Trials, MEDLINE, PubMed, Scopus, Web of Science, Cumulative Index of Nursing and Allied Health Literature, SPORTDiscus, and Health Technology Assessments. Controlled trials of adults comparing the use of a consumer-based wearable activity tracker with other nonactivity tracker-based interventions were included. The main outcome measures were physical activity participation and sedentary behavior. All studies were assessed for risk of bias, and the Grades of Recommendation, Assessment, Development, and Evaluation system was used to rank the quality of evidence. The guidelines of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement were followed. A random-effects meta-analysis was completed on the included outcome measures to estimate the treatment effect of interventions that included an activity tracker compared with a control group.
There was a significant increase in daily step count (standardized mean difference [SMD] 0.24; 95% CI 0.16 to 0.33; P<.001), moderate and vigorous physical activity (SMD 0.27; 95% CI 0.15 to 0.39; P<.001), and energy expenditure (SMD 0.28; 95% CI 0.03 to 0.54; P=.03) and a nonsignificant decrease in sedentary behavior (SMD -0.20; 95% CI -0.43 to 0.03; P=.08) following the intervention versus control comparator across all studies in the meta-analyses. In general, included studies were at low risk of bias, except for performance bias. Heterogeneity varied across the included meta-analyses ranging from low (I
=3%) for daily step count through to high (I
=67%) for sedentary behavior.
Utilizing a consumer-based wearable activity tracker as either the primary component of an intervention or as part of a broader physical activity intervention has the potential to increase physical activity participation. As the effects of physical activity interventions are often short term, the inclusion of a consumer-based wearable activity tracker may provide an effective tool to assist health professionals to provide ongoing monitoring and support.
Journal Article