Development of recommendations for a minimum dataset for Identifying Social factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in pain research.

There is increasing recognition of the need for researchers to collect and report data that can illuminate health inequities. In pain research, routinely collecting equity-relevant data has the potential to inform about the generalisability of findings; whether the intervention has differential effects across strata of society; or it could be used to guide population targeting for clinical studies. Developing clarity and consensus on what data should be collected and how to collect it is required to prompt researchers to further consider equity issues in the planning, conduct, interpretation, and reporting of research. The overarching aim of the 'Identifying Social Factors that Stratify Health Opportunities and Outcomes' (ISSHOOs) in pain research project is to provide researchers in the pain field with recommendations to guide the routine collection of equity-relevant data. The design of this project is consistent with the methods outlined in the 'Guidance for Developers of Health Research Reporting Guidelines' and involves 4 stages: (i) Scoping review; (ii) Delphi Study; (iii) Consensus Meeting; and (iv) Focus Groups. This stakeholder-engaged project will produce a minimum dataset that has global, expert consensus. Results will be disseminated along with explanation and elaboration as a crucial step towards facilitating future action to address avoidable disparities in pain outcomes.

Reflections on patient engagement by patient partners: how it can go wrong.

As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation" with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term 'patient engagement gone wrong.' These examples have been anonymized and presented as four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. The examples provided are intended to demonstrate that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable examples, and which will lead to better project outcomes and experiences for all team members.

We are six patient partners in Canada who aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation," where patient partners are members of the teams, rather than participants in research or those seeking clinical care. It appears more has been written on the benefits rather than the risks of patient engagement and we feel it is important to document and share what we call 'patient engagement gone wrong.' We have anonymized these examples and sorted them into four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. These statements and their examples are meant to show that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. With this commentary, we do not mean to lay blame, and instead wish to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these examples, as that is the only way to change these all too recognizable statements, and which will lead to better project outcomes and experiences for all team members.

Designing a Child-, Family-, and Healthcare Provider-Centered Procedure Room in a Tertiary Care Children's Hospital.

AIM: The study aim was to co-design new pediatric procedure room prototypes with children, caregivers, and healthcare providers (HCPs). BACKGROUND: Medical procedures can cause pain and anxiety for children and their families. If spaces are not designed for patients' needs, procedures may take longer, require sedation, and result in an inferior care experience. Involving HCPs in co-designing optimal spaces can result in more efficient and safer environments. co-designing spaces with patients and their families can inform psychologically safer and less traumatic environments. METHODS: We followed human-centered design methodology. Data were collected via semi-structured interviews, field observations, and two multidisciplinary design workshops with patients, caregivers, and HCPs. Themes from the data were extracted using a content analysis and used to make evidence-informed recommendations for design features. RESULTS: The study took place from October 2021 to February 2022. Patients, families, and HCPs reported similar needs: (1) control over the environment, including the ability to adjust lighting, temperature, and sound; (2) space that supports patient privacy; (3) the use of evidence-based pain reduction and distraction methods; (4) attention to the sensory environment, including visual (light, color), tactile (textures of furniture and equipment), auditory, and olfactory stimuli; (5) human factors organization of the space and equipment; (6) accessible and equitable spatial design; and (7) the significance of the journey leading up to and after the procedure. CONCLUSIONS: It is feasible to co-design procedure rooms that support evidence-based psychological, physical, and pharmacological interventions that are known to minimize pain for children.

Using PROGRESS-plus to identify current approaches to the collection and reporting of equity-relevant data: a scoping review.

OBJECTIVES: Our objectives were to identify what and how data relating to the social determinants of health are collected and reported in equity-relevant studies and map these data to the PROGRESS-Plus framework. STUDY DESIGN AND SETTING: We performed a scoping review. We ran two systematic searches of MEDLINE and Embase for equity-relevant studies published during 2021. We included studies in any language without limitations to participant characteristics. Included studies were required to have collected and reported at least two participant variables relevant to evaluating individual-level social determinants of health. We applied the PROGRESS-Plus framework to identify and organize these data. RESULTS: We extracted data from 200 equity-relevant studies, providing 962 items defined by PROGRESS-Plus. A median of 4 (interquartile range = 2) PROGRESS-Plus items were reported in the included studies. 92% of studies reported age; 78% reported sex/gender; 65% reported educational attainment; 49% reported socioeconomic status; 45% reported race; 44% reported social capital; 33% reported occupation; 14% reported place and 9% reported religion. CONCLUSION: Our synthesis demonstrated that researchers currently collect a limited range of equity-relevant data, but usefully provides a range of examples spanning PROGRESS-Plus to inform the development of improved, standardized practices.

"We survived the pandemic together": The impact of the COVID-19 pandemic on Canadian families living with chronic pain.

Introduction: Pediatric chronic pain is a significant problem in Canada, affecting one in five youth. This study describes the impact of the pandemic on the experiences of Canadian families living with chronic pain through interviews with youth living with chronic pain, parents, and siblings. Methods: Employing a qualitative descriptive design, in-depth semistructured interviews were completed with Canadian youth living with pain, as well as parents and siblings. Participants were not required to be related. Interviews were analyzed using a reflexive thematic analysis approach. Results: Forty-four interviews were completed with 14 parents, 19 youth with chronic pain, and 11 siblings from across the country. Three key themes were developed: (1) absorbing and shifting: the toll of the pandemic on the family system (e.g., loss of coping mechanisms, shifting roles to respond to the pandemic), (2) social ambiguity and abandonment (e.g., social sacrifice and abandonment by the health care system), and (3) building community resilience: familial adaptation to the pandemic (e.g., family cohesion, confidence, and self-management). Discussion/Conclusions: Youth, parents, and siblings reported that the pandemic impacted coping strategies across the family system. These results outline the challenges youth experienced managing their pain and overall health throughout the pandemic and the resilience built within families during this time. Going forward, it would be relevant to examine how racialized and structurally marginalized youth with chronic pain and their families experienced the pandemic. Future research should examine how unexpected benefits of the pandemic (e.g., increased confidence and self-management) may be sustained into the future.

Introduction: La douleur chronique pédiatrique est un problème important au Canada, qui touche un jeune sur cinq. Cette étude décrit les répercussions de la pandémie sur les expériences des familles canadiennes vivant avec la douleur chronique par des entrevues avec des jeunes vivant avec une douleur chronique, des parents et des frères et sœurs.Méthodes: À l'aide d'un devis descriptif qualitatif, des entretiens semi-structurés approfondis ont été réalisés auprès de jeunes Canadiens vivant avec la douleur, leurs parents, et leurs frères et sœurs. Il n'était pas nécessaire que les participants aient un lien familial. Les entretiens ont été analysés à l'aide d'une approche d'analyse thématique réflexive.Résultats: Quarante-quatre entretiens ont été réalisés auprès de 14 parents, 19 jeunes souffrant de douleur chronique et 11 frères et sœurs de tout le pays. Trois thèmes clés ont été abordés : (1) l'absorption et le changement : le coût de la pandémie pour le système familial (p. ex., perte de mécanismes d'adaptation, changement de rôles pour réagir à la pandémie), (2) l'ambiguïté sociale et l'abandon (p. ex., le sacrifice social et l'abandon par le système de soins de santé), et (3) le renforcement de la résilience communautaire : adaptation familiale à la pandémie (p. ex., cohésion familiale, confiance et auto-prise en charge).Discussion/Conclusions: Les jeunes, les parents et les frères et sœurs ont signalé que la pandémie avait eu des répercussions sur les stratégies d'adaptation dans l'ensemble du système familial. Ces résultats décrivent les défis rencontrés par les jeunes pour prendre en charge leur douleur et leur santé globale tout au long de la pandémie, ainsi que la résilience démontrée par les familles pendant cette période. À l'avenir, il serait pertinent d'examiner comment les personnes racialisées et les jeunes structurellement marginalisés souffrant de douleur chronique et leurs familles ont vécu la pandémie.Les recherches futures devraient examiner comment les avantages inattendus de la pandémie (par exemple, une confiance accrue et l'auto-prise en charge) peuvent être maintenus à l'avenir.

Pain, mental health and healthcare utilization: Impact of the COVID-19 pandemic on youth with chronic pain, parents and siblings.

BACKGROUND: Paediatric chronic pain was a public health emergency before the novel coronavirus (COVID-19) pandemic, and this problem is predicted to escalate. Pain tends to occur intergenerationally in families, and youth with chronic pain and their parents have high rates of mental health issues, which can further exacerbate pain. Siblings of youth with chronic pain have been largely overlooked in research, as well as the impact of the pandemic on posttraumatic stress disorder (PTSD) symptoms and healthcare utilization. METHODS: This cross-sectional study examined pain, mental health and healthcare utilization in three groups: youth with chronic pain (n = 357), parents of youth with chronic pain (n = 233) and siblings of youth with chronic pain (n = 156) during the COVID-19 pandemic in Canada. RESULTS: More so than with pain symptoms, the results revealed high levels of mental health symptoms (i.e. anxiety, depressive, and PTSD), particularly in individuals more personally impacted by the pandemic. The largest effect was seen on PTSD symptoms for all groups. For parents with chronic pain, greater personal COVID-19 impact was related to worse pain interference. Reported rates of healthcare utilization were strikingly high, with youth with chronic pain, parents (reporting on behalf of their children with chronic pain), and siblings of youth with chronic pain reporting that most consultations were due to pain. CONCLUSIONS: Longitudinal research assessing these outcomes across continued waves of the pandemic is needed to ensure timely, tailored and equitable access to pain and mental health assessment and treatment. SIGNIFICANCE: This study examined pain, mental health, substance use and healthcare utilization in youth with chronic pain, siblings and parents during the COVID-19 pandemic. Greater personal impact of the pandemic was not largely associated with poorer pain outcomes; however, it was associated with mental health, with the largest effect on PTSD symptoms. The high rates and significant association of COVID-19 impact with PTSD symptoms underscore the importance of including PTSD assessment as part of routine screening practices in pain clinics.

Experiences of Pediatric Pain Professionals Providing Care during the COVID-19 Pandemic: A Qualitative Study.

Chronic pain affects 1 in 5 youth, many of whom manage their pain using a biopsychosocial approach. The COVID-19 pandemic has impacted the way that healthcare is delivered. As part of a larger program of research, this study aimed to understand the impact of the pandemic on pediatric chronic pain care delivery including impact on patients' outcomes, from the perspective of pediatric healthcare providers. A qualitative descriptive study design was used and 21 healthcare providers from various professional roles, clinical settings, and geographic locations across Canada were interviewed. Using a reflexive thematic analysis approach 3 themes were developed: (1) duality of pandemic impact on youth with chronic pain (i.e., how the pandemic influenced self-management while also exacerbating existing socioeconomic inequalities); (2) changes to the healthcare system and clinical practices (i.e., triaging and access to care); (3) shift to virtual care (i.e., role of institutions and hybrid models of care). These findings outline provider perspectives on the positive and negative impacts of the pandemic on youth with chronic pain and highlight the role of socioeconomic status and access to care in relation to chronic pain management during the pandemic in a high-income country with a publicly funded healthcare system.

COVID-19 Pandemic Impact and Response in Canadian Pediatric Chronic Pain Care: A National Survey of Medical Directors and Pain Professionals.

Background: The COVID-19 pandemic presents one of the greatest threats to pediatric pain care seen in generations. Due to public health restrictions, many pediatric pain clinics halted in-person appointments, delaying and disrupting access to care. There is no existing research on the impacts of COVID-19 on pediatric chronic pain care in Canada or the challenges experienced by health care professionals and pain clinics. Aims: The aim of this study was to evaluate the impact of COVID-19 on Canadian pediatric chronic pain care by documenting how health care professionals provided care during the first six months of the pandemic. Methods: Two Canadian online cross-sectional surveys were conducted: one among Canadian pediatric pain clinic directors (Study 1) and another among multidisciplinary pediatric pain health care professionals (Study 2). Results: Responses from 13/13 Canadian pediatric pain clinics/rehabilitation programs indicated that all clinics provided virtual care during the pandemic. No significant changes were reported on the frequency of appointment requests. Most clinics reported no perceived change in patient pain levels (n = 9/13, 69%) or occurrence of pain flares (n = 10/13, 77%). Results from 151 individual health care professionals indicated that the majority (90%) of non-emergency department respondents were providing virtual care. The main challenges of virtual care included technological barriers, financial concerns, infrastructure and logistics, privacy, and clinical challenges. Conclusions: This study documented the impact of the COVID-19 pandemic on pediatric chronic pain care in Canada and highlighted the rapid shift to using virtual solutions. Simultaneously, respondents outlined current challenges and potential solutions to consider in the development of virtual care guidelines and policy in Canada.

Contexte: La pandémie de COVID-19 représente l'une des plus grandes menaces pour les soins de la douleur pédiatrique jamais connue depuis des générations. En raison de restrictions de santé publique, de nombreuses cliniques pédiatriques de la douleur ont interrompu les rendez-vous en personne, occasionnant ainsi des retards et des perturbations dans l'accès aux soins. Il n'existe pas de recherche sur les répercussions de la COVID-19 sur les soins pédiatriques de la douleur chronique au Canada ou sur les défis rencontrés par les professionnels des soins de santé et les cliniques de la douleur.Objectifs: L'objectif de cette étude était d'évaluer les répercussions de la COVID-19 sur les soins pédiatriques de la douleur chronique au Canada en documentant la façon dont les professionnels de la santé ont prodigué les soins au cours des six premiers mois de la pandémie.Méthodes: Deux enquêtes transversales canadiennes en ligne ont été menées : l'une auprès des directeurs de cliniques pédiatriques de la douleur canadiennes (Étude 1) et l'autre auprès de professionnels des soins de santé de la douleur pédiatriques multidisciplinaires (étude 2).Résultats: Les réponses obtenues de la part de 13 / 13 cliniques pédiatriques de la douleur / programmes de réadaptation ont indiqué que toutes les cliniques avaient fourni des soins virtuels pendant la pandémie. Aucun changement significatif n'a été rapporté sur la fréquence des demandes de rendez-vous. La plupart des cliniques n'ont signalé aucun changement perçu dans les niveaux de douleur des patients (n = 9/13, 69 %) ou la survenue de poussées douloureuses (n = 10/13, 77 %). Les résultats obtenus de 151 professionnels de la santé ont indiqué que la majorité (90 %) des répondants de département autres que les urgences fournissaient des soins virtuels. Les principaux défis des soins virtuels comprenaient les barrières technologiques, les préoccupations financières, l'infrastructure et la logistique, la confidentialité et les défis cliniques.Conclusions: Cette étude a documenté les répercussions de la pandémie de COVID-19 sur les soins pédiatriques de la douleur chronique au Canada et a mis en lumière le passage rapide à l'utilisation de solutions virtuelles. Simultanément, les répondants ont décrit les défis actuels et les solutions potentielles devant être tenues en compte dans l'élaboration de lignes directrices et de politiques sur les soins virtuels au Canada.

Individuals with tension and migraine headaches exhibit increased heart rate variability during post-stress mindfulness meditation practice but a decrease during a post-stress control condition - A randomized, controlled experiment.

BACKGROUND: Current research suggests that associations between headache conditions (migraine, tension) and imbalances in the autonomic nervous system (ANS) are due to stress-related dysregulation in the activity of the parasympathetic-sympathetic branches. Mindfulness meditation has demonstrated effectiveness in reducing pain-related distress, and in enhancing heart rate variability-a vagal-mediated marker of ANS balance. This study examined HRV during cognitive stress and mindfulness meditation in individuals with migraine and tension headaches. METHODS: Undergraduate students with tension and migraine headaches (n=36) and headache-free students (n=39) were recruited for an experiment involving HRV measurement during baseline, cognitive stress-induction, and after randomization to post-stress conditions of audio-guided mindfulness meditation practice (MMP) or mindfulness meditation description (MMD). HRV was derived using electrocardiograms as the absolute power in the high frequency bandwidth (ms2). A three-way ANOVA tested the effects of Group (headache vs. headache-free), Phase (baseline, stress, & post-stress), and Condition (MMP vs. MMD) on HRV. RESULTS: ANOVA revealed a significant three-way interaction. Simple effects tests indicated: 1) HRV increased significantly from stress to MMP for headache and headache-free groups (p<0.001), 2) significantly greater HRV for headache (p<0.001) and headache-free (p<0.05) groups during MMP compared to MMD, and 3) significantly lower HRV in the headache vs. headache-free group during the post-stress MMD condition (p<0.05). DISCUSSION: Results suggest mindfulness practice can promote effective heart rate regulation, and thereby promote effective recovery after a stressful event for individuals with headache conditions. Moreover, headache conditions may be associated with dysregulated stress recovery, thus more research is needed on the cardiovascular health and stress resilience of headache sufferers.