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The assessment of patient reported outcomes and health-related quality of life continue to be rapidly evolving areas of research and this new edition reflects the development within the field from an emerging subject to one that is an essential part of the assessment of clinical trials and other clinical studies.

\"The standard reference in the field, this acclaimed work synthesizes findings from hundreds of carefully selected studies of mental health treatments for children and adolescents. Chapters on frequently encountered clinical problems systematically review the available data, identify gaps in what is known, and spell out recommendations for evidence-based practice. The authors draw on extensive clinical experience as well as research expertise. Showcasing the most effective psychosocial and pharmacological interventions for young patients, they also address challenges in translating research into real-world clinical practice. New to This Edition *Incorporates over a decade of research advances and evolving models of evidence-based care. *New chapter topic: child maltreatment. *Separate chapters on self-injurious behavior, eating disorders, and substance use disorders (previously covered in a single chapter on self-harming disorders). *Expanded chapters on depression, anxiety, and conduct disorder. *Includes reviews of the expanding range of manualized psychosocial \"treatment packages\" for children.\"-- Provided by publisher.

Recent therapeutic advances in juvenile idiopathic arthritis (JIA) have made remission an achievable goal for most patients. Reaching this target leads to improved outcomes. The objective was to develop recommendations for treating JIA to target. A Steering Committee formulated a set of recommendations based on evidence derived from a systematic literature review. These were subsequently discussed, amended and voted on by an international Task Force of 30 paediatric rheumatologists in a consensus-based, Delphi-like procedure. Although the literature review did not reveal trials that compared a treat-to-target approach with another or no strategy, it provided indirect evidence regarding an optimised approach to therapy that facilitated development of recommendations. The group agreed on six overarching principles and eight recommendations. The main treatment target, which should be based on a shared decision with parents/patients, was defined as remission, with the alternative target of low disease activity. The frequency and timeline of follow-up evaluations to ensure achievement and maintenance of the target depend on JIA category and level of disease activity. Additional recommendations emphasise the importance of ensuring adequate growth and development and avoiding long-term systemic glucocorticoid administration to maintain the target. All items were agreed on by more than 80% of the members of the Task Force. A research agenda was formulated. The Task Force developed recommendations for treating JIA to target, being aware that the evidence is not strong and needs to be expanded by future research. These recommendations can inform various stakeholders about strategies to reach optimal outcomes for JIA.

This book defends medical nihilism, which is the view that we should have little confidence in the effectiveness of medical interventions. If we consider the frequency of failed medical interventions, the extent of misleading evidence in medical research, the thin theoretical basis of many interventions, and the malleability of empirical methods in medicine, and if we employ our best inductive framework, then our confidence in the effectiveness of medical interventions ought to be low. Part I articulates theoretical and conceptual groundwork, which offers a defense of a hybrid theory of disease, which forms the basis of a novel account of effectiveness, and this is applied to pharmacological science and to issues such as medicalization. Part II critically examines details of medical research. Even the very best methods in medical research, such as randomized trials and meta-analyses, are malleable and suffer from various biases. Methods of measuring the effectiveness of medical interventions systematically overestimate benefits and underestimate harms. Part III summarizes the arguments for medical nihilism and what this position entails for medical research and practice. To evaluate medical nihilism with care, the argument is stated in formal terms. Medical nihilism suggests that medical research must be modified, that clinical practice should be less aggressive in its therapeutic approaches, and that regulatory standards should be enhanced.

Objectives To validate the two recently developed disease activity indexes for assessment of primary Sjögren's syndrome (SS): the European League Against Rheumatism (EULAR) SS Patient Reported Index (ESSPRI) and the EULAR SS Disease Activity Index (ESSDAI). Methods A prospective international 6-month duration validation study was conducted in 15 countries. At each visit, physicians completed ESSDAI, SS disease activity index (SSDAI), Sjögren's Systemic Clinical Activity Index (SCAI) and physician global assessment (PhGA); and patients completed ESSPRI, Sicca Symptoms Inventory (SSI), Profile of Fatigue and Discomfort (PROFAD) and patient global assessment (PGA). Psychometric properties (construct validity, responsiveness and reliability) were evaluated and compared between scores. Results Of the 395 patients included, 145 (37%) and 251 (64%) had currently active or current or past systemic manifestations, respectively. EULAR scores had higher correlation with the gold standard than other scores (ESSDAI with PhGA: r=0.59; ESSRPI with PGA: r=0.70). Correlations between patient and systemic scores were very low (ranging from 0.07 to 0.29). All systemic scores had similar large responsiveness in improved patients. Responsiveness of patient scores was low but was significantly higher for ESSPRI compared with SSI and PROFAD. Reliability was very good for all scores. Conclusions ESSDAI and ESSPRI had good construct validity. All scores were reliable. Systemic scores had a large sensitivity to change in patients whose disease activity improves. Patient scores had a small sensitivity to change, however, significantly better for ESSPRI. Systemic and patient scores poorly correlated, suggesting that they are 2 complementary components that should be both evaluated, but separately.

The success of the Apgar score demonstrates the astounding power of an appropriate clinical instrument. This down-to-earth book provides practical advice, underpinned by theoretical principles, on developing and evaluating measurement instruments in all fields of medicine. It equips you to choose the most appropriate instrument for specific purposes. The book covers measurement theories, methods and criteria for evaluating and selecting instruments. It provides methods to assess measurement properties, such as reliability, validity and responsiveness, and interpret the results. Worked examples and end-of-chapter assignments use real data and well-known instruments to build your skills at implementation and interpretation through hands-on analysis of real-life cases. All data and solutions are available online. This is a perfect course book for students and a perfect companion for professionals/researchers in the medical and health sciences who care about the quality and meaning of the measurements they perform.

Introduction Veteran patient partnerships in research improve patient‐centred healthcare outcomes within US Department of Veterans Affairs (VA) medical centres. To achieve this, researchers must contextualize perspectives, motivations, and contributions of Veteran patients engaged in research (VPERs) as valued consultants within a complex healthcare environment. Our objective was to investigate best practices for research teams partnering with VPERs by utilizing the expertise of our research team's own VPER. The parent project of this case study, Hybrid Controlled Trial to Implement Collaborative Care in General Mental Health, was approved by the VA Boston Healthcare System Institutional Review Board and deemed research. Objective Provide three key recommendations when engaging military Veterans and/or VA Veteran Patients in research to facilitate sustained teamwork and integration. Study Design and Methodologies This paper is structured as a qualitative descriptive data‐based case study. Two team members used a semi‐structured conversation guide to interview Dr. Colleen Turner, MSW, PhD, Lt. Col. (Ret., US Air Force Reserves) for one hour about her experience as a VPER on the 5‐year research project. This manuscript was then written collaboratively by members of the team, with heavy influence and editing from Colleen for details and accuracy. Results Improving mental healthcare for Veterans motivated Colleen to serve as a VPER from 2015 to 2020. She used organizational and provider‐level mental health expertise gained during her Air Force service, applied her graduate social work training, and offered her experience as a VA patient. A diverse background and an ability to codeswitch helped her navigate the study and enriched the team's partnership dynamics. Through a qualitative interview with Colleen about her experience as a VPER, three recommendations emerged for research teams to better situate VPERs on studies: (1) ensure initial project literacy and provide ongoing support, (2) incorporate VPER goals into project work and (3) communicate both (a) offers of reasonable compensation and professional acknowledgement and (b) visible patient‐centred outcomes. Conclusion This case study deepens the understanding of how to meaningfully incorporate VPERs into a partnered research study. Engagement starts early, continues throughout the study, and culminates with well‐communicated outcomes as they pertain to the researchers’ and VPERs’ goals. These recommendations closely align with widely accepted community‐engaged research practices and may guide ongoing and future studies to further improve patient engagement in research and the collaboration experiences of VPERs. Patient or Public Contribution This manuscript focuses on Colleen's contributions to the design and conduct of a hybrid implementation/effectiveness study. Colleen also contributed to the manuscript itself. Uniquely, Dr. Turner brought her experience as a practitioner with master's and doctoral degrees in social work, as an institutional communications analyst, and as an independent author. Because of this, she was able to bring even more expertise to the project beyond just that of a patient, which is valuable in its own right. Colleen was involved in the research project from inception to conclusion, including study design, general analysis, and manuscript publication, with overall consultation throughout.

Context Engaging patients in shared decision making involves patient knowledge of treatment options and physician elicitation of patient preferences. Objective Our aim was to explore patient and physician perceptions of shared decision making in clinical encounters for cancer care. Design Patients and physicians were asked open‐ended questions regarding their perceptions of shared decision making throughout their cancer care. Transcripts of interviews were coded and analysed for shared decision‐making themes. Setting and participants At an academic medical centre, 20 cancer patients with a range of cancer diagnoses, stages of cancer and time from diagnosis, and eight physicians involved in cancer care were individually interviewed. Discussion and conclusions Most physicians reported providing patients with written information. However, most patients reported that written information was too detailed and felt that the physicians did not assess the level of information they wished to receive. Most patients wanted to play an active role in the treatment decision, but also wanted the physician's recommendation, such as what their physician would choose for him/herself or a family member in a similar situation. While physicians stated that they incorporated patient autonomy in decision making, most provided data without making treatment recommendations in the format preferred by most patients. We identified several communication gaps in cancer care. While patients want to be involved in the decision‐making process, they also want physicians to provide evidence‐based recommendations in the context of their individual preferences. However, physicians often are reluctant to provide a recommendation that will bias the patient.

Background: Bonded composite bite turbos are an efficient tool in the treatment of deep bite malocclusion. Patient satisfaction with orthodontic appliances has been correlated with treatment success. The aim of this study is to evaluate the level of patient satisfaction associated with bonded composite anterior bite turbos in deep bite treatment. Materials and Methods: This study was a one-arm prospective clinical study. Sixty patients, younger than 25 years old with permanent dentition and increased anterior overbite were treated with composite bite turbos bonded to the maxillary central incisors. A questionnaire form using the Likert scale with five responses (Very Unpleasant, Unpleasant, Acceptable, Pleasant, and Very Pleasant) was used by patients to document their satisfaction and feedback regarding the bite turbos after 1 week and 1 month. Statistical analyses with the chi-squared test was used to analyze the data for statistical significance. Results: Spearman’s correlation coefficient was used to determine the correlation between age and satisfaction score, while the Mann–Whitney U test was used to compare the satisfaction scores between males and females. There was a statistically significant difference between all patient responses after 1 week and 1 month. A significant decline occurred in the unpleasant response from 10% after 1 week to 0% after 1 month; acceptable response from 36.7% after 1 week to 3.3% after 1 month. There was a statistically significant increase in the pleasant and very pleasant responses. Minor speech and eating difficulties were reported during the first week by 46.7% of patients. Conclusions: Anterior bite turbos made from Triad Gel and bonded to palatal surfaces of both maxillary central incisors using a Mini-Mold tip with 5 mm depth tip will most likely lead to an acceptance rate of 90% after 1 week and 100% acceptance rate after 1 month, without any problems in 53.3% of the patients. Short follow-up periods and lack of control group are the main limitations in this study. Trial registration: Registered at ClinicalTrials.gov (NCT07143916).