Unrealistic parental expectations for cure in poor‐prognosis childhood cancer

Abstract

BackgroundMany parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor‐prognosis childhood cancer.MethodsThe authors conducted a prospective cohort study at 9 pediatric cancer centers that enrolled 95 parents of children with recurrent or refractory, high‐risk neuroblastoma (63% of those who were approached), a condition for which cure rarely is achieved. Parents were surveyed regarding the child's likelihood of cure; their primary goal of care; the child's symptoms, suffering, and quality of life; and regret concerning the last treatment decision. Medical records identified care and treatment decisions.ResultsOnly 26% of parents recognized that the chance of cure was <25%. When asked to choose a single most important goal of care, approximately 72% chose cure, 10% chose longer life, and 18% chose quality of life. Parents were more likely to prioritize quality of life when they recognized the child's poor prognosis (P = .002). Approximately 41% of parents expressed regret about the most recent treatment decision. Parents were more likely to experience regret if the child had received higher intensity medical care (odds ratio [OR], 3.14; 95% CI, 1.31‐7.51), experienced suffering with limited benefit from the most recent treatment (OR, 4.78; 95% CI, 1.16‐19.72), or experienced suffering from symptoms (OR, 2.91; 95% CI, 1.18‐7.16).ConclusionsParents of children with poor‐prognosis cancer frequently make decisions based on unrealistic expectations. New strategies for effective prognosis communication are needed.

Longitudinal understanding of prognosis among adolescents with cancer

“…This is the first study, to our knowledge, to evaluate how adolescents understand their cancer prognosis compared with not just their oncologists at diagnosis but also their parents from diagnosis to one year. Most oncologists reported communicating prognosis to parents and adolescents, similar to some research, 9 but a larger proportion than found in other studies 6,19 . However, oncologists reported they did not provide any prognosis information to at least one parent and 10 adolescents, raising important questions about whether this was driven by the oncologist or family.…”

“…Our results suggest that, similar to parents, 20,21 adolescents fill gaps in their knowledge through alternate sources, with many deriving their understanding of prognosis from parents, other medical staff, personal research, or family or friends. Thus, adolescents frequently desire prognosis information, 9,11,12 but their needs are often unmet, which may influence personal goals of care 6 …”

“…Yet, conveying prognosis is difficult; providers may anticipate that predictions of treatment failure will cause distress for their young patients 3,4 . Parents share these worries and often report unrealistic or overly optimistic understandings of prognosis—which may be shared with their children 3,5–7 . Indeed, research reflects that children, adolescents, and young adults overestimate their cancer prognosis 8,9 .…”

“…Indeed, research reflects that children, adolescents, and young adults overestimate their cancer prognosis 8,9 . Overly optimistic views of prognosis may be associated with interest in high‐intensity treatment rather than symptom management or palliation, as found among parents 6,10 …”

Tradução e adaptação transcultural do Pediatric Palliative Care Questionnaire (PPCQ) para o português do Brasil

“…e estar apto a oferecer suporte aos pais e familiares de uma criança com diagnóstico de doença ameaçadora ou limitante da vida (MACK et al, 2005;MASERA et al, 1999;MEERT et al, 2008;MOODY et al, 2011;SAHLER et al, 2000). (BAGATELL et al, 2002;BURKE et al, 2018;MACK et al, 2005MACK et al, , 2019POLES;BOUSSO, 2009 -LANGNER, 2013;MICHELSON et al, 2009;MOODY et al, 2018;SCHIFFMAN et al, 2008;WIDGER et al, 2016).…”