ABSTRACT
To understand the impact of the COVID-19 pandemic on participation for persons with traumatic brain injury (pwTBI). Inductive qualitative analysis was performed to identify themes from semi-structured interviews or focus groups of pwTBI or their family members. Community. Study included 32 structured interviews and 4 focus groups with 41 participants (n=34 pwTBI and n=7 family members). Participants with TBI were eligible if they were >=18 at the time of initial TBI, presented with mild BI, able to speak and understand English, able to access the video conferencing platform, and were community-dwelling. Family members were eligible if they were >=18, related to an individual who was >=18 at the time of initial TBI, currently living in a community setting, speak and understand English, and able to access the video conferencing platform. N/A. Experience of participation during the COVID-19 pandemic. Several themes emerged relating to participation during the COVID-19 pandemic for pwTBI including: 1) transitioning remote, 2) normalization of 'stay at home' lifestyle, 3) mental health implications, and 4) impact of pandemic mandates on participation. Within these themes, many respondents identified challenges such as isolation, depression, and fear of infection;however, respondents also identified positive experiences such as feeling that participation challenges were no longer restricted to those with TBI or other disabilities, new opportunities for socializing, and more remote job opportunities that eliminate the need for transportation and ability to perform in a distracting environment. The experiences of participation for pwTBI during the COVID-19 pandemic had many similarities to the experiences of the general population;however, these findings suggest that pwTBI also have distinct positive experiences. There may be an element of resiliency in social engagement that individuals develop post TBI that warrants further investigation as society continues to transition to pre-pandemic patterns. None.
ABSTRACT
To understand the impact of the COVID-19 pandemic on participation for persons with traumatic brain injury (pwTBI). Inductive qualitative analysis was performed to identify themes from semi-structured interviews or focus groups of pwTBI or their family members. Community. Study included 32 structured interviews and 4 focus groups with 41 participants (n=34 pwTBI and n=7 family members). Participants with TBI were eligible if they were >=18 at the time of initial TBI, presented with mild BI, able to speak and understand English, able to access the video conferencing platform, and were community-dwelling. Family members were eligible if they were >=18, related to an individual who was >=18 at the time of initial TBI, currently living in a community setting, speak and understand English, and able to access the video conferencing platform. N/A. Experience of participation during the COVID-19 pandemic. Several themes emerged relating to participation during the COVID-19 pandemic for pwTBI including: 1) transitioning remote, 2) normalization of 'stay at home' lifestyle, 3) mental health implications, and 4) impact of pandemic mandates on participation. Within these themes, many respondents identified challenges such as isolation, depression, and fear of infection;however, respondents also identified positive experiences such as feeling that participation challenges were no longer restricted to those with TBI or other disabilities, new opportunities for socializing, and more remote job opportunities that eliminate the need for transportation and ability to perform in a distracting environment. The experiences of participation for pwTBI during the COVID-19 pandemic had many similarities to the experiences of the general population;however, these findings suggest that pwTBI also have distinct positive experiences. There may be an element of resiliency in social engagement that individuals develop post TBI that warrants further investigation as society continues to transition to pre-pandemic patterns. None.
ABSTRACT
Research Objectives To capture symptom experiences of persons living with ME/CFS to increase clinicians’ understanding of this complex illness. Design Case Series. Setting Multi-institutional collaboration. Participants A convenience sample of 12 persons with mild (n=16.7%), moderate (n=58.3%), and severe (n=25.0%) ME/CFS. Participant age: mean = 55.4 (SD = 9.7), range = 39-71. Ten participants identified as female, one as male, and one as transgender. Participants self-identified as Black or African American (n=16.7%), Asian (n=8.3%), White (n=75.0%), and Hispanic/Latinx (n=8.3%). Interventions None. Main Outcome Measures Not applicable. Results Language to describe symptoms, collected from semi-structured interviews, was categorized into domains recognized by the National Academy of Medicine [2]: post-exertional malaise (PEM), fatigue, cognitive impairment, unrefreshing sleep, pain, orthostatic intolerance/dysautonomia. Content analysis revealed a lexicon used by persons with ME/CFS to describe symptoms. Examples include “brain fog” (n=7/12) to depict cognitive impairment;“energy envelope” (n= 4/12) or “battery” (n=2/12) to explain the consequences of exceeding physical or mental activity thresholds causing PEM, the hallmark symptom of ME/CFS;“tired yet wired” (n=2/12) to describe unrefreshing sleep;and “dizzy” (n=6/12), “woozy” (n=1/12), and “swimmy” (n=1/12) to characterize orthostatic intolerance. Findings demonstrate similar use of terms and phrases to describe symptoms and experiences. Conclusions ME/CFS is a poorly understood, disabling illness. This study builds on prior work to define ME/CFS by analyzing lived experiences of those with this condition [3,4,5,6]. Awareness of language used by persons with ME/CFS to describe symptomatology may facilitate patient-clinician interactions and enable clinicians to better manage patient symptoms. ME/CFS is a diagnosis of exclusion and persons with ME/CFS often receive different diagnoses, perhaps due to complexity of symptoms, language used to describe them, or a general lack of understanding the illness. Delayed or misdiagnosis may result in triggering PEM and worsening symptoms. Further comprehension of language utilized by patients may help rehabilitation clinicians working with patients avoid PEM due to unnecessary overexertion. These findings may also be explored for persons with Long COVID due to common, overlapping symptoms. Author(s) Disclosures Nothing to disclose.
ABSTRACT
Little is known regarding after-effects of Long-COVID-19 (LC), while ME/CFS has been extensively researched. We performed a rigorous scoping review to inform a better definition of symptomatology of LC and cross-cutting similarities with ME/CFS. Our objective was to review the National Institutes of Health (NIH) ME/CFS Common Data Elements (CDEs), identify Patient Reported Outcome Measures (PROMs) and link items to the World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) codes to inform efforts to define LC. NIH ME/CFS CDEs (Jan. 2020), Google Scholar, PubMed - search terms: Long COVID and ME/CFS. A review of 119 NIH ME/CFS CDEs applied the following inclusion criteria: 1) PROM based;2) assess symptomatology;3) specific to adults 18 years and over;4) no visual or pictographic scales. Of the 119 NIH ME/CFS CDEs, 38 met review criteria;items were entered into an Excel spreadsheet. Five researchers independently coded items using ICF linking rules and resolved discrepancies using a consensus-based process. Six articles specifically compared LC and ME/CFS for symptom overlap. Similarities between ME/CFS and Long COVID symptoms include: fatigue, post exertional malaise (PEM), cognitive symptoms, sleep dysfunction, pain, noise and light hypersensitivity, orthostatic intolerance, cardiac, gastrointestinal and immune pathologies. The 944 items from 38 PROM CDEs were coded based on common ME/CFS and LC symptoms. The percent of items linked to one or more ICF categories (1288 codes) was as follows: Body Function (b codes) 73%: Fatigability, N=252 (20%);Cognitive functions, N=234 (18%);Sleep functions, N=139, 11%;and Pain, N=119, (9%). Activity and Participation (d codes), N=332, (26%). Environment (e codes), N=11, 0.9%. The ICF provides a common language to assess ME/CFS and LC cross-cutting symptoms and their impact on body function, activity and participation. This review of ME/CFS CDE's can help identify common symptoms, such as PEM, and encourage appropriate symptom management to prevent cycles of overexertion and relapse for those with LC. The authors have no conflicts of interest to declare.