In addition to better documenting the prevalence and intensity of psychological symptoms, research is also needed to refine and compare interventions appropriate for children of different ages and at different stages of a life-threatening medical condition. These interventions include individual psychotherapy, group support, and psychotropic medications.
Most of the pharmacologic agents used for physical and psychological symptoms have not been adequately studied in children. Despite recent incentives for drug research involving children, the developmental pharmacokinetic profile in children of many existing drugs is still unknown and must be established to allow and guide their “on-label” use. Then, evidence-based guidelines can be developed for selecting patients for different drug regimens, escalating or tapering off doses, and managing side effects. Although the negative long-term impact of unrelieved symptoms such as pain is well established, the long-term effects of opioids and other drugs used to ameliorate pain have yet to be established for children with serious, chronic problems that persist for months or years.
To reduce children’s discomfort during the administration of medications and to encourage cooperation with uncomfortable treatment regimens, novel routes of drug administration, including transdermal, transmucosal, and regional approaches, must be further developed in addition to better-tasting formulations of existing, orally administered drugs (AAP, 1997a). Development of new agents such as long-acting (e.g., days long) local anesthetics for children experiencing post-operative pain and better treatments for neuropathic and bone pain would also reduce the burden of suffering for many children.
In general, more research is needed both to develop better sedation and analgesic regimens and nonpharmacologic strategies for preventing and relieving procedural pain and to verify the safety and effectiveness of existing regimens. Although not an issue of procedure management per se, the efficacy of intensive, controlled sedation to relieve intractable pain, seizures, or other distress at the end of life also requires continued investigation. Such research is important regardless of one’s position on the use of such sedation when a side effect may be hastened death, although that result appears to be uncommon (see Chapters 5 and 8).
As discussed earlier in this report, pain management programs are now a requirement for hospital accreditation and an increasing focus of quality assessment initiatives (JCAHO, 2001). Careful documentation and analysis of sedation failures can improve the quality of care in an institution and also improve the evidence base overall for effective pain management.