RESUMO
OBJECTIVES: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. STUDY DESIGN: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components. RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions. CONCLUSIONS: The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals.
Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Comunicação , Índice de Gravidade de Doença , Participação dos Interessados , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Adulto JovemRESUMO
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; response rate of 54%) of children with noncancer, noncardiac LT-CCCs who received care at a quaternary care children's hospital and medical record abstraction. RESULTS: The majority of children with LT-CCCs died in the hospital (62.7%) with more than one-half (53.3%) dying in the intensive care unit. Those with static encephalopathy (AOR, 0.19; 95% CI, 0.04-0.98), congenital and chromosomal disorders (AOR, 0.28; 95% CI, 0.09-0.91), and pulmonary disorders (AOR, 0.08; 95% CI, 0.01-0.77) were significantly less likely to die at home compared with those with progressive central nervous system (CNS) disorders. Almost 50% of patients died after withdrawal or withholding of life-sustaining therapies, 17.5% died during active resuscitation, and 36% died while receiving comfort care only. The mode of death varied widely across LT-CCCs, with no patients with pulmonary disorders dying receiving comfort care only compared with 66.7% of those with CNS progressive disorders. A majority of patients had palliative care involvement (79.3%); however, in multivariable analyses, there was distinct variation in receipt of palliative care across LT-CCCs, with patients having CNS static encephalopathy (AOR, 0.07; 95% CI, 0.01-0.68) and pulmonary disorders (AOR, 0.07; 95% CI, 0.01-.09) significantly less likely to have palliative care involvement than those with CNS progressive disorders. CONCLUSIONS: Significant differences in patterns of care at the end of life exist depending on LT-CCC type. Attention to these patterns is important to ensure equal access to palliative care and targeted improvements in end-of-life care for these populations.