Changes in quality of life 1 year after intensive care: a multicenter prospective cohort of ICU survivors.

BACKGROUND: With survival rates of critical illness increasing, quality of life measures are becoming an important outcome of ICU treatment. Therefore, to study the impact of critical illness on quality of life, we explored quality of life before and 1 year after ICU admission in different subgroups of ICU survivors. METHODS: Data from an ongoing prospective multicenter cohort study, the MONITOR-IC, were used. Patients admitted to the ICU in one of eleven participating hospitals between July 2016 and June 2021 were included. Outcome was defined as change in quality of life, measured using the EuroQol five-dimensional (EQ-5D-5L) questionnaire, and calculated by subtracting the EQ-5D-5L score 1 day before hospital admission from the EQ-5D-5L score 1 year post-ICU. Based on the minimal clinically important difference, a change in quality of life was defined as a change in EQ-5D-5L score of ≥ 0.08. Subgroups of patients were based on admission diagnosis. RESULTS: A total of 3913 (50.6%) included patients completed both baseline and follow-up questionnaires. 1 year post-ICU, patients admitted after a cerebrovascular accident, intracerebral hemorrhage, or (neuro)trauma, on average experienced a significant decrease in quality of life. Conversely, 11 other subgroups of ICU survivors reported improvements in quality of life. The largest average increase in quality of life was seen in patients admitted due to respiratory disease (mean 0.17, SD 0.38), whereas the largest average decrease was observed in trauma patients (mean -0.13, SD 0.28). However, in each of the studied 22 subgroups there were survivors who reported a significant increase in QoL and survivors who reported a significant decrease in QoL. CONCLUSIONS:  This large prospective multicenter cohort study demonstrated the diversity in long-term quality of life between, and even within, subgroups of ICU survivors. These findings emphasize the need for personalized information and post-ICU care. TRIAL REGISTRATION: The MONITOR-IC study was registered at ClinicalTrials.gov: NCT03246334 on August 2nd 2017.

Resilience after severe critical illness: a prospective, multicentre, observational study (RESIREA).

BACKGROUND: Critical-illness survivors may experience post-traumatic stress disorder (PTSD) and quality-of-life impairments. Resilience may protect against psychological trauma but has not been adequately studied after critical illness. We assessed resilience and its associations with PTSD and quality of life, and also identified factors associated with greater resilience. METHODS: This prospective, multicentre, study in patients recruited at 41 French ICUs was done in parallel with the NUTRIREA-3 trial in patients given mechanical ventilation and vasoactive amines for shock. Three months to one year after intensive-care-unit admission, survivors completed the Connor-Davidson Resilience Scale (CD-RISC-25), Impact of Event-Revised scale for PTSD symptoms (IES-R), SF-36 quality-of-life scale, Multidimensional Scale of Perceived Social Support (MSPSS), and Brief Illness Perception Questionnaire (B-IPQ). RESULTS: Of the 382 included patients, 203 (53.1%) had normal or high resilience (CD-RISC-25 ≥ 68). Of these resilient patients, 26 (12.8%) had moderate to severe PTSD symptoms (IES-R ≥ 24) vs. 45 (25.4%) patients with low resilience (p = 0.002). Resilient patients had higher SF-36 scores. Factors independently associated with higher CD-RISC-25 scores were higher MSPSS score indicating stronger social support (OR, 1.027; 95%CI 1.008-1.047; p = 0.005) and lower B-IPQ scores indicating a more threatening perception of the illness (OR, 0.973; 95%CI 0.950-0.996; p = 0.02). CONCLUSIONS: Resilient patients had a lower prevalence of PTSD symptoms and higher quality of life scores, compared to patients with low resilience. Higher scores for social support and illness perception were independently associated with greater resilience. Thus, our findings suggest that interventions to strengthen social support and improve illness perception may help to improve resilience. Such interventions should be evaluated in trials with PTSD mitigation and quality-of-life improvement as the target outcomes.

Symptoms of anxiety, depression, and post-traumatic stress disorder 6 weeks and 6 months after ICU: Six out of 10 survivors affected.

BACKGROUND: Mental health conditions such as depression, anxiety and post-traumatic stress disorder (PTSD) are being increasingly recognised as common adverse outcomes for critical illness survivors. These conditions can have lasting consequences on their wellbeing, ability to return to their pre-illness level of functioning and health-related quality of life. There is a paucity of South African data in terms of the psychological aspects of the post-intensive care unit (ICU) syndrome. OBJECTIVE: To identify and characterise patients who suffered from significant symptoms of mental health disease and poor mental health- related quality of life after ICU admission and who may benefit from appropriate referral, further investigation and medical intervention. METHODS: Critically ill patients in a multidisciplinary tertiary ICU were prospectively enrolled upon ICU discharge. Survivors were screened for anxiety, depression and post-traumatic stress syndrome at 6 weeks and 6 months after hospital discharge. The Hospital Anxiety and Depression Score (HADS) and the Impact Of Events Scale - Revised (IES-R) were used as screening tools. The mental component summary score (MCS) of the RAND short form-36 was used to determine the effect of psychological symptoms on health-related quality of life (HRQOL). RESULTS: The median age of the 107 ICU survivors was 42 years, and half of them were admitted for complications of COVID-19. Six out of every 10 ICU survivors experienced significant symptoms of anxiety, depression and/or PTSD at follow-up. At the 6-month study visit, 4 out of every 10 patients were experiencing significant psychological symptoms. Those affected had a significantly lower mental HRQOL when compared with those who were unaffected. More than half of those affected had co-occurrence of psychological symptoms. Significant symptoms of anxiety were common, with 5 out of every 10 participants experiencing significant symptoms at either, or both, of the study visits. More than 3 out of 10 of affected patients' symptoms only occurred after the 6-week visit. Associations for significant psychological symptoms comprised female sex, younger age, a diagnosis of trauma and frightening memories of the ICU admission. CONCLUSION: The burden of mental health disease in ICU survivors is substantial, affecting their HRQOL. Six out of 10 patients experienced symptoms of anxiety, depression and PTSD, and more than half of those affected experienced co-occurrence of the conditions. A third of those affected developed these symptoms only beyond 6 weeks after hospital discharge. A potentially modifiable association with psychological symptoms was frightening memories of the ICU stay.

Fulfilling last wishes: improving the compassionate discharge process.

BACKGROUND: Compassionate discharges (ComD), commonly known as rapid discharges, are urgent one-way discharges for critically ill hospitalised patients with death expected within hours or less than 7 days, to die at their place of choice-usually in their own home. Challenges abound in this time-sensitive setting when multiple parties must work together to prepare medically unstable patients for discharge, yet healthcare staff are largely unaware of the process, resulting in delays. METHODS: Process mapping, an Ishikawa diagram and a Pareto chart were used to identify barriers, which included timely acquisition of home equipment and medication and poor communication among stakeholders. In May 2020, the Quality Improvement (QI) team embarked on a pilot project to reduce family caregiver anxiety and delays in the ComD process while maintaining a success rate above 90% over a 12-month period. INTERVENTIONS: Three Plan-Do-Study-Act (PDSA) cycles were used to refine a ComD resource package that was developed; this consisted of a checklist, a kit and caregiver resources. This was to support nurses, doctors and families during this difficult and emotional transition. Items in the ComD resource package were revised iteratively based on user feedback, with further data collected to measure its usefulness. RESULTS: The 12-month ComD success rate over 3 PDSA cycles were 88.9%, 94.2% and 96.7%, respectively, after each cycle. There was a consistent reduction in the level of family anxiety before and after caregiver training and resources. Reasons for failed ComD included acute clinical deterioration or delays in obtaining home oxygen support. CONCLUSION: The ComD resource package allowed collaborative work across different disciplines, strengthening the safety and utility of ComD and allowing patients to die in their place of choice. These are ubiquitous across settings; this QI problem is thus relevant beyond our local institution.

Health care workers' experiences of calling-for-help when taking care of critically ill patients in hospitals in Tanzania and Kenya.

BACKGROUND: When caring for critically ill patients, health workers often need to 'call-for-help' to get assistance from colleagues in the hospital. Systems are required to facilitate calling-for-help and enable the timely provision of care for critically ill patients. Evidence around calling-for-help systems is mostly from high income countries and the state of calling-for-help in hospitals in Tanzania and Kenya has not been formally studied. This study aims to describe health workers' experiences about calling-for-help when taking care of critically ill patients in hospitals in Tanzania and Kenya. METHODS: Ten hospitals across Kenya and Tanzania were visited and in-depth interviews conducted with 30 health workers who had experience of caring for critically ill patients. The interviews were transcribed, translated and the data thematically analyzed. RESULTS: The study identified three thematic areas concerning the systems for calling-for-help when taking care of critically ill patients: 1) Calling-for-help structures: there is lack of functioning structures for calling-for-help; 2) Calling-for-help processes: the calling-for-help processes are innovative and improvised; and 3) Calling-for-help outcomes: the help that is provided is not as requested. CONCLUSION: Calling-for-help when taking care of a critically ill patient is a necessary life-saving part of care, but health workers in Tanzanian and Kenyan hospitals experience a range of significant challenges. Hospitals lack functioning structures, processes for calling-for-help are improvised and help that is provided is not as requested. These challenges likely cause delays and decrease the quality of care, potentially resulting in unnecessary mortality and morbidity.

Factors Associated With Quality-of-Dying-and-Death Classes Among Critically Ill Patients.

Importance: Improving end-of-life care in the intensive care unit (ICU) is a priority, but clinically modifiable factors of quality of dying and death (QODD) are seldom identified. Objectives: To comprehensively identify factors associated with QODD classes of dying ICU patients, emphasizing clinically modifiable factors based on the integrative framework of factors associated with for bereavement outcomes. Design, Setting, and Participants: This observational cohort study was conducted at medical ICUs of 2 Taiwanese medical centers from January 2018 to March 2020 with follow-up through December 2022. Eligible participants included primary family surrogates responsible for decision making for critically ill ICU patients at high risk of death (Acute Physiology and Chronic Health Evaluation II score >20) but who survived more than 3 days after ICU admission. Data analysis was conducted from July to September 2023. Main Outcomes and Measures: QODD was measured by the 23-item ICU-QODD questionnaire. Factors associated with patient membership in 4 previously determined QODD classes (high, moderate, poor to uncertain, and worst) were examined using a 3-step approach for latent class modeling with the high QODD class as the reference category. Results: A total of 309 family surrogates (mean [SD] age, 49.83 [12.55] years; 184 women [59.5%] and 125 men [40.5%]) were included in the study. Of all surrogates, 91 (29.4%) were the patients' spouse and 66 (53.7%) were the patients' adult child. Patient demographics were not associated with QODD class. Two family demographics (age and gender), relationship with the patient (spousal or adult-child), and length of ICU stay were associated with QODD classes. Patients of surrogates perceiving greater social support were less likely to be in the poor to uncertain (adjusted odds ratio [aOR], 0.89; 95% CI, 0.83-0.94) and worst (aOR, 0.92; 95% CI, 0.87-0.96) QODD classes. Family meetings were associated with the poor to uncertain QODD class (aOR, 8.61; 95% CI, 2.49-29.74) and worst QODD class (aOR, 7.28; 95% CI, 1.37-38.71). Death with cardiopulmonary resuscitation was associated with the worst QODD class (aOR, 7.51; 95% CI, 1.12-50.25). Family presence at patient death was uniformly negatively associated with the moderate QODD class (aOR, 0.16; 95% CI, 0.05-0.54), poor to uncertain QODD class (aOR, 0.21; 95% CI, 0.05-0.82), and worst QODD class (aOR, 0.08; 95% CI, 0.02-0.38). Higher family satisfaction with ICU care was negatively associated with the poor to uncertain QODD class (aOR, 0.93; 95% CI, 0.87-0.98) and worst QODD class (aOR, 0.86; 95% CI, 0.81-0.92). Conclusions and Relevance: In this cohort study of critically ill patients and their family surrogates, modifiable end-of-life ICU-care characteristics played a more significant role in associations with patient QODD class than did immutable family demographics, preexisting family health conditions, patient demographics, and patient clinical characteristics, thereby illuminating actionable opportunities to improve end-of-life ICU care.

Parents' experiences of family and daily life after their child's stay in the pediatric intensive care unit: a qualitative descriptive study.

INTRODUCTION: The stay of a critically ill child in a pediatric intensive care unit (PICU) is a significant experience for the family. Thus far, little is known regarding the impact of this stay on parents and their healthy children for whom no continuous aftercare services are offered. This study aimed to capture the post-stay experience and needs of parents after this traumatic event so that they could return to family and everyday life. METHODS: This qualitative descriptive study was conducted in collaboration with four pediatric intensive care units in Switzerland. It included parents whose children had fully recovered after a stay and who did not require continuous medical follow-up. All children were hospitalized in the PICU for at least 48 h. Data were collected through narrative pairs (n = 6) and individual interviews (n = 8). Interviews were audio recorded, transcribed, coded inductively according to Saldaña, and analyzed. RESULTS: The results showed three related phases that influence each other to restore normality in daily life: Trust and inclusion in the treatment process during the stay (1), processing after the stay (2), and returning to everyday life (3). CONCLUSION: Follow-up meetings should be available to all parents whose children have been hospitalized in the PICU. In particular, it should also be available to parents whose children have fully recovered and no longer have any medical disabilities.

Post-Intensive Care Syndrome - An Opportunity For Collaborative Transition Between the Intensive and Primary Settings.

Critical care advancements have allowed clinicians to discover the many functional disabilities that survivors suffer. Recent research has focused on improving the long-term outcomes of critical illness survivors and optimizing their functional recovery. Post-intensive care syndrome (PICS) describes the disability that remains in those surviving critical illness following discharge from the intensive care unit (ICU). This comprises impairment in cognition, neuropsychiatric health, and physical function of the ICU survivor. Consequent to this, the health of family members of the survivor may also be affected adversely, termed PICS-family. PICS is defined as a new or worsening impairment in physical (ICU-acquired neuromuscular weakness), cognitive (thinking and judgment), or mental health status arising after critical illness and persisting beyond discharge from the acute care setting.

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning.

Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives: To determine the feasibility and acceptability of the Pediatric Serious Illness Communication Program (PediSICP) and explore family-centered outcomes. Design, Setting, and Participants: This cohort study was a single-group pilot study of the PediSICP in adolescents and young adults (AYAs; age ≥13 y) with serious illness, parents of seriously ill children, and interprofessional clinicians from April 2021 to March 2023 in a quaternary care pediatric hospital. Duration of follow-up was 1 month. Data were analyzed from January 2022 to March 2023. Exposure: The PediSICP includes clinician training preceding an ACP communication occasion supported by communication guides and a template for electronic medical record documentation. Main Outcomes and Measures: Outcomes of interest were parent, patient, and clinician experiences with and perceptions of the PediSICP. Feasibility was defined a priori as at least 70% clinician intervention completion rates. Results: A total of 10 virtual trainings were conducted among 40 clinicians, including 27 physicians, 7 nurse practitioners, 5 nurses, and 1 respiratory therapist, and 30 trained clinicians (75%) conducted and documented 42 ACP conversations with 33 parents (median [IQR] age, 43 [35-51] years; 25 [76%] female) and 5 AYAs (median [IQR] age, 19 [17-19] years; 3 [60%] female) who completed the intervention. The median (IQR) conversation duration was 27 (10-45) minutes. Most clinicians (29 clinicians [97%]) agreed that they felt prepared for the conversation, and all clinicians recommended the PediSICP. Parents reported participation was worthwhile (27 parents [84%]), they felt listened to (31 parents [94%]), and would recommend the PediSICP (28 parents [85%]). Parents endorsed higher therapeutic alliance after the PediSICP intervention compared with before (The Human Connection scale mean [SD] score, 57.6 [6.4] vs 55.3 [7.8]; P = .03) and decreased anxiety immediately after the intervention (Generalized Anxiety Disorder-7-item mean [SD] score, 10.1 [7.3] vs 8.4 [6.9]; P = .003), which persisted at the 1-month follow-up (mean [SD] score, 7.7 [6.8]; P = .03). Conclusions and Relevance: This pilot cohort study found that the PediSICP was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness. These findings suggest that the PediSICP may empower interprofessional clinicians and improve ACP with families of children and AYAs who are seriously ill.

Occurrence, co-occurrence and persistence of symptoms of depression and post-traumatic stress disorder in survivors of COVID-19 critical illness.

Background: Intensive care unit (ICU) admission and invasive mechanical ventilation (IMV) are associated with psychological distress and trauma. The COVID-19 pandemic brought with it a series of additional long-lasting stressful and traumatic experiences. However, little is known about comorbid depression and post-traumatic stress disorder (PTSD).Objective: To examine the occurrence, co-occurrence, and persistence of clinically significant symptoms of depression and PTSD, and their predictive factors, in COVID-19 critical illness survivors.Method: Single-centre prospective observational study in adult survivors of COVID-19 with ≥24 h of ICU admission. Patients were assessed one and 12 months after ICU discharge using the depression subscale of the Hospital Anxiety and Depression Scale and the Davidson Trauma Scale. Differences in isolated and comorbid symptoms of depression and PTSD between patients with and without IMV and predictors of the occurrence and persistence of symptoms of these mental disorders were analysed.Results: Eighty-nine patients (42 with IMV) completed the 1-month follow-up and 71 (34 with IMV) completed the 12-month follow-up. One month after discharge, 29.2% of patients had symptoms of depression and 36% had symptoms of PTSD; after one year, the respective figures were 32.4% and 31%. Coexistence of depressive and PTSD symptoms accounted for approximately half of all symptomatic cases. Isolated PTSD symptoms were more frequent in patients with IMV (p≤.014). The need for IMV was associated with the occurrence at one month (OR = 6.098, p = .005) and persistence at 12 months (OR = 3.271, p = .030) of symptoms of either of these two mental disorders.Conclusions: Comorbid depressive and PTSD symptoms were highly frequent in our cohort of COVID-19 critical illness survivors. The need for IMV predicted short-term occurrence and long-term persistence of symptoms of these mental disorders, especially PTSD symptoms. The specific role of dyspnea in the association between IMV and post-ICU mental disorders deserves further investigation.Trial registration: ClinicalTrials.gov identifier: NCT04422444.

Clinically significant depressive and post-traumatic stress disorder symptoms in survivors of COVID-19 critical illness, especially in patients who had undergone invasive mechanical ventilation, were highly frequent, occurred soon after discharge, and persisted over the long term.

Promoting End-of-Life Care and Healthcare Worker Well-Being: Implementing the 3 Wishes Project in an Oncology Intensive Care Unit.

This scholarly project implemented the 3 Wishes Project (3WP), which aims to fulfill the final wishes of dying critically ill patients, in a 16-bed tertiary intensive care unit (ICU). The project assessed outcomes through sur.

Is comorbidity alone responsible for changes in health-related quality of life among critical care survivors? A purpose-specific review.

BACKGROUND: Health-related quality of life (HRQoL) is one of the most important outcome variables for assessing the effectiveness of intensive care, together with mortality and survival, where comorbidity is suggested to have high impact. However, studies are lacking that examine to what extent HRQoL is affected after a general ICU period, beyond that of the effects that may be claimed to be due to comorbidities. DESIGN: Purpose-specific literature review including literature searches in PubMed, Cinahl, Scopus, and Cochrane library between 2010 and 2021. MEASUREMENTS AND RESULTS: This Purpose-specific, i.e., task focused review examines HRQoL (assessed by either SF-36 or EQ-5D, > 30 days after leaving the hospital) in adult patients (≥ 18 years) having an ICU length of stay > 24 h. Further, the HRQoL comparisons were adjusted for age or comorbidity. A total of 11 publications were found. A majority comprised observational, prospective cohort studies, except three that were either case-control, cross-sectional comparison, or retrospective cohort studies. A total of 18,566 critically ill patients were included, and the response rate ranged from 16 to 94%. In all studies, a recurrent relevant finding was that HRQoL after ICU care was affected by pre-ICU comorbidities. In three studies (n = 3), which included a comorbidity adjusted control group, there were no effect of the critical care period itself on the registered HRQoL after the critical care period. CONCLUSION: Health-Related Quality of Life (HRQoL) in former ICU patients appears to be primarily influenced by comorbidity. A notable limitation in this field of research is the high heterogeneity observed in the studies reviewed, particularly in terms of the HRQoL measurement tool employed, the duration of follow-up, the methodology for comorbidity assessment, and the adjustments for age and sex. Despite these variations and the limited number of studies in the review, the findings suggest a minimal HRQoL impact beyond the effects of comorbidity. Given the significant dearth of comprehensive studies in this domain, there is an escalating call for more thorough and detailed research endeavours.

Unmasking the hidden aftermath: postintensive care unit sequelae, discharge preparedness, and long-term follow-up.

A significant portion of individuals who have experienced critical illness encounter new or exacerbated impairments in their physical, cognitive, or mental health, commonly referred to as postintensive care syndrome. Moreover, those who survive critical illness often face an increased risk of adverse consequences, including infections, major cardiovascular events, readmissions, and elevated mortality rates, during the months following hospitalization. These findings emphasize the critical necessity for effective prevention and management of long-term health deterioration in the critical care environment. Although conclusive evidence from well-designed randomized clinical trials is somewhat limited, potential interventions include strategies such as limiting sedation, early mobilization, maintaining family presence during the intensive care unit stay, implementing multicomponent transition programs (from intensive care unit to ward and from hospital to home), and offering specialized posthospital discharge follow-up. This review seeks to provide a concise summary of recent medical literature concerning long-term outcomes following critical illness and highlight potential approaches for preventing and addressing health decline in critical care survivors.

Psychological Outcomes in Families of PICU Survivors: A Meta-Analysis.

BACKGROUND: Pediatric critical illness exposes family members to stressful experiences that may lead to subsequent psychological repercussions. OBJECTIVE: To systematically review psychological outcomes among PICU survivors' family members. DATA SOURCES: Four medical databases (PubMed, Embase, CINAHL and PsycInfo) were searched from inception till October 2023. STUDY SELECTION: Studies reporting psychological disorders in family members of PICU patients with at least 3 months follow-up were included. Family members of nonsurvivors and palliative care patients were excluded. DATA EXTRACTION: Screening and data extraction was performed according to PRISMA guidelines. Data were pooled using a random-effects model. RESULTS: Of 5360 articles identified, 4 randomized controlled trials, 16 cohort studies, and 2 cross-sectional studies were included (total patients = 55 597; total family members = 97 506). Psychological distress was reported in 35.2% to 64.3% and 40.9% to 53% of family members 3 to 6 months and 1 year after their child's PICU admission, respectively. Post-traumatic stress disorder was diagnosed in 10% to 48% of parents 3 to 9 months later. Parents that experienced moderate to severe anxiety and depression 3 to 6 months later was 20.9% to 42% and 6.1% to 42.6%, respectively. Uptake of mental counseling among parents was disproportionately low at 0.7% to 29%. Risk factors for psychiatric morbidity include mothers, parents of younger children, and longer duration of PICU stay. LIMITATIONS: The majority of studies were on parents with limited data on siblings and second degree relatives. CONCLUSIONS: There is a high burden of psychological sequelae in family members of PICU survivors. Risk stratification to identify high-risk groups and early interventions are needed.

Perils and payoffs for patients in serious illness conversations as described by physicians: a qualitative study.

BACKGROUND: The Serious Illness Care Programme was developed to promote more, better and earlier serious illness conversations. Conversations about goals and values are associated with improved experiences and outcomes for seriously ill patients. Clinicians' attitudes and beliefs are thought to influence the uptake and performance of serious illness conversations, yet little is known about how clinicians perceive the impact of these conversations on patients. This study aimed to explore physicians' perceptions regarding the impact of serious illness conversations for patients. METHODS: The Serious Illness Care Programme was implemented as a quality improvement project in two hospitals in Southern Sweden. Focus group evaluation discussions were conducted with 14 physicians and inductive thematic analysis was undertaken. RESULTS: The results revealed that physicians considered potential perils and optimised potential payoffs for patients when engaging in serious illness conversations. Potential perils encompassed inappropriate timing, damaging emotions and shattering hopes. Potential payoffs included reflection time, secure space, and united understandings. CONCLUSIONS: Physicians depicted a balance in evaluating the perils and payoffs of serious illness conversations for patients and recognised the interrelation of these possibilities through continual assessment and adjustment.

"We Feel Alone and Not Listened To": Parents' Perspectives on Pediatric Serious Illness Care in Somali, Hmong, and Latin American Communities.

PURPOSE: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to quality pediatric serious illness care and facilitate the development of potential improvements. Our aim was to explore parents' perspectives of their children's health care for serious illness from Somali, Hmong, and Latin-American communities in Minnesota. METHODS: We conducted a qualitative study with focus groups and individual interviews using immersion-crystallization data analysis with a community-based participatory research approach. RESULTS: Twenty-six parents of children with serious illness participated (8 Somali, 10 Hmong, and 8 Latin-American). Parents desired 2-way trusting and respectful relationships with medical staff. Three themes supported this trust, based on parents' experiences with challenging and supportive health care: (1) Informed understanding allows parents to understand and be prepared for their child's medical care; (2) Compassionate interactions with staff allow parents to feel their children are cared for; (3) Respected parental advocacy allows parents to feel their wisdom is heard. Effective communication is 1 key to improving understanding, expressing compassion, and partnering with parents, including quality medical interpretation for low-English proficient parents. CONCLUSIONS: Parents of children with serious illness from Somali, Hmong, and Latin-American communities shared a desire for improved relationships with staff and improved health care processes. Processes that enhance communication, support, and connection, including individual and system-level interventions driven by community voices, hold the potential for reducing health disparities in pediatric serious illness.

Mobile Mindfulness Intervention for Psychological Distress Among Intensive Care Unit Survivors: A Randomized Clinical Trial.

Importance: Although psychological distress is common among survivors of critical illness, there are few tailored therapies. Objective: To determine the optimal method for delivering a mindfulness intervention via a mobile app for critical illness survivors. Design, Setting, and Participants: This randomized clinical trial used a 2 × 2 × 2 factorial design and was conducted at 3 sites among survivors of critical illness with elevated postdischarge symptoms of depression. The study was conducted between August 2019 and July 2023. Interventions: Participants were randomized to 1 of 8 different groups as determined by 3 two-level intervention component combinations: intervention introduction method (mobile app vs therapist call), mindfulness meditation dose (once daily vs twice daily), and management of increasing symptoms (mobile app vs therapist call). Main Outcomes and Measures: The primary outcome was the 9-item Patient Health Questionnaire (PHQ-9) depression scale score (range, 0-27) at 1 month. Secondary outcomes included anxiety (7-item Generalized Anxiety Disorder) and posttraumatic stress disorder (Posttraumatic Stress Scale) symptoms at 1 and 3 months, adherence, and feasibility. General linear models were used to compare main effects and interactions of the components among intervention groups. A formal decisional framework was used to determine an optimized intervention version. Results: A total of 247 participants (mean [SD] age, 50.2 [15.4] years; 104 [42.1%] women) were randomized. Twice-daily meditation compared with once-daily meditation was associated with a 1.2 (95% CI, 0.04-2.4)-unit lower mean estimated PHQ-9 score at 1 month and a 1.5 (95% CI, 0.1-2.8)-unit lower estimated mean score at 3 months. The other 2 intervention components had no main effects on the PHQ-9. Across-group adherence was high (217 participants [87.9%] using the intervention at trial conclusion) and retention was strong (191 [77.3%] and 182 [73.7%] at 1 and 3 months, respectively). Conclusions and Relevance: A mindfulness intervention for survivors of critical illness that included an app-based introduction, twice-daily guided meditation, and app-based management of increasing depression symptoms was optimal considering effects on psychological distress symptoms, adherence, and feasibility. Trial Registration: ClinicalTrials.gov Identifier: NCT04038567.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

Long-term outcomes after treatment of delirium during critical illness with antipsychotics (MIND-USA): a randomised, placebo-controlled, phase 3 trial.

BACKGROUND: Delirium is common during critical illness and is associated with long-term cognitive impairment and disability. Antipsychotics are frequently used to treat delirium, but their effects on long-term outcomes are unknown. We aimed to investigate the effects of antipsychotic treatment of delirious, critically ill patients on long-term cognitive, functional, psychological, and quality-of-life outcomes. METHODS: This prespecified, long-term follow-up to the randomised, double-blind, placebo-controlled phase 3 MIND-USA Study was conducted in 16 hospitals throughout the USA. Adults (aged ≥18 years) who had been admitted to an intensive care unit with respiratory failure or septic or cardiogenic shock were eligible for inclusion in the study if they had delirium. Participants were randomly assigned-using a computer-generated, permuted-block randomisation scheme with stratification by trial site and age-in a 1:1:1 ratio to receive intravenous placebo, haloperidol, or ziprasidone for up to 14 days. Investigators and participants were masked to treatment group assignment. 3 months and 12 months after randomisation, we assessed survivors' cognitive, functional, psychological, quality-of-life, and employment outcomes using validated telephone-administered tests and questionnaires. This trial was registered with ClinicalTrials.gov, NCT01211522, and is complete. FINDINGS: Between Dec 7, 2011, and Aug 12, 2017, we screened 20 914 individuals, of whom 566 were eligible and consented or had consent provided to participate. Of these 566 patients, 184 were assigned to the placebo group, 192 to the haloperidol group, and 190 to the ziprasidone group. 1-year survival and follow-up rates were similar between groups. Cognitive impairment was common in all three treatment groups, with a third of survivors impaired at both 3-month and 12-month follow-up in all groups. More than half of the surveyed survivors in each group had cognitive or physical limitations (or both) that precluded employment at both 3-month and 12-month follow-up. At both 3 months and 12 months, neither haloperidol (adjusted odds ratio 1·22 [95% CI 0·73-2.04] at 3 months and 1·12 [0·60-2·11] at 12 months) nor ziprasidone (1·07 [0·59-1·96] at 3 months and 0·94 [0·62-1·44] at 12 months) significantly altered cognitive outcomes, as measured by the Telephone Interview for Cognitive Status T score, compared with placebo. We also found no evidence that functional, psychological, quality-of-life, or employment outcomes improved with haloperidol or ziprasidone compared with placebo. INTERPRETATION: In delirious, critically ill patients, neither haloperidol nor ziprasidone had a significant effect on cognitive, functional, psychological, or quality-of-life outcomes among survivors. Our findings, along with insufficient evidence of short-term benefit and frequent inappropriate continuation of antipsychotics at hospital discharge, indicate that antipsychotics should not be used routinely to treat delirium in critically ill adults. FUNDING: National Institutes of Health and the US Department of Veterans Affairs.