Implementation of frailty screening for older people living with HIV in Brighton, UK.

OBJECTIVES: To evaluate the implementation of frailty screening in people living with HIV (PLWH) in a large urban cohort of patients in Brighton, UK. METHODS: Focus group discussions with HIV professionals and PLWH interviews helped inform the design and implementation of the frailty screening pathway in the clinic. Data were collected from PLWH aged over 60 years attending their HIV annual health check from July 2021 to January 2023 (n = 590), who were screened for frailty by nurses using the FRAIL scale. We assessed the proportions of PLWH who screened as frail, prefrail or robust and compared patient characteristics across groups. All PLWH identified as frail were offered a comprehensive geriatric assessment delivered by a combined HIV geriatric clinic, and uptake was recorded. RESULTS: A total of 456/590 (77.3%) PLWH aged over 60 years were screened for frailty. Median age and time since HIV diagnosis (range) for those screened were 66 (60-99) years and 21 (0-32) years, respectively. In total, 56 (12.1%) of those screened were identified as frail, 118 (25.9%) as prefrail and 282 (61.8%) as robust. A total of 10/56 (18%) people identified as frail declined an appointment in the geriatric clinic. Compared with non-frail individuals, frail PLWH had been living with HIV for longer and had a greater number of comorbidities and comedications but were not chronologically older. CONCLUSIONS: Implementing frailty screening in PLWH over 60 years old is feasible in a large cohort of PLWH, as recommended by the European AIDS Clinical Society. More research is needed to determine if frailty screening can improve clinical outcomes of older PLWH and the use of the comprehensive geriatric assessment within HIV services.

Episodic disability questionnaire (EDQ) measurement properties among adults living with HIV in Canada, Ireland, United Kingdom, and United States.

BACKGROUND: The Episodic Disability Questionnaire (EDQ) is a generic 35-item patient-reported outcome measure of presence, severity and episodic nature of disability. We assessed the measurement properties of the Episodic Disability Questionnaire (EDQ) with adults living with HIV. METHODS: We conducted a measurement study with adults living with HIV in eight clinical settings in Canada, Ireland, United Kingdom, and United States. We electronically administered the EDQ followed by three reference measures (World Health Organization Disability Assessment Schedule; Patient Health Questionnaire; Social Support Scale) and a demographic questionnaire. We administered the EDQ only 1 week later. We assessed the internal consistency reliability (Cronbach's alpha; > 0.7 acceptable), and test-retest reliability (Intra Class Correlation Coefficient; > 0.7 acceptable). We estimated required change in EDQ domain scores to be 95% certain that a change was not due to measurement error (Minimum Detectable Change (MDC95%)). We evaluated construct validity by assessing 36 primary hypotheses of relationships between EDQ scores and scores on the reference measures (> 75% hypotheses confirmed indicated validity). RESULTS: Three hundred fifty nine participants completed the questionnaires at time point 1, of which 321 (89%) completed the EDQ approximately 1 week later. Cronbach's alpha for internal consistency ranged from 0.84 (social domain) to 0.91 (day domain) for the EDQ severity scale, and 0.72 (uncertainty domain) to 0.88 (day domain) for the EDQ presence scale, and 0.87 (physical, cognitive, mental-emotional domains) to 0.89 (uncertainty domain) for the EDQ episodic scale. ICCs for test-retest reliability ranged from 0.79 (physical domain) to 0.88 (day domain) for the EDQ severity scale and from 0.71 (uncertainty domain) to 0.85 (day domain) for the EDQ presence scale. Highest precision was demonstrated in the severity scale for each domain (MDC95% range: 19-25 out of 100), followed by the presence (MDC95% range: 37-54) and episodic scales (MDC95% range:44-76). Twenty-nine of 36 (81%) construct validity hypotheses were confirmed. CONCLUSIONS: The EDQ possesses internal consistency reliability, construct validity, and test-retest reliability, with limited precision when administered electronically with adults living with HIV across in clinical settings in four countries. Given the measurement properties, the EDQ can be used for group level comparisons for research and program evaluation in adults living with HIV.

Penetrating colored pencil injury with Clostridium bifermentans pre-septal cellulitis: case report, literature review, and treatment algorithm.

The incidence of penetrating orbital injuries from writing instruments continues to rise in the pediatric population. Such injuries can cause significant visual morbidity and have a lifelong psychosocial impact. While the description of graphite pencil-related orbital trauma management is well demonstrated with over 40 reported cases, a lack of consistent management protocol for colored pencil-related injuries. Here, we report an inadvertent penetrating orbital colored pencil injury with progressive mechanical ptosis and pre-septal cellulitis necessitating urgent orbitotomy, debridement, and washout to reduce inflammatory and infectious burden. The wooden body serves as a nidus for polymicrobial infection, and the unique composition of colored pencil cores may lead to inflammatory processes that require vigilant multidisciplinary surgical and medical management reflected in our literature review.

Frailty and frailty screening: A qualitative study to elicit perspectives of people living with HIV and their healthcare professionals.

OBJECTIVES: People living with HIV are an ageing population with an increasing prevalence of frailty. Management of frailty requires assessment, communication and information sharing with patients. However, evidence regarding the meaning of frailty for this population, and the acceptability of frailty screening, is limited. This study aimed to explore the perceptions of older people living with HIV and HIV professionals towards frailty and routine screening for frailty. METHODS: Data collection consisted of in-depth individual qualitative interviews with older people living with HIV and focus groups with HIV professionals purposively sampled from outpatient HIV clinics in London and Brighton, UK. Verbatim pseudonymised transcripts were analysed using reflexive thematic analysis supported by NVivo. RESULTS: A total of 45 people living with HIV were interviewed, and 12 HIV professionals participated in two focus groups. Frailty was described as a series of losses around mobility, social inclusion, independence and mental acuity, which could happen at any age. Regarding language, for people living with HIV, explicitly using the word frail was acceptable during screening when approached sensitively and alongside provision of information and support to slow the progression of frailty. However, HIV professionals described concerns about using the word frail for fear of causing distress or offence. CONCLUSION: Professionals described frailty in terms of functional deficits, whereas people living with HIV described a loss of personhood. Although there is a clear desire among people living with HIV to be informed of their frailty status, approaching conversations about frailty with understanding and compassion is vital. To gain the most from the screening, it is essential that frailty status is shared alongside a clear plan of actionable steps in their care.

People with HIV and healthcare workers views on screening for cognitive impairment in people with HIV: A qualitative study.

OBJECTIVES: People with HIV are an ageing population with an increased risk of cognitive impairment. Although cognitive impairment is dependent upon assessment, the acceptability of screening for cognitive impairment is unclear. This study aimed to explore the views of people with HIV and healthcare workers regarding routine screening for cognitive impairment. METHODS: In-depth individual qualitative interviews were conducted with purposively sampled people with HIV and focus groups of healthcare workers from a UK HIV service. Verbatim pseudonymized transcripts were analysed using reflexive thematic analysis supported by NVivo. RESULTS: Twenty people with HIV were interviewed and 12 healthcare workers participated in three focus groups. People with HIV were concerned about developing cognitive issues and were receptive to routine screening. Screening was seen as relevant and an important part of managing health in older age. Healthcare workers expressed concerns regarding the capacity of HIV services to implement routine screening and questioned the validity of screening measures used. People with HIV felt that screening and subsequent detection of cognitive impairment, if present, may help them to prepare for future issues and promote active management strategies and care pathways that would support cognitive health. People with HIV felt that screening should be brief and delivered by the HIV service and that they should be given a choice of administration method. Indications of cognitive impairment detected by a brief screening assessment should be discussed face to face and followed up with a comprehensive assessment. CONCLUSIONS: People with HIV are concerned about cognitive impairment and would welcome regular screening for this as part of the holistic care provided by the HIV team. Both people with HIV and healthcare workers would like more information on cognitive impairment, its screening and ways to support cognitive health.

Research priorities in HIV, aging and rehabilitation: building on a framework with the Canada-International HIV and Rehabilitation Research Collaborative.

BACKGROUND: In 2016, the Canada-International HIV and Rehabilitation Research Collaborative established a framework of research priorities in HIV, aging and rehabilitation. Our aim was to review and identify any new emerging priorities from the perspectives of people living with HIV, clinicians, researchers, and representatives from community organizations. METHODS: We conducted a multi-stakeholder international consultation with people living with HIV, researchers, clinicians and representatives of community-based organizations. Stakeholders convened for a one-day Forum in Manchester, United Kingdom (UK) to discuss research priorities via a web-based questionnaire and facilitated discussions. We analyzed data using conventional content analytical techniques and mapped emerging priorities onto the foundational framework. RESULTS: Thirty-five stakeholders from the UK(n = 29), Canada(n = 5) and Ireland(n = 1) attended the Forum, representing persons living with HIV or representatives from community-based organizations(n = 12;34%), researchers or academics(n = 10;28%), service providers(n = 6;17%), clinicians(n = 4;11%); and trainees(n = 4;11%). Five priorities mapped onto the Framework of Research Priorities across three content areas: A-Episodic Health and Disability Aging with HIV (disability, frailty, social participation), B-Rehabilitation Interventions for Healthy Aging across the Lifespan (role, implementation and impact of digital and web-based rehabilitation interventions) and C-Outcome Measurement in HIV and Aging (digital and web-based rehabilitation health technology to measure physical activity). Stakeholders indicated methodological considerations for implementing digital and web-based rehabilitation interventions into research and practice and the importance of knowledge transfer and exchange among the broader community. CONCLUSION: Results highlight the sustained importance of the Framework of Research Priorities and provide further depth and areas of inquiry related to digital and web-based rehabilitation interventions and technology aging with HIV.

Ventilation assisted feedback in out of hospital cardiac arrest.

Excessive ventilatory volumes and rates during cardiopulmonary resuscitation (CPR) can lead to adverse effects, such as elevated intrathoracic pressure and decreased coronary blood flow. The 2020 American Heart Association (AHA) guidelines acknowledge the value of real-time feedback devices in improving CPR performance. In this case series, three out-of-hospital cardiac arrest cases received ventilation feedback during prehospital resuscitation and the initial in-hospital care phase. In each case, a notable increase in ventilation rate and volume was observed following the transfer of care from emergency medical services to hospital staff. This deviation from established ventilation guidelines emphasizes the importance of monitoring and addressing ventilation strategy during the transition to hospital care. Existing evidence supports the importance of maintaining specific ventilation rates and tidal volumes during cardiac arrest to improve outcomes. We believe further research is essential to establish a definitive link between ventilation strategies and patient outcomes, ultimately enhancing resuscitation efforts and patient survival rates. Integrating real-time ventilation feedback devices both in and out of the hospital during cardiac arrest presents an opportunity for quality improvement and adherence to national standards.

Suprapubic catheter encasement by bladder stone.

Complications of suprapubic catheterization including acute urinary retention present often to the emergency department. Patients with chronic indwelling catheters are at increased risk of bladder calculi and recurrent infections, especially without appropriate follow up care. We describe a case of suprapubic catheter failure secondary to complete circumferential encrustation of the distal catheter tip by a bladder calculus. This case demonstrates the need for thorough evaluation of any case of catheter dysfunction and for careful consideration of bladder calculi in those patients at risk.

Video case review for quality improvement during cardiac arrest resuscitation in the emergency department.

BACKGROUND: Out-of-hospital cardiac arrests are a leading global cause of mortality. The American Heart Association (AHA) promotes several important strategies associated with improved cardiac arrest (CA) outcomes, including decreasing pulse check time and maintaining a chest compression fraction (CCF) > 0.80. Video review is a potential tool to improve skills and analyse deficiencies in various situations; however, its use in improving medical resuscitation remains poorly studied in the emergency department (ED). We implemented a quality improvement initiative, which utilised video review of CA resuscitations in an effort to improve compliance with such AHA quality metrics. METHODS: A cardiopulmonary resuscitation video review team of emergency medicine residents were assembled to analyse CA resuscitations in our urban academic ED. Videos were reviewed by two residents, one of whom was a senior resident (Postgraduate Year 3 or 4), and analysed using Spearman's rank correlation coefficient for numerous quality improvement metrics, including pulse check time, CCF, time to intravenous access and time to patient attached to monitor. RESULTS: We collected data on 94 CA resuscitations between July 2017 and June 2020. Average pulse check time was 13.09 (SD ± 5.97) seconds, and 38% of pulse checks were <10 seconds. After the implementation of the video review process, there was a significant decrease in average pulse check time (P = .01) and a significant increase in CCF (P = .01) throughout the study period. CONCLUSIONS: Our study suggests that the video review and feedback process was significantly associated with improvements in AHA quality metrics for resuscitation in CA amongst patients presented to the ED.

Ketamine for emergency sedation of agitated patients: A systematic review and meta-analysis.

Prior studies suggest that ketamine is effective for acute agitation in the emergency department (ED) and prehospital settings. This systematic review and meta-analysis aims to evaluate the rate of sedation and need for airway management in patients given ketamine for management of acute agitation. Methods: We performed a systematic review of publications describing the use of ketamine to control agitation in the ED and prehospital settings. Studies were included if they included agitated patients, used ketamine to control agitation, occurred in the ED and prehospital setting and measured sedation status or need for airway management. Following data abstraction, a meta-analysis was performed to synthesize the rate of effective sedation and the need for airway management. Result: 13 studies met the inclusion criteria. 10 studies were conducted in the prehospital setting and 3 in the ED setting. The overall proportion of subjects receiving airway management across all 13 studies was 20% (95% CI = 0.0489-1.6505). The estimate of the proportion of subjects that achieved sedation was 85% (95% CI = 0.71-0.93). After synthesizing data from the four studies that compared ketamine to controls, ketamine was associated with increased rates of sedation (RR, 1.95 [CI, 0.47-8.1]) and increased need for intubation (RR, 2.44 [CI, 0.75-7.91]). The differences were not significant by random effects model.

Effect of Rurality in Head and Neck Cancer: A Scoping Review.

OBJECTIVES: This scoping review sought to evaluate the current literature regarding the following outcomes in relation to rurality: stage at diagnosis, clinical characteristics, treatment characteristics, and survival outcomes of head and neck cancer (HNC). DATA SOURCES: A literature search was performed using PubMed (MEDLINE), Science Direct, EMBASE, SCOPUS, and Web of Science databases. REVIEW METHODS: A 20-year study cutoff from the initial search was used to increase the comparability of the studies regarding population and standards of clinical care. These searches were designed to capture all primary studies reporting HNC incidence, presenting characteristics, treatments, and treatment outcomes. Two reviewers independently screened abstracts, selected articles for exclusion, extracted data, and appraised studies. Critical appraisal was done according to the Joanna Briggs Institute Quality Assessment Tool for Cohort Studies. FINDINGS: Twenty eligible original articles were included. Stage at diagnosis, clinical characteristics, treatment characteristics, and survival outcomes were measured. Our review indicates that although this relationship is unclear, there may be variations in treatment choice for laryngeal cancer based on geographic location and rural residency status. The studies assessing HNC outcomes related to stage at diagnosis, clinical characteristics, treatment characteristics, and overall survival demonstrated conflicting findings, indicating a need for further research examining HNC outcomes with a focus on rurality as the main exposure. CONCLUSIONS: The relationship between HNC and rural-urban status remains unclear. More studies are needed, along with a consistent metric for measuring rurality and recruitment of comparable populations from both rural and urban areas. Laryngoscope, 2024.

The Social Construction of Aging Among a Clinic-Based Population and Their Healthcare Workers in Zambia.

Objectives: We sought to understand the social construction of aging in a clinic-based population, with and without HIV, to address gaps in care for older individuals living with HIV in Zambia. Methods: Our exploratory qualitative study included 36 in-depth interviews with clinic clients and four focus group discussions with 36 professional and lay healthcare workers providing services to the clients. We identified themes based on social construction theory. Results: At the individual level, aging was multidimensional, perceived both as an achievement in the HIV era and as a period of cognitive, physical, and economic decline. In social interactions, older individuals were often stereotyped and treated as helpless, poor, and "witches." Those living with HIV faced the additional stigma of being labeled as promiscuous. Some of the participants living without HIV refused to take daily medication for non-communicable diseases to avoid being mistaken for taking antiretroviral therapy for HIV. Older individuals wanted quality healthcare and family support to address the intersectional stigma of aging, poverty, and chronic illness. Conclusion: Multifaceted interventions are required to combat age-related prejudice, intersectional stigma, and discriminatory practices, particularly for people living with HIV.

A clinical approach to an unidentified aerosolized bioterrorism agent: a narrative review for emergency providers.

The current heightened international political climate is accompanied by increased risk of chemical or biological agent weaponization. Historical accounts of biochemical warfare are extensive, and considering the recent use of such agents for targeted attacks, clinicians need to recognize and manage these cases. However, agent properties such as the color, odor, ability to be aerosolized, and long incubation period can introduce difficulties in the diagnostic and management approach. We searched PubMed and Scopus for a colorless, odorless, aerosolized substance with an incubation period of at least 4 hours. Data from articles were summarized and reported by agent. Based on data from the available literature, we included agents such as nerve agents, ricin, botulinum toxin, anthrax, tularemia, and psittacosis in this review. We also highlighted potential chemical and biological agents that could be weaponized and the optimal strategies for the diagnosis and treatment of patients exposed to an unknown aerosolized biological or chemical bioterrorism agent.

A National Survey of Hospital Cyber Attack Emergency Operation Preparedness.

OBJECTIVE: Cyberattacks on healthcare systems are increasing in frequency and severity. Hospitals need to integrate cybersecurity preparedness into their emergency operations planning and response to mitigate adverse outcomes during increasingly likely cyber events. No data currently exist regarding the level of preparedness of United States hospital systems for cybersecurity attacks. We surveyed hospital emergency managers to assess cybersecurity preparedness for these events. METHODS: Fifty-seven emergency managers representing hospitals across the United States participated in an online Qualtrics survey regarding current preparedness and response procedures for cybersecurity hazards. RESULTS: Survey responses between April 2019 and May 2021 demonstrated that a majority of hospital systems surveyed included cybersecurity disasters in their HVA (82.4%; 47/57), and most ranked it as 1 of their top 5 priorities (57.4%; 27/47). However, over half denied specifically mentioning cybersecurity in their Emergency Operations Plans (EOPs; 52.6%; 30/57). Fourteen of the 57 hospital systems (24.5%) endorsed previously activating an emergency response for a cybersecurity incident unrelated to information technology (IT) failure. CONCLUSIONS: The survey results suggest that American hospitals are currently underprepared for cybersecurity disasters. We emphasize the importance of prioritizing cybersecurity in Hazard Vulnerability Analyses (HVAs) and implementing specific EOP annexes for cybersecurity emergencies.

A state-wide implementation of a whole of hospital sepsis pathway with a mortality based cost-effectiveness analysis from a healthcare sector perspective.

With global estimates of 15 million cases of sepsis annually, together with a 24% in-hospital mortality rate, this condition comes at a high cost to both the patient and to the health services delivering care. This translational research determined the cost-effectiveness of state-wide implementation of a whole of hospital Sepsis Pathway in reducing mortality and/or hospital admission costs from a healthcare sector perspective, and report the cost of implementation over 12-months. A non-randomised stepped wedge cluster implementation study design was used to implement an existing Sepsis Pathway ("Think sepsis. Act fast") across 10 of Victoria's public health services, comprising 23 hospitals, which provide hospital care to 63% of the State's population, or 15% of the Australian population. The pathway utilised a nurse led model with early warning and severity criteria, and actions to be initiated within 60 minutes of sepsis recognition. Pathway elements included oxygen administration; blood cultures (x2); venous blood lactate; fluid resuscitation; intravenous antibiotics, and increased monitoring. At baseline there were 876 participants (392 female (44.7%), mean 68.4 years); and during the intervention, there were 1,476 participants (684 female (46.3%), mean 66.8 years). Mortality significantly reduced from 11.4% (100/876) at baseline to 5.8% (85/1,476) during implementation (p>0.001). Respectively, at baseline and intervention the average length of stay was 9.1 (SD 10.3) and 6.2 (SD 7.9) days, and cost was $AUD22,107 (SD $26,937) and $14,203 (SD $17,611) per patient, with a significant 2.9 day reduction in length of stay (-2.9; 95%CI -3.7 to -2.2, p<0.01) and $7,904 reduction in cost (-$7,904; 95%CI -$9,707 to -$6,100, p<0.01). The Sepsis Pathway was a dominant cost-effective intervention due to reduced cost and reduced mortality. Cost of implementation was $1,845,230. In conclusion, a well-resourced state-wide Sepsis Pathway implementation initiative can save lives and dramatically reduce the health service cost per admission.

Frailty status and associated factors among older PLHIV in Southern Ethiopia.

BACKGROUND: Studies addressing frailty are limited in the global south, including Ethiopia. We estimated the prevalence of frailty and associated factors among older people living with HIV (PLHIV) attending a large Comprehensive Specialized Hospital in southern Ethiopia. METHODS: A systematic sample of 187 PLHIV and 187 HIV-negative controls > 50 years old were recruited between October 1 and November 30, 2021. Data on socio-demographic, behavioural and clinical characteristics were collected using a structured questionnaire. Frailty assessments were completed using the brief frailty instrument (B-FIT-2), which consists of 6 components. Scoring 5-6 points was frail, 2-4 points were pre-frail and below 2 was considered as non-frail. Logistic regression model was used to measure association between variables. RESULTS: Median (IQR) age was 53 (50, 80) for PLWH and 59 (55-66) for controls. Prevalence of frailty was 9.1% for PLHIV Versus 5.9% for controls. A significant proportion of PLHIV was pre-frail; 141 (75.4%) compared to controls 110 (58.8%). Pre-frailty status was associated with HIV diagnosis (adjusted odds ratio (aOR) 4.2; 95% CI 1.8-9.9), low age (aOR 0.3; 95% CI 0.1-0.6), lower educational attainment (aOR 2.2; 95% CI 1.0-4.9), being farmer (aOR 3.2; 95% CI 1.0-10.2) and having high or low body mass index (BMI) (aOR 11.3; 95% CI 4.0-25.8). HIV diagnosis (aOR 9.7; 95% CI 1.6-56.8), age (aOR 0.2; 95% CI 0.1-0.7), lower educational attainment (aOR 5.2; 95% CI 1.5-18.2), single status (aOR 4.2; 95% CI 1.3-13.6), farmer (aOR 19.5; 95% CI 3.5-109.1) and high or low BMI (aOR 47.3; 95% CI 13.8-161.9) predicted frailty. CONCLUSION: A high proportion of frailty and pre-frailty was observed in a cohort of older PLHIV attending care in Southern Ethiopia. Future research should focus on interventions targeting factors associated with frailty.

Silver Clinic: protocol for a feasibility randomised controlled trial of comprehensive geriatric assessment for people living with HIV and frailty.

INTRODUCTION: Many people ageing with HIV are also living with multiple comorbidities and geriatric syndromes including frailty and cognitive deterioration. These complex needs can be challenging to meet within existing HIV care services. This study investigates the acceptability and feasibility of screening for frailty and of using a comprehensive geriatric assessment approach, delivered via the Silver Clinic, to support people living with HIV affected by frailty. METHODS AND ANALYSIS: Mixed-methods, parallel-group, randomised, controlled feasibility trial aiming to recruit 84 people living with HIV≥50, identified as frail. Participants will be recruited from the HIV unit at the Royal Sussex County Hospital, University Hospitals Sussex NHS Foundation Trust, Brighton, UK. Participants will be randomised 1:1 to receive usual HIV care or the Silver Clinic intervention, which uses a comprehensive geriatric assessment approach. Psychosocial, physical and service use outcomes will be measured at baseline, 26 weeks and 52 weeks. Qualitative interviews will be conducted with a subset of participants from both arms. Primary outcome measures include recruitment and retention rates and completion of clinical outcome measures. These will be used in conjunction with a priori progression criteria and the qualitative data (acceptability of trial procedures and intervention) to determine the feasibility and design of a definitive trial. ETHICS AND DISSEMINATION: This study has been approved by East Midlands-Leicester Central Research Ethics Committee (reference 21/EM/0200). All participants will receive written information about the study and be required to provide informed consent. Results will be disseminated via peer-reviewed journals, conferences and community engagement. TRIAL REGISTRATION NUMBER: ISRCTN14646435.

Conceptualising the episodic nature of disability among adults living with Long COVID: a qualitative study.

INTRODUCTION: Our aim was to describe episodic nature of disability among adults living with Long COVID. METHODS: We conducted a community-engaged qualitative descriptive study involving online semistructured interviews and participant visual illustrations. We recruited participants via collaborator community organisations in Canada, Ireland, UK and USA.We recruited adults who self-identified as living with Long COVID with diversity in age, gender, race/ethnicity, sexual orientation and duration since initial COVID infection between December 2021 and May 2022. We used a semistructured interview guide to explore experiences of disability living with Long COVID, specifically health-related challenges and how they were experienced over time. We asked participants to draw their health trajectory and conducted a group-based content analysis. RESULTS: Among the 40 participants, the median age was 39 years (IQR: 32-49); majority were women (63%), white (73%), heterosexual (75%) and living with Long COVID for ≥1 year (83%). Participants described their disability experiences as episodic in nature, characterised by fluctuations in presence and severity of health-related challenges (disability) that may occur both within a day and over the long-term living with Long COVID. They described living with 'ups and downs', 'flare-ups' and 'peaks' followed by 'crashes', 'troughs' and 'valleys', likened to a 'yo-yo', 'rolling hills' and 'rollercoaster ride' with 'relapsing/remitting', 'waxing/waning', 'fluctuations' in health. Drawn illustrations demonstrated variety of trajectories across health dimensions, some more episodic than others. Uncertainty intersected with the episodic nature of disability, characterised as unpredictability of episodes, their length, severity and triggers, and process of long-term trajectory, which had implications on broader health. CONCLUSION: Among this sample of adults living with Long COVID, experiences of disability were described as episodic, characterised by fluctuating health challenges, which may be unpredictable in nature. Results can help to better understand experiences of disability among adults living with Long COVID to inform healthcare and rehabilitation.