Partnering with Youth and Parents for the Greatest Impact of Top Patient-Oriented Priorities in Pediatric Chronic Pain Research, Care and Policy.

Our original patient-oriented research project identified the top 10 priorities for pediatric chronic pain research and care in Canada from the perspective of people with lived experience (patients), their family members and healthcare professionals through a modified James Lind Alliance Priority Setting Partnership. We undertook subsequent knowledge translation activities with youth, families, healthcare professionals, decision makers and researchers to (1) generate awareness and interest in the top 10 priorities and our partnership process, (2) facilitate collaborative dialogue and open innovation and (3) integrate and adopt the top 10 priorities into stakeholder activities. This paper describes our knowledge translation activities, outcomes and impact.

Beyond Wellness Monitoring: Continuous Multiparameter Remote Automated Monitoring of Patients.

The pursuit of more efficient patient-friendly health systems and reductions in tertiary health services use has seen enormous growth in the application and study of remote patient monitoring systems for cardiovascular patient care. While there are many consumer-grade products available to monitor patient wellness, the regulation of these technologies varies considerably, with most products having little to no evaluation data. As the science and practice of virtual care continues to evolve, clinicians and researchers can benefit from an understanding of more comprehensive solutions capable of monitoring multiple biophysical parameters (eg, oxygen saturation, heart rate) continuously and simultaneously. These devices, herein referred to as continuous multiparameter remote automated monitoring (CM-RAM) devices, have the potential to revolutionise virtual patient care. Through seamless integration of multiple biophysical signals, CM-RAM technologies can allow for the acquisition of high-volume big data for the development of algorithms to facilitate early detection of negative changes in patient health status and timely clinician response. In this article, we review key principles, architecture, and components of CM-RAM technologies. Work to date in this field and related implications are also presented, including strategic priorities for advancing the science and practice of CM-RAM.

Continuous Noninvasive Remote Automated Blood Pressure Monitoring With Novel Wearable Technology: A Preliminary Validation Study.

BACKGROUND: Wearable continuous monitoring biosensor technologies have the potential to transform postoperative care with early detection of impending clinical deterioration. OBJECTIVE: Our aim was to validate the accuracy of Cloud DX Vitaliti continuous vital signs monitor (CVSM) continuous noninvasive blood pressure (cNIBP) measurements in postsurgical patients. A secondary aim was to examine user acceptance of the Vitaliti CVSM with respect to comfort, ease of application, sustainability of positioning, and aesthetics. METHODS: Included participants were ≥18 years old and recovering from surgery in a cardiac intensive care unit (ICU). We targeted a maximum recruitment of 80 participants for verification and acceptance testing. We also oversampled to minimize the effect of unforeseen interruptions and other challenges to the study. Validation procedures were according to the International Standards Organization (ISO) 81060-2:2018 standards for wearable, cuffless blood pressure (BP) measuring devices. Baseline BP was determined from the gold-standard ICU arterial catheter. The Vitaliti CVSM was calibrated against the reference arterial catheter. In static (seated in bed) and supine positions, 3 cNIBP measurements, each 30 seconds, were taken for each patient with the Vitaliti CVSM and an invasive arterial catheter. At the conclusion of each test session, captured cNIBP measurements were extracted using MediCollector BEDSIDE data extraction software, and Vitaliti CVSM measurements were extracted to a secure laptop through a cable connection. The errors of these determinations were calculated. Participants were interviewed about device acceptability. RESULTS: The validation analysis included data for 20 patients. The average times from calibration to first measurement in the static position and to first measurement in the supine position were 133.85 seconds (2 minutes 14 seconds) and 535.15 seconds (8 minutes 55 seconds), respectively. The overall mean errors of determination for the static position were -0.621 (SD 4.640) mm Hg for systolic blood pressure (SBP) and 0.457 (SD 1.675) mm Hg for diastolic blood pressure (DBP). Errors of determination were slightly higher for the supine position, at 2.722 (SD 5.207) mm Hg for SBP and 2.650 (SD 3.221) mm Hg for DBP. The majority rated the Vitaliti CVSM as comfortable. This study was limited to evaluation of the device during a very short validation period after calibration (ie, that commenced within 2 minutes after calibration and lasted for a short duration of time). CONCLUSIONS: We found that the Cloud DX's Vitaliti CVSM demonstrated cNIBP measurement in compliance with ISO 81060-2:2018 standards in the context of evaluation that commenced within 2 minutes of device calibration; this device was also well-received by patients in a postsurgical ICU setting. Future studies will examine the accuracy of the Vitaliti CVSM in ambulatory contexts, with attention to assessment over a longer duration and the impact of excessive patient motion on data artifacts and signal quality. TRIAL REGISTRATION: ClinicalTrials.gov NCT03493867; https://clinicaltrials.gov/ct2/show/NCT03493867.

Post-discharge after surgery Virtual Care with Remote Automated Monitoring-1 (PVC-RAM-1) technology versus standard care: randomised controlled trial.

OBJECTIVE: To determine if virtual care with remote automated monitoring (RAM) technology versus standard care increases days alive at home among adults discharged after non-elective surgery during the covid-19 pandemic. DESIGN: Multicentre randomised controlled trial. SETTING: 8 acute care hospitals in Canada. PARTICIPANTS: 905 adults (≥40 years) who resided in areas with mobile phone coverage and were to be discharged from hospital after non-elective surgery were randomised either to virtual care and RAM (n=451) or to standard care (n=454). 903 participants (99.8%) completed the 31 day follow-up. INTERVENTION: Participants in the experimental group received a tablet computer and RAM technology that measured blood pressure, heart rate, respiratory rate, oxygen saturation, temperature, and body weight. For 30 days the participants took daily biophysical measurements and photographs of their wound and interacted with nurses virtually. Participants in the standard care group received post-hospital discharge management according to the centre's usual care. Patients, healthcare providers, and data collectors were aware of patients' group allocations. Outcome adjudicators were blinded to group allocation. MAIN OUTCOME MEASURES: The primary outcome was days alive at home during 31 days of follow-up. The 12 secondary outcomes included acute hospital care, detection and correction of drug errors, and pain at 7, 15, and 30 days after randomisation. RESULTS: All 905 participants (mean age 63.1 years) were analysed in the groups to which they were randomised. Days alive at home during 31 days of follow-up were 29.7 in the virtual care group and 29.5 in the standard care group: relative risk 1.01 (95% confidence interval 0.99 to 1.02); absolute difference 0.2% (95% confidence interval -0.5% to 0.9%). 99 participants (22.0%) in the virtual care group and 124 (27.3%) in the standard care group required acute hospital care: relative risk 0.80 (0.64 to 1.01); absolute difference 5.3% (-0.3% to 10.9%). More participants in the virtual care group than standard care group had a drug error detected (134 (29.7%) v 25 (5.5%); absolute difference 24.2%, 19.5% to 28.9%) and a drug error corrected (absolute difference 24.4%, 19.9% to 28.9%). Fewer participants in the virtual care group than standard care group reported pain at 7, 15, and 30 days after randomisation: absolute differences 13.9% (7.4% to 20.4%), 11.9% (5.1% to 18.7%), and 9.6% (2.9% to 16.3%), respectively. Beneficial effects proved substantially larger in centres with a higher rate of care escalation. CONCLUSION: Virtual care with RAM shows promise in improving outcomes important to patients and to optimal health system function. TRIAL REGISTRATION: ClinicalTrials.gov NCT04344665.

A Case Study of Two Emerging Nurse Leaders Specializing in Virtual Health during the COVID-19 Global Pandemic.

In the field of digital health research, nurse leaders have an opportunity to be integral to the design, implementation and evaluation of virtual care interventions. This case study details the experiences of two emerging nurse leaders during the COVID-19 pandemic in providing research and clinical leadership for a national virtual health trial. These nurse leaders trained and led a national team of 70 nurses across eight participating centres delivering the virtual care and remote monitoring intervention, using the normalization process theory. This case study presents a theoretically informed approach to training and leadership and discusses the experiences and lessons learned.

Post Discharge after Surgery Virtual Care with Remote Automated Monitoring Technology (PVC-RAM): protocol for a randomized controlled trial.

BACKGROUND: After nonelective (i.e., semiurgent, urgent and emergent) surgeries, patients discharged from hospitals are at risk of readmissions, emergency department visits or death. During the coronavirus disease 2019 (COVID-19) pandemic, we are undertaking the Post Discharge after Surgery Virtual Care with Remote Automated Monitoring Technology (PVC-RAM) trial to determine if virtual care with remote automated monitoring (RAM) compared with standard care will increase the number of days adult patients remain alive at home after being discharged following nonelective surgery. METHODS: We are conducting a randomized controlled trial in which 900 adults who are being discharged after nonelective surgery from 8 Canadian hospitals are randomly assigned to receive virtual care with RAM or standard care. Outcome adjudicators are masked to group allocations. Patients in the experimental group learn how to use the study's tablet computer and RAM technology, which will measure their vital signs. For 30 days, patients take daily biophysical measurements and complete a recovery survey. Patients interact with nurses via the cellular modem-enabled tablet, who escalate care to preassigned and available physicians if RAM measurements exceed predetermined thresholds, patients report symptoms, a medication error is identified or the nurses have concerns they cannot resolve. The primary outcome is number of days alive at home during the 30 days after randomization. INTERPRETATION: This trial will inform management of patients after discharge following surgery in the COVID-19 pandemic and offer insights for management of patients who undergo nonelective surgery in a nonpandemic setting. Knowledge dissemination will be supported through an online multimedia resource centre, policy briefs, presentations, peer-reviewed journal publications and media engagement. TRIAL REGISTRATION: ClinicalTrials.gov, no. NCT04344665.

Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research.

BACKGROUND: Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured. OBJECTIVE: Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships. SEARCH STRATEGY: A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand-searched. INCLUSION CRITERIA: Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes. DATA EXTRACTION AND SYNTHESIS: Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach. MAIN RESULTS: Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles. DISCUSSION: Addressing power dynamics in patient partner-researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research. CONCLUSIONS: Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.

Postoperative Remote Automated Monitoring and Virtual Hospital-to-Home Care System Following Cardiac and Major Vascular Surgery: User Testing Study.

BACKGROUND: Cardiac and major vascular surgeries are common surgical procedures associated with high rates of postsurgical complications and related hospital readmission. In-hospital remote automated monitoring (RAM) and virtual hospital-to-home patient care systems have major potential to improve patient outcomes following cardiac and major vascular surgery. However, the science of deploying and evaluating these systems is complex and subject to risk of implementation failure. OBJECTIVE: As a precursor to a randomized controlled trial (RCT), this user testing study aimed to examine user performance and acceptance of a RAM and virtual hospital-to-home care intervention, using Philip's Guardian and Electronic Transition to Ambulatory Care (eTrAC) technologies, respectively. METHODS: Nurses and patients participated in systems training and individual case-based user testing at two participating sites in Canada and the United Kingdom. Participants were video recorded and asked to think aloud while completing required user tasks and while being rated on user performance. Feedback was also solicited about the user experience, including user satisfaction and acceptance, through use of the Net Promoter Scale (NPS) survey and debrief interviews. RESULTS: A total of 37 participants (26 nurses and 11 patients) completed user testing. The majority of nurse and patient participants were able to complete most required tasks independently, demonstrating comprehension and retention of required Guardian and eTrAC system workflows. Tasks which required additional prompting by the facilitator, for some, were related to the use of system features that enable continuous transmission of patient vital signs (eg, pairing wireless sensors to the patient) and assigning remote patient monitoring protocols. NPS scores by user group (nurses using Guardian: mean 8.8, SD 0.89; nurses using eTrAC: mean 7.7, SD 1.4; patients using eTrAC: mean 9.2, SD 0.75), overall NPS scores, and participant debrief interviews indicated nurse and patient satisfaction and acceptance of the Guardian and eTrAC systems. Both user groups stressed the need for additional opportunities to practice in order to become comfortable and proficient in the use of these systems. CONCLUSIONS: User testing indicated a high degree of user acceptance of Philips' Guardian and eTrAC systems among nurses and patients. Key insights were provided that informed refinement of clinical workflow training and systems implementation. These results were used to optimize workflows before the launch of an international RCT of in-hospital RAM and virtual hospital-to-home care for patients undergoing cardiac and major vascular surgery.

Mapping the evidence and gaps of interventions for pediatric chronic pain to inform policy, research, and practice: A systematic review and quality assessment of systematic reviews.

Background: Reviews in pediatric chronic pain often focus on only one intervention or population, making it difficult for policymakers and decision makers to quickly synthesize knowledge to inform larger-scale policy and funding priorities. Aims: The aims of this study were to (1) create an evidence and gap map of interventions for pediatric chronic pain and (2) identify gaps between existing evidence and recently identified patient-oriented research priorities. Methods: We performed a systematic review of English-language peer-reviewed systematic reviews or clinical practice guidelines of pediatric chronic pain intervention published in the past 20 years. Database searches of Medline, Embase, PsycINFO, Web of Science, CINAHL, and SCOPUS were conducted inclusive to June 3, 2019. Review quality was assessed using the AMSTAR-2. Results: Of 4168 unique abstracts, 50 systematic reviews (including 2 clinical practice guidelines) crossing diverse pediatric chronic pain populations and intervention settings were included. One third were rated high quality, with half rated low to critically low quality. The largest proportion of reviews addressed psychological and pharmacological interventions, followed by interdisciplinary, other (e.g., dietary), and physical interventions. Most common outcomes included pain, physical, emotional, and role functioning and quality of life. Treatment satisfaction and adverse events were less common, with minimal report of sleep or economic factors. Most patient-oriented research priorities had not been investigated. Conclusions: Sufficient quality evidence is available to guide evidence-informed policies in pediatric chronic pain, most notably regarding psychological and pharmacological interventions. Numerous evidence gaps in patient-oriented research priorities and treatment outcomes should guide prioritization of research funds, as well as study aims and design.

Contexte: Les études sur la douleur chronique chez les enfants se concentrent souvent sur une seule intervention ou sur une seule population, de sorte qu'il est difficile pour les responsables politiques et les décideurs de synthétiser rapidement les connaissances afin d'éclairer les priorités de financement et les politiques à plus grande échelle.Objectifs: Les objectifs de cette étude étaient (1) de créer une carte présentant les lacunes dans les données probantes en ce qui concerne les interventions pour la douleur chronique chez les enfants et (2) de répertorier les lacunes dans les données probantes existantes par rapport aux priorités de recherche axées sur le patient récemment déterminées.Méthodes: Nous avons effectué une revue systématique des revues systématiques évaluées par des pairs ou des guides de pratique clinique portant sur les interventions en matière de douleur chronique pédiatrique publiés en langue anglaise au cours des 20 dernières années. Des recherches ont été menées dans les bases de données Medline, Embase, PsycINFO, Web of Science, CINAHL et SCOPUS jusqu'au 3 juin 2019 inclusivement. La qualité des revues a été évaluée à l'aide d'AMSTAR-2.Résultats: Sur 4168 résumés uniques, 50 revues systématiques (dont deux guides de pratique clinique) portant sur diverses populations pédiatriques souffrant de douleur chronique et divers milieux d'intervention ont été incluses. Un tiers d'entre elles ont été jugées de haute qualité, tandis que la moitié était jugée de basse à très basse qualité. La majeure partie des revues portait sur des interventions psychologiques et pharmacologiques, tandis que les autres portaient sur des interventions interdisciplinaires, d'autres types d'interventions (ex.: nutritionnelles) et des interventions physiques. Les issues les plus courantes comprenaient la douleur, le fonctionnement physique, émotionnel et de rôle, ainsi que la qualité de vie. La satisfaction à l'égard du traitement et les effets indésirables étaient moins souvent abordés, tandis que le sommeil et les facteurs économiques étaient peu mentionnés. La majeure partie des priorités de recherche axées sur les patients n'avait pas fait l'objet d'études.Conclusions: Il existe suffisamment de données probantes de qualité pour guider les politiques fondées sur des données probantes en matière de douleur chronique pédiatrique, surtout en ce qui concerne les interventions psychologiques et pharmacologiques. L'existence de nombreuses lacunes dans les données probantes concernant les priorités de recherche axées sur le patient et les issues de traitement devrait guider la hiérarchisation du financement de la recherche, ainsi que les objectifs et la conception des études.

Partnering For Pain: a Priority Setting Partnership to identify patient-oriented research priorities for pediatric chronic pain in Canada.

BACKGROUND: Chronic pain affects 1-3 million Canadian children and adolescents and their families. The primary objective of the Partnering For Pain project was to collaboratively identify the top 10 research priorities in pediatric chronic pain. METHODS: Partnering For Pain took a patient-oriented research approach and followed a modified James Lind Alliance Priority Setting Partnership (PSP) to identify the top research priorities in pediatric chronic pain according to people with lived experience (patients), family members and health care providers (clinicians). The PSP was completed in 4 phases between May and December 2018: 1) national survey of stakeholders, including those with lived experience with pediatric chronic pain, family members and clinicians who treat children with chronic pain, to gather priorities, 2) data processing, 3) interim prioritization by invited patients, family members and clinicians (former research participants or identified through pediatric chronic pain programs, patient partner organizations and steering committee member networks) and 4) in-person priority-setting workshop involving patients, family members and clinicians identified via steering committee networks and partner organizations, with evaluation of patient engagement. The process was led by a national steering committee of patient and parent partners, researchers and clinicians engaged in codesign, analysis and translation of project findings. RESULTS: In phase 1, 215 Canadians (86 patients [40.0%], 56 family members [26.0%] and 73 clinicians [34.0%]) submitted 540 potential priorities that were developed into 112 unique research questions (phase 2). Of the 112 questions, 63 were rated for importance by 57 participants (19 patients [33%], 17 family members [30%] and 21 clinicians [37%]) in phase 3. In phase 4, 20 participants (6 patients [30%], 6 family members [30%] and 8 clinicians [40%]) discussed the 25 most highly rated questions and reached consensus on the final top 10. INTERPRETATION: The final priorities address pediatric chronic pain prevention, impact and treatment, as well as delivery, access and coordination of care. The priorities reflect a directed and collaborative call to action to improve existing pediatric pain research and care. PLAIN LANGUAGE SUMMARY: Chronic pain affects 1 in 5 children and teens. This means that 1-3 million Canadian youth deal with pain lasting months to years. This pain gets in the way of being active, sleeping, going to school, and getting along with friends and family. Youth with chronic pain and their families are experts on what it's like to live with pain, but, until now, research has not asked what issues they care about most. The goal of the Partnering For Pain project was to develop a list of the 10 most important things we still need to learn about chronic pain during childhood according to people who live with it, their families and health care providers. We did this in 4 steps: 1) a survey with 215 people who shared 540 concerns they have about chronic pain in childhood, 2) turning those concerns into questions that can be answered by research, 3) a survey with 57 people who ranked how important each research question was and 4) an in-person discussion with 20 people who chose the top 10 research priorities. Each step included Canadians who have had chronic pain during childhood, their families and health care providers. The final top 10 list has questions about how to better prevent and care for children and teens with chronic pain. These priorities make sure that future research focuses on what is most important to people who will use it in their everyday lives. Project video: https://youtu.be/wA-RwrFiSPk. Project website: www.partneringforpain.com.

Use of Synchronous Digital Health Technologies for the Care of Children With Special Health Care Needs and Their Families: Scoping Review.

BACKGROUND: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at home has shown promise for improving outcomes and increasing access to care for this medically fragile and resource-intensive population. However, a comprehensive description of the various models of synchronous home digital health interventions does not exist, nor has the impact of such interventions been summarized to date. OBJECTIVE: We aim to describe the various models of synchronous home digital health that have been used in pediatric populations with special health care needs, their outcomes, and implementation barriers. METHODS: A systematic scoping review of the literature was conducted, guided by the Arksey and O'Malley Scoping Review Framework. MEDLINE, CINAHL, and EMBASE databases were searched from inception to June 2018, and the reference lists of the included systematic reviews and high-impact journals were hand-searched. RESULTS: A total of 38 articles were included in this review. Interventional articles are described as feasibility studies, studies that aim to provide direct care to children with special health care needs, and studies that aim to support family members to deliver care to children with special health care needs. End-user involvement in the design and implementation of studies is evaluated using a human-centered design framework, and factors affecting the implementation of digital health programs are discussed in relation to technological, human, and systems factors. CONCLUSIONS: The use of digital health to care for children with special health care needs presents an opportunity to leverage the capacity of technology to connect patients and their families to much-needed care from expert health care providers while avoiding the expenses and potential harms of the hospital-based care system. Strategies to scale and spread pilot studies, such as involving end users in the co-design techniques, are needed to optimize digital health programs for children with special health care needs.

Examination of psychological risk factors for chronic pain following cardiac surgery: protocol for a prospective observational study.

INTRODUCTION: Approximately 400 000 Americans and 36 000 Canadians undergo cardiac surgery annually, and up to 56% will develop chronic postsurgical pain (CPSP). The primary aim of this study is to explore the association of pain-related beliefs and gender-based pain expectations on the development of CPSP. Secondary goals are to: (A) explore risk factors for poor functional status and patient-level cost of illness from a societal perspective up to 12 months following cardiac surgery; and (B) determine the impact of CPSP on quality-adjusted life years (QALYs) borne by cardiac surgery, in addition to the incremental cost for one additional QALY gained, among those who develop CPSP compared with those who do not. METHODS AND ANALYSES: In this prospective cohort study, 1250 adults undergoing cardiac surgery, including coronary artery bypass grafting and open-heart procedures, will be recruited over a 3-year period. Putative risk factors for CPSP will be captured prior to surgery, at postoperative day 3 (in hospital) and day 30 (at home). Outcome data will be collected via telephone interview at 6-month and 12-month follow-up. We will employ generalised estimating equations to model the primary (CPSP) and secondary outcomes (function and cost) while adjusting for prespecified model covariates. QALYs will be estimated by converting data from the Short Form-12 (version 2) to a utility score. ETHICS AND DISSEMINATION: This protocol has been approved by the responsible bodies at each of the hospital sites, and study enrolment began May 2015. We will disseminate our results through CardiacPain.Net, a web-based knowledge dissemination platform, presentation at international conferences and publications in scientific journals. TRIAL REGISTRATION NUMBER: NCT01842568.

The need for novel strategies to address postoperative pain associated with cardiac surgery: A commentary and introduction to "SMArTVIEW".

Background: With coronary heart disease affecting over 2.4 million Canadians, annual cardiac and major vascular surgery rates are on the rise. Unrelieved postoperative pain is among the top five causes of hospital readmission following surgery; little is done to address this postoperative complication. Barriers to effective pain assessment and management following cardiac and major vascular surgery have been conceptualized on patient, health care provider, and system levels. Purpose: In this commentary, we review common patient, health care provider, and system-level barriers to effective postoperative pain assessment and management following cardiac and major vascular surgery. We then outline the SMArTVIEW intervention, with particular attention to components designed to optimize postoperative pain assessment and management. Methods: In conceptualizing the SMArTVIEW intervention design, we sought to address a number of these barriers by meeting the following design objectives: (1) orchestrating a structured process for regular postoperative pain assessment and management; (2) ensuring adequate clinician preparation for postoperative pain assessment and management in the context of virtual care; and (3) enfranchising patients to become active self-managers and to work with their health care providers to manage their pain postoperatively. Conclusions: Innovative approaches to address these barriers are a current challenge to health care providers and researchers alike. SMArTVIEW is spearheading this paradigm shift within clinical research to address barriers that impair effective postoperative pain management by actively engaging health care providers and patients in an accessible format (i.e., digital health solution) to give primacy to the need of postoperative pain assessment and management following cardiac and major vascular surgery.

Contexte: Alors que la maladie cardiaque coronarienne touche plus de 2,4 millions de Canadiens, les taux annuels de chirurgie cardiaque et de chirurgie vasculaire majeure sont en augmentation. Bien que la douleur postopératoire non soulagée compte parmi les cinq principales causes de réadmission à l'hôpital après une chirurgie, peu de choses sont faites pour remédier à cette complication postopératoire. Les barrières à l'évaluation et à la prise en charge efficaces de la douleur après une chirurgie cardiaque ou une chirurgie vasculaire majeure ont été conceptualisées aux niveaux du patient, du prestataire de soins et du système.But: Dans ce commentaire, nous examinons les barrières à l'évaluation et à la prise en charge efficace de la douleur postopératoire après une chirurgie cardiaque et une chirurgie vasculaire majeure au niveau du patient, du prestataire de soins et du système. Nous présentons ensuite l'intervention SMArTVIEW, en portant une attention particulière aux composantes conçues pour optimiser l'évaluation et la prise en charge de la douleur postopératoire.Méthodes: Au moment de conceptualiser l'intervention SMArTIEW, nous avons cherché à remédier à un certain nombre de ces barrières à partir des objectifs de conception suivants : 1) orchestrer un processus structuré pour l'évaluation et la prise en charge de la douleur postopératoire régulière; 2) assurer une préparation adéquate des cliniciens pour l'évaluation et la prise en charge de la douleur postopératoire dans un contexte de soins virtuels; et 3) affranchir les patients afin qu'ils puissent activement prendre en charge leur douleur postopératoire et travailler de concert avec les prestataires de soins.Conclusions: Les approches innovantes pour remédier à ces barrières sont un défi constant, tant pour les prestataires de soins que pour les chercheurs. SMArTVIEW est à l'avant-garde de ce changement de paradigme dans la recherche clinique qui a pour but de remédier aux barrières qui nuisent à la prise en charge efficace de la douleur postopératoire en engageant activement les prestataires de soins et les patients dans un format accessible (i.e. solution de santé numérique), afin que la primauté soit accordée à la nécessité d'évaluer et de prendre en charge la douleur postopératoire après une chirurgie cardiaque ou une chirurgie vasculaire majeure.

Postoperative Remote Automated Monitoring: Need for and State of the Science.

Worldwide, more than 230 million adults have major noncardiac surgery each year. Although surgery can improve quality and duration of life, it can also precipitate major complications. Moreover, a substantial proportion of deaths occur after discharge. Current systems for monitoring patients postoperatively, on surgical wards and after transition to home, are inadequate. On the surgical ward, vital signs evaluation usually occurs only every 4-8 hours. Reduced in-hospital ward monitoring, followed by no vital signs monitoring at home, leads to thousands of cases of undetected/delayed detection of hemodynamic compromise. In this article we review work to date on postoperative remote automated monitoring on surgical wards and strategy for advancing this field. Key considerations for overcoming current barriers to implementing remote automated monitoring in Canada are also presented.

The association between pediatric chronic pain clinic attendance and health care utilization: A retrospective analysis.

BACKGROUND: Pediatric chronic pain is common, disabling, and costly. Children with chronic pain have high health care utilization in that they are seen by multiple health care providers, have frequent emergency room visits, and require many diagnostic tests. Pediatric health care utilization relating to direct health care services and associated costs of attendance at chronic pain clinics in Canada has not been well described. AIM: The purpose of this project was to analyze the cost of physician services for individuals attending an interprofessional pediatric chronic pain clinic over an 8-year span including years before, during, and after treatment. METHODS: Physician claims were extracted from the Ontario Health Insurance Plan (OHIP) Claims History Database and retrospectively reviewed over 8 fiscal years for 100 new patients seen at the Chronic Pain Clinic at the Hospital for Sick Children. The utilization metrics analyzed included physician consultations and follow-up appointments, emergency room visits, lab tests, and diagnostic imaging. These data reflected 2 years prior to the first chronic pain clinic appointment, year of initial appointment, and five subsequent years. RESULTS: Health care utilization based on OHIP claims related to physician services and cost analysis showed an increase during the 2 years prior to first chronic pain clinic appointment, a decrease during the year of initial appointment, and a further decrease over the subsequent 5 years. CONCLUSIONS: Further prospective research is required to establish whether attendance at the chronic pain clinic caused the reduction in health care services and costs and, if so, to identify the effective components of treatment.

Contexte: La douleur chronique pédiatrique est fréquente, invalidante et coûteuse. Les enfants qui souffrent de douleur chronique sont de grands utilisateurs des services de santé car ils sont suivis par de multiples prestataires de soins, se rendent souvent à l'urgence et nécessitent de nombreux tests diagnostiques. L'utilisation de services de santé pédiatriques en ce qui concerne les services de santé directs et les coûts afférents à la fréquentation de cliniques de la douleur chronique au Canada est peu documentée.But: Ce projet avait pour but d'analyser le coût des services médicaux pour les personnes fréquentant une clinique interprofessionnelle de la douleur chronique pédiatrique pendant une période de huit ans couvrant les années avant, pendant et après le traitement.Méthodes: Les demandes de paiement des médecins ont été extraites de la base de données portant sur l'historique des demandes de paiement auprès de l'Assurance-santé de l'Ontario (OHIP) et ont été examinées rétrospectivement sur une période de huit exercices financiers pour 100 nouveaux patients suivis à la clinique de la douleur chronique de l'Hôpital pour enfants malades. Parmi les mesures relatives à l'utilisation qui ont été analysées, on compte : les consultations auprès de médecins et les rendez-vous de suivi; les visites à l'urgence; les tests de laboratoire; et l'imagerie diagnostique. Les données portaient sur les deux années précédant le premier rendez-vous à la clinique de la douleur chronique, l'année du premier rendez-vous et les cinq années suivantes.Résultats: En se fondant sur les demandes de paiement présentées à l'OHIP, l'analyse de l'utilisation et des coûts des services de santé a démontré que ces derniers avaient augmenté au cours des deux années précédent le premier rendez-vous à la Clinique de la douleur chronique, qu'ils avaient diminué pendant l'année du premier rendez-vous et qu'ils avaient à nouveau diminué au cours des cinq années suivantes.Conclusions: D'autres études prospectives sont nécessaires pour établir si la fréquentation d'une clinique de la douleur chronique a donné lieu à la réduction de l'utilisation et des coûts des services de santé et, le cas échéant, pour cerner les composantes du traitement qui sont efficaces.

Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research.

BACKGROUND: Chronic pain affects more than 6 million Canadians. Patients need to be involved in setting research priorities to ensure a focus on areas important to those who will be most impacted by the results. AIMS: The aim of this study was to leverage patient experiences to identify chronic pain research priorities in Canada. METHOD: The process was informed by the James Lind Alliance. After gathering an exhaustive list of questions using surveys, town hall meetings, interviews, and social media consultations, we used a computerized Delphi with four successive iterations to select the final list of research priorities. The final Delphi round was conducted by a panel of ten patients living with chronic pain and ten clinicians from different disciplines. RESULTS: We received more than 5000 suggestions from 1500 people. The Delphi process led to the identification of 14 questions fitting under the following 4 themes: (1) improving knowledge and competencies in chronic pain; (2) improving patient-centered chronic pain care; (3) preventing chronic pain and reducing associated symptoms; and (4) improving access to and coordination of patient-centered chronic pain care. Challenges included the issue of chronic pain being ubiquitous to many diseases, leading to many initial suggestions focusing on these diseases. We also identified the need for further engagement efforts with marginalized groups in order to validate the priorities identified or identify different sets of priorities specific to these groups. CONCLUSION: The priorities identified can guide patient-oriented chronic pain research to ultimately improve the care offered to people living with chronic pain.

Contexte: La douleur chronique affecte plus de six millions de Canadiens. Les patients doivent participer à l'établissement des priorités de recherche afin de s'assurer que l'accent soit mis sur les aspects les plus importants aux yeux de ceux qui seront les plus touchés par les résultats.Buts: Tirer parti de l'expérience des patients afin d'établir les priorités de la recherche en matière de douleur chronique au Canada.Méthode: Le processus s'est impiré de la James Lind Alliance. Après avoir dressé une liste exhaustive de questions à l'aide d'enquêtes, d'assemblées publiques, d'entrevues et de consultations via les médias sociaux, nous avons utilisé un processus Delphi informatisé comprenant quatre itérations successives afin de sélectionner la liste finale de priorités de recherche. Le dernier tour du processus Delphi a été mené par un panel composé de 10 patients souffrant de douleur chronique et de 10 cliniciens issus de différentes disciplines.Résultats: Nous avons reçu plus de 5 000 suggestions provenant de 1 500 personnes. Le processus Delphi a permis de déterminer 14 questions qui relèvent des quatre thèmes suivants : (1) améliorer les connaissances et les compétences en matière de douleur chronique ; (2) améliorer les soins axés sur le patient pour contrer la douleur chronique; (3) prévenir la douleur chronique et réduire les symptômes qui y sont associés ; et (4) améliorer l'accès aux soins axés sur le patient pour contrer la douleur chronique et la coordination entre ces soins. Parmi les défis qui se sont présentés, on compte le fait que la douleur chronique soit omniprésente dans de nombreuses maladies, de sorte qu'un grand nombre des suggestions initialement formulées portaient sur ces maladies. Nous avons également déterminé que davantage d'efforts devaient être déployés pour assurer la participation des groupes marginalisés dans le but de valider les priorités déterminées ou déterminer d'autres priorités spécifiques à ces groupes.Conclusion: Les priorités déterminées peuvent orienter la recherche axée sur le patient pour contrer la douleur chronique dans le but ultime d'améliorer les soins offerts aux personnes qui souffrent de douleur chronique.

A parent-science partnership to improve postsurgical pain management in young children: Co-development and usability testing of the Achy Penguin smartphone-based app.

BACKGROUND: Young children are at risk for poorly managed pain after surgery, with significant negative consequence to their quality of life and health outcomes. Mobile applications offer a highly accessible, engaging, and interactive medium to improve pain assessment and management; however, they generally lack scientific foundation or support. AIMS: The aims of this study were to describe a successful parent-science partnership in the development and testing of Achy Penguin, a parent-developed iOS app to help assess and manage acute pain in young children, and to evaluate and refine the usability of Achy Penguin in young children with acute postoperative pain. METHODS: Three cycles of iterative usability testing were conducted with 20 4- to 7-year-old children (M = 5.8 years) in hospital who had recently undergone surgery (n = 6-7 children/cycle). Semistructured qualitative interviews were analyzed using simple content analysis. RESULTS: Feedback from children and further integration of evidence-based pediatric pain knowledge led to refinements in app pain assessment and management content, as well as app flow and functionality. Changes improved children's ease of use and understanding and satisfaction by simplifying language in app instructions and content, adding audio and pictorial instructions, and increasing the engagement, interactiveness, immersiveness, and general appeal of pain management strategies. CONCLUSIONS: This article showcases the value of collaborative partnerships between various stakeholders (parents, app developers, and researcher/health care providers) to address gaps in pediatric pain care. The Achy Penguin app shows promise for improving pain assessment and management in young children, although further evaluation of app effectiveness and implementation is warranted.

Contexte: Les jeunes enfants sont à risque d'une mauvaise prise en charge de leur douleur après une chirurgie, ce qui entraîne des conséquences négatives sur leur qualité de vie et leurs issues de santé. Les applications mobiles sont un médium très accessible, convivial et interactif pour améliorer l'évaluation et la prise en charge de la douleur. Toutefois, elles n'ont généralement pas de soutien ou de fondements scientifiques.Buts: Décrire un partenariat parent-science réussi qui avait pour but de développer et de tester Achy Penguin, une application iOS développée avec l'aide des parents pour faciliter l'évaluation et la prise en charge de la douleur aigue chez les jeunes enfants, ainsi que pour évaluer et perfectionner la facilité d'utilisation de Achy Penguin chez les jeunes enfants souffrant de douleur postopératoire aiguë.Méthodes: Trois cycles itératifs de tests portant sur la facilité d'utilisation ont été menés auprès de 20 enfants âgés de quatre à sept ans (M = 5,8 ans) à l'hôpital qui avaient été soumis à une chirurgie récemment (n = 6 ­ 7 enfants/cycle). Des entrevues qualitatives semi-structurées ont été analysées à l'aide d'une analyse de contenu simple.Résultats: La rétroaction provenant des enfants et une plus grande intégration des connaissances en matière de douleur pédiatrique fondées sur des données probantes ont donné lieu à une amélioration du contenu sur l'évaluation et la prise en charge de la douleurConclusions: Cet article démontre la valeur des partenariats collaboratifs entre différentes parties prenantes (parents, développeurs d'applications, chercheurs et prestataires de soins de santé) afin de combler les lacunes existantes dans les soins pédiatriques pour traiter la douleur. L'application Achy Penguin est prometteuse pour améliorer l'évaluation et la prise en charge de la douleur chez les jeunes enfants, bien qu'une évaluation plus poussée de son efficacité et de sa mise en oeuvre soit nécessaire.

The quality of information about sickle cell disease on the Internet for youth.

BACKGROUND: Adolescence is a vulnerable time for teens with sickle cell disease (SCD). Although there is evidence to support the use of web-based education to promote self-management skills in patients with chronic illnesses, the quality of SCD-related information on the Internet has not been assessed. PROCEDURE: A website review was conducted to appraise the quality, content, accuracy, readability, and desirability of online information for the adolescents with SCD. Relevant keywords were searched on the most popular search engines. Websites meeting predetermined criteria were reviewed. The quality of information was appraised using the validated DISCERN tool. Two physicians independently rated website completeness and accuracy. Readability of the sites was documented using the simple measure of gobbledygook (SMOG) scores and the Flesch Reading Ease (FRE). The website features considered desirable by youth were tracked. RESULTS: Search results yielded >600 websites with 25 unique hits meeting criteria. The overall quality of the information was "fair" and the average DISCERN rating score was 50.1 (±9.3, range 31.0-67.5). Only 12 of 25 (48%) websites had scores >50. The average completeness score was 20 of 29 (±5, range 12-27). No errors were identified. The mean SMOG score was 13.04 (±2.80, range 10.21-22.85) and the mean FRE score was 46.05 (±11.47; range 17.50-66.10), suggesting that the material was written well beyond the acceptable reading level for patient education. The websites were text-heavy and lacked the features that appeal to youth (chat, games, videos, etc.). CONCLUSION: Given the paucity of high-quality health information available for the teens with SCD, it is essential that additional online resources be developed.