Malec, James F. PhD; Hammond, Flora M. MD; Flanagan, Steven MD; Kean, Jacob PhD; Sander, Angelle PhD; Sherer, Mark PhD; Masel, Brent E. MD
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.
Participants 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.
Organizations 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 contain appropriate referral information for specialized BI medical care and information regarding community and state resources, such as BI advocacy groups and state vocational services.
Second, individuals with BI should be provided with access to social work/case management consultation. This consultation can be a mechanism to enhance follow-up with appropriate community resources. Perhaps, more importantly, this consultation can serve as a first-line resource for detection of emerging problems, such as seizure disorder, spasticity, and post-BI irritability, that will benefit from active medical management. Ideally, each person discharged with BI or suspected BI of any severity would be contacted by social work or case management in a proactive effort to detect any emerging care needs. It is recognized that current resources may not support this proactive approach, but, at a minimum, individuals discharged after BI and caregivers should be provided contact information for appropriate social work and case management follow-up.
Third, individuals discharged from active medical care for BI should be provided with access to self-management services that they can use to prevent or minimize complications and optimize recovery. A fundamental aspect of such self-management should be access to health and wellness programs. Individuals with BI will in almost all cases benefit from appropriate exercise, optimal nutrition, and adequate sleep. While these factors will not resolve all or even most late problems resulting from BI, they form a foundation of wellness that increases the probability of optimal benefit from other services. Additional information on self-management can be provided in written form and by providing links to online materials.
Lorig and Holman9 noted that one cannot not self-manage chronic disease but, rather, can do it better or worse. Self-management is a patient role that is critically important because all true outcomes, such as function or symptom control, depend on patient self-management decisions and actions such as taking medications or adopting a healthy lifestyle. Self-management support (SMS) is a complementary provider/system role that is a core element of CCM (see the Figure).
This provider/system role is characterized by the following principles10:
- honest, nonjudgmental collaboration between patient and provider;
- assessment-driven prioritization of problems, barriers, goals, and problem-solving;
- collaboratively initiated evidence-based, multifaceted educational interventions that promote self-management knowledge and skills, self-efficacy, and mastery delivered using diverse formats and diverse providers (including laypersons);
- ongoing follow-up, supported by feedback and reminders to both clinicians and patients and including guideline-based and goal-directed case management; and
- linkage from healthcare to community-based self-management programs.
Wholesale adoption of these SMS principles in chronic BI care goes hand in hand with the systems changes that must be undertaken to adopt all elements of CCM. There is value, however, in taking stock of what is available and working toward adoption of discrete SMS principles. For instance, the appropriation of existing and development of new materials that frame a collaborative patient/provider relationship could be used to foster the development of SMS-aligned attitudes and actions. One example is the coopting of electronic medical record (EMR)–generated output to provide education at discharge from hospital. Another is the introduction of existing educational materials, such as those available at Brainline.org, CBIRT.org, Dana foundation, and tbicommunity.org during patient encounters. The introduction of educational materials can be an effective way to initiate a collaborative care relationship. Existing materials could be translated into new formats (eg, social media, new media) and optimized for a higher ranking by search algorithms to improve their reach. Furthermore, new materials that emphasize the chronic nature of BI and underscore the roles of patient and provider in chronic disease management should also be developed. Models for new materials include the “100 Day Kit” available at autismspeaks.org, and pamphlets built around the popular meme, “Change your relationship with ____ (e.g., food, alcohol),” which could be designed to promote the concept of brain health following BI. Furthermore, “patient fact sheets” designed to support patient-to-provider education about the patient's life could complement existing clinical fact sheets designed to promote provider-to-patient education about the condition. Using materials to instill SMS-aligned attitudes and actions could help drive adoption of CCM or improve the impact of other adopted CCM elements.
Adoption of perspectives and principles with empirical support outside of BI could help align BI care with SMS principles. One example is strength-based case management,11 a set of principles based on the core belief that patients are most successful at achieving their goals and regaining power over their lives when they identify and utilize their own but often overlooked strengths, abilities, and assets. Strength-based case management can serve as an organizational structure for service delivery or as a care philosophy for individual practitioners. Another example is person-centered planning,12 a set of perspectives and support practices that emphasize the pivotal role of the community in helping persons with disability realize their goals. The values and tools of person-centered planning enable providers to help persons with a disability to choose their own pathways to success. Strength-based case management and person-centered planning are complementary: each supports patient empowerment and can be used independently or in concert to help patients and providers realize collaborative care.
Self-management support processes include broad assessment, collaboratively initiated interventions, regular follow-up, and linking to the community. Structured clinical assessment is essential to good patient care but is not a standard practice in BI care across the continuum. This must be fixed to realize effective chronic care in BI, which requires that clinical severity, functional status, preferences, goals, readiness, health and management behaviors, and barriers to self-management be made explicit to both patient and provider. Only through a broad battery of assessments is the self-management “scope of work” illustrated for patient and provider and the appropriate interventions triggered. Broad assessment also engages patients in their care by highlighting the trade-offs that must sometimes be made, for example, between patient preference and readiness to change or medication side effects and outcome. Comprehensive assessments are also critical to inform later collaborative decision making.
There are several interventions that could be employed for chronic BI SMS in the near term that require little or no adaptation. One example is the lay-led Chronic Disease Self-Management Program, a general intervention for persons with chronic disease that is commonly offered in community and general medical settings. Another example is the systematic use of assistive technologies. These are common in BI care and aligned with SMS but have not been systematically incorporated in chronic BI. A third is Motivational Interviewing, a discussion technique that utilizes conversations between patient and provider about change to evoke and strengthen the patient's personal motivation for change. Other candidate interventions hold promise but require adaptation for use in SMS for chronic BI. Examples include Illness Management and Recovery, an evidence-based self-management intervention designed for those with severe mental illness, and Assertive Community Treatment, an intense wraparound service that involves providers from a wide range of disciplines who develop a team that includes the client, the case manager, and the community.
Additional approaches to SMS should be considered over the longer term. One example includes the strategic use of financial incentives, which are commonly employed by private and public insurance plans to encourage behaviors that lead to better outcomes. Financial incentives can take a variety of forms, but each emphasizes a clear role for the patient. Another example is the exploration of alternative uses of patient registries, such as the use of registries as repositories for patient and provider goals. The consideration of SMS in chronic BI from public health or marketing perspectives could also prove fruitful. For instance, nontraditional healthcare points of contact within the community could be identified and leveraged much like partnerships between law enforcement and mental health agencies in Crisis Intervention Team programs are used to improve the response to persons experiencing mental health crises. Strategic partnerships with organizations that have marketing experience and expertise and that share interest in chronic BI or in populations vulnerable to BI (eg, AARP) could also help advance the development of chronic BI care. Self-management support delivered by peers with BI who successfully self-manage or employing community citizens as case managers for those with BI (eg, Rhinelander, WI model) may prove to be particularly useful in resource-restricted environments.
HEALTHCARE AND COMMUNITY SYSTEMS INTEGRATION
A substantial number of individuals with BI do not receive specialty medical care beyond the acute phase but are seen in general medical practice and community care settings. They may also be served by a variety of community health providers without particular expertise in BI, including case managers, social workers, psychologists, and home health providers. To increase the capacity of primary care providers and community providers to meet the needs of persons with BI across the life span and to improve transition of care from specialty to primary care providers, a 2-pronged approach is necessary. First, individuals with BI and/or their significant others must be assisted to develop skills to serve as conduits of medical information across providers and settings. Second, primary care and community health providers must be trained to recognize and address the needs of persons with BI. These recommendations echo those of the High Priority Implementation Task Force from the community perspective.
To assist people with BI and/or their significant others to serve as their own couriers of medical information and needs, the following recommendations are made. First, a brief educational product could be created for use by individuals with BI to inform their health providers. This product should be based on existing educational resources available regarding BI, its consequences, and related health needs. Because of the pressured environments in which today's medical/health providers work, the materials should be brief and available in multiple media categories, including digital media (eg, podcasts). While significant effort would be involved in compiling these resources and creating the educational product, the result could be disseminated at low cost through organizations such as the Brain Injury Association of America and through collaboration with the National Institute for Disability and Rehabilitation Research (NIDRR) Model Systems Knowledge Translation Center. While this would address general educational needs, individualized medical information would still need to be conveyed to the appropriate providers. Toward this end, individuals with BI might be provided with a tote bag (eg, Iowa initiative) containing specific medical information when they leave the specialty setting. They would then carry the tote bag to their primary physician or community health provider, who would then add information to the bag so that future providers would remain informed. A similar emerging concept is Circles of Care, which is a Web-based application to which the person with health needs can add different providers, who can then add information on the participant and have access to information posted by professionals providing healthcare to that person.
The following recommendations were developed to increase the capacity of primary care and community providers to meet the needs of individuals with BI. First, specific training should be provided regarding the needs of people with BI across the life span. The Academy of Certified Brain Injury Specialists (ACBIS) may be used as a base for this training. Specialists who have been certified through ACBIS could hold training sessions at meetings of their perspective discipline-specific associations (eg, American Occupational Therapy Association, National Association of Social Workers). Discipline-specific professional organizations may also be willing to post online training to their Web sites. Second, creation of a model for transitioning individuals with BI from primary to secondary care is recommended. Toward this end, the model for this transition among individuals who had stroke should be evaluated for its usefulness as a foundation on which to develop a model for BI. One possibility is to have summarized information and recommendations entered into the individual EMR and then printed for individuals with BI to give to their subsequent medical/healthcare providers. This approach interfaces with the “tote bag” and “Circle of Care” initiatives suggested previously. A third recommendation is to provide for case management/resource facilitation for every person with BI, beginning in the acute care setting. While funding of this service will obviously be challenging, a relatively low-cost initial step would be to have a clinic liaison meet with persons with BI when they come for the follow-up visit and provide them with a list of resources, including contact information for their local BI association so that they may seek further assistance. The ultimate goal would be to have each person with BI assigned a case manager who could follow him or her through his or her lifetime to assess need and facilitate resource utilization on a regular basis. A final recommendation involves outreach to community organizations that may serve a significant number of persons with BI (eg, independent living centers, university centers, adult day cares, legal aid/advocacy organizations). Targeted information regarding BI could be sent from local BI associations as a brief e-article or a blog to directors or other contact persons of these centers/organizations with contact information to receive further information and assistance in serving persons with BI.
Cost and time pressures are obvious obstacles to implementing all of these recommendations. Capitalization on existing resources (eg, BI associations, existing educational materials, models used for other chronic disorders) and collaboration with existing organizations (eg, professional organizations, community organizations) can be used to increase efficiency and reduce cost to an extent. Use of existing electronic systems, including EMRs and available Web-based technologies, may also help increase efficiency and ease the transition between providers. While these resources can help, a budget commitment for case management services will ultimately be necessary to fully meet the needs of individuals with BI and to ensure maintenance of their physical and emotional health across the life span. The costs associated with a coordinated continuum of care are expected to be outweighed by the savings resulting from prevention of health deterioration that necessitate more expensive medical intervention. Research to demonstrate the cost efficacy of case management/resource facilitation, as well as a coordinated system of care, would help pave the way for funding.
The 2013 GBIC Conference participants outlined a specific and ambitious agenda for moving BI care toward CCM. Recommendations emphasized the importance of the development of clinical guidelines and surveillance technologies, improved specialist-primary care-community provider communications, patient-provider collaboration, use of existing educational resources, and risk-stratified SMS and case management. While seeking to outline the path toward optimal long-term care of individuals with BI, each task force was clearly conscious of the cost of recommended initiatives both in financial and personnel resources. Hence, a series of recommendations were outlined that range from those that minimize new costs by leveraging existing resources to more costly initiatives, such as lifelong case management and resource facilitation. Nonetheless, even the cost of these more complex and sustained initiatives has the potential to be offset in the long term by reduction of health and social problems among those living with BI that carry a high price in dollars and in human suffering.
Each task force also communicated an awareness that its recommendations left many issues for more specific future consideration, such as the role of advocacy, effects of healthcare policy and funding, the special needs of subgroups (eg, children, elderly), and surveillance systems and guideline development. While these recommendations are certainly not exhaustive, progressive implementation is very likely to have a favorable impact on outcomes of individuals with BI by reducing long-term complications and enhancing access to appropriate care. Implementation can be facilitated by using EMR and Web-based technologies to cue and support the maintenance and completion of recommended tasks. As with any new initiative, it will be important to obtain feedback on effectiveness directly from those served as well as continue to collect quantitative data to assess effectiveness and cost-effectiveness in the long term.
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