Quantification and expert evaluation of evidence for chemopredictive biomarkers to personalize cancer treatment.

Predictive biomarkers have the potential to facilitate cancer precision medicine by guiding the optimal choice of therapies for patients. However, clinicians are faced with an enormous volume of often-contradictory evidence regarding the therapeutic context of chemopredictive biomarkers.We extensively surveyed public literature to systematically review the predictive effect of 7 biomarkers claimed to predict response to various chemotherapy drugs: ERCC1-platinums, RRM1-gemcitabine, TYMS-5-fluorouracil/Capecitabine, TUBB3-taxanes, MGMT-temozolomide, TOP1-irinotecan/topotecan, and TOP2A-anthracyclines. We focused on studies that investigated changes in gene or protein expression as predictors of drug sensitivity or resistance. We considered an evidence framework that ranked studies from high level I evidence for randomized controlled trials to low level IV evidence for pre-clinical studies and patient case studies.We found that further in-depth analysis will be required to explore methodological issues, inconsistencies between studies, and tumor specific effects present even within high evidence level studies. Some of these nuances will lend themselves to automation, others will require manual curation. However, the comprehensive cataloging and analysis of dispersed public data utilizing an evidence framework provides a high level perspective on clinical actionability of these protein biomarkers. This framework and perspective will ultimately facilitate clinical trial design as well as therapeutic decision-making for individual patients

THE EFFECTS OF A DEVICE-MEDIATED LINGUAL STRENGTHENING PROTOCOL ON RADIATION AND CHEMORADIATION INDUCED DYSPHAGIA

Introduction: Dysphagia, or disordered swallowing, is frequently found in patients with head and neck cancer due to side-effects of non-surgical interventions including radiation and chemoradiation therapies. Device-mediated lingual strengthening exercises have a theoretical basis for effectively mitigating dysphagia in this population, but these exercises have not been shown to be beneficial in the research literature to date. The primary goal of this study was to describe the effects of a device-mediated lingual strengthening protocol, added to standard behavioral therapy, on overall swallowing function as reflected by videofluoroscopic analysis. The secondary goal was to describe performance related observations regarding participant characteristics. Methods: This was a secondary examination of the data from six participants in a larger prospective experimental study. Three participants, assigned to the control group, completed “standard dysphagia therapy,” and three participants, assigned to the experimental group, completed a device-mediated lingual strengthening protocol in addition to “standard dysphagia therapy.” Videofluoroscopic data was collected for all six participants “pre” and “post” treatment. Measurements of videofluoroscopic data were taken for seven durational swallowing kinematic measures, penetration-aspiration scale scores, and pharyngeal retention scale scores. These measurements were taken to assess airway protection, pharyngeal reside, and overall biomechanical efficiency. Only penetration-aspiration scale scores and pharyngeal retention scores were analyzed, due to feasibility. Analysis consisted of mean differences and a normalization to baseline data transformation. Results: Findings revealed a lack of consistent improvements in all participants across all dependent variables. However, two observations were made regarding the medical characteristics of the participants. Specifically, the greatest performance was seen by participants who had less than one year between finishing chemoradiation therapy and commencing dysphagia treatment and who presented with primary lesions in the tonsillar region. Discussion: No consistent improvements were found to support the addition of device-mediated lingual strengthening exercise to “standard dysphagia therapy,” possibly due to variations in the small sample size and flaws in methodology. However, observations indicate that this form of intervention may be useful for patients seeking dysphagia treatment early with primary lesions in the tonsillar region

Including the voice of children:Towards patient-centered care

Patient-centered care (PCC) is characterized by the provision of care that respects and responds to individual patient preferences, needs and values, and ensures that patient’s wishes guide all clinical decisions. PCC places the patient, not the disease, at the center of health care and promotes a collaboration between patient, family, and clinicians to provide care that is tailored to the patient’s wishes and needs. Although the importance of PCC is recognized, its implementation is difficult because it requires a different mindset and changing roles of patients, parents, and clinicians. This thesis focused on scientific approaches and the development of tools to enhance PCC in children. Three aspects of PCC were examined; pediatric patient engagement, Patient Reported Outcome Measures (PROMs), and Patient Reported Experience Measures (PREMs). The first part of the thesis provides a synopsis of the existing literature on pediatric patient engagement and discusses the development of a tool to enhance pediatric patient engagement. The second part of the thesis focuses on facilitators and barriers in the implementation of PROMs in clinical practice, using the KLIK PROM portal and the PROMIS measures as an example. The last part of the thesis provides an overview of the available PREMs in pediatrics

Key Components for an Ethics Consultation Curriculum

Due to a lack of formal credentials for clinical ethics consultants, the professionalization of clinical ethics as a normative discipline in contemporary American health care is diminished amongst other health care professionals. While medical specialties, organizational leadership positions, and other miscellaneous health care occupations possess governing bodies that posit credentials that justify these roles, clinical ethics consultants lack a standard of competence. While this gap has been temporarily reconciled by individual employer criteria, a national standard that attempts to educate and demonstrate a clinical ethicist’s abilities does not exist. Still, various attempts have been made to establish a certification program for clinical ethicists. These programs contain central concepts in ethics consultation and are effective in demonstrating the impact of a clinical ethicist’s knowledge. However, the educational facets entailed in proposed certification programs that clinical ethicist ought to be familiar with do not include information surrounding the nature of clinical ethics and the role a clinical ethicist must embody in order to perform his job effectively. The central supposition of this dissertation is that additional work needs to be completed around clinical ethics education and certification. While no formal certification or educational standard exists for clinical ethicists, this dissertation proposes key components for an ethics consultation curriculum. The key components in this dissertation emphasize the nature and value of virtue in clinical ethics and the role virtue plays in orchestrating an effective certification program for ethicists. This dissertation aims to do the following: (i) Clarify and demonstrate the problems associated with a lack of formal certification standard for ethicists; (ii) Define and examine the nature of clinical ethics and the role philosophy plays in this line of work; (iii) Explain and demonstrate the effectiveness of teaching virtues as key components for a formalized ethics consultation curriculum; and (iv) Illustrate how key components for an ethics consultation curriculum manifest in an educational venue for clinical ethicists. This dissertation seeks to contribute a novel approach to educating and certifying clinical ethicists in the United States. By combining knowledge points associated with moral philosophy and medicine with general skill objectives for ethics consultants, this dissertation aids in developing analytic moral reasoning skills for clinical ethicists which in turn fosters the overall education and professional development of clinical ethics consultants

Online assisted psychological therapy for targeted populations with inflammatory bowel disease.

Introduction: Inflammatory bowel disease (IBD) is a chronic condition affecting over 300,000 people in the UK. Despite a high level of comorbid mental disorders, most patients do not receive psychological help. As a result of scarce healthcare resources in IBD, technology is increasingly being recognised as a useful tool to manage anxiety and depression associated with IBD. However, there is no online psychotherapy programme for patients with IBD and comorbid anxiety and/or depression available in the UK. Aim: The aim of this thesis was to develop a prototype online psychological intervention for patients with IBD and comorbid anxiety and/or depression. Methods: The development of the prototype followed the Medical Research Council (MRC) framework for complex interventions (the development phase). Firstly, theoretical evidence on the effectiveness of online psychological therapy in gastrointestinal diseases was gathered in a systematic review. Secondly, a qualitative study investigated patients' with IBD and comorbid anxiety and/or depression and their service providers' views about lived experiences with IBD and about an online psychological intervention. Finally, the recommendation for the online psychological intervention for this population was provided. Results: The evidence on the usefulness of online psychological interventions in gastroenterology, and IBD specifically, is scarce. There is a need for more robust trials of psychotherapy in IBD, particularly in patients with IBD and anxiety and/or depression. Patients had positive attitude towards online psychological intervention, while health professionals were unsure about patients' participation in the intervention. Based on the theoretical evidence and the qualitative study findings the recommendations for the future interventions were developed. Conclusions: This PhD project demonstrated the need for an online psychological intervention for patients with IBD and comorbid anxiety and/or depression. The intervention based on the prototype could be tested in a future trial. The productive collaborations between patients, stakeholders and researchers in co-designing of an online psychological intervention are essential during the development, evaluation and implementation of the intervention

A study of Chinese cancer patients' health information preferences and practices

Health communications are pivotal to cancer patients’ care and management, yet no empirical knowledge exists that could explain how cancer patients’ information preferences (needs and wants) and practices (seeking, avoiding, sharing, and accepting) interact and influence their health outcomes, especially for Chinese cancer patients. This grounded theory study focuses on identifying factors that shape the relationship between Chinese cancer patients’ health information preferences and practices, with close consideration of Chinese cultural context. This study recruited eighteen cancer patients to be interviewed using the purposive theoretical sampling technique, with data analysis guided by the constant comparative method. The basic social process emerged in response to the research question is: interaction with health information is a family activity. This basic social process is further manifested in the theoretical categories identified: getting prepared for managing cancer, prioritizing questions according to family needs, balancing truth, trust, and respect, navigating around information sources (two sub-categories: nurturing the support network and focusing on productive interactions), and responding to culturally-sensitive cancer care. The findings suggest that it is important to acknowledge and address the family’s indispensable role in Chinese cancer patients’ interaction with health information. What might be considered self-management of cancer among Chinese cancer patients appears to be more akin to family-management of cancer. Also, Chinese cancer patients’ other culturally-sensitive care needs (e.g., socially appropriate interaction with healthcare professionals or HCPs) also emerged as important, as these patients’ health information preferences and practices center on the need to be culturally respectful. Results of this study suggest that it is imperative for HCPs, when responding to patients’ questions and concerns, to adopt culturally-sensitive communication styles. This includes empathetic consideration of the interests and characteristics of patients and their family members in order to achieve respectful and constructive patient-family-provider communication. The adoption and diffusion of these empathetic communication styles have the potential to improve patients’ health outcomes (e.g., quality of life) along with optimizing valuable medical resources. This dissertation discusses, in more detail, the implications that can emerge with the adoption and diffusion of empathetic communication styles.Advertisin

The EBMT Handbook

This Open Access edition of the European Society for Blood and Marrow Transplantation (EBMT) handbook addresses the latest developments and innovations in hematopoietic stem cell transplantation and cellular therapy. Consisting of 93 chapters, it has been written by 175 leading experts in the field. Discussing all types of stem cell and bone marrow transplantation, including haplo-identical stem cell and cord blood transplantation, it also covers the indications for transplantation, the management of early and late complications as well as the new and rapidly evolving field of cellular therapies. This book provides an unparalleled description of current practices to enhance readers’ knowledge and practice skills

Patient Safety and Quality: An Evidence-Based Handbook for Nurses

Compiles peer-reviewed research and literature reviews on issues regarding patient safety and quality of care, ranging from evidence-based practice, patient-centered care, and nurses' working conditions to critical opportunities and tools for improvement