The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome.

New insights into the phenotype of Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome-hypermobile type (hEDS) have raised many issues in relation to classification, diagnosis, assessment, and treatment. Within the multidisciplinary team, physical therapy plays a central role in management of individuals with hypermobility related disorders. However, many physical therapists are not familiar with the diagnostic criteria, prevalence, common clinical presentation, and management. This guideline aims to provide practitioners with the state of the art regarding the assessment and management of children, adolescents, and adults with JHS/hEDS. Due to the complexity of the symptoms in the profile of JHS/hEDS, the International Classification of Functioning, Disability and Health (ICF) is adopted as a central framework whereby the umbrella term of disability is used to encompass functions, activities and participation, as well as environmental and personal factors. The current evidence-based literature regarding the management of JHS/hEDS is limited in size and quality and there is insufficient research exploring the clinical outcomes of a number of interventions. Multicenter randomized controlled trials are warranted to assess the clinical and cost-effectiveness of interventions for children and adults. Until further multicenter trials are conducted, clinical decision-making should be based on theoretical and the current limited research evidence. For all individuals diagnosed with JHS/hEDS, international consensus and combined efforts to identify risk profiles would create a better understanding of the pathological mechanisms and the potential for optimizing health care for affected individuals. © 2017 Wiley Periodicals, Inc.

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.