Although many secondary conditions can be prevented, interventions are often ineffective because they fail to address the multiple risk factors related to the pathophysiology and life situation of the person with a disabling condition. To be successful, interventions must be multifaceted and comprehensive. The most effective prevention programs are longitudinal in nature and embody a variety of strategies, devised and carried out by a multidisciplinary team.
Protocols would foster the integration and comprehensiveness essential to the prevention of secondary conditions. A protocol lists the evaluation, treatment, and service delivery strategies that apply to a specific type of disabling condition and to the characteristics of the person with the disabling condition. Developed prospectively from general information, protocols serve as generic guidelines that assure completeness in the development of individual treatment and service plans. Often, a protocol will list several options for each element in the individualized plan. Specific interventions are chosen in light of the special circumstances of the person with the disabling condition.
As frameworks on which to build individualized plans, protocols must reckon with variability. The pathological processes that underlie a secondary condition vary considerably; they can stabilize after an acute event, fluctuate in severity over time, or be progressive. Similarly, the amount of additional disability that can result encompasses a broad range, influencing, for example, the decision of whether to prescribe major medical treatment or to rely on compensatory assistive technology. Moreover, the interactive relationship between the risk of secondary conditions and social, economic, and environmental characteristics introduces more variability that must be anticipated in the development of protocols.
Currently, protocols to guide the development of effective prevention programs are few. As noted previously, a serious obstacle is the paucity of evaluative information on the effectiveness and outcomes of interventions for many secondary conditions.
Evaluative studies are needed to determine the effectiveness and costs of interventions for major secondary conditions. As part of this effort, consensus conferences should be conducted to review existing knowledge in those areas where research and clinical experience are sufficient to develop model protocols for the prevention of secondary conditions. As the primary sponsor of effectiveness and outcomes research, the Agency for Health Care Policy and Research would be the appropriate agency to assume leadership in initiating these activities.