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BACKGROUND: Among survivors of critical illness, prescription of potentially inappropriate medications (PIM) at hospital discharge is thought to be an important, modifiable patient safety concern. To date, there are little empirical data evaluating this issue. RESEARCH QUESTION: The objective of this study was to determine the frequency of PIM prescribed to survivors of acute respiratory failure (ARF) at hospital discharge and explore their association with readmissions or death within 90 days of hospital discharge. STUDY DESIGN AND METHODS: Prospective multicenter cohort study of ARF survivors admitted to ICUs and discharged home. Prospective of new PIMs with a high-adverse-effect profile ("high impact") at discharge was the primary exposure. Potential inappropriateness was determined by a structured consensus process using Screening Tool of Older Persons' Prescriptions-Screening Tool to Alert to Right Treatment, Beers' criteria, and clinical context of prescriptions by a multidisciplinary team. Covariate balancing propensity score was used for the primary analysis. RESULTS: Of the 195 Addressing Post Intensive Care Syndrome-01 (APICS-01) patients, 169 (87%) had ≥1 new medications prescribed at discharge, with 154 (91.1%) prescribed with one or more high-impact (HI) medications. Patients were prescribed a median of 5 [3-7] medications, of which 3 [1-4] were HI. Twenty percent of HI medications were potentially inappropriate. Medications with significant central nervous system side-effects were most prescribed potentially inappropriately. Forty-six (30%) patients experienced readmission or death within 90 days of hospital discharge. After adjusting for prespecified covariates, the association between prescription of potentially inappropriate HI medications and the composite primary outcome did not meet the prespecified threshold for statistical significance (risk ratio: 0.54; 0.26-1.13; p = 0.095) or with the constituent endpoints: readmission (risk ratio: 0.57, 0.27-1.11) or death (0.7, 0.05-9.32). CONCLUSION: At hospital discharge, most ARF survivors are prescribed medications with a high-adverse-effect profile and approximately one-fifth are potentially inappropriate. Although prescription of such medications was not associated with 90-day readmissions and mortality, these results highlight an area for additional investigation.
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Acute respiratory distress syndrome (ARDS) is associated with long-term impairments in brain and muscle function that significantly impact the quality of life of those who survive the acute illness. The mechanisms underlying these impairments are not yet well understood, and evidence-based interventions to minimize the burden on patients remain unproved. The NHLBI of the NIH assembled a workshop in April 2023 to review the state of the science regarding ARDS-associated brain and muscle dysfunction, to identify gaps in current knowledge, and to determine priorities for future investigation. The workshop included presentations by scientific leaders across the translational science spectrum and was open to the public as well as the scientific community. This report describes the themes discussed at the workshop as well as recommendations to advance the field toward the goal of improving the health and well-being of ARDS survivors.
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Síndrome de Dificultad Respiratoria , Sobrevivientes , Humanos , Síndrome de Dificultad Respiratoria/terapia , Síndrome de Dificultad Respiratoria/fisiopatología , Estados Unidos , National Heart, Lung, and Blood Institute (U.S.) , Calidad de Vida , Encéfalo/fisiopatologíaRESUMEN
Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.
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Enfermedad Crítica , Cuidados Paliativos , Humanos , Estados Unidos , Cuidados Paliativos/métodos , Unidades de Cuidados Intensivos , Cuidados Críticos , Sobrevivientes , Investigación CualitativaRESUMEN
OBJECTIVE: We summarize the existing data on the occurrence of physical, emotional, and cognitive dysfunction associated with postintensive care syndrome (PICS) in adult survivors of venoarterial extracorporeal membrane oxygenation (VA-ECMO). DATA SOURCES: MEDLINE, Cochrane Library, EMBASE, Web of Science, and CINAHL databases were searched. STUDY SELECTION: Peer-reviewed studies of adults receiving VA-ECMO for any reason with at least one measure of health-related quality of life outcomes or PICS at long-term follow-up of at least 6 months were included. DATA EXTRACTION: The participant demographics and baseline characteristics, in-hospital outcomes, long-term health outcomes, quality of life outcome measures, and prevalence of PICS were extracted. DATA SYNTHESIS: Twenty-seven studies met inclusion criteria encompassing 3,271 patients who were treated with VA-ECMO. The studies were limited to single- or two-center studies. Outcomes variables and follow-up time points evaluated were widely heterogeneous which limits comprehensive analysis of PICS after VA-ECMO. In general, the longer-term PICS-related outcomes of survivors of VA-ECMO were worse than the general population, and approaching that of patients with chronic disease. Available studies identified high rates of abnormal 6-minute walk distance, depression, anxiety, and posttraumatic stress disorder that persisted for years. Half or fewer survivors return to work years after discharge. Only 2 of 27 studies examined cognitive outcomes and no studies evaluated cognitive dysfunction within the first year of recovery. No studies evaluated the impact of targeted interventions on these outcomes. CONCLUSIONS: Survivors of VA-ECMO represent a population of critically ill patients at high risk for deficits in physical, emotional, and cognitive function related to PICS. This systematic review highlights the alarming reality that PICS and in particular, neurocognitive outcomes, in survivors of VA-ECMO are understudied, underrecognized, and thus likely undertreated. These results underscore the imperative that we look beyond survival to focus on understanding the burden of survivorship with the goal of optimizing recovery and outcomes after these life-saving interventions. Future prospective, multicenter, longitudinal studies in recovery after VA-ECMO are justified.
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Cognición , Oxigenación por Membrana Extracorpórea , Calidad de Vida , Trastornos por Estrés Postraumático , Adulto , Humanos , Ansiedad , Oxigenación por Membrana Extracorpórea/métodos , Estudios Multicéntricos como Asunto , Estudios Retrospectivos , Trastornos por Estrés Postraumático/epidemiología , Trastornos por Estrés Postraumático/terapiaRESUMEN
BACKGROUND: Patients often have high expectations for recovery after critical illness, but the impact of these expectations on subsequent quality of life (QoL) after serious illnesses has not been evaluated empirically. RESEARCH QUESTION: Among adult survivors of acute respiratory failure (ARF), are met vs unmet expectations for health associated with self-reported QoL 6 months after discharge? STUDY DESIGN AND METHODS: This was a prospective longitudinal cohort study enrolling consecutive adult patients with ARF managed in ICUs at five academic medical centers. At hospital discharge, we evaluated participants' expected health 6 months in the future via a visual analog scale (VAS; range, 0-100), with higher scores representing better expected health. At 6-month follow-up, perceived health was assessed using the EQ-5D VAS, and QoL was assessed using the World Health Organization Quality of Life Brief Version (WHOQOL-BREF) instrument. Participants' health expectations were categorized as having been met when perceived health at 6 months was no more than eight points lower than their expectation at study enrollment. The primary analysis compared WHOQOL-BREF domain scores (range, 0-100) at 6 months after discharge in patients with met vs unmet health expectations using the nonparametric Mann-Whitney U test. Secondary analysis modeled WHOQOL-BREF domain scores using multivariate regression, and sensitivity analyses assessed QoL using EQ-5D-5L index values. RESULTS: In the primary analysis, QoL was significantly better among participants with met vs unmet health expectations across all domains of the WHOQOL-BREF: physical health (estimated difference in scores: median, 19 [interquartile range (IQR), 12-15]; P < .001), psychological health (median, 12 [IQR, 6-18]; P < .001), social relationships (median, 6 [IQR, 0-13]; P = .02), and environmental health (median, 12 [IQR, 6-13]; P < .001). In multivariate regression, the difference between expected and perceived health remained associated significantly with the physical health domain score. INTERPRETATION: Fulfillment of health expectations is associated with better QoL after ARF, suggesting a mechanism underpinning successful ICU recovery programs that incorporate normalization and expectation management.
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Calidad de Vida , Insuficiencia Respiratoria , Adulto , Humanos , Estudios Prospectivos , Motivación , Estudios Longitudinales , Insuficiencia Respiratoria/terapia , Encuestas y CuestionariosRESUMEN
OBJECTIVES: To characterize early unmet nonmedication discharge needs (UDNs), classified as durable medical equipment (DME), home health services (HHS), and follow-up medical appointments (FUAs) and explore their association with 90-day readmission and mortality among survivors of acute respiratory failure (ARF) who were discharged home. DESIGN: Prospective multicenter cohort study. SETTING: Six academic medical centers across United States. PARTICIPANTS: Adult survivors of ARF who required an ICU stay and were discharged home from hospital. INTERVENTIONS: None. Exposure of interest was the proportion of UDN for the following categories: DME, HHS, and FUA ascertained within 7-28 days after hospital discharge. MEASUREMENTS AND MAIN RESULTS: Two hundred eligible patients were recruited between January 2019 and August 2020. One-hundred ninety-five patients were included in the analytic cohort: 118 were prescribed DME, 134 were prescribed HHS, and 189 needed at least one FUA according to discharge plans. 98.4% (192/195) had at least one identified nonmedication need at hospital discharge. Median (interquartile range) proportion of unmet needs across three categories were 0 (0-15%) for DME, 0 (0-50%) for HHS, and 0 (0-25%) for FUA, and overall was 0 (0-20%). Fifty-six patients (29%) had 90-day death or readmission. After adjusting for prespecified covariates, having greater than the median level of unmet needs was not associated with an increased risk of readmission or death within 90 days of discharge (risk ratio, 0.89; 0.51-1.57; p = 0.690). Age, hospital length of stay, Acute Physiology and Chronic Health Evaluation II severity of illness score, and Multidimensional Scale Perceived Social Support score were associated with UDN. CONCLUSIONS: UDN were common among survivors of ARF but not significantly associated a composite outcome of 90-day readmission or death. Our results highlight the substantial magnitude of UDN and identifies areas especially vulnerable to lapses in healthcare coordination.
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Alta del Paciente , Insuficiencia Respiratoria , Adulto , Humanos , Estados Unidos/epidemiología , Estudios Prospectivos , Readmisión del Paciente , Estudios de Cohortes , Hospitales , Sobrevivientes , Insuficiencia Respiratoria/terapia , Estudios Retrospectivos , Tiempo de InternaciónRESUMEN
BACKGROUND: Intensive Care Unit Recovery Clinics (ICU-RCs) were founded to address post-intensive care syndrome among ICU survivors. Telemedicine ICU-RCs may facilitate access for more ICU survivors, however, patient and caregiver experiences with telemedicine ICU-RCs have not been explored qualitatively. OBJECTIVE: To explore patient and informal caregiver experiences with a telemedicine ICU-RC. METHODS: Our qualitative exploratory cross-sectional study was guided by qualitative description methodology. Telemedicine ICU-RC visits were conducted at 3- and 12-weeks post-discharge following critical illness. Patients, and caregivers when available, met with an ICU pharmacist, ICU physician, and a neuropsychologist via Zoom. Thereafter, we conducted qualitative (1:1) telephone interviews with 14 patients and 12 caregivers recruited purposefully. Data were analyzed using conventional content analysis. RESULTS: Five themes were identified: (1) general impressions of the intervention; (2) intervention organization and delivery; (3) intervention substance; (4) caregiver participation; and (5) ways to improve the intervention. Participants found the telemedicine delivery acceptable, convenient, time-saving, and conducive to thorough discussions. Participants appreciated the information, reassurance, and validation. Attention to mental health during the visits was strongly endorsed. Caregiver involvement depended on patient self-management and technical ability. Suggestions included scheduling a 1-week post-discharge visit, more follow-up visits, and individualizing content for in-depth discussions, including mental health evaluation. CONCLUSIONS: The study results enhance the understanding of patient and caregiver experiences with a telemedicine ICU-RC. Participants' narratives helped to formulate recommendations to improve telemedicine ICU-RC delivery and content. Acceptability of this intervention indicates the potential for wider implementation of telemedicine ICU-RCs to reach more ICU survivors.
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Cuidadores , Telemedicina , Humanos , Cuidadores/psicología , Estudios Transversales , Cuidados Posteriores , Alta del Paciente , Unidades de Cuidados Intensivos , Cuidados Críticos/métodosRESUMEN
Background: Intensive Care Unit recovery clinics (ICU-RC), are multidisciplinary outpatient clinics designed to identify and treat post-intensive care syndrome impairments unique to each survivor of critical illness. Engagement is limited, thus we aimed to describe patient- and hospitalization-related sociodemographic factors associated with scheduling and attending in-person ICU-RC visits. Design: Consecutive case series of prospectively collected ICU-RC referral data. Setting: Data was collected over a 9-year period (2012-2020) for patients referred to an ICU-RC from ICUs at an academic medical center in the southeast United States. Participants: 251 adults admitted to a medical, surgical, burn, or trauma ICU referred to the ICU-RC and eligible to be scheduled for a visit. Main Outcome and Measures: The main study outcome was scheduling and completing an ICU-RC visit. Independent variables included patient demographics, ICU visit characteristics (eg, diagnosis, ventilator days), severity of illness, discharge disposition, ICU-RC referral criteria (eg, shock, delirium), and clinic scheduling administrative data (eg, referral date, clinic visit date). Results: Of 251 ICU-RC referrals eligible for a visit, 128 were scheduled, and 91 completed a visit. In univariate models older age, unspecified shock, and distance from the clinic location were associated with decreased in-person ICU-RC engagement. In a multivariable logistic regression using the same predictors and interactions, older age, unspecified shock, and home-to-clinic distance remained as factors decreasing the likelihood of ICU-RC engagement. There was a decreasing likelihood of scheduling and attending an ICU-RC visit for every additional mile of distance the patient lived from the ICU-RC. Male sex was a strong predictor of completing an ICU-RC visit. Conclusions: Older ICU survivors and those who live farther from the clinic site are less likely to engage in an in-person ICU-RC. Innovation and telemedicine strategies are needed to improve access to ICU recovery care for these populations.
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Hospitalización , Unidades de Cuidados Intensivos , Adulto , Humanos , Masculino , Instituciones de Atención Ambulatoria , Enfermedad Crítica/terapiaRESUMEN
Rationale: Discussion of patient expectations for recovery is a component of intensive care unit (ICU) follow-up clinics. However, few studies have formally evaluated recovery-related expectations of ICU survivors. Objectives: To estimate the prevalence of unmet expectations for recovery 6 months after hospital discharge among adult survivors of acute respiratory failure (ARF). Methods: This was a prospective, longitudinal, cohort study of survivors of ARF discharged to home from five U.S. medical centers. Expectations for functional recovery were assessed by asking which activities and instrumental activities of daily living (I/ADLs) survivors expected to perform independently at 6 months. Survivors' expectations for overall health status were assessed using a visual analogue scale ranging from 0 to 100. At 6-month follow-up, participants reported which I/ADLs they could perform independently and rated their overall health status using a 100-point visual analogue scale. We defined a participant's functional expectations as being met if they reported independently performing I/ADLs as expected at hospital discharge. Health expectations were considered to be met when self-rated health status at 6 months was no more than 8 points lower than expected at enrollment. Results: Among 180 enrollees, 169 (94%) were alive, and 160 of these (95%) participated in 6-month follow-up. Functional expectations were met for 71% of participating survivors, and overall health expectations were met for 50%. Expectations for functional independence were high, ranging from 87% (housekeeping) to 99% (using a telephone). General health expectations were variable (median, 85; interquartile range [IQR], 75-95). At 6-month follow-up, self-rated, overall health ranged from 2 to 100 (median, 80; IQR, 60-85). In exploratory analyses, participants with met versus unmet expectations differed most in formal education (functional expectations standardized difference = 0.88; health expectations standardized difference = 0.41). Conclusions: Expectations of survivors of ARF about independent functioning were high and generally met, but half had unmet general health expectations 6 months after discharge. It is difficult to predict whose health expectations will be unmet, but possessing less formal education may be a risk factor. Clinical trial registered with www.clinicaltrials.gov (NCT03797313).
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Síndrome de Dificultad Respiratoria , Insuficiencia Respiratoria , Adulto , Humanos , Estudios Prospectivos , Estudios de Cohortes , Actividades Cotidianas , Motivación , Calidad de Vida , Unidades de Cuidados Intensivos , Insuficiencia Respiratoria/terapiaRESUMEN
BACKGROUND: Research confirms the heterogeneous nature of patient challenges during recovery from the ICU and supports the need for modifying care experiences, but few data are available to guide clinicians seeking to support patients' individual recovery trajectories. RESEARCH QUESTION: What is the content of patient-provider dialogues in a telemedicine multidisciplinary ICU recovery clinic (ICU-RC)? STUDY DESIGN AND METHODS: We conducted a qualitative descriptive study in a telemedicine multidisciplinary ICU-RC at a tertiary academic medical center in the southeastern United States. The sample included 19 patients and 13 caregivers (≥ 18 years of age) attending a telemedicine ICU-RC visit after critical illness resulting from septic shock or ARDS. Patients and caregivers met with an ICU pharmacist, ICU physician, and a psychologist via a secure web-conferencing platform for 33 ICU-RC visits within 12 weeks of hospital discharge. Telemedicine ICU-RC visits were audio-recorded and transcribed verbatim for analysis. A coding system was developed using iterative inductive and deductive approaches. RESULTS: Two themes were identified from the patient-provider dialogue: (1) problem identification and (2) problem-solving strategies. We identified five subthemes that capture the types of problems identified: health status, mental health and cognition, medication management, health-care access and navigation, and quality of life. Problem-solving subthemes included facilitating care coordination and transitions, providing education, and giving constructive feedback and guidance. INTERPRETATION: Patients surviving a critical illness experience a complexity of problems that may be addressed best by a multidisciplinary ICU-RC. Through analysis of our telemedicine ICU-RC dialogues, we were able to identify problems and solutions to address challenges during a critical transitional phase of ICU recovery. TRIAL REGISTRY: ClinicalTrials.gov; No.: NCT03926533; URL: www. CLINICALTRIALS: gov.
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Cuidados Críticos , Calidad de Vida , Humanos , Atención Ambulatoria , Cuidados Críticos/métodos , Enfermedad Crítica/terapia , Enfermedad Crítica/psicología , Unidades de Cuidados IntensivosRESUMEN
OBJECTIVE: We sought to determine the influence of venovenous extracorporeal membrane oxygenation (ECMO) on outcomes of mechanically ventilated patients with COVID-19 during the first 120 days after hospital discharge. METHODS: Five academic centers conducted a retrospective analysis of mechanically ventilated patients with COVID-19 admitted during March through May 2020. Survivors had access to a multidisciplinary postintensive care recovery clinic. Physical, psychological, and cognitive deficits were measured using validated instruments and compared based on ECMO status. RESULTS: Two hundred sixty two mechanically ventilated patients were compared with 46 patients cannulated for venovenous ECMO. Patients receiving ECMO were younger and traveled farther but there was no significant difference in gender, race, or body mass index. ECMO patients were mechanically ventilated for longer durations (median, 26 days [interquartile range, 19.5-41 days] vs 13 days [interquartile range, 7-20 days]) and were more likely to receive inhaled pulmonary vasodilators, neuromuscular blockade, investigational COVID-19 therapies, blood transfusions, and inotropes. Patients receiving ECMO experienced greater bleeding and clotting events (P < .01). However, survival at discharge was similar (69.6% vs 70.6%). Of the 217 survivors, 65.0% had documented follow-up within 120 days. Overall, 95.5% were residing at home, 25.7% had returned to work or usual activity, and 23.1% were still using supplemental oxygen; these rates did not differ significantly based on ECMO status. Rates of physical, psychological, and cognitive deficits were similar. CONCLUSIONS: Our data suggest that COVID-19 survivors experience significant physical, psychological, and cognitive deficits following intensive care unit admission. Despite a more complex critical illness course, longer average duration of mechanical ventilation, and longer average length of stay, patients treated with venovenous ECMO had similar survival at discharge and outcomes within 120 days of discharge.
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COVID-19 , Oxigenación por Membrana Extracorpórea , Humanos , COVID-19/terapia , Oxigenación por Membrana Extracorpórea/efectos adversos , Estudios Retrospectivos , Unidades de Cuidados Intensivos , SobrevivientesRESUMEN
BACKGROUND: The introduction of COVID-19 vaccines exposed volatility and hesitancy around vaccines. Some health care models, including ICU recovery clinics (ICU-RCs), are structured to provide vaccine counseling. However, information regarding provider and patient vaccine conversations is limited in this postacute setting. RESEARCH QUESTION: What factors influence the decision-making process of patients who have survived an ICU stay surrounding influenza and COVID-19 vaccination? STUDY DESIGN AND METHODS: To understand further vaccine perceptions after critical illness, a secondary qualitative thematic analysis was performed using transcripts from a randomized controlled trial designed to develop and refine a telemedicine approach to ICU recovery. Thirty-three ICU-RC visits with 19 adult patients and 13 caregivers were conducted within 12 weeks of hospital discharge. The analysis was guided by the theory of planned behavior (TPB). RESULTS: Five themes were elicited from the data. The first four themes arose from the TPB: (1) behavioral and attitudinal beliefs (not being susceptible to the flu, concerns about the COVID-19 vaccine causing fertility issues, and not being tested enough), (2) normative beliefs (everyone they know is getting the influenza vaccine so they are, too), (3) control vaccine beliefs (patients are more likely to get the COVID-19 vaccine if it is easy to obtain), and (4) intention to vaccinate. Another theme not related to the TPB arose and could contribute to vaccine intent and behavior: (5) health team engagement with patients and caregivers (allowing for ICU clinicians to correct vaccine misinformation in real time). INTERPRETATION: Using the information learned in our study, the period after critical illness or other acute illness events may be an especially fruitful target for designing an action plan for improving public trust in vaccines and improving overall completion rates; however, further research is needed. TRIAL REGISTRY: ClinicalTrials.gov; No.: NCT03926533; URL: www.clinicaltrials.gov.
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INTRODUCTION: Patients with asthma and chronic obstructive pulmonary disease rely on inhaler therapy to reduce disease progression and exacerbation risk. Patients admitted to the hospital are at an increased risk for exacerbations and readmission if their inhaler therapy upon discharge is not aligned with current guidelines and/or affordable. OBJECTIVE: Assess the appropriateness of the chronic inhaler regimen for patients admitted to the hospital based on clinical practice guidelines and insurance coverage. METHODS: A sub-study was designed to analyze a cohort of a single-center, pragmatic, prospective randomized controlled trial at a large academic medical center. Patients admitted to a medicine service with a pharmacist and prescribed a long-acting inhaler were included. Participants randomized to a pharmacist-led intervention were assessed for inhaler appropriateness based on clinical guidelines and patient insurance. The objective of this sub-study is to assess the number of inhalers identified as inappropriate based on the pharmacist's review. A patient was considered to have an inappropriate inhaler regimen if any of their inhalers were inconsistent with guideline recommendations or not covered by insurance. Descriptive statistics were used to characterize appropriate inhaler use. RESULTS: The study pharmacist reviewed 552 unique inhalers for 348 patients. Overall, 42% of inhalers were inappropriate, affecting 50.3% of participants. 20% of inhalers were inappropriate based on insurance, 26% were inappropriate based on guidelines, and 7% were inappropriate based on both criteria. Recommendations were placed via a pharmacy consult for 198 patients (57%), most recommending an inhaler initiation (55%), followed by inhaler discontinuation (38%). CONCLUSION: A pharmacist-led review of chronic inhaler therapy for patients admitted to the hospital identified the need for a change in therapy based on financial or clinical guidelines in over half of the patients reviewed. Interventions to increase the appropriateness of prescribed inhalers are needed to reduce disease progression and disease exacerbation.
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OBJECTIVES: To engage critical care end-users (survivors and caregivers) to describe their emotions and experiences across their recovery trajectory, and elicit their ideas and solutions for health service improvements to improve the ICU recovery experience. DESIGN: End-user engagement as part of a qualitative design using the Framework Analysis method. SETTING: The Society of Critical Care Medicine's THRIVE international collaborative sites (follow-up clinics and peer support groups). SUBJECTS: Patients and caregivers following critical illness and identified through the collaboratives. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Eighty-six interviews were conducted. The following themes were identified: 1) Emotions and experiences of patients-"Loss of former self; Experiences of disability and adaptation"; 2) Emotions and experiences of caregivers-"Emotional impacts, adopting new roles, and caregiver burden; Influence of gender roles; Adaptation, adjustment, recalibration"; and 3) Patient and caregiver-generated solutions to improve recovery across the arc of care-"Family-targeted education; Expectation management; Rehabilitation for patients and caregivers; Peer support groups; Reconnecting with ICU post-discharge; Access to community-based supports post-discharge; Psychological support; Education of issues of ICU survivorship for health professionals; Support across recovery trajectory." Themes were mapped to a previously published recovery framework (Timing It Right) that captures patient and caregiver experiences and their support needs across the phases of care from the event/diagnosis to adaptation post-discharge home. CONCLUSIONS: Patients and caregivers reported a range of emotions and experiences across the recovery trajectory from ICU to home. Through end-user engagement strategies many potential solutions were identified that could be implemented by health services and tested to support the delivery of higher-quality care for ICU survivors and their caregivers that extend from tertiary to primary care settings.
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Cuidados Posteriores , Cuidadores , Humanos , Cuidadores/psicología , Alta del Paciente , Cuidados Críticos , Sobrevivientes/psicologíaRESUMEN
Rationale: There are limited data on the impact of the coronavirus disease (COVID-19) pandemic on intensive care unit (ICU) recovery clinic care delivery practices. Objectives: We sought to better understand the patient-level factors affecting ICU recovery clinic care and changing clinical thinking during the COVID-19 pandemic. We also sought to understand how the COVID-19 pandemic sparked innovation within ICU recovery clinics. Methods: A multicenter qualitative study was conducted with ICU recovery clinic interprofessional clinicians involved with the Critical and Acute Illness Recovery Organization (CAIRO) between February and March 2021. Data were collected using semistructured interviews and were analyzed using thematic analysis. Key themes were organized in a working analytical framework. Results: Twenty-nine participants from 15 international sites participated in the study. Participants identified three patient-level key themes that influenced care delivery in ICU recovery programs: 1) social isolation, 2) decreased emotional reserve in patients and families, and 3) substantial social care needs. Changes in ICU recovery clinic care delivery occurred at both the clinician level (e.g., growing awareness of healthcare disparities and inequities, recognition of financial effects of illness, refinement of communication skills, increased focus on reconstructing the illness narrative) and the practice level (e.g., expansion of care delivery modes, efforts to integrate social care) in response to each of the patient-level themes. Identified gaps in ICU recovery clinic care delivery during the COVID-19 pandemic included a need for multidisciplinary team members, access to care issues (e.g., digital poverty, health insurance coverage, language barriers), and altered family engagement. Conclusions: This study demonstrates that addressing patient-level factors such as efforts to integrate social care, address financial needs, refine provider communication skills (e.g., empathic listening), and enhance focus on reconstructing the illness narrative became important priorities during the ICU recovery clinic visit during the COVID-19 pandemic. We also identified several ongoing gaps in ICU recovery clinic care delivery that highlight the need for interventions focused on the integration of social and clinic services for critical care survivors.
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COVID-19 , Pandemias , Humanos , Enfermedad Crítica , Unidades de Cuidados Intensivos , Investigación Cualitativa , Cuidados Críticos/psicologíaRESUMEN
Intensive care unit follow-up clinics are becoming an increasingly widespread intervention to facilitate the physical, cognitive, psychiatric, and social rehabilitation of survivors of critical illness who have post-intensive care syndrome. Developing and sustaining intensive care unit follow-up clinics can pose significant challenges, and clinics need to be tailored to the physical, personnel, and financial resources available at a given institution. Although no standard recipe guarantees a successful intensive care unit aftercare program, emerging clinics will need to address a common set of hurdles, including securing an adequate space; assembling an invested, multidisciplinary staff; procuring the necessary financial, information technology, and physical stuff; using the proper screening tools to identify patients most likely to benefit and to accurately identify disabilities during the visit; and selling it to colleagues, hospital administrators, and the community at large.
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Enfermedad Crítica , Unidades de Cuidados Intensivos , Cuidados Posteriores , Cuidados Críticos/psicología , Enfermedad Crítica/psicología , Estudios de Seguimiento , Humanos , Sobrevivientes/psicologíaRESUMEN
BACKGROUND: Telehealth-based intensive care unit recovery clinics (ICU-RCs) can increase access to post-ICU recovery care for patients and their families. It is crucial to understand patients' and caregivers' experience of illness and recovery to build patient- and family-centered ICU-RCs. OBJECTIVE: To explore patients' and caregivers' perceptions of ICU hospitalization and recovery. METHODS: Individual semistructured telephone interviews were conducted with 14 patients and 12 caregivers who participated in a telehealth ICU-RC. This study was guided by qualitative description methodology. Conventional content analysis was used to analyze the data. RESULTS: Patients described their ICU hospitalization as scary, traumatic, and lonely. Participants' feedback on hospitalization ranged from praise to criticism. Patients wanted more realistic and detailed prognostication about post-ICU recovery and more physical therapy after discharge. Patients strongly valued the mental health component of ICU-RC visits, which contrasted with the scant attention paid to mental health in other postdischarge health care settings. Their knowledge about post-ICU recovery and connectedness to a primary care provider varied. CONCLUSIONS: Examining patients' and caregivers' perceptions of ICU hospitalization and recovery highlights ICU-RC components that can be strengthened to support patient- and family-centered recovery. The ICU-RC staff should invite patients to share feedback about their ICU stay; give a timely, realistic prognosis for recovery; offer mental health consultations; provide physical therapy; and partner with patients and their caregivers to develop and deliver post-ICU care.