Mir Ghazala, Mullard Jordan, Parkin Amy, Lee Cassie, Clarke Jonathan, De Kock Johannes H, Prociuk Denys, Darbyshire Julie L, Evans Sophie, Sivan Manoj
Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
Population Health Sciences Institute, Newcastle University, Newcastle, UK; Gateshead HDRC, Gateshead Council, Gateshead, UK; University of Johannesburg, Johannesburg, South Africa.
Health Expect. 2025 Aug;28(4):e70336. doi: 10.1111/hex.70336.
BACKGROUND: Long Covid (LC) significantly impacts health, economic and social activities. Women, deprived, learning disability, homeless and some minority ethnic populations have high prevalence rates but low access to support, indicating health inequities in LC care. AIM: To identify health inequities in LC care and inclusion strategies that align with the priorities of people with LC. DESIGN AND SETTING: Mixed-methods study employing qualitative data from people with LC, professional experts, LC clinic staff and primary care data from North West (NW) London GPs. METHOD: Qualitative interviews with 23 people with LC and 18 professional experts explored the experience of diagnosis and support for people from disadvantaged groups. Framework analysis identified themes that informed the subsequent collection of clinic and primary care data. Staff from 10 LC clinics across England provided survey and qualitative data describing their initiatives to identify and reduce inequalities. Descriptive quantitative analysis of NW London adult primary care records (n = 6078), linked to hospital use across England, explored LC diagnosis and care pathways for diverse groups of people with LC. RESULTS: Study participants from disadvantaged groups reported delays in formal diagnosis and specialist referrals being initated and had low trust in healthcare services. They described difficulties in obtaining information, advice and support as barriers to access specialist referrals. LC clinics confirmed the under-referral of those from the most disadvantaged groups compared to the general population. Primary care data confirmed under-referral of people with LC to specialist clinics; however, incomplete data across the LC clinical pathway prevented an analysis of equity in referral patterns between population groups. Clinics used various strategies to improve access and increase the flow of disadvantaged groups from primary care to LC services. Interventions included data collection to identify underserved groups, targeting outreach to primary care and community providers, adapting clinic provision and developing care pathways involving multidisciplinary teams (MDTs), primary and secondary care practitioners and third sector organisations. These activities were not widespread, however, and were particular to a few clinics. CONCLUSION: Strategies to improve access to LC healthcare provide a starting point to explore inclusive care pathways for people with LC from disadvantaged social groups. Future research should focus on the effectiveness of initiatives to increase access to specialist LC provision among disadvantaged groups and establish greater trust in healthcare providers. PRIORITIES OF PEOPLE WITH LC FOR HEALTHCARE PRACTICE: This study highlights the need for health system practitioners to identify under-represented groups and target inclusion initiatives at these populations in sensitive and appropriate ways. Improved diagnosis and support for such populations would be helped by training health and social care practitioners to recognise and accept the accounts of people with LC about their symptoms. Protocols that support consistent practice in referrals for specialist care are also needed. People with LC from disadvantaged groups often lack access to evidence-based sources of advice and information. Practitioners should provide information on LC while individuals are waiting to receive specialist care and should advocate for support from employers, including work modifications. PATIENT AND PUBLIC CONTRIBUTION: People with lived experience of LC were involved in the study as members of the research team and LOCOMOTION Patient Advisory Group (PAG). The PAG was involved in the wider study design, including the initial grant application, attending proposal planning meetings and helping to develop the research aim, objectives and questions. During the course of the study, the PAG met quarterly with each other and at least monthly with other research team members to review progress and feed into data collection and analysis processes. PAG members also attended a Quality Improvement Collaborative meeting involving academics and LC practitioners, which discussed initial findings from data analysis of qualitative interviews on LC inequalities. Through these meetings, the group supported and oversaw the study as a whole in terms of how data was collected, recruitment of participants, involvement in data analysis and interpretation, as well as providing more specific advice to all the individual workstreams within the study. A PPI facilitator within the study team provided training and support to PAG members in these areas and was available to respond to other needs expressed by the group. PAG members have also been involved in organising and contributing to a wide range of study dissemination events. PAG involvement throughout the study has ensured that the research is aligned with the key research priorities of people diagnosed with LC as well as those with LC symptoms but no formal diagnosis. PAG members were recruited through and linked to the LC clinics involved in the study and have helped disseminate study findings to local clinical practice, the lay public and other LC centres with which they are involved. S.E. is a PAG member from a minority ethnic background and a co-author on the paper. She has been involved in overseeing and supporting data collection and interpretation relating to inequalities affecting people with LC and has contributed to the preparation of this manuscript from an early draft to production of the final version.
背景:长期新冠(LC)对健康、经济和社会活动产生了重大影响。女性、贫困人群、学习障碍者、无家可归者以及一些少数族裔人群的患病率较高,但获得支持的机会却很少,这表明在LC护理方面存在健康不平等现象。 目的:确定LC护理中的健康不平等现象以及与LC患者优先事项相一致的纳入策略。 设计与背景:采用混合方法研究,收集来自LC患者、专业专家、LC诊所工作人员的定性数据以及伦敦西北部全科医生的初级护理数据。 方法:对23名LC患者和18名专业专家进行定性访谈,探讨弱势群体的诊断和支持体验。框架分析确定了相关主题,为后续收集诊所和初级护理数据提供了依据。来自英格兰10家LC诊所的工作人员提供了调查和定性数据,描述了他们为识别和减少不平等现象所采取的举措。对伦敦西北部成人初级护理记录(n = 6078)进行描述性定量分析,并与全英格兰的医院使用情况相关联,以探索不同LC患者群体的诊断和护理途径。 结果:来自弱势群体的研究参与者报告称,正式诊断和专科转诊存在延迟,并且对医疗服务的信任度较低。他们将获取信息、建议和支持方面的困难描述为获得专科转诊的障碍。LC诊所证实,与普通人群相比,最弱势群体的转诊率较低。初级护理数据证实了LC患者向专科诊所的转诊率较低;然而,LC临床路径中不完整的数据妨碍了对不同人群转诊模式公平性的分析。诊所采用了各种策略来改善服务可及性,并增加弱势群体从初级护理转向LC服务的流量。干预措施包括收集数据以识别服务不足的群体、针对初级护理和社区提供者进行外展服务、调整诊所服务以及制定涉及多学科团队(MDT)、初级和二级护理从业者以及第三部门组织的护理路径。然而,这些活动并不普遍,且仅限于少数诊所。 结论:改善LC医疗服务可及性的策略为探索弱势群体LC患者的包容性护理路径提供了一个起点。未来的研究应侧重于增加弱势群体获得专科LC服务的举措的有效性,并在医疗服务提供者中建立更高的信任度。 LC患者对医疗实践的优先事项:本研究强调卫生系统从业者需要识别代表性不足的群体,并以敏感和适当的方式针对这些人群开展纳入举措。培训卫生和社会护理从业者认识并接受LC患者对其症状的描述,将有助于改善对此类人群的诊断和支持。还需要支持专科护理转诊中一致做法的协议。来自弱势群体的LC患者往往无法获得基于证据的建议和信息来源。从业者应在患者等待接受专科护理期间提供有关LC的信息,并应倡导雇主提供支持,包括工作调整。 患者和公众贡献:有LC实际经历的患者作为研究团队成员和LOCOMOTION患者咨询小组(PAG)参与了研究。PAG参与了更广泛的研究设计,包括最初的资助申请、参加提案规划会议以及帮助制定研究目的、目标和问题。在研究过程中,PAG成员每季度相互会面,并且至少每月与其他研究团队成员会面,以审查进展情况并为数据收集和分析过程提供意见。PAG成员还参加了一次涉及学者和LC从业者的质量改进协作会议,该会议讨论了关于LC不平等现象的定性访谈数据分析的初步结果。通过这些会议,该小组在数据收集、参与者招募、数据分析和解释参与以及为研究中的所有个别工作流提供更具体建议等方面,对整个研究提供了支持和监督。研究团队中的一名PPI协调员在这些领域为PAG成员提供培训和支持,并随时准备回应该小组表达的其他需求。PAG成员还参与组织并为各种研究传播活动做出贡献。PAG在整个研究过程中的参与确保了研究与被诊断为LC以及有LC症状但未正式诊断的患者的关键研究优先事项相一致。PAG成员通过参与研究的LC诊所招募而来,并与这些诊所相关联,他们帮助将研究结果传播到当地临床实践、普通公众以及他们所参与的其他LC中心。S.E.是一名来自少数族裔背景的PAG成员,也是本文的共同作者。她参与了监督和支持与影响LC患者的不平等现象相关的数据收集和解释工作,并从初稿到最终版本的制作过程中为本文的撰写做出了贡献。
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