RESUMEN
OBJECTIVE: To investigate current care for people with Long COVID in England. DESIGN: In-depth, semistructured interviews with people living with Long COVID and Long COVID healthcare professionals; data analysed using thematic analysis. SETTING: National Health Service England post-COVID-19 services in six clinics from November 2022 to July 2023. PARTICIPANTS: 15 healthcare professionals and 21 people living with Long COVID currently attending or discharged (18 female; 3 male). RESULTS: Health professionals and people with lived experience highlighted the multifaceted nature of Long COVID, including its varied symptoms, its impact on people's lives and the complexity involved in managing this condition. These impacts encompass physical, social, mental and environmental dimensions. People with Long COVID reported barriers in accessing primary care, as well as negative general practitioner consultations where they felt unheard or invalidated, though some positive interactions were also noted. Peer support or support systems proved highly valuable and beneficial for individuals, aiding their recovery and well-being. Post-COVID-19 services were viewed as spaces where overlooked voices found validation, offering more than medical expertise. Despite initial challenges, healthcare providers' increasing expertise in diagnosing and treating Long COVID has helped refine care approaches for this condition. CONCLUSION: Long COVID care in England is not uniform across all locations. Effective communication, specialised expertise and comprehensive support systems are crucial. A patient-centred approach considering the unique complexities of Long COVID, including physical, mental health, social and environmental aspects is needed. Sustained access to post-COVID-19 services is imperative, with success dependent on offering continuous rehabilitation beyond rapid recovery, acknowledging the condition's enduring impacts and complexities.
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COVID-19 , Investigación Cualitativa , SARS-CoV-2 , Humanos , COVID-19/epidemiología , COVID-19/terapia , Inglaterra , Masculino , Femenino , Persona de Mediana Edad , Anciano , Adulto , Entrevistas como Asunto , Accesibilidad a los Servicios de Salud , Atención Primaria de Salud/organización & administración , Síndrome Post Agudo de COVID-19 , Personal de Salud/psicología , Medicina EstatalRESUMEN
BACKGROUND: The use of digital health interventions (DHIs), such as apps and wearable devices, for prevention and management of cardiometabolic disease, has been accelerated by the impact of COVID-19 on health-care services. Digital inequalities disproportionately affect those most at risk of wider health inequalities (e.g., older age, minority ethnicity, and lower household income) and might intersect with populations with higher cardiometabolic disease risk such as South Asians in the UK. We wanted to understand how those involved in DHI implementation perceive and address these inequalities, to help develop recommendations to reduce the risk of DHI implementation exacerbating existing health inequalities. METHODS: For this qualitative study we used a purposive sampling strategy, whereby focus groups and semi-structured interviews were done online between April 7 and Dec 8, 2022, with stakeholders, including health-care professionals (n=15); technology developers and digital experts (n=10); those in strategy, evaluation, or policy roles (n=15); and charities (n=4). Discussions covered barriers and facilitators to inclusive design and implementation of DHIs, with focus dependent on expertise. Findings from a qualitative study with South Asian patients have been reported separately. Audio recordings were transcribed and coded using reflexive thematic analysis. Participants provided written consent and the study received NHS Health Research Authority approval from London - Brent Research Ethics Committee (IRAS 261047). FINDINGS: Participants had a good understanding of barriers to DHI use for cardiometabolic disease faced by South Asians, highlighting the need to design for language, culture, and diet. Many emphasised the link between digital exclusion and socioeconomic deprivation, across all ethnic groups in the UK. The potential for DHIs in improving patient outcomes was recognised; however, equity concerns included unequal patient access, lack of data and resources to target support, and need for quality evidence to recommend and commission digital tools. A range of solutions for improving equity were suggested such as resourcing support for digital upskilling, community engagement, and the role of regulation in embedding improved design and evaluation of DHIs available through health-care services. INTERPRETATION: This study reflects the experiences of professionals interested in (digital) health inequalities. However, challenges to equitable digital health implementation and use are well described. Our findings present multi-sectoral responsibilities and opportunities for action. FUNDING: National Institute for Health and Care Research (NIHR).
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Enfermedades Cardiovasculares , Salud Digital , Disparidades en Atención de Salud , Síndrome Metabólico , Humanos , Pueblo Asiatico , Enfermedades Cardiovasculares/etnología , Enfermedades Cardiovasculares/prevención & control , Etnicidad , Grupos Minoritarios , Investigación Cualitativa , Síndrome Metabólico/etnología , Síndrome Metabólico/prevención & control , Salud Digital/ética , Disparidades en Atención de Salud/etnologíaRESUMEN
OBJECTIVES: To describe self-reported characteristics and symptoms of treatment-seeking patients with post-COVID-19 syndrome (PCS). To assess the impact of symptoms on health-related quality of life (HRQoL) and patients' ability to work and undertake activities of daily living. DESIGN: Cross-sectional single-arm service evaluation of real-time user data. SETTING: 31 post-COVID-19 clinics in the UK. PARTICIPANTS: 3754 adults diagnosed with PCS in primary or secondary care deemed suitable for rehabilitation. INTERVENTION: Patients using the Living With Covid Recovery digital health intervention registered between 30 November 2020 and 23 March 2022. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was the baseline Work and Social Adjustment Scale (WSAS). WSAS measures the functional limitations of the patient; scores of ≥20 indicate moderately severe limitations. Other symptoms explored included fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue), depression (Patient Health Questionnaire-Eight Item Depression Scale), anxiety (Generalised Anxiety Disorder Scale, Seven-Item), breathlessness (Medical Research Council Dyspnoea Scale and Dyspnoea-12), cognitive impairment (Perceived Deficits Questionnaire, Five-Item Version) and HRQoL (EQ-5D). Symptoms and demographic characteristics associated with more severe functional limitations were identified using logistic regression analysis. RESULTS: 3541 (94%) patients were of working age (18-65); mean age (SD) 48 (12) years; 1282 (71%) were female and 89% were white. 51% reported losing ≥1 days from work in the previous 4 weeks; 20% reported being unable to work at all. Mean WSAS score at baseline was 21 (SD 10) with 53% scoring ≥20. Factors associated with WSAS scores of ≥20 were high levels of fatigue, depression and cognitive impairment. Fatigue was found to be the main symptom contributing to a high WSAS score. CONCLUSION: A high proportion of this PCS treatment-seeking population was of working age with over half reporting moderately severe or worse functional limitation. There were substantial impacts on ability to work and activities of daily living in people with PCS. Clinical care and rehabilitation should address the management of fatigue as the dominant symptom explaining variation in functionality.
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COVID-19 , Calidad de Vida , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Actividades Cotidianas , COVID-19/complicaciones , Estudios Transversales , Fatiga/etiología , Síndrome Post Agudo de COVID-19 , Adolescente , Adulto Joven , AncianoRESUMEN
BACKGROUND: Evidence suggests that successful assessment and care for frail individuals requires integrated and collaborative care and support across and within settings. Understanding the care and support networks of a frail individual could therefore prove useful in understanding need and designing support. This study explored the care and support networks of community-dwelling older people accessing a falls prevention service as a marker of likely frailty, by describing and comparing the individuals' networks as perceived by themselves and as perceived by healthcare providers involved in their care. METHODS: A convenience sample of 16 patients and 16 associated healthcare professionals were recruited from a community-based NHS 'Falls Group' programme within North-West London. Individual (i.e., one on one) semi-structured interviews were conducted to establish an individual's perceived network. Principles of quantitative social network analysis (SNA) helped identify the structural characteristics of the networks; qualitative SNA and a thematic analysis aided data interpretation. RESULTS: All reported care and support networks showed a high contribution level from family and friends and healthcare professionals. In patient-reported networks, 'contribution level' was often related to the 'frequency' and 'helpfulness' of interaction. In healthcare professional reported networks, the reported frequency of interaction as detailed in patient records was used to ascertain 'contribution level'. CONCLUSION: This study emphasises the importance of the role of informal carers and friends along with healthcare professionals in the care of individuals living with frailty. There was congruence in the makeup of 'patient' and 'provider' reported networks, but more prominence of helper/carers in patients' reports. These findings also highlight the multidisciplinary makeup of a care and support network, which could be targeted by healthcare professionals to support the care of frail individuals.
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Fragilidad , Vida Independiente , Humanos , Anciano , Anciano Frágil , Fragilidad/diagnóstico , Fragilidad/epidemiología , Fragilidad/terapia , Personal de Salud , CuidadoresRESUMEN
BACKGROUND: Frail individuals are at risk of significant clinical deterioration if their frailty is not identified and managed appropriately. Research suggests that any interaction between an older person and a health or social care professional should include an assessment for frailty. Many older care home residents are frail when admitted, but we have little knowledge of whether or how this is assessed. The aim of this paper is to understand and establish the characteristics of the reported 'assessments for frailty' used in care homes with nursing (nursing homes) across North-West London. This will help understand what an 'assessment for frailty' of care home residents mean in practice in North-West London. METHODS: Telephone contact was made with every Care Quality Commission (CQC) (independent regulator of health and adult social care in England) regulated nursing home across North-West London [n = 87]. An online survey was sent to all that expressed interest [n = 73]. The survey was developed through conversations with healthcare professionals, based on literature and tested with academics and clinicians. Survey responses were analysed using descriptive statistics. The Mann-Whitney U test was used for statistical analyses. RESULTS: 24/73 nursing homes completed the survey (33%). Differences in the characteristics of reported 'assessments for frailty' across nursing homes were evident. Variation in high level domains assessed (physical, social, mental and environmental) was observed. Nurses were the most common professional group completing assessments for frailty, with documentation and storage being predominantly paper based. A statistically significant difference between the number of assessments used in corporate chain owned nursing homes (3.9) versus independently owned nursing homes (2.1) was observed (U = 21, p = .005). CONCLUSIONS: Great variation existed in the characteristics of reported 'assessments for frailty' in nursing homes. Our study suggests that not all physical, social, mental and environmental domains of frailty are routinely assessed: it appears that frailty is still primarily viewed only in terms of physical health. The consequences of this could be severe for patients, staff and healthcare settings. Research illustrates that frailty is a broad, multifactorial health state and, as such, an overall 'assessment for frailty' should reflect this.