Importance of reconnection with ICU survivors to ICU recovery program clinicians

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Optimizing Critical Illness Recovery: Perspectives and Solutions from the Caregivers of ICU Survivors

Objectives: To understand the unmet needs of caregivers of ICU survivors, how they accessed support post ICU, and the key components of beneficial ICU recovery support systems as identified from a caregiver perspective. Design: International, qualitative study. Subjects: We conducted 20 semistructured interviews with a diverse group of caregivers in the United States, the United Kingdom, and Australia, 11 of whom had interacted with an ICU recovery program. Setting: Seven hospitals in the United States, United Kingdom, and Australia. Interventions: None. Measurements and Main Results: Content analysis was used to explore prevalent themes related to unmet needs, as well as perceived strategies to improve ICU outcomes. Post-ICU care was perceived to be generally inadequate. Desired caregiver support fell into two main categories: practical support and emotional support. Successful care delivery initiatives included structured programs, such as post discharge telephone calls, home health programs, post-ICU clinics, and peer support groups, and standing information resources, such as written educational materials and online resources. Conclusions: This qualitative, multicenter, international study of caregivers of critical illness survivors identified consistently unmet needs, means by which caregivers accessed support post ICU, and several care mechanisms identified by caregivers as supporting optimal ICU recovery

Modified Delphi procedure-based expert consensus on endpoints for an international disease registry for Metachromatic Leukodystrophy:The European Metachromatic Leukodystrophy initiative (MLDi)

BACKGROUND: Metachromatic Leukodystrophy (MLD) is a rare lysosomal disorder. Patients suffer from relentless neurological deterioration leading to premature death. Recently, new treatment modalities, including gene therapy and enzyme replacement therapy, have been developed. Those advances increase the need for high-quality research infrastructure to adequately compare treatments, execute post-marketing surveillance, and perform health technology assessments (HTA). To facilitate this, a group of MLD experts started the MLD initiative (MLDi) and initiated an academia-led European MLD registry: the MLDi. An expert-based consensus procedure, namely a modified Delphi procedure, was used to determine the data elements required to answer academic, regulatory, and HTA research questions. RESULTS: Three distinct sets of data elements were defined by the 13-member expert panel. The minimal set (n = 13) contained demographics and basic disease characteristics. The core set (n = 55) included functional status scores in terms of motor, manual, speech and eating abilities, and causal and supportive treatment characteristics. Health-related quality of life scores were included that were also deemed necessary for HTA. The optional set (n = 31) contained additional clinical aspects, such as findings at neurological examination, detailed motor function, presence of peripheral neuropathy, gall bladder involvement and micturition. CONCLUSION: Using a modified Delphi procedure with physicians from the main expert centers, consensus was reached on a core set of data that can be collected retrospectively and prospectively. With this consensus-based approach, an important step towards harmonization was made. This unique dataset will support knowledge about the disease and facilitate regulatory requirements related to the launch of new treatments. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13023-022-02189-w

An international study exploring the experience of survivors of critical illness as volunteers within ICU recovery services

Objectives: Many clinicians have implemented follow-up and aftercare to support patients following ICU. Some of this care is supported and facilitated by peer volunteers. There is limited contemporary work that has explicitly explored volunteer roles within ICU recovery services or the experience of volunteers undertaking these roles. We sought to explore the experience of survivors of critical illness, as volunteers, involved in ICU recovery services and understand their motivation for undertaking these roles. Design: Qualitative exploration using in-depth semistructured interviews. The study design used an inductive content analysis process. We also documented the roles that were adopted by volunteers in each site involved in the study. Setting: Patients and caregivers were sampled from seven sites across three continents. Patients and Subjects: Patients and caregivers who had adopted peer-volunteering roles were undertaken. Interventions: None. Measurements and Main Results: Twelve patient and caregiver peer volunteers were interviewed. Four key themes were identified. These themes related to the experience of volunteers within ICU recovery services and their motivation for undertaking these roles: 1) self-belief and acceptance, 2) developing peer support, 3) social roles and a sense of purpose, and 4) giving back. Overwhelmingly, participants were positive about the role of the volunteer in the critical care setting. Conclusions: Peer volunteers undertake a variety of roles in ICU recovery services and during recovery more generally. These roles appear to be of direct benefit to those in these roles. Future research is needed to develop these roles and fully understand the potential impact on the service, including the impact on other patients

Key mechanisms by which post-ICU activities can improve in-ICU care: results of the international THRIVE collaboratives

Objective: To identify the key mechanisms that clinicians perceive improve care in the intensive care unit (ICU), as a result of their involvement in post-ICU programs. Methods: Qualitative inquiry via focus groups and interviews with members of the Society of Critical Care Medicine’s THRIVE collaborative sites (follow-up clinics and peer support). Framework analysis was used to synthesize and interpret the data. Results: Five key mechanisms were identified as drivers of improvement back into the ICU: (1) identifying otherwise unseen targets for ICU quality improvement or education programs—new ideas for quality improvement were generated and greater attention paid to detail in clinical care. (2) Creating a new role for survivors in the ICU—former patients and family members adopted an advocacy or peer volunteer role. (3) Inviting critical care providers to the post-ICU program to educate, sensitize, and motivate them—clinician peers and trainees were invited to attend as a helpful learning strategy to gain insights into post-ICU care requirements. (4) Changing clinician’s own understanding of patient experience—there appeared to be a direct individual benefit from working in post-ICU programs. (5) Improving morale and meaningfulness of ICU work—this was achieved by closing the feedback loop to ICU clinicians regarding patient and family outcomes. Conclusions: The follow-up of patients and families in post-ICU care settings is perceived to improve care within the ICU via five key mechanisms. Further research is required in this novel area

Enablers and Barriers to Implementing ICU Follow-Up Clinics and Peer Support Groups Following Critical Illness: The Thrive Collaboratives

OBJECTIVES: Data are lacking regarding implementation of novel strategies such as follow-up clinics and peer support groups, to reduce the burden of postintensive care syndrome. We sought to discover enablers that helped hospital-based clinicians establish post-ICU clinics and peer support programs, and identify barriers that challenged them. DESIGN: Qualitative inquiry. The Consolidated Framework for Implementation Research was used to organize and analyze data. SETTING: Two learning collaboratives (ICU follow-up clinics and peer support groups), representing 21 sites, across three continents. SUBJECTS: Clinicians from 21 sites. MEASUREMENT AND MAIN RESULTS: Ten enablers and nine barriers to implementation of "ICU follow-up clinics" were described. A key enabler to generate support for clinics was providing insight into the human experience of survivorship, to obtain interest from hospital administrators. Significant barriers included patient and family lack of access to clinics and clinic funding. Nine enablers and five barriers to the implementation of "peer support groups" were identified. Key enablers included developing infrastructure to support successful operationalization of this complex intervention, flexibility about when peer support should be offered, belonging to the international learning collaborative. Significant barriers related to limited attendance by patients and families due to challenges in creating awareness, and uncertainty about who might be appropriate to attend and target in advertising. CONCLUSIONS: Several enablers and barriers to implementing ICU follow-up clinics and peer support groups should be taken into account and leveraged to improve ICU recovery. Among the most important enablers are motivated clinician leaders who persist to find a path forward despite obstacles

Functional outcomes following critical illness: epidemiology, current management strategies and the future priorities

Purpose of the review: Intensive care unit (ICU) survivorship has gained significant attention over the course of the COVID-19 pandemic. In this review, we summarize the contemporary literature in relation to the epidemiology and management of post-ICU problems. Recent findings: Survivors of critical illness can have complex physical, social, emotional and cognitive needs in the months following hospital discharge. Emerging evidence has shown that pre-ICU characteristics such as educational attainment, alongside in-ICU factors such as delirium, may contribute to worsening outcomes. Evidence regarding the impact of post-ICU recovery services is evolving, but models such as post-ICU clinics and peer support programs are gaining rapid momentum. Summary: Future research should focus on modifiable risk factors and how identification and treatment of these can improve outcomes. Furthermore, rigorous evaluation of postacute critical care recovery services is necessary

Evolution in care delivery within critical illness recovery programs during the COVID-19 pandemic: A qualitative study

Rationale: There are limited data on the impact of the 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 semi-structured interviews and were analyzed using thematic analysis. Key themes were organized in a working analytical framework. Results: Twenty-nine participants from fifteen international sites participated in the study. Participants identified three patient-level key themes which 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 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 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. Conclusion: Our study demonstrated 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 which highlight the need for interventions focused on the integration of social and clinic services for critical care survivors

Multidisciplinary ICU recovery clinic visits: a qualitative analysis of patient-provider dialogues

Background: Research confirms the heterogeneous nature of patient challenges during recovery from the Intensive Care Unit (ICU) and supports the need for modifying care experiences, but there are little data guiding 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) attending a telemedicine ICU-RC visit following critical illness due to septic shock or acute respiratory distress syndrome. 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 which may be best addressed 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. Clinical Trial Registration Number: NCT0392653