Translation of a patient-surgeon relationship assessment instrument (Q-PASREL) into six languages.

The Questionnaire for Patient-Surgeon Relationship (Q-PASREL) is a French "Patient-Reported Experience Measure" for hand surgery patients. It is the only one which considers the impact of the patient-surgeon relationship on time to return to work and cooperation by the surgeon for administrative issues. It has been shown that a good Q-PASREL score is associated with shorter sick leave and faster return to work. To make this instrument available to more countries, we translated the Q-PASREL into six languages (English, Spanish, German, Italian, Arabic and Persian), following a validated "translation and cultural adaptation" process guideline. This process includes multiple forward and backward translations, discussions and reconciliations with final harmonization and cognitive debriefing. For each language, a team was set up, comprising a key in-country hand surgery consultant, native target-language speaker and fluent in French, and several forward and back translators. The final translated versions were reviewed and approved by the project manager. The six versions of Q-PASREL are now available in the appendices of this publication.

A comunicação de más notícias em Unidade de Terapia Intensiva: um estudo qualitativo com médicos experientes e novatos / Communicating bad news in the Intensive Care Unit: a qualitative study with experienced and novice physicians / La communication des mauvaises nouvelles dans l'unité de soins intensifs: Une étude qualitative auprès de médecins expérimentés et novices / La comunicación de malas noticias en la Unidad de Cuidados Intensivos: un estudio cualitativo con médicos experimentados y novatos

Resumo A Unidade de Terapia Intensiva (UTI) se caracteriza pela alta complexidade, monitoramento contínuo e ininterrupto, destinando-se ao atendimento de pacientes críticos. Comunicar más notícias neste ambiente gera sentimentos intensos para o paciente e seus familiares. O objetivo deste estudo foi compreender como os médicos percebem o processo de comunicação de más notícias na UTI, bem como identificar os fatores que facilitam e dificultam este processo, e os sentimentos gerados no profissional. Os 15 médicos participantes responderam um questionário online com perguntas abertas e fechadas. O processo de comunicação de más notícias foi considerado difícil e emotivo, independentemente do tempo de atuação em UTI. O conhecimento sobre a história do paciente e de seus familiares foi um fator facilitador e as mudanças inesperadas no quadro clínico do paciente foram fatores dificultadores do processo de comunicação. Os médicos reconheceram a necessidade de desenvolver competências para aprimorar a relação com paciente e famílias.

Abstract Characterized by highly complex, continuous and uninterrupted monitoring, the Intensive Care Unit (ICU) focuses on providing care for critically ill patients. Communicating bad news in this environment generates intense feelings for patients and families. Thus, this study sought to understand how experienced and novice physicians perceive the process of communicating bad news in the ICU, as well as to identify the factors that facilitate and hinder this process, and the feelings generated in the professional. A total of 15 physicians answered an online questionnaire with open and closed questions. Participants reported that the process of communicating bad news is difficult and emotional regardless of ICU length of stay. Knowledge about the patients' history and their families emerged as a facilitating factor, whereas unexpected changes in the patient's clinical condition hindered the communication process. Physicians recognized the need to develop skills as to improve physician-patient relations.

Résumé Caractérisée par une surveillance hautement complexe, continue et ininterrompue, l'unité de soins intensifs (USI) se concentre sur la prise en charge des patients gravement malades. Communiquer de mauvaises nouvelles dans cet environnement génère des sentiments intenses pour les patients et les familles. Cette étude a donc cherché à comprendre comment les médecins expérimentés et novices perçoivent le processus de communication des mauvaises nouvelles dans l'USI, ainsi qu'à identifier les facteurs qui facilitent et entravent ce processus, et les sentiments générés chez le professionnel. Au total, 15 médecins ont répondu à un questionnaire en ligne comportant des questions ouvertes et fermées. Les participants ont indiqué que le processus de communication de mauvaises nouvelles est difficile et émotionnel, quelle que soit la durée du séjour à l'USI. La connaissance de l'histoire des patients et de leur famille est apparue comme un facteur facilitant, tandis que les changements inattendus dans l'état clinique du patient entravaient le processus de communication. Les médecins ont reconnu la nécessité de développer des compétences afin d'améliorer les relations médecin-patient.

Resumen La Unidad de Cuidados Intensivos (UCI) se caracteriza por tener un monitoreo continuo e ininterrumpido de alta complejidad, destinado a la atención de pacientes críticos. Comunicar malas noticias en este ambiente genera sentimientos intensos para el paciente y sus familiares. El objetivo de este estudio fue comprender cómo los médicos perciben el proceso de comunicación de malas noticias en la UCI, así como identificar los factores que facilitan y dificultan ese proceso, y los sentimientos generados en el profesional. Los 15 médicos participantes respondieron un cuestionario en línea con preguntas abiertas y cerradas. El proceso de comunicar malas noticias se consideró difícil y emotivo, independiente del tiempo de estadía en la UCI. El conocimiento sobre la historia del paciente y sus familiares fue un factor facilitador, y los cambios inesperados en la condición clínica del paciente fueron los factores que dificultaron el proceso de comunicación. Los médicos reconocieron la necesidad de desarrollar habilidades para mejorar la relación con los pacientes y las familias.

Publishing and Paternalism in the Grenfell Mission: Wilfred Grenfell's Accounts of a Boy Patient and Doctor-Patient Relations in Northern Newfoundland and Labrador, 1900-14.

In 1906 Dr. Wilfred Grenfell, founder and head of the Grenfell medical mission of northern Newfoundland and southeastern Labrador, published a short article in Putnam's Monthly about a nine-year-old boy named Clem Richards, who had shot himself in the knee while hunting seabirds. The boy's identity was disclosed in full, with Grenfell including his name and image as well as a detailed description of his living conditions. The "story" of the boy's injury and recovery became a favourite of Grenfell's, and it was modified and republished in a number of magazines and books between 1906 and 1923. This article explores the appeal that Richards' accident held for Grenfell and argues that his dramatic mid-winter rescue of the boy helped Grenfell promote his mission and construct a public image of himself that would appeal to American readers and donors. By comparing published accounts with Richards' medical case record, however, we also see how much Grenfell distorted the incident to heighten its drama and reader appeal. The article also considers how the mission's dominance over northern Newfoundland and southeastern Labrador enabled Grenfell to use Richards' name and image for mission publicity with no consideration of patient consent.

[Discrepancies (and confluences) in perception between patients and nephrologists of chronic kidney disease impact on vital impetus in adults not undergoing hemodialysis: Results of the French MAEVA study]. / Divergences (et convergences) de perceptions entre patients et néphrologues de l'impact de l'insuffisance rénale chronique non terminale sur l'élan vital en France : résultats de l'enquête MAEVA.

RATIONALE: The impact of chronic kidney disease (CKD) on vital impetus is poorly documented in patients not undergoing renal dialysis and discrepancies can be observed between patients and physicians in perception of QoL and impact of the disease. METHODS: A self-questionnaire was sent to 1282 French nephrologists and a mirrored self-questionnaire was given to patients (CKD stage 3, 4 or 5) by their nephrologist. Data were collected prospectively and anonymously. RESULTS: A total of 261 nephrologists and 172 patients participated in the survey. Sixty-six percent of patients reported a negative impact of the disease on their quality of life, which is also identified by nephrologists: important impact 22% vs 27%, mild or inconstant 44% vs 47%, mild or absent 34% vs 31% in patients and nephrologists, respectively. They had different perceptions about factors contributing to vital force; in particular, nephrologists underestimated their key role in psychological support. Indeed, the optimism and encouragements of nephrologists were considered to be a key factor of vital force for 60% of patients vs 20% of nephrologists (P<0,001). During consultations, nephrologists were primarily focused on biological abnormalities and adherence to treatment while mood or sexual disorders were rarely investigated. The main objective of treatment was to maintain a normal life for patients and to delay dialysis for nephrologists. CONCLUSION: Nephrologists have a relative knowledge of CKD impact on the vital impetus of patients, but there are differences of perception. It could be improved through specific trainings.