ABSTRACT
Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the development of CF-specific transition guidelines, an anonymous pretransition questionnaire and posttransition interview were used to assess the concerns and expectations of 60 CF patients and their parents as they went through the transition from pediatric to adult care. Along with demographic and clinical information, respondents were asked to rate on a scale of 1-5 their general attitude toward, or level of concern on 22 questions involving transition concerns, adult program expectations, and general view of transition. The two most important concerns identified by patients prior to transition to adult care were potential exposure to infection (3.4 +/- 1.3) and having to leave their previous caregivers (3.4 +/- 1.0). Introduction to the adult CF team prior to transition was associated with significantly lower levels of concern in all areas, particularly about having to leave previous caregivers (3.9 +/- 0.7 vs. 2.5 +/- 0.6, P < 0.004). Age, gender, severity of lung disease, and age at diagnosis were not predictive of level of concern for any area. Parents' most significant concern was ability of their child to care for their CF independently, a concern their children did not share (4.0 +/- 1.1 vs. 1.5 +/- 0.5, P < 0.0001). As their most important expectations for the adult program, patients identified ready phone access to a nurse (4.9 +/- 0.6) and education about adult CF issues (4.6 +/- 0.7). The overall attitude toward the development of an adult CF program was overwhelmingly positive for both patients (4.9 +/- 0.7) and parents (4.9 +/- 0.3). By allowing patients to interact with the adult team prior to transition and developing transition protocols which address CF-specific issues like infection control and fertility, successful transition from pediatric to adult cystic fibrosis care can be accomplished.
Subject(s)
Continuity of Patient Care , Cystic Fibrosis/therapy , Patient Satisfaction/statistics & numerical data , Adolescent , Adolescent Health Services/organization & administration , Adult , Female , Health Care Surveys , Humans , Interviews as Topic , Male , Middle Aged , Surveys and QuestionnairesABSTRACT
OBJECTIVE: Determine variables in the acute care period associated with survival and pediatric intensive care unit (PICU) length of stay (LOS) for children with severe traumatic brain injury. DESIGN: Retrospective cohort. SETTING: Level 1 pediatric trauma center. PATIENTS: Children (0-17 yrs) admitted 1991 to 1995 with nonpenetrating traumatic brain injury and admission Glasgow Coma Scale score of