The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

The objective of this study was to review the evidence about what factors influence user engagement in Internet-based behavioral interventions for chronic illness. We conducted a systematic review of the recent published literature. Searches of MEDLINE (using Ovid and PubMed), The Cochrane Library, and PsycINFO, from January 2000 to December 2008, were completed. Additional articles were identified from searching the bibliographies of retrieved articles. We identified studies of interactive health communication interventions delivered via the Internet that, apart from delivering health information, had another component such as interactive tools to manage illness, decision support for treatment, or social support. We restricted the age range to adulthood. The search identified 186 abstracts; 46 articles were reviewed. We used a qualitative approach called "positive deviance" to study those interventions that have succeeded in engaging users where most have failed. Some ways to improve user engagement in Internet interventions suggested by our review include addressing health concerns that are important and relevant to an individual patient or consumer and an individualized approach, such as personally tailored advice and feedback. Interventions that are part of larger health management programs that include clinicians appear to be especially promising.

Engaging in ACP with online planning tools increases knowledge without diminishing hope, increasing hopelessness, or inducing anxiety in patients with advanced cancer. Physicians need not avoid ACP out of concern for adversely affecting patients' psychological well-being.

This institutional approach to the care of patients ventilated >3 days improved all clinical and financial outcomes of interest. To date, few similar initiatives have demonstrated similar results. The approach and lessons learned in this process improvement project may be helpful to other institutions attempting to improve outcomes in this vulnerable population.