A shared vision of quality of life: Partnering in decision-making to understand families' realities.

Quality of life (QOL) measures are increasingly used when important prognostication and treatment decisions need to be made in the care of a critically ill child. Unfortunately, health-care professionals and families experience difficulties when attempting to accurately predict and estimate QOL for a patient. Aspects such as subjectivity, complexity and adaptation to illness play an important role in how QOL is ultimately experienced. This often leads to inaccurate estimates of QOL, when performed by individuals other than the patient, such as clinicians or family members. In order to make decisions in the best interest of the patient, a partnership between families and clinicians must be fostered, based on communication, trust and mutual understanding of values. This article will attempt to describe some of the challenges that come into play when assessing QOL for a patient and will provide tools for building a clinician-family partnership in the decision-making process.

Resilience Rather than Medical Factors: How Parents Predict Quality of Life of Their Sick Newborn.

OBJECTIVE: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability. STUDY DESIGN: We conducted a prospective multicenter questionnaire study. Perspectives from parents of newborns at high risk of disability as per neonatal follow-up criteria were compared with a low-risk group consisting of parents of all other NICU newborns. Parental anxiety and resiliency, measured using Brief Symptom Inventory and Sense of Coherence scales, respectively, were associated with QOL projections. RESULTS: Parents returned 129 (81%) questionnaires. Parents considering their newborn as currently sicker were more stressed (P = .011) and worried about future physical (P < .001) and mental (P < .001) health, QOL (P < .001), coping (P = .019), and financial (P < .001) and emotional (P = .002) impact on the family. Ooverall, there was no difference between parents of high-risk and low-risk newborns on QOL projections. Almost all parents projected a good future QOL. Less resilient parents projected more pain (P = .04), more financial (P = .019), and emotional (P = .031) impact on their family, and were 10 times more likely to predict that their newborn would remain chronically ill. CONCLUSIONS: Parental projection of future QOL of NICU newborns is not associated with risk of disability. Most parents predict overall a good future QOL and focus more on familial impact. The Sense of Coherence scale may be used in clinical settings to identify less resilient parents.

Association between maternal hypertension and infant neurodevelopment in extremely preterm infants.

OBJECTIVE: To examine the association between maternal hypertension during pregnancy and neurodevelopmental impairment (NDI) at 24 months post-menstrual age in extremely preterm infants. STUDY DESIGN: Using data from two tertiary neonatal units (2011-2017) for infants born at 23 + 0 to 28 + 6 weeks, we investigated outcomes of NDI related to maternal hypertension and small-for-gestational-age (SGA) status. RESULTS: Of 1019 pre-term infants, 647 had complete data and were included in the analysis. Ninety-six (15%) had maternal hypertension exposure; 25 (4%) were also SGA. Infants with maternal hypertension showed a higher odds of any NDI (aOR: 2.29, 95% CI = 1.36-3.87) and significant NDI (aOR: 2.01, 95% CI = 1.02-3.95). The combination of hypertension and SGA further elevated this risk (aOR for any NDI: 4.88, 95% CI = 1.80-13.22; significant NDI: 6.91, 95% CI = 2.50-19.12). CONCLUSION: Maternal hypertension during pregnancy elevates the risk of NDI in extremely preterm infants, more so when combined with SGA.

Discussing brain magnetic resonance imaging results for neonates with hypoxic-ischemic encephalopathy treated with hypothermia: A challenge for clinicians and parents.

Context: Clinicians use brain magnetic resonance imaging (MRI) to discuss neurodevelopmental prognosis with parents of neonates with hypoxic-ischemic encephalopathy (HIE) treated with therapeutic hypothermia (TH). Purpose: To investigate how clinicians and parents discuss these MRI results in the context of HIE and TH and how these discussions could be facilitated and more meaningful for parents. Procedures: Mixed-methods surveys with open-ended and closed-ended questions were completed by two independent groups. (1) Clinicians responded to clinical vignettes of neonates with HIE treated with TH with various types of clinical features, evolution and extent of brain injury and questions about how they discuss brain MRI results in this context. (2) Parents of children with HIE treated with TH responded to questions about the discussion of MRI that they had while still in the neonatal intensive care unit and were asked to place it in perspective with the outcomes of their child when he/she reached at least 2 years of age. Open-ended responses were analyzed using a thematic analysis approach. Closed-ended responses are presented descriptively. Results: Clinicians reported uncertainty, lack of confidence, and limitations when discussing brain MRI results in the context of HIE and TH. Brain MRI results were "usually" (53%) used in the prognostication discussion. When dealing with day-2 brain MRIs performed during TH, most clinicians (40%) assumed that the results of these early MRIs were only "sometimes" accurate and only used them "sometimes" (33%) to discuss prognosis; a majority of them (66%) would "always" repeat imaging at a later time-point to discuss prognosis. Parents also struggled with this uncertainty, but did not discuss limitations of MRI as often. Parents raised the importance of the setting where the discussion took place and the importance to inform them as quickly as possible. Clinicians identified strategies to improve these discussions, including interdisciplinary approach, formal training, and standardized approach to report brain MRI. Parents highlighted the importance of communication skills, the stress, the hope surrounding their situation, and the need to receive answers as soon as possible. The importance of showing the pictures or making representative drawing of the injury, but also highlighting the not-injured brain, was also highlighted by parents. Conclusions: Discussing brain MRI results for neonates with HIE treated with TH are challenging tasks for clinicians and daunting moments for parents.