A Core Outcome Set for Research Evaluating Interventions to Enable Communication in Patients With an Artificial Airway: An International Delphi Consensus Study (Comm-COS).

OBJECTIVES: Critically ill adults requiring artificial airways experience profound communication deficits. Studies of interventions supporting communication report disparate outcomes, creating subsequent challenges in the interpretation of their effectiveness. Therefore, we aimed to develop international consensus for a communication core outcome set (Comm-COS) for future trials of communication interventions in this population. DESIGN: 1) Systematic review, 2) patient/family interviews, 3) two-round modified Delphi, and 4) virtual consensus meetings with a final voting round. A multidisciplinary expert steering committee oversaw all stages. SETTING: Interviews and consensus meetings were conducted via videoconferencing. Digital methods were used for Delphi and final Comm-COS voting. SUBJECTS: Three stakeholder groups: 1) patient and family members with lived experience within 3 years, 2) clinicians with experience working in critical care, and 3) researchers publishing in the field. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: We identified 59 outcomes via our systematic review, 3 unique outcomes from qualitative interviews, and 2 outcomes from our steering committee. Following item reduction, 32 outcomes were presented in Delphi round 1; 134 participants voted; 15 patient/family (11%), 91 clinicians (68%), and 28 researchers (21%). Nine additional outcomes were generated and added to round 2; 106 (81%) participants voted. Following completion of the consensus processes, the Comm-COS includes seven outcomes: 1) changes in emotions and wellbeing associated with ability to communicate, 2) physical impact of communication aid use, 3) time to functional communication, 4) ability to communicate healthcare needs (comfort/care/safety/decisions), 5) conversation agency, 6) ability to establish a communication connection to develop and maintain relationships, and 7) acceptability of the communication intervention. CONCLUSIONS: This is the first COS to specifically focus on communication for critically ill adults. Limitations for operationalization include selection of measures to use with these outcomes. Identification of suitable measures and adoption of the Comm-COS in future trials will help establish effective interventions to ameliorate the highly prevalent and negative experience of communicative incapacity.

Attending to Marginalization in The Chronic Pain Literature: A Scoping Review.

Background: There has been a recent and, for many within the chronic pain space, long-overdue increase in literature that focuses on equity, diversity, inclusion, and decolonization (EDI-D) to understand chronic pain among people who are historically and structurally marginalized. Aims: In light of this growing attention in chronic pain research, we undertook a scoping review of studies that focus on people living with chronic pain and marginalization to map how these studies were carried out, how marginalization was conceptualized and operationalized by researchers, and identify suggestions for moving forward with marginalization and EDI-D in mind to better support people living with chronic pain. Methods: We conducted this scoping review using critical analysis in a manner that aligns with dominant scoping review frameworks and recent developments made to scoping review methodology as well as reporting guidelines. Results: Drawing on 67 studies, we begin with a descriptive review of the literature followed by a critical review that aims to identify fissures within the field through the following themes: (1) varying considerations of sociopolitical and socioeconomic contexts, (2) conceptual conflations between sex and gender, and (3) differing approaches to how people living with chronic pain and marginalization are described. Conclusion: By identifying strengths and limitations in the research literature, we aim to highlight opportunities for researchers to contribute to a more comprehensive understanding of marginalization in chronic pain experiences.

Contexte: La littérature mettant l'accent sur l'équité, la diversité, l'inclusion et la décolonisation (EDI-D) pour mieux comprendre la douleur chronique chez les personnes historiquement et structurellement marginalisées a récemment connu une augmentation, attendue depuis longtemps par de nombreux spécialistes de la douleur chronique.Objectifs: À la lumière de cette attention croissante dans la recherche sur la douleur chronique, nous avons entrepris un examen approfondi des études portant sur les personnes vivant avec une douleur chronique et la marginalisation, afin de déterminer comment ces études ont été menées, comment la marginalisation a été conceptualisée et opérationnalisée par les chercheurs, et de recenser des suggestions pour aller de l'avant en gardant à l'esprit la marginalisation et l'EDI-D afin de mieux soutenir les personnes vivant avec la douleur chronique.Méthodes: Nous avons mené cet examen de la portée en utilisant l'analyse critique, conformément aux cadres dominants et aux développements récents de la méthodologie de l'examen de la portée, ainsi qu'aux lignes directrices relatives aux rapports.Résultats: En nous appuyant sur 67 études, nous commençons par un examen descriptif de la littérature, suivi d'un examen critique visant à déterminer les lacunes dans le domaine, en fonction des thèmes suivants : (1) les diverses interprétations des contextes sociopolitiques et socioéconomiques, (2) les confusions conceptuelles entre sexe et genre, et (3) les approches différentes concernant la manière dont les personnes vivant avec la douleur chronique et la marginalisation sont décrites.Conclusions: En cernant les points forts et les limites de la littérature de recherche, nous visons à mettre en évidence les possibilités pour les chercheurs de contribuer à une meilleure compréhension de la marginalisation dans les expériences de douleur chronique.Abréviations: TUO : trouble lié à l'utilisation d'opioïdes; DSM-5 : Manuel diagnostique et statistique 5; BPI : Questionnaire concis sur la douleur; NIDA : National Institute on Drug Abuse; IASP : Association internationale pour l'étude de la douleur; MTUO : Médicaments pour le trouble lié à l'utilisation des opioïdes; EIQ : Écart interquartile.

Acceptability of the Long-Term In-Home Ventilator Engagement virtual intervention for home mechanical ventilation patients during the COVID-19 pandemic: A qualitative evaluation.

Background: Clinical management of ventilator-assisted individuals (VAIs) was challenged by social distancing rules during the COVID-19 pandemic. In May 2020, the Long-Term In-Home Ventilator Engagement (LIVE) Program was launched in Ontario, Canada to provide intensive digital care case management to VAIs. The purpose of this qualitative study was to explore the acceptability of the LIVE Program hosted via a digital platform during the COVID-19 pandemic from diverse perspectives. Methods: We conducted a qualitative descriptive study (May 2020-April 2021) comprising semi-structured interviews with participants from eight home ventilation specialty centers in Ontario, Canada. We purposively recruited patients, family caregivers, and providers enrolled in LIVE. Content analysis and the theoretical concepts of acceptability, feasibility, and appropriateness were used to interpret findings. Results: A total of 40 individuals (2 VAIs, 18 family caregivers, 20 healthcare providers) participated. Participants described LIVE as acceptable as it addressed a longstanding imperative to improve care access, ease of use, and training provided; feasible for triaging problems and sharing information; and appropriate for timeliness of provider responses, workflows, and perceived value. Negative perceptions of acceptability among healthcare providers concerned digital workload and fit with existing clinical workflows. Perceived benefits accorded to LIVE included enhanced physical and psychological safety in the home, patient-provider relations, and VAI engagement in their own care. Conclusions: Study findings identify factors influencing the LIVE Program's acceptability by patients, family caregivers, and healthcare providers during pandemic conditions including enhanced access to care, ease of case management triage, and VAI safety. Findings may inform the implementation of digital health services to VAIs in non-pandemic circumstances.