Osteogenesis imperfecta (OI) is the most common inherited cause of bone fragility (approximately 1 in 16 000). People with OI suffer bone fragility causing fractures, pain and deformity; sarcopenia causing fatigue and poor endurance; aortic root dilatation and hearing loss. No drug currently has market authorisation to treat OI in Europe. Current standard-of-care is multidisciplinary, with pharmacological interventions—primarily bisphosphonates—directed at increasing bone mass; however, such interventions are of equivocal efficacy. The structural damage that can accumulate as a result of repeated fractures over time may not be reversible. The lack of a treatment with clearly defined efficacy in terms of reducing fracture frequency or the sarcopenia, that is increasingly recognised in this condition, leads to the consideration of alternatives based on what is known about the molecular pathophysiology of the condition. For reasons that are currently unclear, transforming growth factor beta (TGFβ) pathway signalling is increased in OI, and both studies in mouse models and more recently also in humans suggest that reducing TGFβ pathway signalling could be of benefit in OI. This demonstrator project tests the hypothesis that losartan, an antihypertensive agent known to reduce circulating TGFβ, will reduce bone turnover and bone loss and have a positive effect on muscle function and quality of life in adults and older adolescents with OI.
This is a phase 2/pilot, open-label, dose-escalating study. This study aims to identify the effective dose for losartan in this population to inform the design of a pivotal phase III study. The study aims to recruit 30 adolescents and adults aged 16 years and above with OI across secondary care study sites in the UK and Italy. Participants will be recruited from the patient populations attending for treatment of OI at the participating hospital sites or referred by clinicians at the Participant Identification Centres (PIC sites). Participants will be randomised to one of three ‘final doses’—25, 50 or 75 mg losartan once daily. All participants will start on 25 mg once daily. Those assigned to higher ‘final doses’ will increase in 25 mg once daily increments on day 8 and day 15 following safety assessments. The primary outcome measures are to establish the effective dose of losartan in OI patients, based on maximal reduction in the bone resorption marker carboxy-terminal crosslink of type I collagen telopeptide (CTX) over the 24-week period of the study.
Secondary outcome measures are to determine the changes in proxy efficacy outcomes for bone (turnover, mass, architecture and strength) using blood tests, high-resolution peripheral quantitative CT (HRpQCT), dual-energy X-ray absorptiometry (DXA) and muscle (strength) using the ‘Timed Up and Go’ test. In addition, the changes in quality of life, including pain and fatigue, will be evaluated by using a disease-specific tool (OI-QOL) and a validated generic tool (EQ-5D-5L-VAS).
In the UK, the study protocol and amendments have been approved by the London Bridge Research Ethics Committee (REC reference: 23/LO/015) and by the Medicines and Healthcare products Regulatory Agency (MHRA). In Italy, the study protocol and amendments have been approved by the Italian and European ethics and regulatory authorities (Clinical Trials Information System European Union (CTIS EU) portal according to EU Regulation 536/2014). Final version of study protocol: Version 3.2, 05.03.2025. Final results will be disseminated in peer-reviewed journals through local OI, orthopaedic and other relevant clinical networks and at national and international meetings. Sheffield Children’s National Health Service Foundation Trust (UK) and Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) Istituto Ortopedico Rizzoli (Italy) are the joint study sponsors.
ISRCTN (ISRCTN13317811).
Forming secure attachment relationships provides children with the best possible start to life. Children from families with high psychosocial vulnerability and complex mental health needs (eg, caregivers with lived experience of trauma, experiencing mental illness or substance abuse, current or past domestic violence, and/or current or a history of child protection issues) are at the greatest risk of experiencing attachment disturbances. Nurturing Connections is a new early intervention service launched by the New South Wales State Ministry of Health targeting both caregiver adversity and the caregiver-child attachment relationships in families with high psychosocial vulnerability and complex mental health needs. This paper outlines the evaluation protocol of the Nurturing Connections Programme.
A mixed-methods design will be used to undertake an implementation and outcomes evaluation. The study will draw on both qualitative and quantitative data, including routinely collected service data, surveys, participant observations, and semi-structured interview and yarning circle data. Appropriate descriptive and inferential techniques will be used to analyse quantitative data while thematic analysis will be drawn on to analyse qualitative data.
This research was approved by the South Eastern Sydney Local Health District Research Ethics Committee (2024/ETH01715). The Mid North Coast Local Health District also received ethics approval from the Aboriginal Health and Medical Research Council of New South Wales (2380/25). Evaluation findings will be shared via published manuscripts, conference presentations, as well as a final report to funding bodies.
by Georgia Black, Reena Besa, Daniel Blumberger, Heather Brooks, Graham Collingridge, John Georgiou, Evelyn K. Lambe, Clement Ma, Bernadette Mdawar, Tarek K. Rajji, Sanjeev Sockalingam, Cara Sullivan, Quincy Vaz, Zhengbang Yao, Branka Agic
IntroductionIntegrated knowledge translation (iKT) is a collaborative research approach that emphasizes the meaningful and active participation of knowledge users throughout the research process. Evidence suggests that integrated knowledge translation has the potential to increase the relevance, applicability, and use of research findings. This approach has been increasingly utilized in health research in recent years. However, the extent to which it has been applied in preclinical research and its effectiveness are unknown. To address this gap, we will conduct a scoping review to map the current use, potential benefits, and challenges of iKT in preclinical research.
MethodsGuided by a modified Arksey and O’Malley’s scoping review framework, we will systematically search reference lists and key research databases including Medline, Embase, PsycINFO, Cochrane CENTRAL, Cochrane Database of Systematic Reviews, and Web of Science. Peer-reviewed articles written or translated in English that focus on iKT or approaches that align with iKT within the context of preclinical research will be included. This review will be conducted as part of the Improving Neuroplasticity through Spaced Prefrontal intermittent-Theta-Beta-Stimulation REfinement in Depression (INSPiRE-D) project, which features preclinical research from mouse models to human work (Grant number CAMH File No.22-060). The project’s multidisciplinary team and knowledge user advisory committee will be consulted at key points throughout the scoping review process. A person with lived experience co-chairs the project advisory committee, co-authored this manuscript, and will be routinely included in the decision-making process of the scoping review.
by Rubin Pooni, Silva Arslanian, Heather Edgell, Hala Tamim, SoJung Lee, Jennifer L. Kuk
ObjectiveAttenuated heart rate recovery (HRR) immediately after exercise is an independent predictor of cardiovascular disease and mortality in adults. We examined the effects of aerobic exercise (AE), resistance exercise (RE), and combined AE and RE on HRR, and the relationship of HRR with body composition and metabolic risk factors in adolescents with overweight or obesity.
Research design and methodsWe included 147 adolescents (BMI ≥ 85th percentile, 12–18 years) who participated in exercise intervention studies (3–6 months), and had a complete data set including VO2peak, body composition by dual-energy X-ray absorptiometry, and cardiometabolic risk factors before and after the interventions. HRR was calculated as the difference between peak HR during the maximal treadmill test and HR at 1-, 2-, 3-, 4-, and 5-min after the cessation of the test.
ResultsAfter interventions, a faster HRR at 2–5 min was observed following AE (17.3–25.6% change, P P P P P 2peak. Changes in HRR were not associated with the changes in % body fat or metabolic risk factors.
ConclusionAE training is more beneficial than RE or combined AE and RE training for improving HRR in adolescents with overweight or obesity.
Despite extensive research on doctoral education, reliable tools to measure how writers' development relates to participation in social interventions such as writing groups are lacking. To address this, we conducted a study to create and evaluate a measurement tool for assessing the impact of writing group interventions on writers' development.
This methodology paper reports on the design, content validity, and evaluation of a new survey tool: the Doctoral and Academic Writing in Nursing, Midwifery, and Allied Health Professional writing questionnaire (DAWNMAHP).
We created a pool of 39 items based on empirical articles from SCOPUS, ERIC, BEI, ZETOC, CINAHL, EBHOST, and PsycINFO, our experience, and stakeholder consultations. After a content validity assessment by writing experts, we revised the pool to 44 items in five domains. Finally, we tested it on doctoral writing workshop attendees using factor analysis, Pearson correlations, and Cronbach's Alpha evaluation.
Thirty-six participants completed the DAWNMAHP survey tool: 22 doctoral students, seven early-career researchers, and seven participants on a designated pre-doctoral pathway. Cronbach's Alpha evaluation demonstrated good reliability (α > 0.70) for all five factors. This sample was deemed moderately sufficient (KMO = 0.579), and the items were loaded onto the five factors with all items' factor loadings > 0.5 through principal component analysis.
DAWNMAHP is a novel, reliable tool that measures the impact of writing group interventions on an individual writer's development concerning time management, the writing process, identity, social domains, and relational agency.
Conducting pre- and post-writing group intervention tests and recruiting larger sample sizes is essential to further developing DAWNMAHP. It is a rigorous tool for researching the benefits of writing group interventions. Furthermore, DAWNMAHP is an effective assessment and measurement tool, making a novel contribution to research into doctoral education.
No patient or public involvement was necessary at the validation stage of the DAWNMAHP tool.
by R. Keith Andringa, Nicholas A. Bruni, Jennifer A. Smith, Heather L. Prestridge, Ryan Thornton, Jacquelyn K. Grace
Microplastic pollution has become a global concern and understanding its impact on wildlife requires effective sampling techniques that quantify exposure. In particular, non-lethal sampling techniques are needed for passerines for which microplastic exposure is poorly understood. In this study, we evaluated whether non-lethal proventricular gastric lavage can provide a representative sample of total microplastic ingestion in passerine birds. We sampled Brown-headed Cowbirds (Molothrus ater) (n = 105) from Government Canyon State Natural Area in San Antonio, Texas, United States (US). We performed gastric lavage to recover microplastics from each bird, before euthanizing them and dissecting gastrointestinal tracts. We recovered microplastics from 99% of birds. Gastric lavage recovered an average of 50.4% of ingested microplastics although recovery rate was highly variable (range: 0–100%, coefficient of variation: 59.52%), indicating much uncertainty in estimating individual total microplastic loads from gastric lavage. Sampling date influenced microplastic loads and recovery rates, which may be due to untested microplastic-environment interactions or may be an artifact of sampling conditions. Recovery rate was unaffected by time of day, bird age, sex, or body condition, or microplastic shape. Overall, our findings suggest that gastric lavage provides highly variable estimates of total gastrointestinal microplastics, and may be more appropriate for studies of recently ingested microplastics, only, that should be contained within the proventriculus.To co-identify adaptations with key stakeholders needed to optimise elements of a video-based intervention (i.e., PREEMIE PROGRESS [PP]), which trains parents in evidence-based family management skills to care for their very preterm infant in the neonatal intensive care unit (NICU).
Descriptive qualitative study oriented with a pragmatic philosophy, informed by the reach, effectiveness, adoption, implementation, maintenance (RE-AIM) framework and the framework for reporting adaptations and modifications-expanded (FRAME).
Semistructured interviews to identify potential adaptations with key stakeholders: family management researchers (n = 5), clinicians (n = 9), technology experts (n = 5) and parents of preterm infants (n = 17). Weekly design team meetings to select and implement high-priority adaptations necessary for the next research phase. Monthly NICU parent partnership meetings to review adaptations and make recommendations for potential adaptations with conflicting data.
Stakeholders (N = 36) suggested 98 potential adaptations: 32 (33.0%) were completed, 8 (8.2%) were abandoned, 5 (5.2%) have work that is ongoing and 52 (53.6%) were tabled for future research phases. Content adaptations (70, 71.4%) were the most frequently suggested adaptation type. Potential adaptations mostly addressed RE-AIM dimensions of effectiveness (43, 43.9%), and implementation (46, 46.9%) and were directed at the parent (i.e., intervention recipient) level (79, 81.4%).
Use of the RE-AIM framework ensured we systematically identified needed adaptations with key stakeholders across a range of dimensions that would improve PP for parents now and in future phases of this research.
Co-identifying potential adaptations with key stakeholders, paired with FRAME documentation, can help nurses prioritise adaptations most appropriate for each phase of implementation.
Our paper highlights for nurse clinicians and researchers how FRAME documentation of potential adaptations can support stakeholder engagement and a systematic approach to incorporating adaptations throughout all phases of the research process, thereby shortening the evidence to practice gap.
COREQ guidelines for qualitative reporting.
The research team was supported by members of the NICU's Parent Partnership Council (PPC), whose mission is to promote family-centred care improvement projects and research within the NICU. This committee is comprised of nursing, physician, allied health leadership and parents of infants previously hospitalised in the NICU. The NICU PPC met monthly to review conflicting data on potential adaptations and provide recommendations on adaptation decisions.
Maternal respiratory syncytial virus (RSV) vaccination has been introduced to protect infants from severe respiratory infections. However, its uptake and impact on perinatal outcomes are unknown in the UK.
To evaluate uptake of RSV vaccine during pregnancy in a UK population.
This cross-sectional study was conducted at a tertiary maternity hospital in London. The participants included pregnant women who delivered between 1 September and 17 December 2024 (n=1157). For the analysis of vaccine uptake, the cohort included women eligible for vaccination who delivered beyond 28 weeks’ gestation and were at 36 weeks or less on 1 September 2024 (n=911). The main outcome measures were RSV vaccine uptake and its association with sociodemographic factors, perinatal outcomes including preterm birth (PTB), hypertensive disorders of pregnancy and stillbirth.
Of 911 eligible women, 19% (n=173) received the RSV vaccine during pregnancy. Uptake increased significantly from 4% in September to 32% in December (p
RSV vaccine uptake shows significant increases over time, with disparities in uptake by ethnicity and socioeconomic status. Further research is needed to increase vaccination rates, particularly in disadvantaged groups, and evaluate perinatal outcomes.
To explore oncology nursing advance care planning practices and understand how to better support nurses in conducting advance care planning with patients and their families.
Qualitative interpretive descriptive methodology.
Semi-structured, individual telephone or Zoom interviews with 19 oncology nurses in a Western province of Canada between May and August 2022. Interviews were audio-recorded, transcribed, de-identified, and analysed using inductive, thematic, and constant comparative techniques.
Oncology nurses highlighted several factors affecting their ability to engage in advance care planning, including (1) uncertainties related to the nursing role in advance care planning, such as how and when a nurse ought to engage; (2) the educational, experiential, and training environment; and (3) structural barriers, such as a lack of time, space, and privacy; models of care that inhibit nurses from developing longitudinal relationships with their patients; and team dynamics that affect advance care planning interdisciplinary collaboration.
To create environments that support oncology nurses to conduct advance care planning, the findings suggest uncertainties be addressed through a clear and cohesive organisational approach to advance care planning and ongoing, integrated educational opportunities. Further, service delivery models may need to be restructured such that nurses have dedicated time and space for nurse-led advance care planning and opportunities to develop trusting relationships with both patients and their interdisciplinary colleagues.
Oncology nurses recognised the value of advance care planning in supporting patient-centred care and shared decision making, yet they reported limited engagement in advance care planning in their practice. To support oncology nurses in conducting advance care planning, healthcare leaders may address (1) advance care planning-related uncertainties and (2) structural barriers that prevent nurses from engaging in advance care planning with patients and their families. Findings may guide modifications to care models, enhancing support for oncology nurses in conducting advance care planning.
We selected and adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) as the most applicable guideline.
No patient or public contribution.
The aim of this study was to develop a conceptual understanding of the role of caring for older adults with combined vision and hearing impairment (DSI).
Dual sensory impairment (DSI) impacts both listening and speechreading communication, function and social participation, meaning that older adults often require support and care to ‘age in place’ successfully. Family carers play a key role in supporting older adults with DSI to maintain social and physical health.
This qualitative study uses Charmaz's constructivist grounded theory (GT) methodology. Data were collected between 2017 and 2019 and analysed using constructivist GT methods. Lengthy interviews with eight family carers of older adults living with DSI explored personal histories of DSI, relationships with families, social networks and health care professionals.
This study demonstrates that caring in this context is predominantly social and ‘invisible’. To reduce the social effort of their family member with DSI and to maintain their own self-identity, family carers adopted a ‘conscious caring’ approach. This is conceptualised as an approach to caring that supports family carers to access resources embedded in their social networks by bridging the gap between the dyad and their broader, more diverse social networks.
This study identifies that a reduction in both close and broader social networks limits personal, social and psychosocial resources and impacts the capacity of the dyad to renegotiate their roles, create and maintain their individual and shared social networks and successfully transition to living with DSI.
There is a gap in the literature regarding the impact of sensory impairments on complex communication, health and social care needs of older adults and the role that family carers play. Registered nurses require complex communication skills to support older persons with DSI during health and social care interactions. A better understanding of DSI itself, as well as understanding the key role family carers play in integrating care for their family member, is crucial to delivering person-centred care.
This study addresses a growing social gerontological issue and identifies the role that family carers play in integrating health and social care for their family member with DSI. Better professional recognition of DSI and increased visibility of the challenges of living with DSI could help address barriers to effective communication between service providers, formal care support staff and those with DSI. Integrating family carers into care teams is critical to improving health and social care experiences for both caregiver and care receiver.
This study did not include patient or public involvement in its design, conduct, or reporting.
Persistent pain after finishing breast cancer treatment is a common and disabling problem. The current state-of-the-art pain management advocates, in addition to biomedical (non-)pharmacological approaches, a biopsychosocial rehabilitation approach to address persistent pain, combining pain science education with promoting an active lifestyle through self-regulation techniques. We propose testing an innovative eHealth self-management support programme for this purpose in the breast cancer population with persistent pain after finishing cancer treatment. This delivery mode is believed to reduce barriers to pain self-management by providing timely, safe and cost-effective assistance addressing the biopsychosocial needs of patients. Utilising a chatbot format, the eHealth programme delivers pain science education and promotes physical activity (PA), personalised through decision-tree-based algorithms to support pain self-management. The programme aims to empower patients with understanding, coping skills and self-management techniques to reduce pain-related disability and enhance participation in daily life. The primary objective is to determine programme effectiveness compared with (1) usual care (superiority) and (2) a similar face-to-face pain self-management support programme (non-inferiority).
A pragmatic, three-arm randomised controlled trial was started in April 2024 at the University Hospitals of Antwerp and Leuven and primary care settings in Belgium. Participants are breast cancer survivors with persistent pain after finishing cancer treatment. Two hundred seventy participants will be randomised to one of three trial arms: (1) eHealth self-management support programme, (2) usual care or (3) a face-to-face self-management support programme. The ‘eHealth self-management support programme’ begins with a pain science education (PSE) module to initially convey key pain-related concepts and provide personalised pain management tips. Then, the programme progresses to daily activity planning to promote an active lifestyle. Guided by the Health Action Process Approach (HAPA) model, participants set and review daily activity goals and track progress. The eHealth self-management programme uses a chatbot and is accessible on any digital device. The ‘usual care programme’ involves sending the participants a study-specific brochure by postal mail and does not include any formal PSE and/or PA programmes. They may pursue or continue self-initiated care. In Belgium, usual care primarily involves pharmacological treatment, general advice on PA and the provision of informational brochures. The ‘face-to-face self-management support programme’ mirrors the eHealth intervention, combining PSE with PA coaching. It starts with three individual sessions with a trained physical therapist for biopsychosocial assessment and PSE, followed by six sessions on goal setting and active lifestyle coaching. The educational content is delivered both verbally and in written form. The primary outcome will be pain-related disability 6 months after baseline assessment. As a key secondary outcome, the effect on pain beliefs and attitudes will be investigated after the educational part of the eHealth and face-to-face programme (ie, at 6 weeks after baseline). Other secondary outcomes related to other dimensions of pain and physical-, psychosocial- and health-economic outcomes will be assessed at 12 weeks and 6 and 12 months after baseline as well.
The study will be conducted in accordance with the Declaration of Helsinki (2024). The protocol has been approved by the ethical committee of the University Hospitals of Leuven and Antwerp. Results will be disseminated via peer-reviewed scientific journals and presentations at congresses. Ethical Committee of the University Hospitals Leuven and Antwerp: BUN B3002023000132.
ClinicalTrials.gov Identifier: NCT06308029.
To understand the current capacity and capability for nursing, midwifery and allied health professional (NMAHP) principal investigator roles in England.
Quantitative online survey.
Online national quantitative survey across England analysed using descriptive statistics.
The number of NMAHP PIs in an organisation was unrelated to the size of the NMAHP workforce. NMAHP PIs were more common in non-CTIMP studies. A quarter of organisations had no specific education or support for NMAHP PIs. Most respondents indicated that a national approach to support and training would be helpful.
Having more research-active NMAHPs provides career progression, improved staff retention and improves the evidence base for practice. Having a broader range of CI/PIs allows for more targeted and specialty-specific oversight of research studies and streamlines the acceptance process to allow research to be delivered in a more timely manner.
This will require more collaboration between NMAHP, medical and industry communities to promote a multidisciplinary approach to healthcare research delivery and to ensure that CI/PI roles are fulfilled by the most appropriate person, regardless of their profession.
To ascertain NMAHP capacity and capability for PI research roles. Shows where national and organisational effort should be focused to increase this nationally.
Cross reporting guidance for survey studies was utilised.
No patient or patient contribution.
To identify best practices to prevent violence against healthcare workers by patients at risk for aggression in the adult inpatient setting.
An integrative review.
Conducted using the Johns Hopkins Evidence-based Practice for Nurses and Healthcare Professionals Model. Title and abstract screening on 4186 articles resulted in 156 for full text review. Full text screening yielded 14 articles that met inclusion criteria.
A search of the databases PubMed, CINAHL, Embase, and JBI from January 2019 to February 2023.
The review revealed behavioural intervention teams, environmental changes, and coordinated communication plans were the most used strategies, however none demonstrated significant decreases in violence.
Health systems can implement strategies shown to decrease the incidence of violence in healthcare settings globally. Lack of consistency in the evidence suggests the need for further research to assess mitigating strategies for violence against healthcare workers in inpatient hospital settings.
Patient safety is a cornerstone of nursing practice; however, healthcare workers need to feel safe in their work environment. Violent events are chronically underreported, ill defined, and when reported, do not address change in the practice setting. Identifying strategies to address escalating behaviour before it results in violence is crucial for everyone's safety.
This integrative review exposes the scarcity of evidence available to address rising concerns about patients on healthcare provider violence (Type II) in the workplace. Although several assessment tools for identifying violent patients exist, evidence regarding prevention is woefully absent. The review highlights potential interventions for further study to equip healthcare workers to manage patients safely and effectively before an escalation occurs.
PRISMA checklist for integrative reviews.
No patient or public contribution was part of this review.
Simulation offers a feasible modality to prepare nurses for challenges communicating with patients with dementia. Elderspeak communication is speech that sounds like baby talk and can lead to rejection of care by patients with dementia. However, it is unknown if simulation can be used to capture elderspeak communication in dementia care. The purpose of this mixed-methods study was to determine if simulation accurately captures elderspeak communication by nursing staff in hospital dementia care.
A 3-part mixed-methods design in which (1) three dementia care simulations were designed and validated by a panel of experts, (2) communication by nursing staff completing each simulation was quantitatively compared to communication during actual patient care, and (3) views on the realism were explored using within- and across-case coding.
Three simulations using different modalities (manikin, role-play, and standardised patient) were designed and validated with eight experts using the Lynn Method. Ten nursing staff were audio-recorded and their communication was coded for elderspeak communication. Results for each simulation were compared using Wilcoxon signed-rank test to recordings taken during actual dementia care encounters. Debriefings were coded for realism and results were converged.
The average time using elderspeak during naturalistic care was 29.9% (SD = 20.9%) which did not differ from the average amount of elderspeak used across the three simulations modalities which ranged from 29.1% to 30.4%. Qualitative results suggested a lack of realism with the manikin condition and the nursing staff indicated preference for the simulation with the standardised patient.
Communication elicited in the dementia care simulations was congruent to communication produced in actual dementia care but preference was for the standardised patient.
Elderspeak communication can be accurately produced in the simulated environment which indicates that simulation is a valid method for person-centred communication training in nursing staff.
Simulation offers a feasible modality to prepare nurses for challenges communicating with patients with dementia. Elderspeak communication is speech that sounds like baby talk and can lead to rejection of care by patients with dementia. However, it is unknown if simulation can be used to capture elderspeak communication in dementia care. Elderspeak communication captured in the simulated environment was congruent to communication nursing staff use during actual patient care to hospitalised persons living with dementia. This study empirically identifies that communication is elicited in similar patterns by nursing staff in the simulated environment compared to the naturalistic care environment which demonstrates that simulation can be used as a valid tool for education and research on person-centred communication.
STROBE.
No Patient or Public Contribution.
To determine the frequency, timing, and duration of post-acute sequelae of SARS-CoV-2 infection (PASC) and their impact on health and function.
Post-acute sequelae of SARS-CoV-2 infection is an emerging major public health problem that is poorly understood and has no current treatment or cure. PASC is a new syndrome that has yet to be fully clinically characterised.
Descriptive cross-sectional survey (n = 5163) was conducted from online COVID-19 survivor support groups who reported symptoms for more than 21 days following SARS-CoV-2 infection.
Participants reported background demographics and the date and method of their covid diagnosis, as well as all symptoms experienced since onset of covid in terms of the symptom start date, duration, and Likert scales measuring three symptom-specific health impacts: pain and discomfort, work impairment, and social impairment. Descriptive statistics and measures of central tendencies were computed for participant demographics and symptom data.
Participants reported experiencing a mean of 21 symptoms (range 1–93); fatigue (79.0%), headache (55.3%), shortness of breath (55.3%) and difficulty concentrating (53.6%) were the most common. Symptoms often remitted and relapsed for extended periods of time (duration M = 112 days), longest lasting symptoms included the inability to exercise (M = 106.5 days), fatigue (M = 101.7 days) and difficulty concentrating, associated with memory impairment (M = 101.1 days). Participants reported extreme pressure at the base of the head, syncope, sharp or sudden chest pain, and “brain pressure” among the most distressing and impacting daily life.
Post-acute sequelae of SARS-CoV-2 infection can be characterised by a wide range of symptoms, many of which cause moderate-to-severe distress and can hinder survivors' overall well-being.
This study advances our understanding of the symptoms of PASC and their health impacts.