Clinical practice guidelines (CPGs) are systematically developed statements designed to help practitioners and patients decide on health care for specific clinical circumstances
. CPGs are expected to improve the quality of care and patient outcomes
, and they are an important pillar of evidence-based practice
The development and/or adaptation of CPGs relies on a rigorous process encompassing a search for scientific evidence and its appraisal by experts such as researchers, clinicians, managers and decision-makers and, importantly, by patients
[4, 5]. During subsequent consensus meetings, the experts produce recommendations for care based on the scientific evidence and their experience
. In addition to scientific evidence and clinicians’ experience, best quality CPGs should consider the opinions and preferences of the target patient population
. This aspect is often addressed through the involvement of patient and population (IPP) in the process of CPG development. In the general field of medicine, Légaré et al. describe three broad types of IPP in CPG development: 1) communication of the CPG to the target patient population (for example guidelines are disseminated to patients that might be concerned or to their associations); 2) consultation with the patient population (via surveys or focus groups or scientific studies designed to get patients’ perspective on a given aspect of care); or 3) direct participation of patients and population in CPG development (such as involvement in consensus meetings). IPP is deemed to be an effective way to incorporate patients’ values, preferences, perspectives and knowledge in CPGs
. It is also seen as a way to improve the feasibility of implementation and comprehensiveness of CPGs, to promote patient and public influence over their development, and to adapt CPGs to the target population
Despite growing interest in the importance of, and challenges associated with IPP in the CPG development and adaptation process, there is a lack of knowledge about the best way to involve the patient and population in such activities
, and suggested frameworks for IPP in this process appear to have little empirical basis
. Only a few authors have empirically tested different methods to involve patients and populations in CPG development. Van Wersch and Eccles
 tested four different methods of IPP in CPG development while working with the North of England evidence-based development program. These methods were: 1) inviting individual patients to participate in multidisciplinary CPG development groups and assigning them the experts’ tasks of appraising evidence and helping to draft recommendations; 2) ‘one-off’ meetings with patients; 3) workshops with patients; and 4) incorporating a consumer advocate in guideline development groups. These authors drew many conclusions from their observations and experience. They showed that when involving individual patients (method 1), patients contributed infrequently to the discussions, had problems with the use of technical language and their contributions were not subsequently acted upon. In a ‘one-off’ meeting experience with patients, the authors found that patients also reported difficulties with understanding medical terminology and jargon, and their understanding of the use of scientific evidence in order to contribute to more cost-effective health care remained unclear. A series of workshops with patients, while relatively resource-intensive, allowed for the explanation of the technical elements of guideline development to patients, who could then engage in this process and make relevant suggestions. A final experiment incorporating a consumer advocate (instead of an actual patient) in guideline development groups was deemed effective because the advocate had previous similar experience and was familiar with the medical terminology. Indeed, he was used to having discussions with health professionals and felt confident speaking in the group. The authors concluded that no method was clearly superior to the others, and that further work was required on how best to get meaningful consumer involvement in CPG development
. More recently, Diaz Del Campo et al. reported their experience of two methods of IPP, the first being patient consultation (via in-depth interviews and focus groups) and the second being the active participation of patients in all steps in CPG development, such as appraisal of evidence or consensus development meetings. Based on their findings, the authors concluded that patient involvement in CPG development was very helpful to incorporate patients’ views and needs into CPGs, but that it was crucial to have specific support for patients, who must be precisely selected using defined eligibility criteria in order to facilitate an effective engagement
. den Breejen et al. explored the use of a Wiki tool in the development of CPGs on infertility. A Wiki is a webpage that can be modified by those who have access to it. In this study, the Wiki was built using MediaWiki software, and it was structured according to the draft recommendations of the guidelines. Over the seven months of the study, the Wiki attracted 298 visitors, yielding 289 recommendations that were subsequently rated in a top five or top three for each section of the guidelines. The authors concluded that the Wiki was a promising and feasible tool for patients to participate in guideline development and identify targets for improvement.
The scarcity of knowledge about how to best involve patients and populations in CPG development is problematic in the context of rehabilitation services. In rehabilitation, the adoption of CPG recommendations by clinicians and patients holds the potential to have a permanent and decisive impact on functional status, social participation and quality of life. Rehabilitation services typically focus on function and disabilities, including trying to alleviate chronic conditions that impact an individual’s participation in his or her usual activities. This specific context is one of the situations that strongly call for IPP in CPG development
. In addition, because rehabilitation is generally described as a client-centered field
, not involving patients and populations in defining CPGs for a given condition may appear counterintuitive. To add to the complexity, individuals who receive rehabilitation services often live with a variety of physical, communication-related, cognitive or intellectual disabilities that influence their day-to-day participation. These disabilities may make their active participation in the recommendation development process more challenging, albeit crucial. For example, an individual who suffers from a stroke might have severe aphasia that makes interacting with others more laborious. An individual living with a spinal cord injury might struggle with manipulating papers, including the numerous documents to be considered by the experts in CPG development. Other patients, for example those with traumatic brain injury (TBI), might have multiple disabilities, including cognitive problems that may make understanding scientific evidence very difficult, fatigue-related problems that limit participation in long meetings or physical limitations that make travelling to and accessing consensus meetings difficult.
It is crucial to increase our knowledge of effective ways to involve patients and populations with disabilities in the development of clinical practice guidelines. This is evident for several reasons: the growing popularity of CPGs in clinical reasoning and evidence-based practice, the increasing recognition of IPP in CPGs, the paucity of research in rehabilitation on IPP in CPGs, and the barriers that individuals with disabilities might experience while participating in CPG development in rehabilitation.
The goal of this pilot study is to document the acceptability, feasibility and effectiveness of two methods of involving patients with a disability in CPG development. The population of individuals with TBI was selected for this study, since a large-scale initiative to adapt and implement guidelines is currently in its early phases in Canada and questions were raised about patient participation in the development process. Given the often severe disabilities experienced by individuals with TBI, it is possible that the optimal method could be used with success in other populations often presenting multiple disabilities, such as those living with stroke, spinal cord injury or multiple sclerosis.