Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review.

PURPOSE: To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). MATERIALS AND METHODS: Eligible studies reported on psychological interventions for individuals of all ages with EDS and/or HSD. All studies published in English were included, with no restrictions to publication year or status. MEDLINE, CINAHL, EMBASE, and PsycINFO were searched. Two reviewers independently screened studies and abstracted data. RESULTS: This scoping review included 10 studies reporting on EDS, HSD, or both. Only cohort studies and case studies were identified. Four studies investigated Cognitive Behavioural Therapy (CBT), one investigated Dialectical Behavioural Therapy (DBT), two investigated psychoeducation, two investigated Intensive Interdisciplinary Pain Treatment (IIPT), and one investigated Acceptance Commitment Therapy (ACT). Interventions targeted pain management, self-destructive behaviours, and related psychological issues (e.g., depression/anxiety). Sample sizes were small (n < 50) for most studies and interventions were generally poorly described. CONCLUSIONS: There is a critical need for high-quality research surrounding psychological interventions for individuals with EDS/HSD. Psychological interventions for these individuals are understudied and existing studies lack validity. Researchers should investigate psychological interventions for individuals with all types of EDS/HSD with high-quality studies to validate findings from the existing studies.

The State of Patient Engagement among Pain Research Trainees in Canada: Results of a National Web-Based Survey.

Background: Patient engagement (PE) in research refers to partnering with people with lived experience (e.g., patients, caregivers, family) as collaborators in the research process. Although PE is increasingly being recognized as an important aspect of health research, the current state of PE among pain research trainees in Canada is unclear. Aims: The aims of this study were to describe perspectives about and experiences with PE among trainees conducting pain research in Canada, to identify perceived barriers and facilitators, and to describe recommendations to improve its implementation. Methods: A cross-sectional web-based survey (English and French) was administered to trainees at any level conducting pain research at any Canadian academic institution. Results: A total of 128 responses were received; 115 responses were complete and included in the final analysis. The majority of respondents identified as women (90/115; 78.3%), in graduate school (83/115; 72.2%), and conducting clinical pain research (83/115; 72.2%). Most respondents (103/115; 89.6%) indicated that PE is "very" or "extremely" important. Despite this, only a minority of respondents (23/111; 20.7%) indicated that they "often" or "always" implement PE within their own research. The most common barrier identified was lack of knowledge regarding the practical implementation of PE, and understanding its positive value was the most commonly reported facilitator. Recommendations for improving the implementation of PE were diverse. Conclusions: Despite viewing PE as important in research, a minority of pain research trainees regularly implement PE. Results highlight perceived barriers and facilitators to PE and provide insight to inform the development of future training and other enabling initiatives.

Contexte: L'engagement des patients dans la recherche fait référence au partenariat avec des personnes ayant une expérience vécue (p. ex. des patients, des soignants ou des membres de la famille) en tant que collaborateurs dans le processus de recherche. Bien que l'engagement des patients soit de plus en plus reconnu comme un aspect important de la recherche en santé, son état actuel chez les stagiaires en recherche sur la douleur au Canada n'est pas clair.Objectif: Les objectifs de cette étude étaient de décrire les points de vue et les expériences sur l'engagement des patients chez les stagiaires menant des études sur la douleur au Canada, de recenser les obstacles et les facilitateurs perçus et de formuler des recommandations pour améliorer sa mise en œuvre.Méthodes: Une enquête transversale sur le Web (en anglais et en français) a été menée auprès des stagiaires de tout niveau menant des études sur la douleur dans n'importe quel établissement universitaire canadien.Résultats: Au total, 128 réponses ont été reçues; 115 réponses étaient complètes et ont été incluses dans l'analyse finale. La majorité des répondants ont indiqué qu'elles étaient des femmes (90/115; 78,3 %), qu'elles étaient inscrites aux cycles supérieures (83/115 ; 72,2 %) et qu'elles effectuaient des études cliniques sur la douleur (83/115 ; 72,2 %). La plupart des répondants (103/115 ; 89,6 %) ont indiqué que l'engagement était « très ¼ ou « extrêmement ¼ important. Malgré cela, seule une minorité de répondants (23/111; 20,7 %) ont indiqué qu'ils mettaient en œuvre l'engagement des patients « souvent ¼ ou « toujours ¼ dans leur propre recherche. L'obstacle le plus fréquemment énoncé était le manque de connaissances concernant la mise en œuvre pratique de l'engagement des patients, et la compréhension de sa valeur positive était le facilitateur le plus souvent signalé. Les recommandations visant à améliorer la mise en œuvre de l'engagement des patients étaient diverses.Conclusions: Bien que l'engagement des patients soit considéré comme important dans la recherche, une minorité de stagiaires en recherche sur la douleur le mettent régulièrement en œuvre. Les résultats mettent en évidence les obstacles et les facilitateurs perçus pour l'engagement des patients et fournissent un aperçu pour éclairer l'élaboration de la formation future et d'autres initiatives habilitantes.

Guidance on authorship with and acknowledgement of patient partners in patient-oriented research.

The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates patient partners throughout its governance and operations meaning that patient partners may contribute to research projects in ways that warrant scientific authorship as defined by the International Committee of Medical Journal Editors. The Network did a brief informal review of guidance on patient authorship in 2019, but could not find any practical documentation to guide its members on this topic. Note the term patient partner here refers to a patient (or caregiver or other person with lived experience) who is a partner or collaborator on a research team. This guidance does not address patients as participants in a research study. This guidance has been co-written by a group of researchers and patient partners of the Chronic Pain Network in an effort to address this gap. It is intended for both researchers and patient partner audiences. This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided. Teams that carry out patient-oriented research projects will require different preparation to empower all team members (researchers and patient partners) to discuss authorship and acknowledgement. To facilitate these conversations, we have included an overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship. Conversations about authorship can be difficult, even for established research teams. This guidance, and the resources discussed within it, are provided with the intention of making these conversations easier and more thoughtful.