Recommendations From the 2013 Galveston Brain Injury Conference for Implementation of a Chronic Care Model in Brain Injury (2013)

THE GALVESTON BRAIN INJURY CONFERENCE (GBIC) has met for the last 13 years to address important topics in brain injury (BI). Sponsored by the Moody Foundation, the Transitional Learning Center, and the University of Texas Medical Branch—Galveston School of Health Professions, the GBIC annually convenes a small group of experts in a specific topical area in BI, with a goal of advancing research and clinical care. For the last 3 years, approximately 50 experts including consumer representatives in BI clinical practice, research, and policy focused on the topic of “Brain Injury as a Chronic Condition.” This concept was originally introduced by Masel and DeWitt,1 who underscored the importance of extending the focus of BI care beyond the acute setting to the lifelong needs of individuals with BI for ongoing medical treatment, prevention of secondary complications and comorbidities, psychosocial and vocational support, and services to achieve community reintegration. In 2011 and 2012, the GBIC group developed a detailed road map for moving the field from its current state toward addressing the lifelong needs of those living with BI through medical and psychosocial care and services, professional and lay education, research, and policy.2 GBIC leaders identified the Chronic Care Model (CCM) described by Wagner and colleagues3 (see the Figure) as the most widely accepted model for lifelong management in other medical conditions. As the Figure illustrates, CCM accurately depicts long-term management of chronic medical conditions as a highly dynamic process in which health system and community resources interact at system and provider levels to support patient self-management. To achieve improved outcomes through the model, these interactions are orchestrated to create a strong and sustained working relationship between an informed, activated patient and a prepared, proactive provider team. In applying CCM to BI, enhancing integration and communication between community and medical providers appears particularly important, since many of the medical issues (eg, cognitive, emotional, and behavior disorders) that are prominent in BI translate into social and vocational issues in the community. Along these same lines, medical, psychosocial, and family needs overlap considerably in BI. Nonetheless, the consensus of the expert group was that no major alterations in the model itself were required and that the immediate focus of the 2013 GBIC should be on beginning to specify tasks and goals for implementation.Figure: Chronic Care Model. Reprinted with permission from Wagner.4Participants in the 2013 meeting worked to translate the recommendations of the previous meetings into more concrete recommendations for changes in (1) the healthcare system and clinical practice, (2) self-management support, and (3) integration of community and medical supports and services. Two separate task forces addressed changes in the way in which healthcare is provided to individuals with BI. The first (guideline development) focused on identifying priority areas in which care guidelines were needed. The second (high-priority implementation) identified high-priority recommendations for more immediate practice changes. A third task force (self-management support) focused on developing recommendations for self-management and provider support of self-management, and a fourth (healthcare and community systems integration) focused specifically on community-medical systems integration. This article describes recommendations and their rationales emanating from these deliberations. HEALTHCARE SYSTEM REDESIGN: GUIDELINE DEVELOPMENT Changing current practice to more consistently address BI as a chronic condition requires development of a structured system that will drive appropriate assessments and treatments throughout the continuum of the disease. The vast array and complexity of BI-related problems make the development of such a system a daunting task that first requires their identification and prioritization. Once developed, the guidelines will need to be tested for effectiveness to ensure that they assist healthcare providers in meeting the lifelong challenges faced by their patients. In addition, the process of guideline development needs to be a collaborative effort of many diverse medical disciplines and organizations due to the diverse groups of healthcare professionals who treat people with BI. To begin the process of developing effective practice guidelines, several questions need to be addressed: To whom will the guidelines apply? Will all people with BI, regardless of severity, require the application of guidelines or should there be a means to stratify risk and, therefore, application of the guidelines? If the latter, a means to develop a risk stratification plan will be required and this in turn will likely need to be specific for each BI-related condition (eg, seizures, headaches, endocrine abnormalities). Who will be the beneficiaries of the guidelines? In addition to patients, should they also be developed to be of value to healthcare providers for purposes of pay for performance or insurers with the goal of decreasing healthcare costs? Who will apply the guidelines? Will it be only specialists in BI, or will it be necessary to expand the guidelines to primary care physicians and physician extenders to meet the growing population of people with BI? Will guidelines need to be incorporated into accountable care organizations or other healthcare systems in order to be effective? Finally, how can the effectiveness of the guideline application be assessed in quality-of-life improvement, prevention of morbidity and mortality, cost of care, or other measures? Regardless of how these issues are addressed, guidelines will only be effective if people with BI are easily identified and tracked, which will likely be best achieved through the application of a well-designed surveillance system. A registry of patients with BI will need to be embedded within local healthcare systems to track and identify the healthcare needs of people with BI. Considerable information technology support will be required to adequately develop such a system that includes carefully thought-out inputs to alert healthcare providers to patient assessment and treatment needs. Many such systems already exist. These systems push out reminders to healthcare professionals regarding issues such as vaccination updates and preventative healthcare assessments. The intended outcomes of these systems are improved patient health through a more effective and prudent utilization of healthcare resources. Selection of specific components or healthcare issues that need be addressed by a practice guideline requires the identification and compilation of both short- and long-term health-related issues faced by people with BI. An important first step has already been taken by an international consensus project that developed the International Classification of Function (ICF) Core Sets for traumatic brain injury (TBI). The ICF Core Sets for TBI provide a comprehensive list of needs that are categorized under specific health-related headings.5 Several other organizations have embarked on developing consensus-based guidelines for specific groups of patients, including the Veterans Health Administration and Department of Defense for mild TBI.6 Other organizations have developed guidelines for problems commonly encountered in BI. For example, the American Psychiatric Association has guidelines for the treatment of affective disorders including depression and anxiety that are common BI-related comorbidities. The American Academy of Neurology and the American Headache Society have developed treatment guidelines for seizure disorders and headache management, respectively. Although it may seem appropriate to simply adopt these existing guidelines, doing so would ignore the significant differences in the setting in which these conditions exist. The myriad of cognitive and behavioral problems associated with BI require a more thoughtful approach to treatment and guideline development. Nonetheless, these and other existing guidelines provide a solid framework from which adaptations can be made to meet the unique needs of people with BI. A reasonable starting point may be a compilation of existing guidelines developed for non-BI-populations that address problems commonly seen in patients with BI and that can serve as a foundation from which practice parameters specific for BI can be developed. All of these issues were considered in compiling a list of potential issues (see the Table 1) that would be the starting point for guideline development. While this list is by no means comprehensive, it represents the thought process of a group of clinicians, researchers, and administrators connected by the common thread of professional involvement in the care of people with BI. This list will almost certainly be modified, recognizing that greater input is needed from people with BI and their families in addition to reviewing prior work in this area, such as that completed by the ICF group.TABLE 1: Top-10 issues for guideline developmentOrganizations were also identified that could serve as collaborators to assist in the development of these guidelines, only some of which are mentioned in the Table. Regardless of what health or social problems are ultimately selected for guideline development, a surveillance system, as described previously, will be required to ensure that healthcare providers are equipped with a reliable and easy-to-use mechanism to effectively identify, assess, and treat people with BI throughout their lives. In addition to treatment guidelines, a framework for building an effective surveillance and registry system that meets the unique infrastructure of individual healthcare systems is needed to achieve the desired outcomes of optimal care. HEALTHCARE SYSTEM REDESIGN: HIGH-PRIORITY IMPLEMENTATION In redesigning the management of BI as a chronic condition, some eventual changes in the healthcare system will be based on new research and others will be revalidated care delivery methodologies that are adapted from other chronic conditions. However, some changes in care can be derived from the experience of seasoned clinicians. Implementation of these changes need not wait for empirical validation although eventual research may influence and further refine these practices. This section focuses on such practice changes that can be implemented quickly and are expected to have high impact on patient outcome and quality of life. Based on the extensive clinical experience of GBIC task force members in following individuals with BI over long periods of time, 2 major problems were identified that affect long-term outcomes of individuals with BI: (1) lack of knowledge regarding BI among primary care providers in the community and (2) lack of knowledge by individuals with BI and caregivers regarding community services and long-term self-management strategies. To address lack of knowledge by community physicians, 3 recommendations were made. First, physicians providing specialized care to persons with BI should ensure that physicians and other care providers who accept patients for continued care have all pertinent information needed to ensure optimal continuity of care. When discharging persons with BI, specialized BI physicians should speak directly to the physician who will provide medical management for the next epoch of recovery. This communication should provide a list of current issues influencing care and specific plans for addressing these issues. The specialized physician should take personal responsibility for ensuring that all pertinent transfer records, including the discharge summary, are transmitted to the receiving physician. The discharge summary should include all information needed for the accepting physician to continue the treatment regimen that was in place at the time of discharge. Second, the specialized physician should ensure that an appropriate community physician has been identified and that the timing of medical follow-up with this physician is appropriate to the patient's clinical state at the time of discharge. In general, patients discharged from an inpatient setting should have an appointment with the accepting community physician within 1 month of discharge. Such patients should have a follow-up appointment with a specialized provider within 6 months of discharge. After this follow-up encounter, the specialized physician should consult with the community physician to help ensure optimal ongoing care. Indigent/underresourced patients should be provided information regarding the most appropriate community resources. Third, when developing care recommendations for people with BI, specialized physicians should anticipate likely long-term needs and provide recommendations that can eventually be implemented. These recommendations should be individualized on the basis of the specialist's knowledge of factors, such as injury severity, current care issues, preinjury functioning, postinjury support systems, and anticipated late care needs. Elimination or minimization of late complications should be a primary concern. For example, when handing a patient off to a community physician, the specialized provider could provide information regarding community integration and return to work programming for a future time when the patient will have recovered to the point that these are realistic considerations. The specialized physician should anticipate possible late complications, such as depression, and provide appropriate referral options that can be pursued later by the community physician as needed. Referrals for supportive and respite services for the patient's primary care providers should be included. Given the increasing demands on specialty physicians' time, development of a menu or checklist of services and recommendations would be beneficial in facilitating communication with the community providers. This checklist can be added to over time, as more evidence accumulates for various treatments. For the second problem of lack of knowledge for persons with BI and care providers regarding community resources and long-term self-management, 3 additional recommendations were made. First, those discharged from care for BI or suspected BI should be provided with appropriate information regarding community resources at the time of discharge. For individuals with mild or suspected BI, this material might have a primarily educational focus with information on the expected, favorable course of recovery from mild BI and referral information for obtaining temporary symptomatic care until symptoms resolve. For those with more severe injuries, educational materials can also be included, but materials should appropriate referral information for specialized BI medical care and information regarding community and state such as BI groups and state vocational services. Second, individuals with BI should be provided with to social management This can be a mechanism to follow-up with appropriate community resources. more this can serve as a for of such as seizure and that will from medical each discharged with BI or suspected BI of would be by social work or management in a proactive effort to care needs. is that current resources may not support this proactive at a individuals discharged BI and caregivers should be provided information for appropriate social work and management Third, individuals discharged from medical care for BI should be provided with to self-management services that they can to or complications and recovery. A of such self-management should be to health and with BI will in almost all from appropriate optimal and While these will not all or most late problems from BI, they a foundation of that the of optimal from other services. information on self-management can be provided in and by providing to and that not chronic can it or is a patient that is important all such as or on patient self-management and such as or a support is a that is a of CCM (see the This is by the following between patient and of and educational that self-management knowledge and and diverse and diverse providers ongoing by and reminders to both and patients and including and and from healthcare to self-management of these in chronic BI care in with the systems changes that be to adopt all of is in of what is and working toward of For the of existing and development of new materials that a collaborative relationship could be to the development of and is the of medical to provide at discharge from is the of existing educational such as those at and patient The of educational materials can be an effective way to a collaborative care materials could be into new (eg, social new and for a by to their new materials that the chronic of BI and the of patient and provider in chronic management should also be developed. for new materials include the at and the relationship with which could be to the concept of brain health following BI. to support the patient's could existing clinical to the materials to and could help drive of CCM or the impact of other CCM of and with empirical support of BI could help BI care with is a of based on the that patients are most at their goals and over their when they identify and their but and management can serve as an for delivery or as a care for individual is a of and support that the of the community in persons with their The and of providers to help persons with a to their to management and are each supports patient and can be or in to help patients and providers collaborative care. support include and to the community. clinical assessment is to patient care but is not a practice in BI care the This be to effective chronic care in BI, which requires that clinical severity, health and management and to self-management be made to both patient and through a of assessments is the self-management of for patient and provider and the appropriate assessment also patients in their care by the that be for example, between patient and to or and assessments are also to later collaborative are several that could be for chronic BI in the that require or no is the Chronic a for persons with chronic that is commonly in community and medical is the of These are common in BI care and with but have not been incorporated in chronic BI. A third is a that between patient and provider to and the patient's personal for Other but require for in for chronic BI. include and an self-management for those with severe and an that providers from a of disciplines who develop a that includes the the and the community. to should be considered over the includes the of which are commonly by and plans to that to can take a of but each a for the is the of of patient such as the of as for patient and provider The of in chronic BI from health or could also For healthcare of within the community could be identified and between and health in are to the to persons health with organizations that have experience and and that in chronic BI or in to BI (eg, could also help the development of chronic BI care. support by with BI who or community as for those with BI (eg, may to be particularly in HEALTHCARE A of individuals with BI not specialty medical care beyond the acute but are seen in medical practice and community care may also be by a of community health providers in BI, including social and health providers. To the of primary care providers and community providers to meet the needs of persons with BI the and to of care from specialty to primary care a approach is First, individuals with BI their significant others be to develop to serve as of medical information providers and Second, primary care and community health providers be to and address the needs of persons with BI. These recommendations those of the Implementation from the community To assist people with BI their significant others to serve as their of medical information and the following recommendations are made. First, a educational could be for by individuals with BI to their health providers. This should be based on existing educational resources regarding BI, its and health needs. of the in which providers the materials should be and in including (eg, While significant effort would be in compiling these resources and the educational the could be at cost through organizations such as the Injury Association of and through with the for and Model While this would address educational individualized medical information would need to be to the appropriate providers. this individuals with BI might be provided with a (eg, specific medical information when they the specialty would the to their primary physician or community health who would information to the so that future providers would A concept is of which is a application to which the with health needs can who can information on the and have to information by professionals providing healthcare to that The following recommendations were developed to the of primary care and community providers to meet the needs of individuals with BI. First, specific should be provided regarding the needs of people with BI the The Academy of Injury may be as a for this who have been through could at meetings of their (eg, American Association of professional organizations may also be to to their Second, of a model for individuals with BI from primary to secondary care is this the model for this among individuals who should be for its as a foundation on which to develop a model for BI. is to have information and recommendations into the individual and for individuals with BI to to their providers. This approach with the and of A third is to provide for for with BI, beginning in the acute care While of this will be a step would be to have a meet with persons with BI when they for the follow-up and provide with a list of including information for their local BI so that they may further The goal would be to have each with BI a who could or through or to need and utilization on a A to community organizations that may serve a significant of persons with BI (eg, living information regarding BI could be from local BI as a or a to or other persons of these with information to further information and in persons with BI. and time are to all of these on existing resources (eg, BI existing educational for other chronic disorders) and with existing organizations (eg, professional community can be to and cost to an of existing systems, including and may also help and the between providers. While these resources can a for management services will ultimately be necessary to meet the needs of individuals with BI and to ensure of their and health the The associated with a continuum of care are expected to be by the from prevention of health that more medical to the cost of as as a system of care, would help the way for The 2013 GBIC a specific and for moving BI care toward the importance of the development of clinical guidelines and surveillance improved provider of existing educational and and While to the toward optimal long-term care of individuals with BI, each task force was of the cost of both in and resources. a of recommendations were that from those that new by existing resources to more such as lifelong management and Nonetheless, the cost of these more and sustained has the potential to be in the long by of health and social problems among those living with BI that a high in and in task force also an that its recommendations many issues for more specific future such as the of of healthcare policy and the needs of (eg, and surveillance systems and guideline development. While these recommendations are certainly not is likely to have a favorable impact on outcomes of individuals with BI by long-term complications and enhancing to appropriate care. Implementation can be by and to and support the and of As with new it will be important to on effectiveness directly from those as as continue to to effectiveness and in the long