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PLATTSBURGH — There is a gap in care when people leave the ICU and return to their lives. To help those suffering after an ICU admission, a Post Intensive Care Syndrome (PICS) Support Group was launched at the University of Vermont Health Network, Champlain Valley Physicians Hospital in Plattsburgh.

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Newborn screening for sickle cell disease was fully implemented throughout England in 2006. Data received from the 13 newborn screening laboratories in England show 666,060 babies were screened in 2007/08 via the blood spot card. Of these,359 were identified with significant sickle cell conditions requiring follow up and treatment. During the same time period 9,452 babies were identified as carriers of hemoglobin variants and 3,725 babies received a blood transfusion prior to screening. The outstanding area of grave concern in newborn screening for sickle cell relates to the possibility of babies being undiagnosed as having sickle cell disease, due to having a blood transfusion prior to a blood spot sample being taken. These babies do not have a valid sickle cell screen result.

Currently, the Guidelines for Newborn Blood spot Testing recommend taking one blood spot prior to transfusion. Alternatively, if this is not carried out, the recommendation is for repeat testing at 4 months post last blood transfusion using a liquid sample of blood. However, this is challenging as it is a difficult, costly and very time-consuming process for primary care and specialist counselling staff to administer. For babies that have multiple transfusions, the repeat testing policy could result in a considerable delay in being tested for sickle cell disease with the potential risk of missing a baby with the condition.

The difficulties with the repeat testing process are well highlighted by audit data from Sheffield Children’s Hospital which showed that only 3 babies out of 24 were retested in a timely manner following transfusion. At King’s College Hospital, over an 18-month period, 347 requests for follow up of transfused babies were sent out. Of these,252 samples should have been returned to the laboratory (excluding deaths; non-transfused babies; out of area babies and 12 already re-screened), but only 71 repeat samples were completed 28% of the expected number.

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Annually, about five million patients stay in an intensive care unit in the United States. Studies show that up to 35 percent may have symptoms of PTSD for as long as two years after that experience, particularly if they had a prolonged stay due to a critical illness with severe infection or respiratory failure. Those persistent symptoms include intrusive thoughts, avoidant behaviors, mood swings, emotional numbness and reckless behavior.

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Patients who have prolonged stays, getting intubated and sedated, may experience severe hallucinations, putting them at risk of PTSD for years to come, studies show.

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Patients who have prolonged stays, getting intubated and sedated, may experience severe hallucinations, putting them at risk of PTSD for years to come, studies show.

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Background: Although mortality due to critical illness has fallen over decades, the number of patients with long-term functional disabilities has increased, leading to impaired quality of life and significant healthcare costs. As an essential part of the multimodal interventions available to improve outcome of critical illness, optimal nutrition therapy should be provided during critical illness, after ICU discharge, and following hospital discharge.

Methods: This narrative review summarizes the latest scientific insights and guidelines on ICU nutrition delivery. Practical guidance is given to provide optimal nutrition therapy during the three phases of the patient journey.

Results: Based on recent literature and guidelines, gradual progression to caloric and protein targets during the initial phase of ICU stay is recommended. After this phase, full caloric dose can be provided, preferably based on indirect calorimetry. Phosphate should be monitored to detect refeeding hypophosphatemia, and when occurring, caloric restriction should be instituted. For proteins, at least 1.3 g of proteins/kg/day should be targeted after the initial phase. During the chronic ICU phase, and after ICU discharge, higher protein/caloric targets should be provided preferably combined with exercise. After ICU discharge, achieving protein targets is more difficult than reaching caloric goals, in particular after removal of the feeding tube. After hospital discharge, probably very high-dose protein and calorie feeding for prolonged duration is necessary to optimize the outcome. High-protein oral nutrition supplements are likely essential in this period. Several pharmacological options are available to combine with nutrition therapy to enhance the anabolic response and stimulate muscle protein synthesis.

Conclusions: During and after ICU care, optimal nutrition therapy is essential to improve the long-term outcome to reduce the likelihood of the patient to becoming a “victim” of critical illness. Frequently, nutrition targets are not achieved in any phase of recovery. Personalized nutrition therapy, while respecting different targets during the phases of the patient journey after critical illness, should be prescribed and monitored.

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Since nearly half of all patients with severe respiratory failure who are placed on a ventilator die, we tend to declare victory if a COVID-19 patient comes off the machine alive. But the reality is that many survivors of severe respiratory failure and other forms of critical illness fare poorly, even if they do beat their underlying disease. Their likelihood of developing PTSD, depression or anxiety is similar to that of soldiers returning from combat.

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A significant proportion of people in England and Wales would wish to donate their organs after death for the purpose of transplantation. This guideline recognizes the complexities that arise owing to the majority of potential organ donors lacking the capacity to be directly involved in decision making at the time of their death. This guideline seeks to promote the identification and fulfilment of these wishes through:
• More effective and expedient identification and referral of potential organ donors
• A more informed, considered, and timely approach to consent for donation that is based primarily on identifying the wishes of the individual whenever known and however recorded.

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Pain, Agitation, and Delirium Management Orderset

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Introduction
Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.
Methods
We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis. Separate blinded qualitative researchers conducted an independent analysis.
Results
Participants described three phases in the patient/family “ICU journey”; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by family shock and disorientation with families needing the presence and support of a provider. Participants described five important elements of daily care: honoring the patient’s voice, the need to know, decision-making, medical care, and culture in ICU. The post-ICU experience was characterized by the challenges of the transition from ICU to a hospital ward and long-term effects of critical illness. These “ICU journey” experiences were described as integral to appropriate interactions with the care team and comfort and trust in the ICU, which were perceived as essential for a community of caring. Participants provided suggestions for improvement: 1) provide a dedicated family navigator, 2) increase provider awareness of the fragility of family trust, 3) improve provider communication skills, 4) improve the transition from ICU to hospital ward, and 5) inform patients about the long-term effects of critical illness. Analyses by independent qualitative researchers identified similar themes.
Conclusions
Patient and family member-led research is feasible and can identify opportunities for improving care.

Brief description of media:

Introduction: Engaging patients and family members as partners in research increases the relevance of study results and enhances patient-centered care; how to best engage patients and families in research is unknown.

Methods: We tested a novel research approach that engages and trains patients and family members as researchers to see if we could understand and describe the experiences of patients admitted to the intensive care unit (ICU) and their families. Former patients and family members conducted focus groups and interviews with patients (n = 11) and families of surviving (n = 14) and deceased (n = 7) patients from 13 ICUs in Alberta Canada, and analyzed data using conventional content analysis. Separate blinded qualitative researchers conducted an independent analysis.

Results: Participants described three phases in the patient/family “ICU journey”; admission to ICU, daily care in ICU, and post-ICU experience. Admission to ICU was characterized by family shock and disorientation with families needing the presence and support of a provider. Participants described five important elements of daily care: honoring the patient’s voice, the need to know, decision-making, medical care, and culture in ICU. The post-ICU experience was characterized by the challenges of the transition from ICU to a hospital ward and long-term effects of critical illness. These “ICU journey” experiences were described as integral to appropriate interactions with the care team and comfort and trust in the ICU, which were perceived as essential for a community of caring. Participants provided suggestions for improvement: 1) provide a dedicated family navigator, 2) increase provider awareness of the fragility of family trust, 3) improve provider communication skills, 4) improve the transition from ICU to hospital ward, and 5) inform patients about the long-term effects of critical illness. Analyses by independent qualitative researchers identified similar themes.

Conclusions: Patient and family member-led research is feasible and can identify opportunities for improving care.

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For years it has been known that many patients who survive critical illness do not return to their original state of health, resulting in long-term consequences of critical illness.1Weakness acquired in the intensive care unit (ICU) is a physical consequence occurring in 25% to 80% of patients who receive mechanical ventilation for more than 4 days and in 50% to 75% of patients with sepsis. Nearly all patients affected with ICU-acquired weakness have symptoms that persist years later. Issues with cognitive function occur in 30% to 80% of ICU survivors and include memory, planning, problem-solving, visual-spatial, and processing problems. Cognitive consequences may improve during the months after discharge. However, 25% of patients with adult respiratory distress syndrome (ARDS) have long-term persistent cognitive impairment 6 years after discharge.