This study provides new information regarding functional outcomes and the factors that influence meaningful aspects of functioning in critically ill children. Identifying patients at greatest risk and modifiable targets for improvement in PICU care guides us in developing strategies to improve functional outcomes and tailor to the rehabilitation needs of these patients and their families.
Background Outcomes in pediatric critical care research are typically selected by the researcher. Objectives (1) To identify outcomes prioritized by patients and their families following a critical illness and (2) to determine the overlap between patient-centered and researcher-selected study outcomes. Methods An exploratory descriptive qualitative study nested within a longitudinal cohort study conducted in 2 pediatric intensive care units (PICUs). Participants were purposively sampled from the primary cohort to ensure adequate demographic representation. Qualitative descriptive approaches based on naturalistic observation were used to collect data and analyze results. Data were coded by using the International Classification of Functioning, Disability, and Health Children and Youth (ICF-CY) framework. Results Twenty-one participants were interviewed a mean of 5.1 months after PICU discharge. Outcomes fell into 2 categories: patient-centered and family-centered. In the former, diagnosis, survival, and prognosis were key priorities during the acute critical illness. Once survival appears possible, functioning (physical, cognitive, and emotional), and factors that influence recovery (ie, rehabilitation, environment, and quality of life) are prioritized. Family-centered outcomes consisted of parents’ psychosocial functioning and experience of care. Patient-centered outcomes were covered well by the selected study measures of functioning, but not by the clinical outcome measures. Conclusion Functioning and quality of life are key patient-centered outcomes during recovery from critical illness. These are not well captured by end points typically used in PICU studies. These results justify the importance of patient- and family-centered outcomes in PICU research and a need to determine how these outcomes can be comprehensively measured.
Peripheral limb ischaemia and gangrene are devastating complications of pneumococcal sepsis. We report a 43-year-old professional pianist who presented with early sepsis and rapid development of this syndrome. No vasopressor medication was ever administered. We urgently reviewed the medical literature on a range of therapies recommended by consulting teams, to ensure he received optimal care. Based on our review and on feedback from the patient himself, we gained valuable insights into this illness and the merits of selected treatment options. His fingers ultimately recovered their function, intact, although several toes were later amputated. More recently published reviews postulate that imbalances in coagulation factors and natural anticoagulants occur as a result of disseminated intravascular coagulopathy and ‘shock liver’ in the sepsis syndrome, leading to microcirculatory thromboses. We submit this report as we believe it supports this hypothesis and adds further valuable information. We hope our observations will assist other critical care clinicians confronting this serious condition.
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