Assessing the Feasibility and Preliminary Effects of a Web-Based Self-Management Program for Chronic Noncancer Pain: Mixed Methods Study.

BACKGROUND: In Canada, adults with chronic noncancer pain face a persistent insufficiency of publicly funded resources, with the gold standard multidisciplinary pain treatment facilities unable to meet the high clinical demand. Web-based self-management programs cost-effectively increase access to pain management and can improve several aspects of physical and emotional functioning. Aiming to meet the demand for accessible, fully automated resources for individuals with chronic noncancer pain, we developed a French web- and evidence-based self-management program, Agir pour moi (APM). This program includes pain education and strategies to reduce stress, practice mindfulness, apply pacing, engage in physical activity, identify and manage thinking traps, sleep better, adapt diet, and sustain behavior change. OBJECTIVE: This study aims to assess the APM self-management program's feasibility, acceptability, and preliminary effects in adults awaiting specialized services from a center of expertise in chronic pain management. METHODS: We conducted a mixed methods study with an explanatory sequential design, including a web-based 1-arm trial and qualitative semistructured interviews. We present the results from both phases through integrative tables called joint displays. RESULTS: Response rates were 70% (44/63) at postintervention and 56% (35/63) at 3-month follow-up among the 63 consenting participants who provided self-assessed information at baseline. In total, 46% (29/63) of the participants completed the program. We interviewed 24% (15/63) of the participants. The interview's first theme revolved around the overall acceptance, user-friendliness, and engaging nature of the program. The second theme emphasized the differentiation between microlevel and macrolevel engagements. The third theme delved into the diverse effects observed, potentially influenced by the macrolevel engagements. Participants highlighted the features that impacted their self-efficacy and the adoption of self-management strategies. We observed indications of improvement in self-efficacy, pain intensity, pain interference, depression, and catastrophizing. Interviewees described these and various other effects as potentially influenced by macrolevel engagement through behavioral change. CONCLUSIONS: These findings provided preliminary evidence that the APM self-management program and research methods are feasible. However, some participants expressed the need for at least phone reminders and minimal support from a professional available to answer questions over the first few weeks of the program to engage. Recruitment strategies of a future randomized controlled trial should focus on attracting a broader representation of individuals with chronic pain in terms of gender and ethnicity. TRIAL REGISTRATION: ClinicalTrials.gov NCT05319652; https://clinicaltrials.gov/study/NCT05319652.

Codéveloppement d'un programme d'autogestion de la douleur chronique en ligne: un projet de recherche basé sur la conception et axé sur l'engagement des patients.

Introduction: L'autogestion est une approche privilégiée pour gérer la douleur chronique. Jusqu'à tout récemment, aucun programme d'autogestion en français, en ligne et codéveloppé avec des patients partenaires atteints de douleur n'était accessible gratuitement. Pourtant, la littérature pointe vers l'inclusion de ces partenaires aux équipes de développement, permettant une meilleure considération de leurs besoins et préférences. Objectif: Cette étude visait le codéveloppement d'un tel programme d'autogestion de la douleur chronique, réalisable sans le soutien d'un professionnel de la santé. Méthode: La démarche s'inscrit dans la recherche basée sur la conception et est réalisée dans le cadre d'un partenariat étroit entre chercheurs, partenaires atteints de douleur chronique, professionnels de la santé, étudiants en médecine et graphiste. Nous avons principalement basé le contenu du programme sur une revue systématique de la littérature, des guides de pratique, l'expérience clinique et l'expertise expérientielle des patients. Le codéveloppement a été réalisé en plusieurs cycles itératifs, dont trois mises à l'essai. Résultats: Grâce à l'apport des parties prenantes, nous avons codéveloppé le programme « Agir pour moi ¼. L'identité du programme, son contenu, sa structure et les modalités d'apprentissage proposées soutiennent pas à pas le développement de compétences et l'application de stratégies d'autogestion par soi-même. Ces démarches sont favorisées par l'intégration de témoignages positifs, d'un contenu empreint de bienveillance et d'une utilisation accrue de techniques de changement de comportement. Conclusion: L'approche de recherche choisie a permis de créer un environnement d'apprentissage jugé bienveillant, susceptible de soutenir le sentiment d'auto-efficacité et la motivation.

Co-creation of a post-traumatic brain injury sexuality information toolkit: a patient-oriented project.

AIM: Different studies and two clinical practice guidelines emphasize the necessity to provide patients undergoing rehabilitation with information about commonly occurring changes in sexuality following traumatic brain injury (TBI). The purpose of this study was to co-create information resources for individuals with moderate to severe TBI and their partners to consult during rehabilitation. METHODS: An iterative user-centered design was used, combining focus group and individual interviews. A convenience sample of individuals with TBI and life partners was constituted. RESULTS: The needs and expectations of these participants in terms of form and content of an information toolkit on post-TBI sexuality were explored. The subjects that matched the interests and needs of participants were numerous and supported by the literature. Contrasting with existing written resources, the participants' views oriented the creation process toward the development of a toolkit including five audiovisual presentations, a double-sided information sheet, and a checklist. CONCLUSIONS: A similar approach of co-creation could be used to develop other information packs aimed at patients with other disabilities. The created material is expected to be a usable and useful tool for individuals with TBI, which can support clinicians in addressing the subject of sexuality.Implications for rehabilitationThe central role held by individuals with moderate to severe traumatic brain injury, in identifying the sexuality related topics to be addressed and the form of resources to be created, led to a better understanding of their needs.This patient-centered research brought solutions to difficulties related to the understanding of health information, prevalent among patients.This patient-oriented project highlights the necessity for adequacy between the health information provided by rehabilitation professionals and the capacity of their patients' to seek for, process, and understand its content.

Traumatic Brain Injury and Sexuality: User Experience Study of an Information Toolkit.

BACKGROUND: After having sustained a traumatic brain injury (TBI), individuals are at risk of functional impairments in information processing, abstract reasoning, executive functioning, attention, and memory. This affects different aspects of communicative functioning. Specific strategies can be adopted to improve the provision of health information to individuals with TBI, including the development of written materials and nonwritten media. OBJECTIVE: A user-centered design was adopted to codevelop four audiovisual presentations, a double-sided information sheet, and a checklist aimed at informing individuals about post-TBI sexuality. The last phase of the project was the assessment of the user experience of the information toolkit, based on the User Experience Honeycomb model. METHODS: Overall, two small group discussions and one individual semistructured interview were conducted with individuals with moderate to severe TBI. RESULTS: The participants mentioned that the toolkit was easily usable and would have fulfilled a need for information on post-TBI sexuality during or after rehabilitation. They mostly agreed that the minimalist visual content was well-organized, attractive, and relevant. The information was easily located, the tools were accessible in terms of reading and visibility, and the content was also considered credible. CONCLUSIONS: Aspects such as usability, usefulness, desirability, accessibility, credibility, and findability of information were viewed positively by the participants. Further piloting of the toolkit is recommended to explore its effects on the awareness of the potential sexual repercussions of TBI in individuals and partners.

Why Do We Need a New Clinical Practice Guideline for Moderate to Severe Traumatic Brain Injury?

OBJECTIVE: Clinical practice guidelines (CPGs) aim to improve quality and consistency of healthcare services. A Canadian group of researchers, clinicians, and policy makers developed/adapted a CPG for rehabilitation post-moderate to severe traumatic brain injury (MSTBI) to respond to end users' needs in acute care and rehabilitation settings. METHODS: The rigorous CPG development process began assessing needs and expectations of end users, then appraised existing CPGs, and, during a consensus conference, produced fundamental and priority recommendations. We also surveyed end users' perceptions of implementation gaps to determine future implementation strategies to optimize adherence to the CPG. RESULTS: The unique bilingual (French and English) CPG consists of 266 recommendations (of which 126 are new recommendations), addressing top priorities for MSTBI, rationale, process indicators, and implementations tools (eg, algorithms and benchmarks). CONCLUSION: The novel approach of consulting and working with end users to develop a CPG for MSTBI should influence knowledge uptake for clinicians wanting to provide evidence-based care.

Assessment of Users' Needs and Expectations Toward Clinical Practice Guidelines to Support the Rehabilitation of Adults With Moderate to Severe Traumatic Brain Injury.

OBJECTIVE: Stakeholder engagement in clinical practice guideline (CPG) creation is thought to increase relevance of CPGs and facilitate their implementation. The objectives were to survey stakeholders involved in the care of adults with traumatic brain injury (TBI) regarding general perceptions of CPGs, key elements to be included, and needs and expectations about format and implementation strategy. SETTINGS: Hospitals and inpatient and outpatient rehabilitation facilities providing services to persons with TBI. PARTICIPANTS: Stakeholders identified as primary end users of the CPG: clinicians, hospital leaders, health system managers, and funders in Quebec and Ontario (Canada). DESIGN: Cross-sectional online survey conducted between May and September 2014. RESULTS: In total, 332 individuals expressed their needs and expectations. Despite positive perceptions of CPGs, only a small proportion of respondents used them. Intensity and frequency of interventions, behaviors disorders and cognitive function impairment, and social participation and community life were important subjects to cover in the CPG. Finally, respondents asked for specific recommendations including a ranking of recommendations based on level of underlying evidence. CONCLUSION: Respondents have important expectations toward a CPG. We anticipate that early and meaningful engagement of end users could facilitate CPG implementation.

A Survey of Perceived Implementation Gaps for a Clinical Practice Guideline for the Rehabilitation of Adults With Moderate to Severe Traumatic Brain Injury.

OBJECTIVE: Appraising current practice is an important prerequisite for implementation of clinical practice guidelines (CPGs). The study objective was to determine the perceived level of implementation, priority, and feasibility of a subset of key CPG recommendations for the rehabilitation of individuals with moderate to severe traumatic brain injury (MSTBI). METHODS: Fifty-one teams at acute care and rehabilitation facilities were invited to complete an electronic survey addressing the perceived level of implementation, priority, and feasibility of 109 fundamental and priority recommendations from the CPG-MSTBI. RESULTS: Forty-four clinical teams responded across 2 Canadian provinces. Most of the recommendations were deemed as "fully" or "mostly" implemented, while relative gaps in implementation were perceived in recommendations regarding coordination with mental health and addiction providers (>75% of respondents indicated low levels of implementation), "Caregivers and Families" (26%), and "Psychosocial and Adaptation Issues" (25%). Priority levels and perceived feasibility were generally high (>60% and >86%, respectively) for recommendations with low levels of implementation. Priority recommendations for implementation were identified for both acute care and rehabilitation settings in Québec and Ontario. CONCLUSIONS: Assessment of clinician perception provides a helpful perspective for implementation. Exploring perceived implementation gaps based on users' needs and expectation should be a part of an implementation process.

Unique Features of the INESSS-ONF Rehabilitation Guidelines for Moderate to Severe Traumatic Brain Injury: Responding to Users' Needs.

OBJECTIVE: Traumatic brain injury (TBI) clinical practice guidelines are a potential solution to rapidly expanding literature. The project objective was to convene experts to develop a unique set of TBI rehabilitation recommendations incorporating users' priorities for format and implementation tools including indicators of adherence. METHODS: The Guidelines Adaptation & Development Cycle informed recommendation development. Published TBI recommendations were identified and tabulated. Experts convened to adapt or, where appropriate, develop new evidence-based recommendations. These draft recommendations were validated by systematically reviewing relevant literature. Surveys of experts and target users were triangulated with strength of evidence to identify priority topics. RESULTS: The final recommendation set included a rationale, implementation tools (algorithms/adherence indicators), key process indicators, and evidence summaries, and were divided in 2 sections: Section I: Components of the Optimal TBI Rehabilitation System (71 recommendations) and Section II: Assessment and Rehabilitation of Brain Injury Sequelae (195 recommendations). The recommendations address top priorities for the TBI rehabilitation system: (1) intensity/frequency of interventions; (2) rehabilitation models; (3) duration of interventions; and (4) continuity-of-care mechanisms. Key sequelae addressed (1) behavioral disorders; (2) cognitive dysfunction; (3) fatigue and sleep disturbances; and (4) mental health. CONCLUSION: This TBI rehabilitation guideline used a robust development process to address users' priorities.